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Ok, I don't think this is related to PA, but does anyone have tremors,
particularly in their hands, that seem to come and go?
Thanks for replying,
Tracy

Hi everyone,
I'm new to these boards, and I'm so glad to have found y'all too.
I'm up in the middle of the night-4:25am- unable to sleep due to the
pain from my PA. It seems as though my celebrex has stopped
working. And the advil, tylenol and ecotrin aren't doing much
either. I came online, looking for information on herbal remedies,
natural remedies, diet, etc....I've got to do something, this pain
has kept me from living for too long. I miss being with my family,
and most of all I miss the old me....please, anyone help, I'm truly
desperate!
In pain and depressed,
Xsie

From some of the posts I've read, it seems some people are confused
about that nagging tired feeling.
My rhumy told me that is one of the lovely hallmarks of this
disease. I started Enbrel injections in May and that's the first
thing I noticed. I had no clue how tired I'd been feeling until it
started getting better. So far the Enbrel is doing a good job.
We're decreasing my other meds while I'm on the Enbrel. Our goal is
to just be on the Enbrel 2x a week and darvocet as needed. It's a
good day indeed when I realize I've only had one or two
darvocet's. :)
One other thing, I never realized how lucky I was to have the doctors
I have until started reading message boards. My primary is so
great! We discussed my P a long time ago and I learned his mother
had it as well, so he's always been a bit more alert where my
condition is concerned. He noticed the nail involvement early on and
told me I was at greater risk for PA and educated me on the early
signs, etc. So when PA first reared it's ugly head my way, he and I
were both prepared. I'm also glad he's well connected. My primary
happens to be good friends with my rhumy. Doesn't hurt that my rhumy
is one of the best available in Indiana. So....I'm very very happy
I've been blessed with doctors I can talk to and are willing to do
what it takes to make me better.
Hope everyone is well on this FRIDAY!!!
IndyLaura

Hello all. I had my first appointment today with my new rheumy (who is a
teaching fellow at Duke University Med. School). It turned out great!! The
guy is awesome (even apologized for the 10 minutes that I had to wait in the
waiting room!). He talked with me and examined me--basically spent about an
hour with me and was so easy to talk to and anxious to give me the answers
to my questions. I'm SO relieved! He didn't push any of those hard-core
drugs on me either...just put me on aspirin (a high dose of them, which I'm
going to check on) and said to see if that helps over the next 3 weeks. If
not then we'll see about our other options (cortisone injections,etc.) since
we're trying to conceive. We talked about the possibility of antibiotic
therapy in the future (although he said that since I had responded so well
to it in the past that that's what he'd really suggest. He said that that's
something we could talk about when the time came and that I'd have a big say
in what we decided to do.), so it appears that he's at least open to the
idea, which is good. I'm SO relieved!!!
Anyway, I just wanted to share about this great experience. It's wonderful
to find a doc who will take the time out of his busy schedule and actually
talk to you!!!
Sinead

June,
Could you please tell me what kinds of foods have gluten?
What kind of substitutions have you made in place of glutten-
free foods?
Thanks,
Pat

I know that my husband understands that there is something wrong with
me he just thinks that I shouldn't dwell on it. I know that he is
right but how can I not think about it? It's not like it is going to
go away. A couple of weeks ago I applied for a job to work as flight
attendant. I love to travel more than anything and I really need
this job. My husband is from Portugal and we could use the flight
benefits to visit his family. Having a job that enables me to
travel has always been a dream of mine. The problem is that now I am
beginning to doubt if I will be able to take this job (if I even get
it). It is physically demanding and requires us to re-locate to
Newark, NJ. We are living in Texas now where it is very hot and I am
afraid that if we move to a colder climate my condition will get
worse. Has anyone had problems with the cold? I know that I would
hate myself if I got the job and didn't give it a shot but what
happens if I take it and I get worse?
Leslie

I can really relate to everybody's frustration with friends and
family not understanding what this is like. I finally have given up,
though. I realize that it just is not in human nature to really
understand when someone else is going through something you have
never experienced at all yourself. I can sympathize with someone who
is losing their eyesight, for example, but i can't begin to guess
what it must feel like. In fact it would be presumptuous of me to
think I could. So now when someone asks me "How are you," I just
say "Fine." Especially since when people ask that, they aren't really
asking for an actual report on my health, they are just going through
the social niceties. I really don't think they're being hostile.
I do think,though, that we live in a society where being helathy has
taken on some kind of weird moral overtone, like if you aren't
perfectly healthy, it's not only your own fault, it's also proof that
you are an unworthy person somehow. Isn't is strange that with all
the gyms and all the breakthrough medications and all the working out
and healthy eating and aerobic this and that, people still get just
as many chronic illnesses as ever? What kills me is when some well-
meaning(?)person says, with a perfectly straight face, "You create
your own reality" and then asks me what I think my arthritis is a
metaphor for. So far I haven't said it's a metaphor for my desire to
kill people who ask questions like that, but it may yet happen.
Sometimes I do get angry at all the healthy people I encounter
casually who think that my slow and limping walk, and my inability to
do strenuous things, is something I do on purpose to hold them back.
But then I figure I am not the Crip Police and they will probably get
theirs someday anyway. When people think their health is something
they deserve, instead of a gift, they are bound sooner or later to
have a rude awakening.
Sorry to maunder on for so long but I have had this on my mind for a
while.
Sarah

My big toenail has two large ridges at the sides, which means the
edges dig into my skin. I tried letting it grow long (which was
painful) and then cut it really short (which was worse). Last night,
it even hurt when the sheet touched it. Any suggestions?
Diana in KS

I would like to thank you all. I now know that I am not alone in
suffering, and there is a name for what I have. I have an
appointment with my G.P. on Monday and thanks to the support
of all the members of this site. I shall ask to be referred to a
rheumatologist. I have now more resolve to be even more
insistent with my care providers. It has taken be years to reach
this point. I was being treated for every thing from angina,
trapped nerves, sciatica, mental illness and a whole host of
other things.
I have found a rely good site.
http://www.arc.org.uk/about_arth/booklets/6029/6029.htm
especially for those in the U.K.

Hi Amy. I've been on MTX for 5 years now and did experience more hair
loss in the beginning. As time went by it seemed to slow down. It
seems like it was just a year or two and now it seems to have slowed
down. In the beginning, the drain in the shower was covered with it
and now it only has a little. I also take 20 mg but was up to 25mg
and it didn't seem to effect it any differently. Hang in there, it's
been my experience that it slows down but doesn't completely stop
falling out.
Be careful when brushing and styling as I was told this also makes
things worse. I keep telling myself that if the MTX holds the PA at
a minimum, hair loss is a small price to pay. I don't have a thick
head of hair like I used to but at least I do still have hair.Hope
that helps.
God bless,
Lisa

Yes, Dianne (in Canberra) I too think that the Celebrex is packing on the
pounds. I could live on pasta...just crave carbs!
Back to the old lung/breathing problem. Saw a new pulmonary doctor in Seattle
today who my rheumie wanted me to see. Loved this guy. Anyone looking for a
pulmonary doctor in the Seattle area...let me know and I will be happy to send
his name and address. Anyway, he told me that there is lots of lung problems
for some sufferers of any inflammatory arthritis but in my case it does appear
to be just what the pain doctor thinks...muscles/skelatol. But he said if I do
not improve on the pain doctors regime to get right back in touch with him and
he will do even further testing.
Anyway, saw the pain doctor after and he did lidocaine-steriod injections in my
back (so painful) and hopes that will hold me while we take a six week trip
cross country in our motorhome. The acupuncture was not doing anything at all.
So it once again appears that the PA is the culprit behind the breathing
difficulties from the tendon and muscle inflammation. It has been soooooo
miserable.
Thanks everyone out there for caring, writing and sharing. It helps so much!
Linda in Poulsbo, WA.

Hi all,
I just want to pass along the following warning for anyone on Enbrel therapy.
Please be sure to go to your Dr. IMMEDIATELY (Internist or Rheumy) if you
feel you 'might be getting sick'.
I've been on Enbrel for the past 18 months and have been thrilled with the
results. Last Thursday, I started to feel a little sick with a sore throat
and fever. By Friday I was so sick that I had trouble walking into the Dr.'s
office, even my skin hurt! A rapid strep test showed multiple strep bacteria
(strep throat). When my Dr. drew my blood he saw that my white count was
19,000! Because I was on Enbrel therapy, I was already septic at that point
and he admitted me immediately into the hospital because I needed
intravenous Penicillin, which would be at a much higher dose that I would be
able to get from oral Penicillin therapy.
I stayed on IV Penicillin for the next four days (I was also terribly
dehydrated). When my white count lowered down to 8,000 they released me from
the hospital and I'm still taking 500 mg of Penicillin 4 times a day (for ten
days total). The strep is pretty much gone and I feel better than I have
felt in a long time.
The most important thing to know is that I AM NOT ALLOWED TO BE ON ENBREL
DURING THE TIME I'M ON ANTIBIOTICS. The Dr. says that the Enbrel will
interfere with the antibiotics ability to kill the strep bacteria. He read
the Enbrel insert which clearly states that there have been fatalaties among
Enbrel users who had sepsis. That is why he was so worried about me.
My Dr. would like to see me off the Enbrel for good but I'm too nervous that
my pain and swelling etc. will return.
Meanwhile, it has been about 10 days since my last shot of Enbrel and so far
I'm still ok, but then again, I'm still taking 2,000 mg of penicillin every
day and there is something to be said about antibiotic therapy relieving PA
symptoms.
I'll decide what to do after my last dose of penicillin (on Friday). I'm
even thinking about the possibility of continuing on antibiotic therapy
instead of reverting to the Enbrel (since I feel so good on the Penicillin).
I'm sorry this post is so drawn out but I hope my message got across to the
other Enbrel users about the dangers of procrastinating a visit to the Dr.
when you don't feel 'right'.
Good health to all!
Rivky :-)

I was wondering if anyone else has had a significant unwanted weight gain
while on these medications. The rheumatologist has said it is a now commonly
known side effect, just like it is with steroids. It has something to do
with TNF. Too much TNF causes "wasting" Too little causes carb craving and
increased appetite. I cannot wait to get off TNF modifying drugs now and
take off this extra weight. I wonder what is in the pipe line next.??
Hopefully some volunteers will come forward to keep up to date with the
medical journal literature so we can keep abreast of the clinical trials
etc...
Michelle

Thanks Nadine. What happens when our tendons and membranes are
swollen? Is the joint affected? Is damage being done? I always have
all these questions for my doctor and even write them down but for
the last year, every time I go I have to have an injection somewhere
so I concentrate on that. Do ice or heat seem to help the tendons?
God bless,
Lisa

I am grateful that I found a place to share my story.Briefly ,the
above question was the last question that I asked a practicing
medical doctor the fifth or sixth to review my case (in 15 months).I
am /was diagnosed w/ psoariatic arthritis and fibromyalgia in the
spring of 2000.Unquestionably this has been the most challenging year
of my life.
I asked the above question to a well respected and highly regarded
chief at one of metro NY's leading hospitals. Mind you this was not
the answer I was searching for, he told me with outpatient Iv
traetments and methotrexate, I would see remarkable results (I had
50% function of my hands and overall be "less" discomfitted.)
At this point I had heard it seen it or tried it w/ the medical
community.If this was to be my fate I decided to try a "different"
approach. I leave you with this fact I no longer take any
medication.If you are interested reply to this post and I will tell
you more.This is honest no Bs, no gimmicks .Bradley

I have never heard of this particular virus and wonder if you could share with
us, exactly what it is, how it infects a person, etc. Thanks so much.
Linda in Poulsbo, WA. and still having breathing problems!
When I reported that I had the Coxsackie virus shortly before developing P,
he seemed very intrigued. Have others had the Coxsackie virus, and if so,
was it close to the time you developed P or PA? I'm wondering if there is a
connection. June"
"

I have just been diagnosed with PA. I developed psorisis 6 years ago
and have probably had mild symptoms of PA that I didn't recognize. In
the last year, I have had more severe problems with my left food and
hand. My foot was diagnosed as a jammed toe. My finger was diagnosed
as infected and I was given Augmentin which helped my finger and my
foot considerably. As a result I am interested in using antibiotic
therapy rather than the Methotrexate pushed by the doctor I saw.
I would appreciate any suggestions on locating a good doctor in the
Santa Monica/West Los Angeles area that uses antibiotics to treat PA
and hopefully is also supportive and encourages patient participation
in treating this apparently debilitating disease.

heava88@h... viviejeffe@i... pjtread@a... bkerby@a...
blarney20086@y... paul101333@a... marl@u... bunnywhite@h...

Well, alot has been happening here. Jerry continues to be preety much pain
free on Enbrel-not much to tell about him. He did injure his shoulder at
work a few weeks ago and had to be on light duty but now is back to work.
He is in the process of looking for another job that isn't so physical. He
realizes that it is only a matter of time befor he can't do what he is
doing.
My insurance has approved me for Enbrel. YAY! I should have it by Tuesday.
Here is what the letter of medical neccessity said:
"She has severe inflammatory arthritis with persistant synovitis despite
Plaquenil. She is steroid dependent, which is very concerning. I strongly
recommend Enbrel as her safest and most effective choice at this time, given
the data presented at the American College of Rheumatology national meetin
in Boston 1999, which demonstrated that Enbrel was superior to methotrexate
in early inflammatory arthritis."
I thought it was interesting that there was no mention of RA or PA! I hope
this might help others get approval for Enbrel. It has worked wonders for
Jerry and I am anxious to get started on it myself!
RE: Plaquenil-my rheumy mentioned the eye problems and I had my eyes
examined and all is fine at this time. Is there a safe level of this drug
or is it long term exposure that causes problems? I hope to get off of it
once the Enbrel kicks in. I am also taking 10 mg of prednisone daily which
doesn't do much but the doc doesn't want me on a higher dose. I take 200mg
of Celebrex twice a day which just takes the edge off...
Hope everyone has a pleasant Saturday!
Marcie

Hi everyone. Last year I ruptured a couple of disks in my cervical
spine, which made using the keyboard extremely painful, so I got
Dragon Naturally Speaking software. I really liked it but it is hard
to get used to. You have to enunciate very carefully and it makes
weird mistakes, since it will put in what it thinks it hears, not
what would make sense--so if you say something like "next week" and
it doesn't quite get it, it might type "neck suite." But if you can't
type it is worth the effort. Also one's friends get a kick out of
trying to figure out what you meant, at least if one has the right
kind of friends.
But all this brings up something I have been wondering about--is
there any connection between psoriatic arthritis and degenerative
disk disease that anyone knows of? So far I have been seing two sets
of docs about these two things and neither set seems to pay any
attention to the possible connection. I have heard of psoriatic
spondylosis but I had the impression that was lower back only.
Also, thanks to everyone for mentioning the problems with feet--for
the last few years my feet have been slowly disintegrating, or so it
seemed, but I didn't know it had anything to do with PA. I just
thought I had the world's worst callouses and the world's crumbliest
soles. Aha! It is such an interesting process to discover that this
seemingly unconnected collection of physical problems are all
related. Next thing I know I'll find out my asthma is part of it too.
So thank you all again for talking openly about what is happening
with you--you are giving me a whole new outlook.
Sarah

Welcome Bill-- and please never apologize for the length of a post! I am
always hoping that all new members give a lengthy post so we can all get to
know each other better!
Hearing again how tough it is getting SSDI makes me heartsick. Have you got
an attorney at this stage--I hope so. From what I understood when I went
through the process, there is a list of attorneys who are approved by uncle
sam for dealing with SSDI. In addition there is a fixed fee schedule that
they have to agree to- so they cannot take advantaged of infirmed and
desperate people (us!) My case took so long that the judge ended up awarding
me two and a half years back pay. This was so wonderful that I was able to
get a new station wagon that is the lifeline I use to have others drive me an
hour and a half each way to the rheumatologists each month!! I got a Taurus
Wagon because it is roomy and you do not have to climb up to get in--like
with so many of those mini vans and SUVs.
I recommend asking RAHarris@..., a member of ours who is a professor
in computing for a recommendation the Voice recognition software. He will be
more than happy to give you advice on that I am sure. Do be sure to check
out our website. It is growing every day.
Hearing how much pain you are in, I was wondering what meds you are taking
specifically and whether you have tried Enbrel, Remicade, etc... They do not
bother the stomach like Metho and Arava do. They are expensive so you would
need good prescription coverage. Please feel free to e mail me directly at:
CTNative@...
if you would like to discuss your situation, I would be happy to fill you in
on what I know of all the latest options.
Michelle
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 650 members from all over

This is a difficult question, It took me a full year of soul searching and
several attempts at flexible part time jobs (all of which failed) to
convvince me that there was no way I could be a relied upon employee given
my unpredictability of my disease process.
Unfortunately, in the US, mowt companies give only ten vacation days and
about five Mondays off to celebrate Christmas and New Years.
I decided along with my doctor that short of a miracle cure coming out, I
have a severe case of psoriatic arthritis, arthritis and Sjogrens Syndrome.
I also get frequentl migraine/sinus headache and suffer with depression.
Although it is a lot of red tape and can take up to two years for your first
check, I would apply and to keep food on the table, my spouse worked and I
did a tiny bit of home tutoring as I was able.
I hope this helps you a little
Michelle
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 650 members from all over

No doctors have said anything about this to me....... But it doesnt take a
rocket scientist to figure it out..... I feel like we need to keep this
disease and other diseases that we may have under control as mush as
possible.. Because all of my conditions are the result of my screwed up ,
malfunctioning , over-active immune system...... (allergies , psoriatic
arthritis , FMS , and who knows whats next) I hate to say it but I think
that we are very much prone to even more serious auto-immune disorders if we
do not keep the ones we have unders control..... I guess DMARDS are the
only meds out there that can seriously suppress our out-of-control immune
systems... So if your on them , I would try to stick with them as much as
possible... NSAIDS are just numbing the pain...

Thank you everyone who helped me with my question about docs in
Massachusetts who are open to the idea of antibiotic treatment. I am
in the midst of one of those miserable changes of insurance because
of my new job, and I don't seem to be in the system yet so I can't go
to the doc until it gets figured out, which may be a few weeks,
because of the usual series of snafus. Meantime I am just trying to
make it through the days--working fulltime, commuting two hours a
day. I find that I am so stiff after the afternoon commute that I
hobble into the house like Igor in Young Frankenstein. My outside
life has abruptly dwindled to nonexistent--it's just work, commute,
sleep, commute, work, commute, etc. I think if I had to choose
whether to get rid of the pain and keep the fatigue, or get rid of
the fatigue and keep the pain, I'd settle for the pain. It is so
awful just having no energy EVER. As some of you have mentioned, it's
also difficult having the kind of condition that doesn't make us look
any different--people assume that since I look okay, if I say I can't
do something I am just being a whiny little wimp. If they could have
this pain for just a few minutes, even, I imagine they'd change their
tune in a big ol' hurry.
But life has its good moments too--the other day i sat outside in
Cambridge at lunchtime and ate a sandwich and listened to a street
musician play classical guitar. I certainly have gained an
appreciation for life's small pleasures, that's for sure. Even just
finally being able to go to bed at night with a good murder mystery
is something to savor. I never would have been able to savor these
sorts of things back in my callow (pain-free) past. I'd sure love the
chance to be callow and pain-free again, though!
Sarah

astraates@h... chris@t... thomason@g... irabuc3@y... vail@r...
t_bird_4_ever_02@y... BarnabyQ@a... UncDurt@a... zipswitchus@y...
tbird@v... john_and_lee@y... melee_85351@y...
Welcome to the Psoriatic Arthritis mailing list. We are a group of
more than 700 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

At work this week, I had to do a bulk mailing consisting of folding
three sheets, stuffing the some 500 envelopes, and doing double
labeling on each envelope. This took 2 days, since I only work part-
time. Here's the problem, I have been having a terrible flare in my
wrist since April and just had 2 injections of cortisone 2 weeks ago,
the wrist was still a little swollen but the day after I finished the
mailing, I got up that morning and my wrist was swollen worse than
before the injection. I can't afford to be going to the doctor for
shots every few weeks. Can we go to our employer and explain the
situation and refuse to do repetitive work? Another question, in the
5 years I have had PA, I have never had a swollen joint go down on
it's own, is that everyone else's experience? I have to do a
Prednisone burst or more commonly, I have to have the joint injected
with cortisone. In December, I had my thumb injected (after 2 months
of swelling), that cleared up only to go to my ankle, had that
injected and the swelling went to the other one. Had the 2nd ankle
injected and it showed up in my wrist. My doctor and I usually wait a
few months of swelling out trying ice, wrap, splint and only after
that hasn't work, then he does and injection.Very frustrating!I'd
appreciate any responses.

There is a fairly new drug in the US called Arava. It is also an
antimetabolite like metho, however it does not have the severe side effects
like fatigue and vomiting etc... In addition, you take the one small pill
daily- no shot necessary. Arava has had a significant number of people
develop diahrrea and or pre-ulcer stomach pain- but that is easily remedied
by taking Prilosec right in the beginning when you start on the arava. It
can take 8-12 weeks to start to work- but when it does it can be quite
miraculous it works really well on the psoriasis as well.
If you dropped Metho simply due to side effects, perhaps your doc did not
educate you well about handling the side effects. For instance...you should
take an anti-emetic like Zofran or Kytril about half hour before your Metho
shot and continue to take it for the first 24 hours. taking folic acid daily
as well as timing your weekly Metho for evening dosing helps relieve the
severe fatigue problem.
Adding in Neoral (cyclosporine) sometimes has a synergistic effect on the
arthritis and is something to discuss with your ra once the Metho is not
doing it all alone anymore.
I personally got a lot of mileage out of Imuran and Imuran mixed with Arava
too, for another idea.
It is my understanding that you need to stop the joint destruction of the
disease-and just taking pain meds will not do that unfortunately.
hope these suggestions help
The PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 600 members from all over

Hi everyone who has enquired about Mike
I have been trying to get hold of his wife these past few days without
success - I have sent on greetings that people sent to me and will update u
all as soon as I hear more news. All I know so far is that he was awaiting a
by pass op any day now.
Nigel :o) (uk)

i went to my primary doctor who is also an orthopedic on monday. before i
could mention pa she suggested that i may have it and recommended a referal
to a rhumy. I tried to prepare myself for the possiblility of having it, but
now that i heard a doctor give the possibility i'm on an emotional roller
coaster.
tuesday i had problems with my knees. i never had more then a mild pain, but
my knees were actually buckling under me. I broke down and took motrin which
i didn't want to take as i still breast feed my baby.
oh, forgot to mention my immune system is going wacko so I wonder if that may
be why i'm suddenly having the pain so much worse?
welll, today, i don' know how to describe it althogh i'm sure many of you
know worse and i'm really getting scared. I was with my chlidren at one of
our homeschool functions when my knees started to bother me again, so i sat
down. next thing i knew my knees were swollen and i got this pain in my
wrists, hands fingers, elbows. my body feels entirely stiff in the muscles,
especially my neck and shoulders. is this normal for pa? i was in so much
pain i started crying on the way home. i had the motrin in the car and i took
it before we left our homeschool function, it took the edge off but
everything still hurts and is really stiff. luckily i discovered my elderly
neighor has lupus and fibormyalsia (sp?) yesterday when walkng home from the
parking structure. my knees were giving out on me and she saw, cam eoutside
and loaded me in her golfcart and brought me home. today when i got home i
just drove over to her place and sent my oldest, 7 years old, to her house to
ask her to give me a ride in her golf cart from my car to the house. i never
imagined it coming on like this. is this something i should expect to happen
or could it be something else entirely. i'm really scared now because i have
3 children ages 7 years, 6 years and 18 months. i don't know how i'm going to
take care of my children if it's going to be like this.
sorry if i've said to much, i'm really getting freaked out. i'm too young for
this!
okay, taken too long typing this now, better stop,
kimberly

emmaandshila2home@y... nggator@g... dralla@v... alw22us@y...
erennie@p... jaldh2001@y... jem515@a... lovquilts@v... gkcalkins@y...
dgznj@a...
Welcome to the Psoriatic Arthritis mailing list. We are a group of
over 600 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

Though the site is very new and not that many ratings have yet
been
submitted, these are the top rated Osteoarthritis (OA) and
Rheumatoid Arthritis (RA) treatments to date at
Remedyfind. Though Psoriatic Arthritis is not one of the health
conditions to be rated at the site, I'm wondering if there is some
treatment overlap.
The first number after the treatment name is the overall rating
score; 1 =
lowest / 5 = highest (the overall score averages the ratings for:
effectiveness; lack of side effects; ease of use; cost
effectiveness).
The second number shows the number of individual ratings
(based on remedies
that have received 3 or more ratings).
Minocin etc. (Minocycline) 4.8 (7)
Tylenol etc. (Acetaminophen) 4.5 (3)
Glucosamine 4.1 (4)
Rheumatrex etc. (Methotrexate) 3.9 (5)
Percocet etc. (Oxycodone and Acetaminophen) 3.8 (3)
Arava (Leflunomide) 3.6 (5)
Remicade (Infliximab) 3.6 (3)
Acupuncture 3.3 (3)
Plaquenil (Hydroxychloroquine) 2.9 (3)
To see all the ratings/reviews and to submit your own
rating/review, go to
http://www.remedyfind.com/hc.asp?id=20
Cheers, Brett Hodges

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Welcome to the Psoriatic Arthritis mailing list. We are a group of
over 600 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

HAPPY MOTHERS DAY
I would like to wish every one of you who are a Mother & Grandmother's a really
Happy Day
God Bless you all
Beverley in Australia.

Hey, Jenny here. I want to report that my PA has been in abatement
pretty much for the last month. And i am sleeping well without
Ambien. I went off it because I began to get very weak in the knees.
Just couldn't get my legs to carry me forward and would need to sit
of lie down a lot. That stopped completely about 3 days after I quit
taking the ambien. My carpal tunnel has improved by leaps and bounds
and now doesn't bother me at night and is only present when I have to
keep my hands raised in some task like driving or blow drying hair,
but still very little. All in all, I am doing very well. But I am not
taking anything for inflammation and I saw a new Rheumatolgist
yesterday who wants to put me back on something called Mobic and a D-
MARD of somekind. I am dubious since i feel so much better. What does
anybody think? I'm just afraid of rocking the boat. I know that I am
not cured because I still have stiffness in knees, shoulders, hands,
but not the horrible pain but each day I feel a little better. She
says its important to treat aggressively the first two years. But why
would anyone want to take anti-inflammatories unless they have to?

Hi everyone,
I had another treatment of Remicade- this time 500 mg not 1000 like the
previous three.
About four days prior to the last 1000 mg treatment I began a huge flare. My
sed rate was over 50. the joints involved were all- especially the
sacroiliac, neck and bottoms of feet and hands. The treatment did not work
for the first time! I had to go back on MSContin and a higher dose this
time.(dose was the same for the last two years for flares). I read that
tolerance develops when you have chronic pain and that this is normal and not
a sign you are a druggie. Thankfully,
I am able to taper off and stay off with no problems once a flare is over.
Today, my right hip felt like an internal pop occurred and it is swollen and
feels like heck when I try to walk to go up or down stairs etc... The
recliner is the only way to sleep with the hip and Sacroiliac in this much
pain. I am praying that this treatment of Remicade works. If not, I will be
going to Prosorba , it looks like.
Currently, I also have infected hands and feet in the psoriasis, which hurts
like paper cuts all over. I am still having blurred vision in my right eye,
with no explanation. I am trying to keep my spirits up...but things are going
from bad to worse each day it seems.

Hey, all. Thanks for the great feedback about the long time to
diagnosis. My arthritis is most noticeable in my ankles and now my
knees, so walking is NOT a form of exercise I want to take up. But I
do know I desperately need to exercise, so I have decided to try
looking for a yoga class where the instructor is knowledgable about
people with physical limitations. In the meantime I found a book
called something like Easy Does It Yoga (I'd give the full name and
author but that would involve walking into the other room, and that
is NOT gonna happen) that is focused on yoga for folks like us, and
even for people who are wheelchair-bound or bedridden. I am starting
very slowly and carefully--mostly just ankle exercises and arm raises-
-but so far so good. Does anybody have any experience long-term with
yoga? Last year, in a moment of delusion, I joined a gym, where I
tried using the Nautilus equipment while watching all the buff body-
worshippers toss off seven zillion arm curls without a thought. Ha. I
unjoined as soon as decently possible. The weird looks I get when I
am out shopping (a.k.a. limping around) are bad enough, without the
sneers of people who buy lycra garments by the dozen and obsess about
reps and abs and delts.
Isn't it weird how people seem to think that having a disability is
in some way a moral failing? It's almost like popular culture is
coming to believe that physical perfection equals virtue.
Sarah Stone

I am curious to know if anyone else is on the same med combo as I am for
the 'topical' medication.
2 weeks of Clobetasol and then 2 weeks of Dovonex.
Suzanne

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Welcome to the Psoriatic Arthritis mailing list. We are a group of
over 600 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

I was just wondering if anybody can give insight to swelling versus weather.
Because of the medication I'm on for the depression I know I can't stay in
the sun for any length of time. Hell in January I was driving to work (about
a 30 min drive) but it was a beautiful (cold) but sunny day and the sun came
through the windows and by the time I got to work, the front part of my
thighs were sunburnt (pretty bad too). I had black slacks on and the
darkness held the suns rays. That is just a hint of what can happen is
you're sun sensitive.
But--to get to the reason I'm sending this. There are a couple of women I
work with who also have arthritis but not PA. It seems like when everybody
else if having a bad day I seem to be okay and vice versa. I seem to be
totally opposite from those with regular arthritis.
Another thing is that I can use neither heat nor cold compresses on the
swelled joint. I can tolerate about 1 minute of either and I want to cut the
part of my body away. I stopped trying to use either because the pain is so
severe. The docs think I'm lying.(surprise, surprise) and that doesn't do a
lot for my attitude about the PA.
Does this happen to anybody else or am I just "SPECIAL"?

Hi, all. Thanks for the warm welcome last week and for listening to my
whining. I am continuing to get more aches and pains. This week my shoulder
bursitis started up again for the first time in four years. I'm thinking
that the arthritis flare is related to a flare in my psoriasis on my scalp.
I don't know very much about the relation between the two. I was diagnosed
with the PA ten years ago and my last problem with P was two years before
that. Does your arthritis get worse when your psoriasis is acting up? If I
get the P under control will the PA improve?
I have an apppointment with a dermatologist scheduled for next week. Does
anybody have any suggestions for what works on scalp psoriasis? I don't know
what's out there anymore. I remember Lidex cream worked pretty well even
though it was a mess. Let me know if you have any suggestions.

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Welcome to the Psoriatic Arthritis mailing list. We are a group of
over 600 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

Hi all,
You might check out this link on the Great Smokies Diagnostic Laboratories
website. It talks about the possible connection between an imbalanced
intestinal environment and PA.
http://www.gsdl.com/news/connections/vol9/conn20000823-2.html
Wishing you all pain free weekend,
Amy in Oregon

hi all,

just wanted to pass on latest news about my son. took him to neurologist

today. still need to do mri to rule out internal problems, however, dr does

not feel he has any neurol. problems. he agrees with us that there is

probably sometime wrong ear wise. no mention of the "c" word, thank god.

or tumors, always in the back of your mind though. we are immensely

relieved! insurance has to approve mri, so i don't know when it will be.

soon i hope just to get it out of the way.thanks for all the prayers.

thanks

susan in ohio

Dear friends,
I am sorry I was in absentia for the last two and a half weeks. I had a huge
flare a week prior to my scheduled treatment of the IV anti-TNF I am on.
Then when I did have the treatment- even now- twelve days later- it is safe
to say it has not worked! I am in a huge 10+ pain right now- from my neck to
the sacroiliac and most of the joints. I am going to the rheumatologist at
Columbia tomorrow to see what he suggests- the last time I was there my sed
rate was 65- which was darn high for me already- As far as I know the
Prosorba Column is all that is left on the ammo shelf and he mentioned that
it was a nasty go- so I am not thinking he will even prescribe trying it
anyways. It has been back to the daily MSContin and no driving, etc... which
is horriffic when you have three active lively children aged 11, 12 and 14!!
Thank god for other moms who will take my 12 year old to tennis,etc... We are
living in a rural situation so I feel terrible that they are going to be so
isolated again. I am also praying that my husband keeps up the good humor and
patience...I can only imagine how trying it is for him too. Has anyone read
of any breakthroughs lately for the PA treatment? You all know I have tried
everything medically available and that was after going all natural at first .
I think it is great how well the list putters along daily with everyone
supporting each other. Let's keep up helping each other- we are all in this
together.
Michelle

Hi all,
Recently I've been noticing a major sudden change in my vision. It seems to
be coinciding with the start of my fingernails and toenails loosening from
the nailbed. I feel like I have some sort of skin over my eyes (no, I don't
have catarachs, thank God... I'm not ready to be that advanced beyond my
years yet)and tonight I was quite shocked when in a class I am taking, I saw
everything double - kind of like 3D writing created by putting a shadow
behind it. I know this sounds really strange and I'm getting it checked
ASAP, but I'm wondering if anyone else in this group has had a similar
experience.
Today, after 5 long months of waiting, I'm finally going to see a rheumy.
With the way I feel now, I think I'm going to make it to his doorstep and
then collapse in a huge undignified heap!
Heather

I have found an interesting article:
http://www.healthexcel.com/docs/_cand1.html
which links overactive yeast to all my conditions including P and
arthritis. Anyone else who has chronic problems with yeast
infections should read this article.
Diana in KS

Wow!This is a busy list,which I think is great by the way.
I have been reading the digests and still have about 3 to go,I am way
behind.
My husband was diagnosed w/PA last summer.He had the arthritis more than the
skin problem at first
but now his skin is getting worse.He is 35.We have only been married for 2
1/2 years.I have seen his arthritis get
much worse in those 2 1/2 years:(....I feel so bad for him.He can't sleep
most nights.He can barely get up out of the bed in the mornings.He does much
worse in the winter,is this common? He says that tanning beds make his legs
feel alot better.
His pain started in his legs,behind the knees.He hurt his hip on the job and
that is getting to be a big problem now,too.He says it feels like it's going
to give out sometimes and he almost falls.
About 6 mos ago 2 of his toes on his left foot started hurting/swelling
REALLY bad.If he barely hits it or if one the kids barely touches it,it
hurts really bad.One of his shoulders has started giving him alot of trouble
lately,too.Poor guy,it really hurts me to see him in so much pain all of the
time.We pray for him alot.He hasn't been hurting so bad these past few
days,thank God!
He is on 3000 mgs of azulfidine and 225 mg of diclofenac sodium daily.His
rheumotologist just doubled his azulfidine dose a couple of months ago.It is
really hurting his stomach.He has been trying to cut himself down on it.
He works for the water co so being out in the cold and in water alot,I'm
sure,doen't help matters any.
I am so new to PA but have tried to learn everything I can about it.His dr
says that he has a mild case of it.
I hate to see it when /if it bcomes more serious.I'm sorry for rambling.I am
going to get my dh to read the digests so
he will know that he's not alone in this.
thanks,
Jenn A

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Welcome to the Psoriatic Arthritis mailing list. We are a group of
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thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

Hi,
Being new to the group, I have been trying to 'read' some of the
previous posts, (too many to get thru!!), but one that did interest
me was from Tracey, and I have quoted it below, and will follow up
with a response to it, or my story of TEETH!!
<<
Ok - I found out what is going on with the teeth - not good - I was
diagnosed
with trigeminal neuralgia - Severe pain caused by a nerve in the face
which
will flare and go away - treatment is anti-seizure drugs. However,
I'm 40
and usually this happens to people in their late 50's and 60's. Ugh!
why me?
don't I have enough pain already?
Sorry- feeling a bit sorry for myself -
I'll give myself a one day pity party, then an attitude adjustment.
Hope the rest of you are well,
Tracy
About 12 years ago when my conditions started to 'kick' in! I noticed
that a tooth was becoming loose. Didn't think anything of it.
Eventually it 'dropped' out! Few months later a 2nd and 3rd tooth
decided that they wanted to part company with my mouth! So, I visited
the Dentist, ('cause I was brave!! lol), and he said that my
conditions were causing me to lose my teeth! Said it was a great
shame because 'they' were healthy, and no gum problems.
So, over a period of about 5 years, my teeth, one by one, started to
drop out! (looking on the bright side, at least it didn't cost me a
fortune in Dental bills !!!). All I had to keep doing was going back
to have part dentures made, (so that I could eat!!), until eventually
they all disappeared, (now have me full set!!!)...
I only relate this to highlight how the conditions effect us all in
different ways....we are a 'strange' bunch indeed !! <BG
Mike (from the UK)

Hi everyone-hope all is as well as can be. Jerry is back on the
Enbrel-3 doses now and starting to feel better. The 3rd week he was
off was the worst-not as bad as before the Enbrel but getting there.
I am glad that is over!
Here's the deal with me-5 years ago after my son was born, I began to
feel REALLY bad-like I'd been hit by a truck. After seeing several
drs, I was diagnosed with Fibromyalgia. I saw a rheumy who sent me
to another rheumy for a 2nd opinion. I began weekly massage therapy
and chiropractic. About 6 months later I had a follow up with the
2nd rheumy and he "undiagnosed" (odd I know, I have never heard of
this)me with fibro because I no longer fit the criteria. I was
feeling great until about 8 months ago and then...
It started with a pain in my shoulder and then I lost strength on my
right side and began to limp. I was sent to a neuro and had several
tests done-EMG nerve velocity, evoked potentials, brain MRI, cervical
MRI and thoracic MRI. Everything was normal or inconclusive. I have
seen 2 neurologists, 1 neurosurgeon, an orthopedic surgeon and of
course my primary. In December the joint pain started and my right
hand swelled up. This is totally different than I felt 5 years ago.
This is very specific joints. I finally got in to see my husbands
rheumy last week and he started me on a trial of prednisone to see
how I would respond. After 2 days I began to feel much better and
the swelling in my hand went down. At my follow up on Monday, the
doc said I have either RA or PA (no P). My blood work was all normal
which he said is normal in early arthritis. The meds I am on now
are: Celebrex, zoloft, amitryptiline, prednisone and plaquenil.
Does this sound familiar to all of you? I am now on day 4 of the
prednisone wean and starting to hurt again and the right hand is
swelling up again. I see the rheumy again on May 9th.
Any info/opinions would be much appreciated!
Marcie
wife to Jerry/PA sufferer and me with who knows what!

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We would love to hear about you, so tell a bit about yourself to the

Just wanted to say thanks for the support! it means so much to me :-{)

God bless,

Patrick

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Welcome to the Psoriatic Arthritis mailing list. We are a group of
over 600 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
We would love to hear about you, so tell a bit about yourself to the

I went to see my dermatologist today and he was recommending a new
Psoriasis treatment, the XTRAC excimer laser system (that's a
mouthful). He said he will be one of the few doctors in my area to
offer this. Since it is new, my medical insurance will not cover the
treatments. Hypothetically, it should take 3-4 treatments at $100
dollars each to clear the P, with results lasting 4-6 months. Being
a natural sceptic, I'm not quite ready to jump on the band wagon.
Has anyone tried this treatment? My PA has been much more of a
problem than my P lately, so I'm probably going to wait awhile to
read more about it. But he did make me curious.
Here's a description from the company website
(http://www.photomedex.com) of what the treatment is:
The XTRAC excimer laser treatment
system from PhotoMedex is the first
FDA market approved laser treatment for psoriasis.
Using a carefully focused beam of laser light delivered through a
sophisticated fiber-optic delivery system, the XTRAC system is
designed to clear unsightly psoriatic skin plaques quickly and
effectively. Because it concentrate light on active lesions, XTRAC
allows your doctor to deliver the high-exposure doses necessary for
rapid clearing without risk of damage to healthy skin.
Andy
(I can never remember my blood type and I'm not a nurse--I'm a
reference librarian in Florida, which I marked as other on the
recent poll)

Dear All
I am new here just having found this list last night. I have
previously tried to post today but it hasn't come through so
apologise if eventually it does and you end up with two posts from
me.
I am wondering if anyone on the list has experienced any difficulty
getting pregnant when they have PA. I am 34 years old and have
undergone unsuccesful IVF treatment. Statistically my chances are
good to conceive through IVF but it hasn't work and there are some
schools of thought that having an autoimmune disorder is part of the
problem.
I am interested in hearing from anyone who has had this problem or
who knows where I might get information about PA and fertility. I
was only diagnosed with PA last year though have had the symptoms for
a number of years. I have a theory that while I have had P since I
ws 20 it was my bout of Ross River Fever that brought on PA.
I appreciate you taking the time to read this message and would very
much appreciate any advice or opinions you might have.
Regards and thanks
Robyn

Thank you very much Marisa..
Hey guys the site also has a 90 minute talk about PA with real
doctors who are in the front line of helping us. Go and take a
look.. please...
Roy

Today I feel at the end of my ropes. The pain in my hands and feet has been
intense and unending. I have had to go off my Indocin and Advil (6-8 at a
time, every 4 hours or so) this week to clean out before my liver biopsy, so
things are shaky at best. When I see my Dr. next week after liver biopsy (my
third) I want to ask for some pain medication, but don't know what is best.
Any suggestions? I have some left over Vicodin from a surgery, and have been
taking that at night so I can sleep a bit. My right hand is just about
useless, terrible swollen from fingers through wrist, and a 10 on the pain
scale. So is my Right shoulder, hip and foot. Left side is a bit behind,
but I fear it will catch up. Am on 20 MTX (injection 1x/week) and have been
for several years. Work full time and have a family. Exhaustion recently
has been overwhelming. Also have diabetes and shingles in the inner ear.
There must be some relief from the pain. Ideas????

hi all,

before taking zinc make sure you ask your dr. it's my understanding the

root of all our troubles is an over active immune system. i take an

immunsuppressant for my p. the last thing you would want to do

is bolster it and make things worse. i actually check with my pharmacist

before trying any thing new. he knows more about that stuff than the dr.

also, i am glad other people use aleve like i do. when i first got sick i

tried every otc, bayer, tylenol,bufferin,anacin,excedrin,etc. darvocet too!

nothing has ever helped get rid of the little aches like aleve. didn't know

there was a pres. strength. hopefully won't need it.

have a great week.

susan in ohio

traci@t... rose673@h... skyeandmary@a... kathym52@h... BarnabyQ@a...
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Hi everyone and welcome to the Psoriatic Arthritis mailing list. We
are a group of over 600 PA'ers from all over the world who share
information, thoughts and feelings about PA and how it affects us and
our lives.
Feel free to say hello, and tell a bit about yourself to the group by

I've not been on this list long but have not seen anyone write about
using sun beds for relief from the p..........i've used the beds for
several years, usually in the spring months to clear up as much as i can
from the cold winter months here in the northeast.
even w/ mtx my elbows, knees could keep me from wearing anything that
wasn't long long long........
i've now been on prednisone since Oct and still have bad knees and
elbows.
curious how many others have been successful........
nanc
nrambo1651@...

Treatment for psoriasis for the face or genitalia is very touchy, because the
skin thickness is much less there than all the other body parts. For this
reason it is not recommended to use the same cream for your legs or
scalp (for instance...) than for your face or genitalia.
We all know that the steroids actually cause thinning of the skin to begin
with, so please be careful and call your dermatologist before you put any
steroids on anywhere but where has been explicitly advised on you
prescription label
Call me a worry wart!
Michelle
We PsoriaticArthritis mailing list informational support group I founded
three years ago is doing very well now with over 500 members from all over

Delurking with a thank you to Alice -- I joined the list here about a week
ago, shocked to hear so many with the same ailment(s) that have plagued me
for 45 years and more. I'm not on medication -- I don't know if I'd call it
as much remission as a fallow period, temporarily mobile and rash free. I
saved the first post of Alice's that I saw, printed it, and framed it for
above my desk. Things could be SO much worse -- in that sense I've been
lucky, and I need to remember that.
My problems were always more with psoriasis I thought: diagnosed as
dermatitis, psoriasis, nonspecific dermatitis, pregnancy rash and eczema. My
all time favorite diagnosis was 'atopical pomphlex' (and I have no idea how
to spell that; it's pronounced 'pum-flux.') Meaning we have no idea what
causes it but it is only on your hands and feet. Gee, that was such a help!
Cortisone creams, tars, de-stressing, saran wrap and ice -- and nothing
worked much. Then the arthritis kicked in. How do you tell people when you
look fine that you HURT? That your energy is in the toilet? I gobbled up
those posts. It is so good to know it's not my sanity in question, just my
body. :) There are days when I find it difficult to sit or stand or lie
down; I've seen notes from several here that tell me you all know what I'm
talking about. But I LOOK fine, so it must be in my head.
Like many others also, I'm diabetic and also fight a running battle with
anemia, so have to watch my diet like a hawk. Losing enough weight to fit
into the 'normal' categories on the charts helped diabetes, but did nothing
for the rest of it. Ah well -- I am thanking lucky stars, the universe, and
any lurking deity that my problems are controllable. Also thanking all the
members of this list for letting a little light into what feels like a cave
sometimes. You're doing great work -- thanks!
Kathy
PS -- Alice, you're my kind of lady! Thank you for all your good, good
words.

Morning All,
Michelle although we've never met on list or otherwise, I want to
wish you the best of luck with your new treatment.. Is it $8000+
for every treatment?? and how many are needed to get results??
All these new treatments and Meds are so new to me, and I wonder
if they do work, or at least have a long duration of a better
quality of life.
Can you and all members on the list keep us posted on this Remicade
Infusion treatment.. Is it for both P and PA??
Kathy you framed me????????? ROFL.. Believe me that was the biggest
"lift and chuckle" I've had in a few days. Thanks, laughter is the
best medicine.
Now you have encouraged me to tell more. :) OK all delete now, as
I will ramble on!!!!!!
My P is NOT inherited. My Grandparents on both side were alive
when I got P at 13 yrs. old and no one ever remembers anyone with
a rash or beau-beaus.. (being half Can French they called my skin
beau-beaus.. )
Well guess it beats pupps. :)
Prior to getting P. I got a permanent on my hair.. In those days Big
electric curlers came down from the ceiling I guess?? Anyway, my
scalp got burnt, and didn't heal with OTC treatments. Lanacane etc.
When it did heal it healed into a white crust.. soon my whole back
had red spots.. MD's were baffled?? at 13 in the 1940's , I was asked
if I drank, have sex, (HA! didn't even know what the word meant)
Soon my scalp. back and eyebrows and sides of jaws was covered.. I
was sent to a Derm. and he did know I had P. But no one else
knew at that time what P. was..
I was given a series of radiation treatments on my face. It did
clear and has never reappeared on my face again. (think since
then this treatment is no longer?)
I was in high school. I had to stop gym classes, but this did not
help to hide all. Rumor was I had a disease. It was not an easy
few years.
I do not remember the name as in those days Prescriptions were not
named on the labels. I had an ointment that each spot had to be
rubbed individually and it burnt holes in clothing, sheets and etc.
It did clear except my scalp. And from then on it was down hill
all the way, with flare ups
and the PA setting in..
Moral of story..
No one ever thought of the burn on my scalp being the cause of my P.
, until years later when new a Derm. that I had for over 20 yrs.
after much debating , studying etc. He did track my condition down
to the burn I had got on my scalp, many years prior. .
So if your P. seems not to be inherited.. Think back of an injury,
burn etc. you may have gotten before the onset of your P. I
understand many soldiers after WW 11, got P. from wounds they
received .
I have one son (47) 2 grandchildren whom so far have no signs of
this
disease. However, I also raised a foster son, now 50 yrs old and
he
has always remained in the family group. and YES he did get P.
in a
very mild form.. And we all know this is not catching..
He does have knee problems; till I got on this list, I never
realized his knee problem may be PA??
My understanding (old time) was PA did not affect the knees. That
knee A. was a different type of A. However I read now on this
list that the knees are affected.
I do not have knee PA or A. of any kind. However for many years I
have had a soft bump (say handful size) above my left knee, It just
sits there. :) Just a few years back when my O S was looking at my
feet he saw it and asked if I had any knee problems.. cause this
lump/bump whatever, is a sign of knee A. He took x-rays of my
knees and they were perfect.
To this day, he cannot understand why I have this known knee A,
symptom and no A. in the knees???
Now I READ many of you saying . you are having fluid drained
from your knees. Is this what , this lump/bump is?? Does anyone
else have this????? It does not hurt, it's just there! My knees
are stiff at times, but chalk that up to old age. :)
So that's my beginning of my knowledge of P and later PA.:)
Again Thanks for listening,
Alice

Hi, I have been having heart palpitations for awhile
and read somewhere that they might cause heart palps.
I dont think they are the cause of my palps but
certainetly dont want to take the tylenol PM during
the times I am experiencing these. I am really bummed
cause I really slept great while using it.
Does anyone have any ideas?
Thanks
Judy

Thanks to all who responded to my post.
I rarely-- very rarely-- get down. In the past I had some success
with Methotrexate, but it was limited, and I've been even luckier
than most with non-conventional therapies but this year was a brutal
one and it has taken its toll on me. We had several deaths close
together and are in the midst of a terrible legal battle that has
gotten extremely ugly... you get the idea.
I locked myself away all afternoon and did what my Granny always
said: when nothing makes sense, go back to the beginning and do
something simple you know till your head clears. Spent an entire day
beading. I'm so lucky my hands are still nimble I'd LOSE it if they
weren't!
THANKS FOR LISTENING!!!!!
hugs,
Christine

Greetings to my dear friends,
I am writing to you today to tell you about my recent success with
Trazadone. Over the past 6 months I had reached the point where I wasn't
sleeping more then a couple of hours a night. I even went some nights with
out sleep. Made for rough days at work.
I was taking anything I could think of to try to sleep, Soma (Carisoprodol),
Ultram, and Excedrin PM, Kava, Melatonin & Valerian Root (not all at the
same time). After a time all were ineffective. I'm not sure the "Fog" I
was in was caused by the drugs I was taking or by the lack of sleep. But,
I was really a zombie, not very nice at times and had most of the symptoms
of depression.
Anyway, to make a long story short.... about a month and a half ago, I
called my Rheumatologist and told him I was at the end of my rope. He
prescribed Trazodone, which is an Antidepressant. For more info on this
drug... http://www.mentalhealth.com/drug/p30-d03.html It isn't addictive,
can be started and stopped at anytime and can be used as long as you want.
The good news is for the past 2 weeks, I have been sleeping! I don't stay a
sleep, but I can live with that. I can always go back to sleep, getting to
sleep it the problem.
Also, my "fog" is gone. I feel like a new person. It's amazing. I haven't
seen my boss for 3 weeks, except for a few minutes the other day. He looked
at me and told me I was looking quite Spry. So, if any of you are having a
problem sleeping, I strongly recommend trying this drug,
I'm off to take advantage of my new found sleep. No cruising the "net"
until 3 am tonight. :o)
Take Care,
Becky
Elko, NV
Age 41

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Hi everyone and welcome to the Psoriatic Arthritis mailing list. We
are a group of over 600 PA'ers from all over the world who share
information, thoughts and feelings about PA and how it affects us and
our lives.
Feel free to say hello, and tell a bit about yourself to the group by

My reumy says I can take tylenol with my
nsaids........just not aspirin. Always check with your
doctor....but I do it all the time it seems to help
them work better.

Hello all,
Well, today I checked my profie on merck-medco to see what they would
pay for remicade and I was amazed how much they would cover!
Rheumy decided I've put up with enough. Going to cut back my mtx to 6
pills instead of increasing via injection and scheduling infusions.
I should get a phone call tomorrow and he hopes they can get me on
schedule to start infusions by next week. They will be done at our
local Oncology Infusion center. He currently has 10 patients going
there and feels they are good at what they do.
I'm hopeful for some relief.
I truly appreciate what info I have learned from this group. Another
blessing in my life to have a place to share my misery as well as good
things.
Nanc

Do you all think taking Tylenol PM every once on
awhile is ok? I wouldnt take it ever on the same day I
take any NSAIDS. The only med I am on now is MTX. It
seems to really help on those hard nights. I go
through stages, maybe one week not taking any at all,
then another week maybe 3 o 4 times a week.
Judy

While we're on the subject... anyone using Xanax to reduce their
stress level at night to fall asleep could be doing themselves more
harm than good. Xanax will help you fall asleep, but it sometimes
prevents you from reaching the "REM" stage of sleep. The REM (rapid
eye movement) sleep stage is the only point at which your body can
truly renew itself.
It took many a morning of sleeping through the night but waking up
feeling like I hadn't slept at all before I start asking questions. I
switched over to a nice safe non-addictive sleep inducer, Ambien. Jim

Welcome to the Psoriatic Arthritis mailing list. You have really
helped our circle of support expand this week. We are a group of
over 600 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
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Feel free to say hello, and tell a bit about yourself to the group by

Morning all.
Thanks for the NSaids article & replies; very interesting. For the life
of me I could not make out what that stood for. :)
I do feel , I babble on here in my messages.
However, experience is a knowledge that probably should be shared.
So I'll try and encourage and not discourage,
you all.
My ten toes have been affected in one way or other by PA. 7 of my
10 fingers and 5 knuckles, and my lower spine and neck area, finger
nails, toe nails, and probably my jaw area?? . (so I was told, many
moons ago. ) (another long story)
. I have never had knee, wrist or other areas that has
any arthritis of any kind. I do have Pagets that affects the
large bones, hips etc. (not related to PA.)
My sudrate test always showed rhemy , and not PA.
I was under the impression that there were not any test that
showed PA.
(Question) Is there now a test that proves one has PA??
My Drs. always said I knew more about P. and PA,
than they did. :) Probably why I stopped taking all their
medication which was trail and error.
I was in the hospital yea years ago. Covered with tar ointment and
sun lamp treatments.(talk about depression) My feet were pretty
well gone at that time as I did have space shoes, (which were a waste
of money) and my hands were disfigured. Well, one of the nurses
decided I was not sick. She said "it was just a skin condition. "
Needless to say the way I was feeling, I sure felt sick. :)
The results were my Dr. decided to give the hospital staff a
little lesson on my condition. And asked me to if I would do a
program a few afternoons while I was in there, with his help of
course, to the enlighten the hospital staff on this condition whom
none knew anything about. .
Needless to say, I was never told again, during that stay, that I
had only a skin condition. :)
Again the P is showy.. and people see only the P. they do not
see the pain & the damage being done to the bones. And the state
of mind one is in when 80% of the body is covered with P and
the sudrate count is 90%
A question was asked about PA without P.
I have never heard of anyone having PA without having
P. In fact before I found this group a few days ago. I never
heard of anyone who had P and PA.
I knew of people who had P with R. but not PA,
It is supposedly one and the same disease but NOT all people with
P. get PA.
(question) Am I wrong here??? as again my knowledge on this condition
is from the old school. :)
The way I understood it, some people have P. for 7-10 years then PA
sets in?? One and the same condition. When skin flares up, bones do
too. The PA caused by the P.
Thanks again for listening, and Please all have courage and fight
it. May I add here that the best thing for any A. is to push it,
to a point.. Then the bones do need a rest. A rest for a few days
will help.
And you will pay for all you do, but the doing is worth it.
I would go dancing and have a few drinks, and boy did I pay the
next day.. But looking back, it was all worth it.. Live as much as
you can. Don't let it get you down. Take a day be depressed . :)
Then shake yourself into
living with the condition. Depression will only make it worst.
All have a nice pain free day, spring will soon be here. :)
Alice

welcome to all our members! you will definitely find a lot of support here.

whatever you have, someone can usually give you advice and support.

betty, do you mind me asking where in ga you are from? i am in ohio now,

but i grew up in roswell.

has anyone tried a new prescr. med for cold sores? i don't remember the

name. my sister in law, who is very high strung anyway, but is in the

process of buying land, building, and selling their house, has had sores

that won't go away. her dr. put her on this med, and it clears them up.

also, don't forget good ole l-lysine.

for those who wished me luck on neoral, 6 weeks and for the first time in

5 years, my pso. is almost gone! i even shaved my legs last night w/out

taking a layer of skin off! i just can't believe how great my skin looks.

well, have a good weekend everyone!

susan in ohio

Thanks very much for your reply and concern. Your suggestions are greatly
appreciated, but:
1) I have already had 4 months off and should return to touring early May,
therefore should have started MTX back in November to see results before I
go back to work!
2) A letter in English from a doctor would cut no ice in France, Spain,
Italy, Germany, etc. Although I'm fluent in French, German and Italian,
they still would not understand the importance of the liver function tests
and besides, I get about half an hour away from my group during the day, so
impracticle for hospital visits. It would be a case of "Sorry - I can't
show you the Eiffel Tower as I'm off for some blood tests!" :)
So I have thought things through in great detail about the job vs MTX. I
still love my job and would have a hard time giving it up to look for
something which would fit in with my blood tests, but it's looking that way.
Friends and family are encouraging me to go for that option.
Thanks for listening and maybe we'll have another chat soon.
Take care and hope your PA isn't too bad today. :)
Regards
Sharon

I'm sorry to have to ask this again. But I am having trouble with my
computer knocking me off line when e-mail comes in while I'm on line with my
telecourse. I need to unsubscribe until I can get a handle on this problem.
Can you send me the info on un-subscribing. I am going to try and set up
another e-mail account outside of AOL and hopefully this will solve the
problem. Thank you.
Shelly
For more information: mailto:CTNATIVE@...

Did anyone notice that PsoriaticArthritis is highlighted in

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share information, thoughts and feelings about PA and how it affects
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Feel free to say hello, and tell a bit about yourself to the group by

Hi all.
I haven't posted anything lately but I have have been keeping up to date
with the current topics. i haven't posted because I've had exams at Uni
which didn't go very well. I've been going through a bad flare-up since
mid-November, its only just starting to ease up.
To make matters a worse, my Father has just been diagnosed with prostate
cancer, a week after his 50th Birthday.It looks like we will have a though
year with 6 months of treatment.
But I am trying to stay positive. Even though my exams weren't very good,
I'm going to try to get the best degree I can. I've already starting seeking
extra support at Uni. They've been really good.
It just gets so tough. Some days I just can't find the energy.

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Welcome to the Psoriatic Arthritis mailing list. We are a group of
over 500 PA'ers from all over the world who share information,
thoughts and feelings about PA and how it affects us and our lives.
If you like, you may introduce yourself to the group by writing to:

Does anyone have any experience with Trazodone (Brand name: Desyrel) ? I
talked to my Doc today about my lack of sleep and he prescribed it for me.
Thanks Becky

hi all,
years ago, my dad had a bout with some bacteria
that left him with what today would probably be
diagnosed with ibs. anyway, he never knew when
it would hit or where he'd be. he even carried tp
in his truck, and he didn't hestiate to pull off the
highway if he had to. it was awful, and other wise
he was healthy as an ox. i didn't get his genes!
to make a long story short, drs couldn't help, but some
one told him to eat plain yogurt when his stomach
was upset. it would help, and after being sick for
2 years, it finally cleared. anytime he feels it coming
on, he gets some yogurt and it goes away.
thought i'd pass this on, maybe it will help one of you.
susan in ohio

I just wanted to share that I use a topical cream called Elocan for my
psoriasis. It works wonders for me.
Take care,
Sarah D in MN

If anyone has access to any articles or knows of any information tying PA to accidents/traumas, I would so appreciate knowing how to locate the information. I need to get some information to my attorney. This is complicated because she is in Chicago and I am in Washington state and we have never met. My case will be settling soon and I want her to have a clearer understanding about the PA and what I have been going through.

If you want to Email me privately about any of this, please do so! I just need information on trauma related only. Thank you all for the wonderful daily sharing.

Linda

Poulsbo, WA.

welcome donna to the group,
you will find that whatever you encounter, someone
else already has, and sometimes worse. i still
meet doctors who look at me funny when i tell them
i have pa. i have started using a shampoo called
dermarest. it is actually a whole line of soap, lotion and
shampoo, but i have only used the shampoo. i have
been waiting for months for the product to come to
my little corner of ohio. it doesn't use coal tar. it
says it helps itching, it has, and controls the thick
crusting. i haven't used it long enough,( a week), to
tell that. it's no more expensive than the other types
of "special" shampoos.
good luck with your treatment, and always feel free
to vent. never give up, if you aren't comfortable with what
a dr tells you, question him. it's your body and you
will be the one to deal with the results of what he tells you.
take care and have a good week
susan in ohio

Hi Tony.................although my life cannot compare
to what you have been through with
cancer..................my pa did start over night.
Three years ago, I went to bed one night a normal,
healthy 32 year old to wake up to the worst pain in my
lower back. I have not been the same
since............constant pain in my back. It took a
long time to get this diagnosis, which believe it or
not is still iffy..........but so far this is what we
have went with. So yes..........it is possible to
happen overnight and out of the blue.
Welcome....................Jayne

hi everyone
I am not going to be online much for a while. I have a reaction to the pain
meds (finally some idea maybe of this being true) going off methadone for the
pain and on heavy doses of lasix,
and potassium,and benadryl for the weekend. No more allegra or methadone. I
am going on oxycontin this Sunday or Monday after this swelling is out of my
system and all the other meds for a while. We think my lupus is going to rear
its ugly head too......which isn't a suprise but a pain 8-) and I also may
have a heart murmur if the problem isnt fluid in my chest too......HMMMM will
have to see
Anyhow I dont' feel up to being online for a while. I have to keep the legs
elavated and be prepared to run for the border....LOLOL
I guess one good thing is I haven't lost my laugh.....
Love to all
Tina

If the feet don't fit you can ladle the wax over the feet/ankle
until you build up enough thickness of wax. There is NO way my foot
would fit into a crockpot of wax:) Naturally you hold the foot over
the pan/pot and try to have the excess drip back in. PatB

I finally broke down and bought a paraffin wax spa, after having one
recommended by Dr. and therapist and friends. Used first time this morning
and it felt great! Is there any way to prolong the effects? Seemed to make
great difference for a short period of time, then no effect at all. Is my
impatience showing? Perhaps I need to use more than just once for the
"miracle cure" to take place? As good as it felt while wax was on and for a
bit after, I am thinking of getting one for work and spending as much time as
possible in a wax state. Of course, I have only tried on one hand - will try
other hand and feet tonight.

hi, we had a softener put in a year ago because our
water is so hard. it hasn't made a difference in
my psor. it is great on the soap and those things.
and i was actually going to ask my derm. if it
could be aggravating the p because i itch so much
good luck

Thanks everyone for your well wishes on my pregnancy. This is my second
child. I have a four year old son as well.
Thanks again,
Patty

It's time I write! I've been reading the emails, which help me
understand what the heck is going on with my PA. It's so much better
to just tap into the net and read e