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I am 24 yrs old and was wondering whether there is anyone of a
similar age with pa to talk to as there isn't anyone my age I know
who can relate to the way i feel due to pa. i had been an active
person until about a year ago, when pa flared up, and would like to
know what would be the best way of dealing with it and getting on
with a normal life.

Here is one good reason to always go to a pharmacist you personally
know rather than the large chain pharmacies where you get a different
pharmicist everytime - especially when refilling any narcotic
painkillers!
From: http://snurl.com/nkm
===================== Begin Quote =====================
TACOMA, Wash. (AP)--A woman with a brain tumor filed a lawsuit
against Walgreens, saying when she arrived to pick up her painkiller
prescription one day, a pharmacist had her arrested.
In a lawsuit filed Thursday in Pierce County Superior Court, Shannon
O'Brien, 35, said she went to the drive-up window at a Walgreen Drug
Store two blocks from her home last July 7. The pharmacist on duty
thought she had faked her Percocet prescription and called police,
the lawsuit stated.
"I was in hysterics--crying, very upset and very embarrassed,"
O'Brien told The Associated Press on Thursday. "They could have
checked my records. I've had the same medicine every month."
A woman who answered the phone at the pharmacy Thursday directed
inquiries to the Walgreen's regional office in Bellevue, where a
telephone message was not immediately returned. A spokeswoman based
at Walgreen Co. headquarters in Deerfield, Ill., said Friday she
could not comment on pending litigation.
O'Brien's lawyer, Mike Withey, said he didn't know what led the
pharmacist to suspect O'Brien of faking her prescription. According
to the lawsuit, when the pharmacist called the University of
Washington Medical Center's neurosurgery department to ask about it,
he was told O'Brien's doctor, Alexander Spence, was unavailable, so
the prescription couldn't be confirmed right away.
That's when the pharmacist called Tacoma police, the lawsuit said.
O'Brien was still sitting in her car at the drive-up window when they
arrived.
O'Brien, who was first diagnosed with a brain tumor in 1994, said she
told the officer who handcuffed her that he could call her doctor or
her nurse to verify the prescription.
"I told him I had brain cancer, and I had a medical information card
inside my wallet," she said. "It didn't matter to him. He didn't
believe anything I was telling him."
O'Brien's family posted bail that night, but she was still without
her medicine. She was arraigned the next day; as a condition of her
release, she was required to attend a session at a drug treatment
facility.
Her lawyer eventually succeeded in getting the felony prescription
fraud charge dropped--after her doctor provided confirming
information to the Pierce County prosecutor's office.
The pharmacist was not immediately reachable by telephone for comment
Thursday evening.
AP-NY-01-24-03 1510EST
Copyright 2003, The Associated Press. The information contained in
the AP Online news report may not be published, broadcast or
redistributed without the prior written authority of The Associated
Press.

Just like most of you, I was tired all the time
because of the meds (Enbrel and Meth.), in pain, and
depressed because of the "limitations" in my life.
Plus I was a little overweight, result of the
depression and sedentary life. A couple a weeks ago I
talked to my g.p. and now I'm not feeling tired, or
depressed and I am loosing weight and exercising, all
thanks to a diet pill, Adipex. It's a short term
solution, since it shouldn't be taken for over 8 weeks
at a time, but for those of you who do not have a
heart condition or high blood pressure, it's worth the
try. I rather have 2 months of a normal life again
than not having it at all...
Ps: In my case, just half a pill in the morning does
the trick for the rest of the day...
Carla

Hi Everybody:
I thought you might be interested in the alternatives therapies that
I am now trying upon the advice of an MD who beleives in
complimentary alternative medicine. He initially advised me to start
taking Omega 3 oils 2 gms daily. Within a week I noticed improvement
in my joint pain and fatigue. I noticed a change in my skin in about
48 hours. (My daughters are now using the product for their skin as
well.) Upon his advice I have increased the Omega 3 to a total of 3
gms daily. I then added 1500 mg of Glucosamine one month later. The
improvement continued. For anti-inflamatory effect, he recommended
Yucca supplement. I follow the label recommendations: 4 capsules
daily. We also added 1000mg of MSM. I have now been able to get of
the Vioxx daily and when I am achy I am able to take OTC Aleve (
about 3 times per week). I remain on doxycycline 200 mg 3 x wk. The
change in my condition has allowed me to resume exercising at a
fitness center. I walk 1-1.5 miles 3-4 times per week on a treadmill
and perform stretching exercises. I have also found that 15-20
minutes in a steam room has really been beneficial. I had to give up
the Tae Kwon Do about 6 months ago due to severe pain in my knees and
hips. I was really feeling pretty down about the deterrioration of my
physical abilities. I am ver happy with the change.
Charlene :-)

A question for the ones using vaseline on your feet everynite. Does your feet
feel like they are on fire after you apply the vaseline?.

I have a story with a happy ending to share. The joint of my left
thumb where it meets the hand has been swollen for almost a year,
distorting the joint. My rheumy's Physician's Assistant had made a
passing remark about 2 months ago that this was due to bone growth.
I did not know what that meant. It was that remark that trigged my
getting into this discussion group a few weeks ago.
If correct, this would be a different phase for my PA, as I have not
had bone enlargement before. Frankly, I was very discomforted by the
thought of what this might mean for the disease progression.
I learned some things from being in the group and from sources that
some in the group pointed me to. One of those things was that bone
enlargement should not be ignored and may require different
treatments than I have been on.
I happen to see my PCP about another matter this past Monday. While
there, I asked about my thumb. He too said that it looked like bone
enlargement and that I should get back to the rheumy. I exchanged e-
mails (through the secure system they have set up) with the rheumy,
expressing my concern that if this was bone enlargement, I would like
additional treatments to be considered. He agreed and I saw both the
rheumy and his Physician's Assistant today. They did an X-ray and
concluded that the bone had not enlarged! I had a severe case of
swollen soft tissue. We agreed to try a cortisone injection, which
they gave me right away. We'll see how well this works over the next
couple of weeks.
In the mean time, I am so happy to hear that my bone had not
enlarged. It means I can continue on my current medications, which
otherwise, have worked well for me.
I am not a shy patient, but I needed more information to know what to
even ask about. I want to thank all those who provided me assistance
by responding to my postings. It allowed me to push back and obtain
the service I needed.
[Ed. Note: Bone "spurs" can also be a problem with inflammatory arthritis. I
have no idea what causes them, but an X-ray of my jaw reveals several of them.
Ron]

I don't usually forward these things but I think it is relevent and certainly is
good advice.

There is a product produced by Eucerin called Aquaphor healing ointment. It is
specifically for cracked, dry skin and burns. It is dermatologist recommended
and helps to reduce healing time. I don't have psoriasis but my hands get very
dry and the skin cracks. I also get dry skin on my feet. When it gets really
bad before I go to bed I put a bunch of this ointment (kinda has a vaseline
texture) and then I put cotten moisture gloves and socks on to keep the moisture
in. For psoriasis in other areas you could put the ointment on and wrap the
area with guaze until it is absorbed in the skin. Works pretty well for me. I
would imagine it would be good for psoriasis too. It is also free of fragrances
so it won't irritate the skin. You can buy it at any grocery store or pharmacy.
Hope this helps.
Leslie

Leslie,
What a small world. I have a cousin who just graduated from La Porte. I
have relatives that live off of 1960 in Houston, Grandparents in Texas City,
brother in Austin, Aunts in Dallas and San Antonio. I went to UT and moved
to SC in 1994 and NC this past July. Texas is home! I miss the weather and
the BBQ!!
Christina
Hickory, NC
Hook'em Horns!

Hi Stephanie,
I use the e oil and it does bring relief although it
still looks bad. Since you live in Florida as well,
going to the beach is still the best med. I rarely go
because people stare at my skin and I'm stupid enough
to let it bother me, but when I do go, I always feel
better,
Carla

Kristin,
I recently went to the UK and Portugal with my Enbrel (and my suitcase full
of all my other meds). I had my dr. write a letter stating that it was
necessary for me to bring my medication as a carry-on item since it has to
be kept at a certain temperature. Also, when I did the check-in for the
flight I had to inform the airline that I was carrying syringes on board.
During the security checks in the states they actually looked at my Enbrel
pack and my dr.'s note. However, while I was in Europe they didn't check.
Hope this helps.
Leslie

Hello,
I know this is totally off topic and I'm sorry if there are any cross
postings... but can any one give me advice on how to start a home business?
Brian is really good at electrical, painting, drywalling.... kinda like
maintenance type stuff... but I'm not sure how to get the business going, or how
to get jobs coming in. Can anyone give me any suggestions? I wish we could get
it going and I could stay home... with my health lately, it would do wonders for
me!!
Melissa

Christina
No, I am not from Texas City, TX
I was born in Chelmsford, England and I have lived in the USA for 24
years.
My daughter lives south of Houston, not so far from Texas City - but I
don't know Kevin Bacon ;-)
David

Hello all...Sorry I have been lurking so much, with getting bigger and all and
this seat is not very comfortable , I have not been getting on as much...I do
check my mail...Things are going great for us...The baby is fine and actually
measuring a bigger size than supposed to be so that is good...As of right
now...The sono tech is not 100% sure, but according to what she saw last week
she is thinking the baby is a girl, but the baby wouldn't cooperate 100% so I am
gonna see if I can get one more sono between now and when I have it...I am 21
weeks this week...So all is going good...Oh and the baby is now kicking so I can
feel the movements pretty good...:) Talk to you guys later...Love and God
Bless, Pam

Kim,
I had carpal tunnel surgery last may and had to come off my Enbrel injections
for (I believe) a week before I had the surgery and 2 weeks after. My dr. was
worried about the increased risk of infection associated with Enbrel. I know
that was minor compared to the surgery you're considering. Also, I am a slow
healer (hence my being sick for 2 months now).
Best of luck!
Leslie

Thanks Ron! You always have good advice. I will definately go to the urgent
care center next time I get one of those headaches. I can't go through that
pain again. The neurologist said that it could either be a migraine headache
(since I do vomit quite violently sometimes but not everytime I get a headache)
or it could be associated with a head trauma I had in a car accident when I was
16. The headaches began after the accident so it could be possible. He also
said that it could be that I have some problems with a disc in my neck or a
pinched nerve. I have had neck and back pain since the accident as well. Since
I only get the headaches every 1-3 months he said he didn't want to add another
med to my regime. In fact he is taking me off the neurontin. I am glad to
finally find a dr. who thinks it is best to stay on the least possible amount of
drugs.
take care,
Leslie

Hello all,
I was just wondering if anyone has ever gotten a
DEPO-MEDROL(Methylprednisolone) steroid injection. In
addition to PA, I also have medial
epicondilitis(Tennis Elbow) in both arms and my rheumy
gave me a subcutaneous injection right near the inner
elbows where the pain is the worst. I'm curious what
side effects if any, I might experience from just a
one time injection. I just read on one medical site
that one injection of Depo-Medrol is the equivalent of
taking 10mg of oral prednisone for an entire month.
I've never taken oral prednisone or any other steroids
other than topicals for the psoriasis, but I know many
people have, so my question is what kind of side
effects do people usually encounter when taking either
oral or injected cortisone steroids.
Thank you very much,
Mike

I rang my rheumatologist's secretary about my pain relieving infusion, so she
could inform my rheumatologist who would not yet be aware of this urgent
treatment from the pain specialist. My rheumatologist rang me personally at 9
pm that evening, expressing his concern. He will await the pain specialist's
report but offered me great understanding and support. It was more like a
telephone call from a friend, rather than my rheumatologist. He said to ring
him day or night (giving me his private number) if I needed anything, such as
more Oxycontin or such like. He said he regrets that his hands are tied as
nothing further can be done, the spinal degeneration/damage is beyond surgery,
and it is a matter of trying to slow it down and keep me comfortable. He joked
that I really needed a spinal transplant.
I needed something like this, as my determination and resolution is beginning to
falter. I need to now plunge back into my work as a volunteer advocate of the
Arthritis Foundation of Australia to take my mind off things.
Regards, Gordon

I am now experiencing joint damage. How bad does your PA have to be to
be prescribed Enbrel? My appt with my Rheumatologist is soon. Do your
experiences reflect a willingness of doctors to prescribe this new
drug. It sounds like Enbrel would be efffective against my disease. I
would appreciate any input on this. I was diagnosed with PA four years
ago.
Thank you. Savannah
[Ed. Note: My personal view is that Enbrel is (or should be) used to *prevent*
joint damage, because once the damage is done, nothing (short of surgery) can
correct it. If your rheumy refuses to put you on Enbrel, then you're probably
better off in the long run to drop him and switch to a rheumatologist who will
prescribe it - at least that's my opinion. Ron]

Tiffany, Ks Di, and Ron--
I'm 5'4", so at 345 pounds I have a body mass index (BMI) of 59%. "Normal"
is 20-25%. I've been overweight most of my life, so I'm doubtful that my
skin would bounce back. The skin can be surgically removed after I have lost
weight. I'm 31 years old and am pre-diabetic (and had gestational diabetes
during pregnancy so I'm bound to become a full-fledged diabetic someday),
hypertensive, suffer from gastric reflux disease and sleep apnea, which I'm
having a sleep study done on January 24 for so that they will provide me with
a CPAP machine and I don't stop breathing at night and waking the dead with
my snoring anymore.
I have caused myself to be obese over the course of my adult life, I take
full responsibility for that. However, there are other factors--I've been on
disability for over 3 years for my PA. I'm not very active because of the
PA, although I have attempted to exercise and lose weight in various ways
before and after my PA diagnosis. They did not work for me. This is not a
quick fix, as Ks Di suggested. This *is* a lifestyle change. You are
required to consult with many doctors to even be approved for surgery--a
psychologist has to clear you, you are required to attend support meetings so
that you have complete understanding of what you are undertaking. You have
to have had unsuccessful attempts at supervised weight loss, whether Weight
Watchers, TOPS, or your personal physician. The majority of people who have
this surgery have co-morbidities like I do. This is a last resort. You have
to follow a very specific regime for the rest of your life, and exercise
daily to get the weight off--the surgery only jump starts the weight loss so
that the exercise comes more easily. I certainly need that boost. You aren't
doing this to look good, you are doing this to live. I have children, and I
want to live to see them have their own kids.
I don't know how long ago Ron's friend had her surgery, or if it is even the
kind I'm hoping to have; there are several different surgeries and they are
performed differently than they used to be. It's unfortunate that she had
such a negative experience, but I have researched this for a long time and
feel that it's the right thing for me to do. I belong to six separate
support groups online for the weight loss surgery, so I hope to know
everything there is to know about it.
I suppose that when I wrote my original post, I should have been more
specific with my question. My concern is the ability I'll have to heal after
surgery with my suppressed immune system. Has anyone had any kind of
surgery, with or without complications such as illness, and recovered well?
Did you have to stop your PA meds? I'm sure my rheumy is the best person to
ask but I thought I'd try this forum as well.
I hope that I don't sound angry or bitter. I don't mean to. Obviously my
weight has been a lifelong issue for me and therefore very personal and
emotional. To have made this big decision and feel comfortable with it alone
has been a big deal, but then to have it questioned in any way is a sore
spot. Thank you for sharing your questions and concerns.
Kim in FL

Thanks for all of the post letting me know I probably would not have
any problems with injection site reactions.
I have only had one injection, in the top of my leg. I had no
reaction.
Mt wife is, and has been an IV therapist for about 20 years now. Yes
the needle was a little dull, but went in fine. It is great having a
nurse for a wife :-)
Not only does she do all of my injecting (MTX and Enbrel), she is
understanding to all of the pain I am in.
I will finally go back to my Rheumy on Tuesday. I have been waiting
about 2 months for this appointment.
I am also going to my Cardiologist on Monday. I have high blood
pressure, and high colesterol. I have been having some minor pains,
and my wife is insistant on me going to get another complete work
over.
Thanks again, and isn't this group just the most wonderful place in
the world?!!!!!!!!!!!
Note to Scott from Michelle, Group founder- Thank you so much for the
compliment. It makes me feel really good that the list has taken off
in the right direction and grown so beautifully with such beautiful
members over the last three years. We have been truly blessed.
Scott in Atlanta, GA

Well after a couple of months battling with the Insurance company (a
long story) I will begin my Enbrel injections tomorrow (Thursday)
evening. I have read so much about the site reaction's, I am
wondering what, if anything do you or can you put on the injection
site ie. creams, lotions, ice etc... to keep the reaction down.
I am only assuming that I will have a reaction.
I have been on MTX for over a year, and have never had any kind of
reaction, although I know they are 2 totally different things.
BTW... I did not read the "Girls only" post :-)
Thanks,
Scott in Atlanta, GA
[Ed. Note: I believe Michelle recommends putting "Arnica Gel" on the spot you
plan to inject to numb the skin, and (possibly?) numbing it with ice first. As I
recall, these are only intended to reduce the sting of the needle however. As
far as I know, there's no treatment to prevent site reactions. You might try
benadryl, since it helps reduce allergic reactions. Ron]

Hi everyone,
Has anyone achieved complete clearing (or close to
it) of the psoriasis from ENBREL, and about how long
did it take? When I was on CYCLOSPORINE about 5
months ago I was nearly completely cleared just after
about 2 weeks. I have about 50% coverage of psoriasis
scattered all over and I was shocked at how well and
quickly it worked. However, Cyclosporine also worked
very well at giving me a huge spike in blood pressure
so of course I had to stop taking it. Thanks for any
info.
Mike

I wanted to bring up the possibility of Sjogrens Syndrome rearing it's ugly
head as far as your eyes are concerned...it would be quite possible- even
more than probable. The dry eye condition frequently gets out of hand due to
lack of diagnosis and then the corneas get corneal abrasions- which can be
permanent scarring- all from lack of tears. I would have my eye guy do a
schirmers test- by putting a small piece of paper in your ower lid after
putting a numbing drop in your eye- then after a measured few moments- they
will have an answer as to whether you are making enough tears.
You also need your corneas checked out while you are there too;
If you do have very dry eyes, iI highly recommend getting silicone plugs
inserted into all 4 punctum- first the lower two, and a month later if the
test reveals you are still dry- then the top two punctum as well. Once all
four were in, my corneas healed rather quickly and within months I had no
further need for expensive preservative free eye drops!! Better yet- no
blurry vision!!
All my best,
Michelle S

Hi all,
I'm relatively new to this group, I'm been lurking for several
months .I was Dx this Fall with Pa or RA or both, my RD doesn't want
to pin exact label yet, to mess up my chances for different meds
down the road.
I've been on MTX and 5mg. of predinsone ,along with Folic acid since
Nov. 21 and Clelebrex since this all started in the Summer.
I picked up my first MTX at the local Walmart.But since we normally
send for our meds. thru the mail (3 months supply for $5.) I sent
off my precription.
Over the week-end ,actually during the day Fri. the injectable MTX
came, but my husband did not pick up the mail at the mailbox that
day.It was snowing and we live 1/3 of a mile off the main road. Our
lane is steep and when you stop to get the mail sometimes you can't
get your speed up to get up the hill.
To make a long story (a little shorter,) I picked it up Sat. morning
at 9 a.m. It did not appear frozen, our temperatures were in the
thirties that night, warm compared to other nights.
I'm a little concerned that it has losts some of it's potency. I
don't understand why the Co. would send it without some protection,
insulation or something. They used to send my nasal spray for my
bones in a large insulated, ice packed, over night box.
I'm going to go ahead and use it. I don't think I have much of a
choice.Any one else have this problem?
Thanks, Rosanne

Hello everbody,
did anyone experienced noticable elevation in blood pressure while
taking Vioxx?
Thanks.
Mesut

I just want everyone to know how much I appreciate all the advice and
sharing. My daughter lives in NY and I live in AZ. I was in NY for
some time after the baby was born but have since returned to AZ. It
was extremely difficult for me to leave my daughter at that time, but
I had to return home. I am currently taking remicade for RA and was
due for a treatment and because remicade only lasts for a few weeks
for me, I got to the point where I was no help for her. But that
isn't really what I want to talk about. I want to answer the
questions that I've been asked and update you on her condition. She
is actually doing better now. I think the MTX is starting to work.
Even though she still needs the walker for outdoors, she us able to
get around okay in the house. She has her first appointment with a
rheumatologist scheduled. Someone mentioned pain medication. While
she was hospitalized she was on morphine, but changed to oxycontin
and oxycodon when she went home. Recently, her dermatologist took
her off those two drugs since they can be habit forming and put her
on neurontin. She isn't getting the same relief, but she's getting
by. While she was hospitalized, she was on several different
antibiotics util she had an alergic reaction to one of them.
Finally, she was put on a course of clidamycin. Right now she has a
very delicate new skin covering that is extremely dry, but no plaque
or pustules. She uses a temovate mixed with a lotion as a topical.
She's also on an anti-depressant. You can imagine what all of this
plus being a new mom has done to her emotional state. I talk to her
on the phone several times a day and I have to admit that she has
been very positive this week. The good news is that she's coming for
a visit. It will be very difficult for her but we got her a non-stop
flight from NY and she'll be here on Saturday. I will feel so much
better when she's here and I can help her with the baby and take care
of her. All and all things are looking up and thanks again to
everyone.

I would be very interested to hear more about the new drug your company is
working on. The Enbrel is the first thing other than prednisone that had
any effect on my disease. The prospect of a shot every 2 weeks is much more
attractive than twice a week. Hope to hear more. Would also like to know
your name. Cheers Anne

I've had PA for about 4 years now and have been taking MTX,
Prednisone and Vioxx for most of that time. I've recently started my
own business and have found out the hard way that I should have kept
my COBRA insurance.
My old medical insurance carrier (Blue Cross) wants over $700 per
month to insure me. No one else appears interested in even talking
to me.
What are the rest of you experiencing with regards to this?
Kelly

Some thoughts about using other DMARDs, such as Methotrexate, while
trying the antibiotic protocol(minocycline):
In an earlier e-mail, Ron wrote: "the danger is primarily to those
who have "tunnel vision" regarding antibiotic therapy, and persist in
using it to the exclusion of all else even as their joints
deteriorate away to the point that so much damage has been done
nothing can help them any more"
It is for that reason that I've been using low dose, intermittent
prednisone -- i.e, to help stave off joint deterioration and to act
as a "bridge" until I find out whether the minocycline will work.
However, after reading about all the bad side effects of prednisone,
I began to wonder whether I should consider using a different DMARD
as a "bridge" instead, such as Methotrexate.
Here's the results of my research so far (If anyone has anything to
add on this topic I'd really appreciate it):
The antibiotic protocol advises that one should stop using strong
DMARDs such as methotrexate and go through a six week "wash out
period" before starting the protocol (but that one should keep using
NSAIDs and possibly occasional, low dose prednisone while taking
minocycline).
The following is a quote on this topic from www.rheumatic.org along
the same lines :
"DO I STAY ON [Methotrexate] ALONG WITH THE ANTIBIOTICS?
Physicians should be cautious about possible antagonism between
drugs, which could cause severe side effects. Response to antibiotic
therapy depends to a large degree on the strength of the immune
system. Methotrexate is a toxic, immune-suppressing drug, and
physicians most experienced in the use of this therapy take patients
off the drug. Ideally, a six week wash out period is recommended
between stopping the methotrexate and starting the antibiotic
therapy. However, if you are receiving benefit from the methotrexate,
your physician may be reluctant to discontinue it. The antibiotic
therapy can be started and then eventually gradually the patient is
tapered off the drug. If you are receiving no benefit from the
methotrexate, it should be discontinued. "
Despite the above advice, I have read several testimonials from
people who had success using the combo of MTX and minocycline.
Also, presentations Hutt Hospital, Wellington, New Zealand
addressed "Minocycline Therapy in Psoriatic Arthritis" , including
the issue of concurrent DMARD use while using minocycline. (In that
study, "13/36 patients were on a DMARD at entry, and 8 have now
ceased the DMARD due to sufficient efficacy from the Minocycline or
Doxycycline." 3 out of the 36 were using methotrexate concurrently
with minocycline. 2 of those ceased the methotrexate and 1 reduced
the methotrexate due to sufficient efficacy of the minocycline.
(http://www.rheumatology.org.nz/cen998/concurrent%20dmard%20use%20in%
20%20psoriatic%20arthritis.html)
So it seems mixing MTX with minocycline might work.
The treatment in that study was as follows:
(see: http://www.rheumatology.org.nz/cen998/ce03000.htm )
"Treatment Usually commenced on Minocycline ( Some with Tetracycline,
Doxycycline ) Starting dose 100 mg x 3 per week if recent disease, or
on existing DMARD 50 mg x 3 per week if long standing untreated disease
Attempted to reduce existing DMARD usage if observed any benefit
Dose of Minocycline increased to 600 - 700 mg/week after a few
months Salazopyrin added in if insufficient benefit seen after first
couple of months and on 6-700 mg If side effects from Minocycline, changed to
Doxycycline, and then to Tetracycline Given Penicillin VK if evidence of recent
Streptococcal infection before resuming Tetracyclines"
In the meanwhile (until I make up my mind about this), I've reduced
my prednisone to 2.5 mg/day (plus 600 mg ibuprofen) and still feel
extremely good compared to just a few weeks ago
I've been on minocycline for 7 weeks. My minocycline dose for the
last 4 weeks has been 100mg/ 7 times a week. Before that I took 100
mg/ 3 times a week for 3 weeks.
Sharon

Hi there,
This is Lisa in Missouri. My husband Bob was diagnosed exactly 5 weeks ago
today and he's been on MTX (pills) since and we've seen absolutely no
improvements in anything. In fact, he's gotten worse and of course this
winter weather isn't helping at all. His "rheumy" has him on 4 tablets of
MTX every Friday evening (2.5 mg each). For pain he is taking Prednisone
(just started this week) and vicadin. He is still in extreme pain and his
digits have swollen up so bad they look like they could pop. We know his
liver enzymes were up last week so he went from five pills to four on last
weeks dosage. My question is, should we be seeing him going backwards with
PA like this after being on MTX? The "rheumy" told him it would be at least
3 to 4 weeks before he would see any improvements and now via phone with the
nurse they are saying 8 to 10 weeks. Needless to say we are both a little
frustrated and wondering how long could we see his deterioration continue?
Thanks for all of your postings it has really been enlightening and
educational for me and for Bob.
Kindest regards,
Lisa M.

Shane,
Get to a Rheum IMMEDIATELY!! They need to take X-rays and blood work to see how
active this disease is in you! Have you had this done? This is a MUST! You
need to learn how to evaluate where you are with this disease. Learn what your
bloodwork and your X-rays mean. Read all that you can from DEPENDABLE sources
like the Arthritis Foundation. It took me a while to learn which treatments I
am WILLING to use, and which ones I am NOT willing to use. By the way, the book
I mentioned earlier talks about exercise, diet and drug choices and give a play
by play on which drugs are most toxic, and which ones are LEAST toxic. You have
to decide for YOU which drugs you are willing to try. No Dr. nor anyone this
site should be allowed to make that decision for you. YOU are the one putting
something in your body, so you need to find out which meds you are willing to
subject your system to, but you need to do it FAST. ONLY YOU can decide when is
the right time for you to go on more severe drugs. For ME it was right to wait
until my bloodwork got a little more wacky, and the disease became a little more
active than when I first got it. Exercise and DIET is SO IMPORTANT in this...
SO IMPORTANT. It doesn't CURE anything, but it makes your body such much better
to cope with it.
By the way, remember, ANY DRUG is harmful... even VIOXX. EVERY DRUG HAS side
effects.
Tiffany
In a message dated 12/5/2002 4:23:18 PM Eastern Standard Time,
shane_k_helm@... writes:
============================================
Hi Kathleen,
You have heard right from everything I know. The destruction will never be
reversed, and their are no operations to correct it. (except for fusing, which
then makes those finger un-usable... not really an option) I am sure you have
told us this before, but what are you on now? You can e-mail me at
TMHHAYS@.... I would be very interested in knowing when the damage
started... as in how many years into the disease, and is it only your fingers?
I have a toe, part of my hand, and a small deformity in my ankle. I try to tell
myself that I notice it a lot more than anyone else, and I am sure that is the
case with you too. Where do you live? (Once again, I am sure you have said
this before, but I get so confused as to who says what on here.)
My e-amil address is TMHHAYS@...
Tiffany
In a message dated 12/4/2002 7:23:48 PM Eastern Standard Time,
thekoolkat@... writes:
reverse the damage that has already been done to my hands. Even surgery I have
been told is not an option. I would like to talk to both of you about your
experiences with PA as I too am in need of some relief from this
============================================
Chris,
I have had very little P until just recently. You mentioned you know how to
take care of yourself... what do you mean by that? Do you do at home skin
treatments that keep your skin in good condition?
By the way, I have come up with a few home rememdies that help alot. One is
taking hot peanut oil baths every night, and another is mixing peanut oil with a
very bland and thick cocoa butter lotion and applying all over your body before
you go to bed every night. My skin is much smoother when I wake up. Peanut oil
on the scalp also helps scalp P.
Happy peeling!
Tiffany
In a message dated 12/4/2002 10:24:10 PM Eastern Standard Time,
crispinbates@... writes:
============================================
Does it help the Psoriasis? I don't think I have read anything about that yet.
Thanks!
Tiffany
[Moderator's note: No, it does not. Even the AP "devotees" will confirm that
statement. Ron]
In a message dated 12/5/2002 12:39:58 AM Eastern Standard Time, sjssjs00@h...
writes:
============================================
From: pookiegut@...
Date: Thu Dec 5, 2002 2:20pm
Subject: Re: [PsoriaticArthritis] Antibiotic treatments (AP)
I could not find the Dr. listing on this. Can you help please.
Tiffany
In a message dated 12/4/2002 11:55:46 AM Eastern Standard Time, hank@i...
writes:

Ron --
Thank you so much for the instructions on how to post an original message. I am
sitting here feeling quite foolish but much relieved that it is so simple to do
the thing I have been struggling with for a year. Whatever I was doing always

Thanks for a warm welcome to the group. I just joined last week and
have gotten dome personal feedback from so of those in the group!
Thanks Ari! It is interesting to find someone across the world that
has the same troubles as I! Also thanks Ali in NC, I hope we can
meet sometime after the holidays! The PA is a new Dx for me. I was
Dx last year. But I was Dx with lupus in 1991 at the age of 21. So
pain and suffering is well know to me and my family. It has been a
long road, but down that road I married a man who is supportive in
every way and have been blessed with two beautiful boys (7 & almost
4) who give my a reason to continue each and everyday! Like many of
you I tried the Methotrexate. I was on a moderate dose for a year
and in September my local Rheumy sent me to Duke and they found my
liver panels were 5 times the norm and immediately took me off of
it. Both said I could only take it in an extreme case situation. In
the mean time, I had my first infusion of Remicade a week ago and go
back for treatment #2 on the 9th. Also, I received a letter over the
weekend that Embrel is now available to me. What to do? Any
suggestions. I do well as far as the infusion went. The next day I
slept all day, but my doc said that was to be expected. Then about 3
days later I started with nausea, vomiting and diarrhea. I am sure
it wasn't a stomach bug and the nausea is lingering on. From what I
have gathered the two drugs have the same active ingredients, it is
just a difference in the way they are administered. If you have any
suggestions, PLEASE let me know! Thanks and pain free days to all!
Christina
Hickory, NC

Hi Cheri,
Thanks for the info on your meds!! Methtotrexate did the same things
to me. I know my daughter understands that I am in pain alot and
can't do alot of things that other mothers can but, sometimes I feel
I put too much of a burden on her..you know? My next option if the
Arava doesn't work is the injections. I'm not sure which one that is.
Thanks again for your reply and feel free to write me at my regualr
Email anytime. I know these message boards can be kind of confusing.
Take Care,
Kelly

I'm sorry for the delay in my responce, this week has been crazy!! I
was very touched by your post and I know what you mean about hearing
good news,it raises the spirit and gives encouragement. I myself was
recently diagnosed with PA, and it feels like it just leveled my
life. I have 3 girls ages 7, 8,& 11 and 2 step sons 19 & 14 it has
been hard on them too. Normally we go places and I play as hard as
they do and for a while now I've been watching from the side lines,
if I even go. The younger ones are too little to really understand
why I haven't been my normal self, and I know that the older ones
are disappointed, even thou they don't complain. And my poor husband
just wants his cheerful wife back! The pregnacy seems to have
improved the PA. I hope things get better for your family soon! If
you ever need someone to talk to feel free to e-mail me.
Take Care& God bless,
Merribeth

Hi everyone! I wanted to thank everyone for the heart warming
replies I recieved the other day. I'm sorry for the delay in my
response, this is the first day off I've had since starting the new
job, I was even working (at home) on thanksgiving. Thanks again and
I hope everyone had a happy thanksgiving!!
Take Care,
Merribeth

I'm so sorry I did not write you sooner, I actually saved your post
in my e-mail to serve as a reminder. I'm glad that you rejoined, I
agree that you add a lot to the group, I always read your posts and
find that I learn from you. I'm very sorry that you are having such a
bad time right now and I hope it ends soon. You have been in my
thoughts and prayers this week, I've just been very busy and have
barely been checking e-mail this week much less answering. I hope
you are feeling some relief soon!!!
--Merribeth

There is a Psoriatic Arthritis clinic in Toronto. It was founded by
Dr. Dafna Gladman. She has researched and treated PA since 1978. If
I were in the area I would go there. If I wasn't, but in Canada I
would call and see if they could refer you to a rhuemy in your area.
There is info about her at the National Psoiasis Foundation website.
--Merribeth

The FDA has weighed in on Super Blue Stuff.
http://www.medscape.com/viewarticle/444826
To access the article, click on this Web address, or cut and paste it into a
browser window.
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mobile professional.

Hi everyone. Does anyone else have pain in the throat? I don't mean inside
where you swallow, but sort of above the "adam's apple". I have had a slight
pain for a while now and my primary just felt it and said she didn't feel
anything. But now it's getting more pronounced. Could this be from PA?
Cheryl

I am sure it is not as exciting to most of you, but I got my letter
via UPS from Enbrel. I already have my Rheumy checking insurance
coverage. I guess I will skip the Kineret. I would much rather have 2
shots per week than 1 daily.
I just want to say thanks to everyone in the group. You all have been
sooooo helpful to me and all others here!
Thanks again,
Scott in Atlanta, GA

Just wanted to thank everyone who gave me support during the recent
weeks.. The tornado's here and having my sister move in with her
rather noisy children was at times stressful. Please don't get me
wrong I LOVE my sister and the kids but I had forgotten about how
energetic younger children can be.
Blessings
Gwen

I think everyone is in total agreement on this one! Definitely....Yes! As
you can see/read form all the posts most of us who have had PA for any length
of time have had to deal with someone (Doctor) who didn't think it was PA.
The faster you get help the faster you will get some relief. I wish I could
say be cured but until that is possible just having someone who knows about
PA and understands the severe pain and problems it can cause is a help. Good
Luck! Linda

I've suffered psoriasis on my skin for nearly 30 yrs. In recent years
I've had pain in hands, elbows, feet(inflamation) back, neck, just
about everywhere. Conjunctivitis and occcasional sharp eye pain and
at times irritation and redness lasting weeks. Periods of confusion
and absentmindeness, insomia and stiffness when starting the day and
FATIQUE.
Had lots of blood tests today and prescribed vioxx, can't bring
myself to fill the script. Feeling very sad but at least might know
why I've felt so unwell for so long. I gather if all tests are
negative then I'll have P.A. My DR. has indicated he won't send me on
to a Specialist, should I insist? Meg

Hi all
Well today was the day I was scheduled to get the
liver biopsy.
Got up, fasted and headed to the hospital in plenty of
time but hit a traffic jam in Ashland. Nerves frayed.
Registered at the hospital and waited to go in to get
the scan and biopsy. They couldn't do it because they
didn't have the blood clot test. I argued that I had
it taken Monday and even showed them the huge bruise
on my arm. They said apparently the clinic did the
wrong blood work. Now I have to call doctor and have
her reschedule everything. Hospital said that they
are now booked for 3 or 4 weeks out.
I could be wrong but I think that tech. that had hurt
me so much during the blood test put a wrong label on
the two tubes of blood taken. Although some one had
said something about pricks and timing.
Well that's the story.
Sherry

From: http://www.algonet.se/~leif/yfBJO92a.html
Bjorkman L & Lind B.
Factors influencing mercury evaporation rate
from dental amalgam fillings.
Scand J Dent Res 100(6):354-360 (1992)
Abstract: "Factors influencing mercury evaporation from dental
amalgam fillings were studied in 11 volunteers. Air was drawn from
the oral cavity for 1 min and continuously analyzed with a mercury
detector. In six volunteers the median unstimulated evaporation rate
was 0.1 ng Hg/s, range 0.09-1.3 ng Hg/s. After chewing gum for 5 min
the highest evaporation rate was 2.7 ng Hg/s. Chewing paraffin wax
gave only a small increase in evaporation rate. Changes in airflow
rates between 1.5 and 2.5 1/min during the 1 min sampling did not
change the amount of mercury drawn from the oral cavity. Sampling
with different mouthpieces and closed mouth was compared to open
mouth sampling with a thin plastic tube. It was found that the latter
method could result in lower values for some volunteers due to
simultaneous mouth breathing. After placing individual plastic teeth
covers in the mouth, the intraoral evaporation of mercury decreased
immediately by 89-100% of previous levels. This technique could be
used to detect mercury evaporation from separate amalgam fillings or
to reduce the intraoral mercury vapor concentration. Rinsing the
mouth with heated water for 1 min increased the mean evaporation rate
by a factor of 1.7 when the water temperature increased from 35
degrees C to 45 degrees C."

http://www.freep.com/news/health/nstaph12_20021112.htm
anyone know how to find a pathologist to be tested for this kind of stuff?
All the pathologists i talk to say they dont work on patients..

I was wondering if any one has ever heard of a false negative blood
pregnancy test. That's right I said blood it wasn't a typo. Plus I
was wondering if anyone knows if it is possible for Remicade to
interfere (stop) your periods or mess up the levels of HCG in your
blood stream? My mother is not trusting the blood test but I told
her that a blood pregnancy test is quite conclusive. Pleaes let me
know if anyone disagrees.
Thanks,
Ali Baucom

Hi I just read an article in a magazine while sitting in the drs waiting room
that mentioned that Vitamin D is an immunosuppressive! Maybe that is another
reason why the fish oil is so great for us?
xoxo
Kitty

All is going well, just get tired alot and don't like to sit too long, but
should start feeling the baby kick here in a couple of weeks...Will let you all
know about that...And the Sono to find out what I am having will be mid
January...So everyone needs to decide by then what they think I am having...:)
Talk later...;)
Love and God Bless, Pam

Does anybody know if maintaining a vegan diet helps
with arthritic pain associated with PA? Someone told
me that meat and dairy contribute to inflammation and
pain in arthritis patients, but she didn't know if
this applied to PA.
On this subject, has anybody had any success with
dietary limitations?
Mike Pope
Tallahassee, Florida (No, I didn't vote for Jeb.)
=====

The information I posted earlier on the need for absorption of Vitamin D from
sunlight for arthritis sufferers surprised me, and prompted me to do a search.
Vitamin D is essential to maintain normal blood levels of calcium and
phosphorous to promote bone mineralisation. Those who cannot obtain it
naturally from sunlight need a Vitamin D supplement. The best web site I found
was:
www.cc.nih.gov/ccc/supplements/vitd.html
Regards, Gordon

I have just read a most exciting report. Researchers in England have used
a lymphatic cancer biologic to get remission for 1 -3 years in RA
sufferers. The biologic was designed to kill B-cells for lymphoma. The
research team theorized that excess B-cells are involved in arthritis.
Wiping out the B-cells does a reboot of the immune system. 2 doses of
Rituximab helped 80% of the trial patients for 1 to 3 years.
Rituxan/Rituximab is already FDA approved for cancer so it is available -
all you have to do is persuade your rheumy to give you two shots!!!
In the report
http://www.medicinenet.com/script/main/Art.asp?li=MNI&ArticleKey=21636&page=1 it
says that two shots cost $6,000 as compared to the cost of Enbrel or
Remicade at $12,000 to $15,000/yr. Don't be surprised to see the health
insurers pushing for full testing and approval for use in the US.
David

Merribeth wrote:
"Hi, I'm sorry to hear that you are having a rough time right
now. It is often difficult in the beginning, doctors aren't always
right about things that are not thier specialty. Many of us hear
have been told things (by doctors) that are not accurate, sometimes
absurd. So we try to let each other know if something doesn't sound
right. Just because you have questions doesn't mean your slow, it is
difficult to find good info on PA, this place is a good place to ask
questions and you can search the archives for answears also. Good
luck. I hope you get to feeling better soon!"
hiya and thanks for your email, it's really good to have people out there with
similar experiences even if in the end it's not PA. Maybe I shouldn't be doing
all this research before I even have a firm diagnosis.. but on the other hand I
guess it's good to be informed. Thank you for having the patience to help me
with my questions everybody :)

Orin
I read your long message. It's amazing what we cover up - physically and
mentally - to get by.
What seems to be abnormal behavior to the rest of the world is often perfectly
logical and justified.
You know the saying -- "if they can't take a joke, ------"
A thought about treatment. Most big teaching hospitals will treat indigent
patients - you have to get over that phrase but I think it covers you in your
circumstance. Doesn't Oklahoma City have a big teaching hospital? You will
get some of the best docs around and you will be able to afford it.
There are several ways to get the number of the rheumatology department at
a hospital. Find the web site of the hospital or the University. Look up the
certification board for rheumies and find certified doctors for Oklahoma city.
Look up doctors on the PA and RA web sites. Their addresses will tell you
if they work at the big hospital.
Get the number of the big man in the department - ask to speak to his assistant
and tell her your story (condensed to 60 seconds) and say you would like some
help. Alternatively talk to an appointments person and make an appointment
- when they ask about insurance tell em the truth and they will pass you over
to a person whose job it is to decide who gets free treatment.
If you get the run-around let us know the names of who wouldn't help and we
can start an e-mail blitz on them to educate them about PA.
I normally can spout more details than this but the brain fog is real bad
- too much gardening this weekend. How you get to hospital for your
appointments
without a truck I don't know but I hope it helps.
David

Hello,
I just want to thank everyone who has responded to my message so
far. It is so nice to find a group of people who understand what
you are going through. I feel so much better and so much more
optimistic about everything. And I am on the enbrel waiting list!
Thanks!

Well things are going good, I am 10 weeks as of today and tomorrow I go in for a
sonogram...So of course I will let everyone know how things are going, but
otherwise I am doing good, able to do more and feeling better, just tired...:)
Take care everyone...Love and Hugs...Pam

I've temporarily, and maybe permanently, stopped Kineret. After 8
days of injections I begin to see huge red welts on my legs that
didn't appear to be "normal" injection site reactions. Some of the
areas were purple in color. I increased my hydrocortizone to 2.9%,
took Benedryl capsules and put ice on the areas. They aren't as
swollen, 4 days later, but they are very prominent in color. My local
pharmacist didn't feel they were "normal" injection site reactions.
Kineret feels they may be, but that was only over the phone. Now I'm
waiting on my rheumy to call me back to let me know what to do from
here. I never did get a reaction in my arms, funny thing.
I'll keep you all informed but right now I've stopped the Kineret (3
days now).
Janine,OH

My husband has had pa for three years now- he has been on all the
usual including the cytotoxins and the mtx- no relief- he never
feels good- never- it is ruining our lives and running our lives -
what can I do to get him to be more of an advocate for himself when
dealing with his RD- to make sure that they are doing all they can
for him and what alternative therapies have you all heard of that are
better tolerated- his medications made him just as sick as the pa
and didn't make the pa that much better- and they are all so toxic
that they will end up shortening his life significantly- and why in
the hell will they not give pain medication to a person that is
suffering so?? The NSAIDS are of minimal help- he never sleeps- he
has pink eye all the time- swollen lymph nodes , fatigue- I could go
on and on. When he takes the methotrexate it makes him seem like
neurologicaly impaired- he stutters and the normal rythym of his
speech is altered - his movements are exaggerated and kind of I don't
know it's just scary- half the time I think they mis dignosed him-
they told us it was Lupus for the first 6 months but then his ana
came back negative and they changed his dx- can anyone out there
share thier personal experience if it is at all in common the
doctors treat us like we're blessed for five minutes of their silent
staring and nodding- mmm hmm mmmhmm- is all the dr ever says - writes
him an rx for more poison and says i'll see ya in six months. Well I
have rambled on long enough but if anyone out there could help a
worried wife- I would sure appreciate it!!! Oh and one aspect of this
disease that really upsets him is the skin lesions that are all over
his scalp-The Mtx made him lose alot of his hair and he is very self
conscious- anyone have any widom on that one?? Thanks from a worried
wife!!!

I highly recommend not taking on doing this yourself. I would go to a
podiatrist and have them handle the job. First of all they have the tools and
secondly, they can check to see what might be brewing down there besides
psoriasis. For instance, it is pretty common to get a very hard to treat
fungal infection in the nail bed. The podiatrist would be able to take care
of that for you along with the trimming task.
Michelle S.
Group founder

I have a thought on the toenail problem. Please don't be offended, I am
in NO way comparing you to a dog, but here's the story. Some years ago
I had a rottweiler whose toenails could not be clipped by dog nail
clippers. Our final solution was to use my hubby's dremel tool to sand
them down. Now I see on TV they make a tool exactly like a dremel but I
think it's pink, and they're marketing it as a way to sand down your
nails and buff them. Don't know the name of that product, but it might
be a solution for you, to sand them instead of cut them.
Penny
************************
From: gamsky verna
Subject: Help with ideas for clipping nails
My toenails are so thick and curled that even tin snips would not cut
them. I fight with a heavy duty clippers but have problems even getting
them open far enough to get the nails in. I know someday I will probably
have to have the nails pulled out but am putting that off for as long as
possible. Does anyone have any ideas on where I can get a good pair of
clippers? Something that might cut rocks? I have very stiff fingers and
cannot close my right hand so I need something I can handle easy. I hope
someone here has some ideas. Even soaking my feet in water for a long
time does not help.
Thanks
****************

Thanks Ron for the info. Meghan called and left me the numbers on my
machine. She is such a caring person! the office was closed by the time I
got home from work. I will have to coordinate time to call tomorrow at
lunch. It feels good to have people on my side.
Thanks Eva too. I will keep looking for work. A friend of mine works for a
temp agency. He said that he could find me work at good pay. They even
offer insurance but they have what's called a pre-existing condition which
means that they won't cover anything for that conditions (meds, dr. visits,
surgeries) usually up to first 1-2 years of coverage. What good is
insurance if you can't use it. Husband can't support us both. Considered
disability. Need to coordinate with dr.s to see how much help they will be.
Problem is that it takes a long time to get approved for disability. What
can I do until then for money and healthcare? I am only 25 too so that
doesn't help.
Thanks Jeane for letting me know about FMLA. I didn't know that you could
use it for yourself and for intermittent use. My company does have a policy
regarding long term disability. If you are gone for more than 6 consecutive
months you will be terminated. Also, they have been in the habit of firing
people who frequently miss work alot or go on short term disability often.
Many guys down in the shop (I work admin) have been let go for frequently
going on STD. What makes me so mad is that every single absence, dr. appt I
have ever had were excused and many of them were made up by working late or
on Saturdays.
Won't go into this longer for now. Thanks to all for the support. I am
tired so I am retiring.
hugs to everyone,
Leslie

Leslie,
I am so far behind in reading and participating in the group, I feel out
of the loop. What I am going to answer you about has probably been
answered, but I wanted to tell you how I handled traveling with Enbrel.
First I want to say, I am sorry to hear you are not feeling well again
and was hoping the surgery would help you feel so much better. Hang in
there, there is a light at the end of the tunnel. I would still apply
for social security even if you are 25 or whatever age anyone is. Now
that I am not working and on SS I feel so much better not being under
all that stress at work.
You can email me privately ANYTIME if you just want to chat or ask me
anything. I will be SO glad to talk or help you.
Not back to the subject matter. We went to New Jersey in May and all I
worried about was how was I going to carry this Enbrel with me and keep
it cool on my layovers AND what were they going to say when it went
through security?
I got myself a soft sided insulated bag. I had one that I used for my
lunches when I worked because I only needed 3 shots. You might need a
little larger one. I used the ice packs from the box my 3 month supply
was shipped in and put them around the medication. It lasted way over
12 hours. The ice packs were just starting to get a little soft about
15 hours later. The first thing I did was put the medication in a
refrigerator and refreeze the ice packs. It worked great and I carried
them on and told security what they were. They never blinked an eye or
even opened the insulated bag.
I was a nervous wreck because of the vial with the white powder
substance in it. I thought I would be questioned and searched because
of that, plus the needles with the liquid already in the syringe. All
they asked was are you diabetic? I said no, it is for my arthritis and
they said ok.
What was really strange was that they patted me down because I was in a
wheelchair and did the metal detector wand thing over my body and when
they got to my feet, they asked me to take off my sandals and asked if
they could be inspected. I said sure but thought it strange cause they
were flat slip on sandals and nothing could be hidden in them, BUT they
let the syringes go through without a hitch. And this was in Newark
airport which is right across the river from New York. I just thought
it was strange they were not more thorough.
But I worried for weeks before going about carrying the Enbrel and it
worked out just fine. Just make sure you keep the packs in the box that
has the prescription number and Dr.'s name on it in case they need to
contact them.
Another thing I do, because we travel a lot is I carry a business card
for every Dr. I go to so I have their name, phone number, address, etc.
JUST in case I need them or if there is a question at an airport. It
makes it so much easier than trying to remember all my Drs' names and
numbers and I also carry copy of all the medications and dosages I am on
at the moment. You just never know. As a matter of fact, I carry a
copy of my husbands medications, too and he carries a copy of mine and
his also.
Have fun on your trip.
Regards,
Angera

I was just called in to my supervisor's office and he along with the HR
supervisor stated that I was put onto disciplinary action (probation for 3
months) for having excessive excused absences. During these 3 months if I have
any absence, even if it is excused, I will be terminated. I don't know what to
do. It isn't like it is my fault. I come to work when I am sick. I only stay
home when I am too sick to leave the bed, according to doctors orders. I have
frequent doctor appointments but this is because I have to see a rheumatologist
(every 1-3 months), a pain managment doctor (every month), I was in physical
therapy (which was time I had to make up and did), seeing a physical
rehabilitation dr. (every month), seeing my GP whenever I was sick (which was
frequent but I only broke down and went when I kept going downhill and wouldn't
get any better), and seeing my hand surgeon (every couple of weeks for 3
months). I mean because of the prednisone I used to take and the fact I am on
enbrel I get sick often and stay sick for weeks. I still came to work. Most
times my supervisor would send me home! I was supposed to go to a sleep clinic
tomorrow which I won't be able to now. I won't be able to get any of my
medications refilled. I am basically screwed! Can't quit because my husband
can't support us both and we have the insurance through me. I really don't know
what to do!!! I started to look for another job but I won't be able to go to
any interviews. My appointment that I have been waiting for with Voc Rehab for
almost 2 months will have to be cancelled. I think I will go anyway. Maybe
they can help me find another job. I can use a half day of vacation. I was
saving all of it to go with my husband to visit his parents in Portugal. We
haven't seen them in over 2 years and haven't been on a vacation etiher. The
past 2 years of my life have been hell with all the health problems that keep
adding up. I really need and deserve a vacation to have fun and now that is
going to be taken from me too. Now I will have to use all my vacation to go to
the doctor. I just don't know what to do. I am so angry about the matter I
just want to leave and never come back! I feel like I am being punished for
something that is completely out of my control. I feel horrible every day. I
have tried to be here, even rushing back after dr. appointments to work later.
I even asked before if I could make up the time on the weekend but they said
only on the same day. My days are long and hard as it is. I don't have the
energy to run around town to the dr. and stay until 7 or 8 at night at work. I
had 2 doctors tell me that my job is too stressful and that I need to quit and
find another job. Can't be without insurance though. Also worried about
pre-existing conditions. Sorry I ranted on so much. My husband is being
understanding but he said that I do have alot of absences and he knew this was
coming for sometime. He said he feels sorry for me but he understands their
reasoning. I feel helpless. Like I have to ignore how I feel, no matter how
much I hurt or how sick I am.
Leslie
[Moderator's note: Leslie, please call the Equal Employment Opportunity
Commission at 800-669-4000 or the ADA Information Line at 800-514-0301
immediately. They will provide you with information about filing a complaint
with the U.S. Department of Justice, Civil Rights Division - Disability Rights
Section. These are the people responsible for enforcing the Americans with
Disabilities Act. Such treatment is barbaric and seems to me to be a clear
violation of the ADA. -Ron]

Hi everyone,
My 65 year old mother has had psoriatic arthritis her whole life and
is presently on the drug 'Arava'. I believe she's been on it for nearly
a year now and it's working well for her, although one of her tests did
come back with elevated liver enzymes but that was taken care of. So
all in all, she's very happy with Arava so far. However, the other day
I saw something on TV which frightened me - That commercial with the KB
Moll law firm - Anybody familiar with it? They claim that several
people who have taken Arava now have a life threatening autoimmune
disease called 'Stevens-Johnson Syndrome'. I mentioned it to my mom,
but the thought of having to go off Arava is devastating to her. She's
sure that she'd only wind up in a wheelchair and she's probably right.
Her doctor prescribed Arava after her Methotrixate stopped working. I
wonder if there are any other drugs out there that would work for her
as well as Arava that she has already built a resistance to? Thanx in
advance........
Paula
[Meghan's Moderator Note: Hi Paula, there are still options available for your
Mom. I haven't heard about this recent news on Arava, but I'm not terribly
surprised. I have heard talk they want to ban Arava and I knew that it's been
reported to cause some pretty bad liver damage. Anyway, other options are
Remicade, Enbrel, Kineret and a new one coming out this fall. These drugs are
all considered "biologics". They operate directly on the cells that cause
inflammation in various ways. Hope this helps and I really wish your Mom luck in
getting the best treatment. Keep posting here and let us know!]

I just wanted to thank all of you who responded to my first post
here. I have been reading the posts and it seems like most of you
have been put on the same kind of prescription or similar ones. I
was just wondering if any of you have heard about Voltaren, that is
the drug that my rhematologist has put me on. I have been on this
for 2 and a half weeks now and have not seen any improvement. My
pain and swelling is still there in my feet and hands, fingers,
knees, and toes. I know that it will take a few weeks until it
should take its full effect, but I'm wondering if this is not strong
enough? My rhematologist has even sent me to get an x-ray of my
spine, has anyone else had to do this? Thanks for listening. Beth
[Meghan's Moderator Note: Voltaren is an NSAID (non steroidal anti inflammatory.
It is a very basic beginning. You should definitely discuss more agressive
treatment with your doctor if you have multiple inflamed and/or painful joints.
Don't let it go too long. I did and I think I'm worse off than I should have
been.]

Yesterday I had an ultrasound of all the internal organs in the abdominal region
(liver, kidneys, gall bladder, spleen and pancreas). They are all still there
and looking normal except for the liver showing increased echo consistent with
fatty liver. The existing cyst in the liver has not changed and remains benign.
This gives me hope that the upcoming liver biopsy will show that the fatty liver
has not increased and I can continue with the MTX, prednisone and celebrex.
OT - As I am writing this, it is dusk and they have just fired the sugar cane
ready for cutting, behind my retirement village. What a splendid sight with the
flames and orange glow in the gathering dusk. Shortly, I will see the sugar
cane train which runs on narrow tracks behind my back fence collecting the cut
cane and taking it to the mill.
Regards, Gordon

Friends --
Jack Nicholas, editor of the "PA News and Views" newsletter, asked me
to update the web archive some time ago -- May, I think it was. For
any variety of reasons I was not able to get to it until now. Until
very recently the last version posted was January 10, of 2002, but
now I have archived everything up to July 1 -- 22 editions. The
archive webpage is up at: http://www.wpunj.edu/pa/newsandviews.htm
and of course the webpage for our listserv is located at:
http://www.wpunj.edu/pa/
I'll be away until the middle of next week, but please feel free to
write in if you need anything -- thanks --
Robert Harris, North Jersey Highlands
raharris@...
http://www.wpunj.edu/pa/
http://satipatthana.org/

Hello--after reviewing some of the info and emails, i think this may
be a place i need to visit. I developed psoriasis 5-6 years ago,
which started with a few spots and mainly my scalp. Then 3 years
later I had a major infection--and after that the P got much, much
worse. In April 2001, i had a left knee replacement and at that
time the surgeon advised me that the demise of the joint was probably
sped up by psoriatic arthrits--as i was only 48 years old. And then
I had my right knee replace in January 2002. My knees are doing
great but I was on large doeses of morphine for the knee pain. i
finally weaned myself off the morphine 2 months ago--with the result
that i have pain in several hand joints, neck and shoulders. Trying
Mobicox now with some success. I also have fibromyalgia and a friend
who recently finished her nursing degree states that she did a paper
on the relationship btween PA and FMS. These are all autoimmune
diseases so nothing surprises me--but i am very concerned about the
rather rapid development of swollen, painful finger joints in the
past 6 months. No rheumatologist here where I live--so I need to ask
for a referral for an out of town doc. It is very discouraging and
my pain tolerance after years of severe knee pain is practically
nil. I am also trying acupuncture and therapeutic touch with limited
results. A long story with no answers, i suppose!!

Hello everyone,I have not posted in a while,but have been reading all
the other posts that others have been posting.About 4 weeks ago I had
another bad flare up.Went to my Rhuemy he gave me a shot But It
helped a little not real well as before when I have had them.One good
day out of it all.I take 25mg of vioxx,10mg of aarava,remicade,On my
bad days 50mg of vioxx,needless to say there are more bad days then
good.The worst part right now is that the spine has been giving me
alot of trouble.At first it was the lower part of my back,now it is
on top bye the neck and between my shoulder blades.I went 2 days ago
for another shot.Got my fingers cross it works better this time.The
humidity here does not help at all either.I guess I am just fuatrated
right now.I keep telling myself I can handle this.But when I get
hurting this bad I have a very hard time dealing with it.It is like
it is kicking my butt!I guess the scariest part of all of this is
where it is taking me.Each and everytime I have a flare up this one
is wosre each and every time.I am a C.N.A. and work full time and I
love my job so very much,but it is getting harder and harder to do my
job.I have heard alot on here about disability but how bad do you
have to be to get on it?I thank you all for listening to me and hope
you all have a great day!Catch you later Wifet

Dear Louise & all my fellow PAer's,
Sorry, I have been a lurker for a long time... I apologize. I do have to share
my good news, the Dead Sea works... I have been living in Jordan for the past 20
years and could literally kick myself for not taking advantage of the Dead Sea
being quite 'literally' at my doorstep... a friend of mine, whose husband is
temporarily working here, is the one who 'pushed' me into giving it a chance.
You all know my history from previous postings... I have suffered for well over
10 years... in two days I saw shocking improvements on my legs, thighs, arms,
and scalp. The most stubborn area for me was/is my back... the doctor there says
they are the more stubborn lesions ( I suppose he was referring to being
'stubborn' for me, specifically).
I have seen continuous groups of patients coming and going for the past 3 months
now. in total I went for 23 days... should have gone for 4 weeks, but had son in
hospital and other things happening unexpectedly (as usual). There has to be
truth to the efficacy of the Dead Sea and/or the sun there. Afterall, the
Germans who come by the hundreds are completely paid for by their government
under their health care system. I have spent hours talking with individuals from
groups from Italy, France, England, Austria, Sweden, Canada, the U.S., Ireland,
Scotland, and Germany. They all come annually and stay an average of 3 to 4
weeks- all depending on the severity of their cases... including mostly
psoriasis, psoriatic arthritis, and even vitiligo. I never knew this skin
condition could be treated.
Several months ago I attended the first international conference for psorisis.
it was held here at the Dead Sea (in Jordan) and was attended by top
dermatologists and other doctors specializing in psoriasis from all over the
world. including the U.S., Europe, and some countries in the Middle East. as an
Occupational Therapist who also has P and PA, I was able to attend and get quite
a lot out of this conference.
I am still on 15 mgs of MTX weekly by IM injection. my psoriasis has not come
back at all on my legs and arms. the only lesions I still have are the ones I
never got rid of. due to having to stop going for a while because of family
obligations, etc. I will now continue and keep you posted on my progress. I
wish for all of you that I could bring the Dead Sea to you. I think it is more
the sun. it seems that it is the specific combination of the sun at that
specific altitude. being below sea level. I spend more time in the sun. but
enjoy floating in the sea, real salty, but relaxing. The sun's dangerous UV
rays are more filtered, specifically, at the Dead Sea. so it is not just the
salts... but the combination of the sun, the oils they give, the oil and such
they massage into the scalp for the psoriasis, and some tar concoction for the
stubborn lesions. have to be checked bi-weekly by the doctor so he can make
adjustments for the strengths of the oils, lotions, creams, etc. I am truly
pleased with the results... I don't use any more psoriais medicines. only take
MTX for the PA.
I wish you all the best. I know this posting was rather lengthy. but I could
honestly have made it chapters longer. depending on how serious you are, it
could be worth checking into having some treatments at the Dead Sea. the world
is small and air travel is so easy. I never remember wearing skirts without
hose or sleeveless shirts. now I have no lesions to hide. it is a miracle.
Hello to all my friends ... sorry again for not posting more, it has been hectic
for me lately, but I am okay.
Lisa #2
Louise O'Donald <lbodonald@...
think it's mostly the sun, but people have
been going to the Dead Sea for treating their psoriasis for ages and
ages, and they swear by it (of course, where there's salt water there's
generally also sun, so could be a chicken-and-egg thing...).
But I offer another opinion. The clearing up _could_ be as a result of
the relaxation response involved in either lying out in the sun or
dipping into the salt water in a vacation mode. I once spent a week in
the hospital to treat a really bad psoriasis flare, getting UVB
treatment and coal tar. I cleared up beautifully but no one will ever
convince me that the enforced inactivity did not play an equally
important role. (I'd previously used coal tar and a UVB lamp at home
with nowhere near the same results.)
Right now I'd love to be out in the sun more as I've got a few very
noticeable patches :-(. This year, however, I'm much more leery of too
much sun thanks to the increaseed emphasis on the sun's effect in
melanoma and other skin cancers, and also because I'm on doxy for the
PA. And too much sun while you're on the antibiotic protocol is a no-no,
(sigh.....)
Louise
[Meghan's Moderator Note: Psoriasis is actually a vitamin D deficiency. PUVA
(sunlamps of a sort) are used to treat psoriasis alone. But I do agree that
reduced stress does help since P and PA are autoimmune diseases.]

So its
Warm water exercises (which I have done)
Spa (or hot tub)(which we are saving for)
Recumbent bike (good idea)
Remicade (Enbrel?) next step up from MTX?
Spine-health.com for more information
I'm starting to feel hopeful now and not so alone.
No one I know has this and everyone thinks it is like
osteoarthritis. I am only 50 and have had this for 5 years. So many
think only old people get arthritis and I am faking my illness. My
only support outside my husband is an older woman (85) who is very
empathetic. We go to the warm water exercises together.
I used to hike, bike, go shopping at antique malls, go to parks with
my husband, stroll around the neighborhood, go to the farmers market,
grocery shopping all things I can't do without a wheelchair and a
walker now. It has been hard to adjust to using these aids. I now
pick my outings based on how far I have to walk.
Thanks for all your comments.

Thanks Meredith. It does help to know that someone is in the same situation
as you. I am sure that there are many people on the list that are
struggling to work and get through each day. It is a never ending battle.
Because of our situation I will have to work until we either go back to
Portugal (which isn't happening any time soon) or I find some other type of
income until I can get disability. Has anyone done any work from home?
Like medical transcriptionist? My friend has all the software/books for
filing the insurance claims electronically. Problem is you have to go out
and solicite it. I don't feel up to putting on nice clothes and nice shoes
and run around town. I was just thinking that some type of work from home
thing would be good for people like us. I have vacation coming up too
Meredith. I have been putting it off until I feel better. My husband and I
love travelling and we haven't been anywhere in 2 years. We both need to
have fun and forget for a minute that I am sick. I am sorry that you
weren't able to keep up at the zoo with your daughter. I am not sure if you
would be willing but I know the zoo here offers wheelchairs. I know it must
be frustrating feeling so bad when you want to enjoy your time off with your
daughter. I hope you get to feeling better before you have to go back too
work.
Take care,
Leslie

Hi all
I saw my rheumatology nurse yesterday, I have had a lot of pain in both
hands lately (and all other joints but particularly hands). My fingers have
been curling down towards the palm for some time and cannot straighten (left
hand). To me, as I have said in previous posts, it feels like the bones have
now curved, but they saif it is the tendons and that I might need tendon
release surgery. I go see the rheumatologist in August. I have heard of this
surgery (I believe they cut the tendons in the palm?). Has anyone had this
done, what's it like, did it work, was it painful etc etc??
Thanks
Cathy

Hi all,
I am new to this group as of today. The pain has got to the point where
I needed to find some relief.
In short, I am 41 and have had PA since I was about 15. No one knew what
it was until I was 27ish. I am very active, not into taking med's but I
haven't found a natural way to deal with this. It was sugested that
VIOXX would be a good start, any comments?
Let me go back a bit first....when this was diagnosed they put me on
800mg, 3X's a day of Ibuprofen, as well as Sulfasalazine. After learning
the long term side effects of that, I decide to quit the med's. That was
14 years ago.
I'm all ears!
--
Pete
11:42:52 AM
Ask about eScan Content-Security
and Anti-Virus Software.
"We will meet ALL of your anti-virus needs."
www.milneweb.com

In the latest issue of the "National Psoriasis Foundation" bulletin
newsletter, there's an article under the heading "Researchers study cause of
psoriatic arthritis". It talks about this study they did, and the increase
in the number of patients that developed PA after using steroidal
treatments. They used these steroids prior to developing any type of
psoriasis or arthritis... I happen to fall into that same group.. I was
using a steroidal cream around my groin area before I developed PA...
Other possible triggers mentioned are trauma , strep infection ,
psychological stress, menopause, hormone replacement therapy , and oral
contraceptive pills..
mike

Hi,
I just went to see my Dr. The good news is that the Thrush and Ear infection
is gone!!! The bad news is I have viral bronchitis and am off work until next
Tuesday. I am in a management position and paid salary. I have already been
off for 3 months this year due to sausage digits which was misdiagnosed as
Osteomyelitis???(they had to treat it because they could not prove it wasn't
the Osteo). I have laryngitis so bad I can only speak in a whisper. My work
is really losing patience with all of my time off. I have asked my Dr. about
permanent disability, but he says that would not be good because he is afraid
I would stop doing things and really stiffen up. But then, on the other hand
I also have Asthma and am allergic to all but 1 family of antibiotics, so
when I get sick I just have to ride it out and make sure I do not get a high
fever (then I have to go to the hospital). Guess I am just a little cranky
about all this???? What doesn't kill you, eventually makes you strong???
Everyone, please remember that all the meds you are taking decrease you
immunity and ability to fight off good and bad germs. We are vulnerable to
some weird things that can be very serious, and uncomfortable. It is
critical that you have Dr's that understand this and can help you throught
it, because it is really scary.
Take Care,
Carol

Hello all,
A few people here have expressed an interest on working on a book
about PA based on the support and info on this message board.
Since I'm not having a lot of luck finding part-time work, I would
also like to really get active on this book idea.

I am so confused. I thought that I red somewheres that PA affects
muscle. Then I thought I saw where it affected the tendons. It also
affects the bones. How much of the above is true? I know my doctor
has no clue on what all is affected and I would like some good
information so I can let her know. She is a GP so I know she cannot
know everything.
Why does not PA show up on xrays? IF the knuckles are all swollen is
it just the muscle around it? The report I got on my neck said the
space between the vertabraes are thinner but that is all they saw. I
have had pain in my neck for over a month. Sometimes it is not as bad
but one night of sleeping on a pillow that is scrunched up and the
pain is right back.
Where can I get some good information (aside of here of course) to
show her? To help me? Thanks so very very much. I appreciate all of
this. This PA makes P seem like nothing. I would be happy to have
just the P and would not complain again.

Nancy
Thank you for the information about the water exercise or treatments. I have
done that about 5 years ago. I used to go about 3 times a week. It really
got to be to much for me. I believe the instructor was going to fast and
pushing us to much. There is not a pool around where I live. I wish there
was, I used to live to be in the water, whether a pool, lake, ocean or pond.
:o) I am hoping to move next year and I hope we can find a place that has a
pool in it. That way I could go at my own speed. I have checked with the Y
about going there but there is still a membership to pay. All the health
centers are just to expensive for me also. Money is so much of a problem.
Gentle Hugs
Sherry in SC
Age: 56
"Never underestimate the power of a woman"

Hi Megan
My doctor told me that they would inject the steriod in the muscle. This
muscle is just below the back of the neck to the left a little. The other
one is on the same side just lower. I will be calling the office Monday and
I will ask if it is local or systemic. I have a feeling it will be local but
I hope not.
Sherry in SC
Age: 56
"Never underestimate the power of a woman"
Sherry in SC
Age: 56
"Never underestimate the power of a woman"

Hello Everyone
I want to thank all of you for holding good thoughts for me. The people on
this list are the best. I am feeling some better today but I am still so
upset at the way that doc reacted to me. I have talked to some people and
read about the TrP injections and I guess I will try it. Not only do I have
FMS/CFS/MFS; I also have OA, PA, and diabetes. All of these things can be
very painful and for her to believe I just have general muscle pain is
ridiculous. I am scared to have this done but I just need some relief from
this pain. She wants to inject the steroid in my left shoulder and the left
side of my waist area. Did anyone have something to relax them when they had
this done?
Again I want to say how I appreciate all your suggestions and thoughts. :o)
As for my SS disability, I will be calling a lawyer on Monday; I have been
trying to get SSD for eternity (it feels). This is the fourth time I was
refused. So I am not giving up. To make a long story short, I moved from Va.
to SC, which really messed things up good. I did go before a judge in Va.
and his conclusion was that my symptoms were "suggestive" and some of my
doctors took to long to reply to him, so their opinions did not count. I
have a dozen letters from different doctors explaining my health but yet I
still keep getting refused. I had a lawyer in Va. and after the judge denied
me, she called and said she did not want to handle my case any further. It
took 22 months to go before the judge, 4 months to get the refusal letter.
So everything has been so time consuming. I hope this lawyer I am going to
call is a good one.. cause I am gonna need one.
One more thing, I have written to one of the Senators in this state and
explained everything to him. I have not heard anything yet. I mailed it in
mid April so I am hoping that will help also. It was a 3