Thanks for the clarification

2007-01-31 20:56:21

Meghan
Thanks for the clarification but unfortunately I am still confused.
If the spondylitic changes to my spine, mainly cervical, are from the
PA, would you know why MTX etc is not an effective treatment for it
specifically.
I apologise for my ignorance, my trips to the city are usually rushed
and my time with the doctors short.
Many thanks
[Meghan's Moderator Note: Hello, I would like to know more about what you mean
regarding MTX not being effective. Have you actually been on it yet? Do you mean
you tried it and saw no response? Did you try it and have blood work come up
with liver problems? Did your doctor just tell you "this won't work for you"?
There are quite a number of things that could be in play here. To form any idea,
I'd like some more information on what's going on with your case. It sounds like
you are definitely needing some help with all the information that comes with
this disease! :) While I am not a doctor, I can at least help you form some
better understanding and find sites that might help you. In addition, I can try
to help you form some more pointed questions for your doctor. If you'd like to
mail me directly, I'd be happy to work with you through that as well-
meghan@...! I really hope you are on some medications that might be
working for you. Best wishes! ]

Vision Problems

2007-01-31 10:15:09

Pat and Tracy,
Yes, I meant an opthamologist. I wouldn't think much of it but it has been
going on for such a long time now. It is happening indoors too. I have
been having problems focusing my eyes when working on the computer for some
time but i just figured my eyes were getting tired. I wear disposable
contact lenses. Lately they have been popping out alot. Annoying but not
painful. I can't stand to wear glasses so that isn't an option. I use
rewetting drops when my lenses do get dry. I have changed lenses since the
spots incidents so I know the lenses aren't dirty. I will be making an
apointment soon. I am so jealous of people who have good vision (my husband
has 20-20). The old expression blind as a bat holds true for me. I can't
see 2" from my face.
Oh, and i ALWAYS get the glaucoma tests (oh I hate that air shot in the eye)
and my eyes dialated (don't like that one either). I heard long term
prednisone use can cause glaucoma so better safe than sorry.
Yes, my rheumy isn't helpful, well maybe. She is just callous at times. I
do have to admit that everything I requested for my FMLA paper she listed.
So, while she has been a pain to deal w/ from day one at least she always
gives me what I want (probably just to shut me up).
thanks,
Les
Message: 21
Date: Thu, 15 Aug 2002 12:18:46 EDT
From: TADEL630@...
Subject: Re: Vision Problems
In a message dated 08/15/2002 11:51:14 AM Eastern Daylight Time,
leslieiansa@... writes:
Leslie - I would assume she meant opthamologist? An opthamologist is an
M.D.
while an optomatrist is not. I didn't experience black dots like you said,
but MTX can cause vision changes. Speaking of changes...maybe you are ready
for one with your rheumy?? Doesn't sound like she's real helpful.
Good luck,
Tracy

Update

2007-01-31 09:47:57

Hello all. It's been a while since my last post, so I felt like
venting. My situation - 28 yrs old, male, P started at about 19
years old and PA about 23. I was able to handle it with just
Ibuprofen (other NSAIDS)until last summer when I went on Vioxx and
Sulfasalazine. Choose Sulfasalazine over MTX because my wife and I
decided to have kids after 4 years of marriage. Once my wife becomes
pregnant, I want to start on MTX because Sulfasalazine does not work
at all and never has. I use to be very active - played college
hockey, played golf, and baseball all the time. Starting last
summer, I had to give up golf because my wrists were so bad. Hurts
to shake hands - isn't that embarassing for all of us??? I have
almost no physical activity because of this disease - hurts to turn a
door knob. Anyway, I'm done venting and looking ahead to MTX and
probably biologics (Enbrel???? or D2E7????). Thanks for the support!

vision update

2007-01-31 00:04:50

They are floaters in my eyes. Perfectly harmless yet annoying. Nothing they
can do about them. The optomotrist (can't remember spelling) said they would
come and go. Oh well. At least that's good news!
My boss has become even more of a jerk. Didn't think that was humanly possible.
I won't let him upset me though. I am just going to start looking for another
job cause I am sick of him treating me so poorly. I just avoid him when
possible. He'll be out of town for a couple days so hopefully things will calm
down.
take care,
Leslie

Venting too... need input

2007-01-30 21:11:28

I too am seeing my hands get progressively worse over a short period
of time. What seemed to work so well, Methotrexate and Arthrotec,
the doc has started weaning me off <MTX
because of the liver function test. She took me off of Arthrotec,
the only anti inflamatory that has thus far worked for me, and
started decreasing my MTX. Put me on celebrex with no results, now
Bextra, with little results. Also, Arava, to compliment or maybe
even replace the MTX, which I dont think has helped me at all. I
have an appointment with her tomorrow, I really want to be able to
discuss this with her.
Can someone tell me where I can find info on what my liver function
numbers mean to the over all picture. Seems like mine were just
barely over. What would it mean to continue the MTX with the numbers
over the limit.
I want to be able to discuss this with her. I dont want to stop
taking what is/has been working for me. But I also dont want to mess
up my liver.
Also, one final question. Does the consumption of water help improve
the function of the liver when taking alot of medicine? The rheumy
has told me I need to drink 12/8 ounce cups of water. And need more
because of the medicine I take. And honestly, I havent come close
to that. Would improving upon that help improve liver function
tests, that might enable me to continue taking the meds that help me
the most???
Thanks
Robbi

Triglycerides &amp; stress

2007-01-30 15:39:22

Group,
I am in need of input. My trip to rhuemy in June he said my blood sugar was
slightly high and I was retested in August. His office phoned and said my blood
sugar and HDL - LDL levels were fine but my triglycerides were 1214. That is
like 3X the normal level and I was given a script for tricor. No diet was
mentioned by the nurse. I have looked on the net and everything says low fat-
no simple sugar-exercise-lose weight. Questions-would a fasting test be more
accurate? Should I be retested since the #s were so high? Any knowledge of
tricor? I have read that high trig.is a sign of diabetes and liver malfunction.
I have tested OK on those. Also read that it is hereditary--Thanx, Dad!
The questions about stress triggering PA--I think yes. I was under a ton of it
in the two years before I was dx. But everything was over when it hit me.
Also, about remission, my dr. says that with the aggressive treatment I have had
since '99 with no signs of remission that it will probably not happen for me. I
do not have the severe flares as in the beginning but still don't feel like
pre-PA. Any first person info would be great.
Thanks to all. It is good to have yall to confer with on this wierd disease.
Eva in AR

Thanks

2007-01-30 12:32:48

Sorry for taking so long. We are working with the 57th UN General
Assembly in NY. We have a lot of work.
Tom: Thank you for your respond. The problem is that I have 18 years
of active service in the military and I work for the Secret Service.
The Secret Service does not care if I have PA. As long I can do my
job. They are a bunch of good people who take care of you. However
they do not pay me or have any control over my healthcare. For pay
purposes, healthcare and disability the Army deal with that. I only
have 2 more years to retire with 50%. If the give me 40% disability
that will be lower than my 45 0r 50% regular retirement. But I need to
see the VA people because I do not understand how the disability or
medical discharge works.
The second problem is that with the Secret Service I get an additional
$1,600 dollars a month as Diet and Gas money. If I get a medical
discharge I will not get that money anymore. The 40% disability is
from your basic pay only. Does not include diet, travel pay,
miscellaneous or special duties like the secret service. I will be
very hard for us to live with that amount and 4 kids at home. If the
Army doctor starts me with the drugs he has to enter that information
in the database and automatically I will be ban from traveling because
the blood test. Bill, a secret service supervisor is trying to get me
to work in Washington full time so the military can treat me at the
Walter Reed Medical Center or the Bethesda Naval Hospital.
Michelle: Well I have 20 year of Army Service. Only 17 and a half
count toward my retirement. The Army is paying 100% of my Masters in
Business (MBA). I got another 9 months to finish. If I get discharge
they will stop paying for the MBA. I do not know if VA pays for MBAs'.
If I get a medical discharge I have no idea how much I will get from
the VA people. If is 40% that is lower than my regular retirement
which is 50%. Because I work in a special assignment with the Secret
Service I get an additional $1600 a month. The amount is not taken in
consideration for retirement or medical discharge. I will get 40% of
my basic pay which is only half of my total pay if I include diet,
mileage, housing, foreign language pay, and special duty. They only
pay for does if you are on active duty and is not included in medical
or retirement.
I develop P. 3 or 4 years ago and PA two years. It wasn't until May
and June of this year that the doctor diagnose me with P and PA. It
took them that long.
Sam
Robyn: Thank you for you advice. I will try to stay away from those
products that you mention. I thank you for you prayers.

toe numbness

2007-01-30 08:25:38

Hi Everyone,
I have just spent some time reading the archives, but still have some
questions that I hope someone can help me with. In the last month or
so my big toes have gone numb on the tips. Some or all of my toes
would go numb sometimes, but the feeling would always come back, this
time it didn't in the big ones. Now, I don't seem to be having an
active flare in my feet, no swollen/sausage digits or that much pain,
just the numbness. I don't think that I have diabiets because I just
had a complete blood work up done a few months ago and all seemed to
be well, plus I had weight loss surgery 14 months ago and most people
who have diabiets and have had weight loss surgery can go off their
meds within a few months of the surgery. I am not sure if the
numbness if from PA or is something else going on. Ugh! Just what I
need, a new disease! LOL! I have an appt with a new primary care
doc on Wed and will talk to him about it, and an appt with a new
Rheumy on the 20th and will be sure to mention to her too, but I
thought I would see if anyone has any info here.
Thanks for your time,
Denise
Bloomington, MN
[Moderator's note: Denise, I don't have any information on it, but I too
experience a feeling of numbness in my toes at times. I haven't paid much
attention to when it's better or worse, but the next time it bothers me I think
I'll try pricking a toe with a needle and see if it really is numb, or if it
just "feels" that way. I have no noticeable inflammation in my toes, but do have
hammertoes in the left foot. Ron]

Weight

2007-01-29 20:11:26

In 2001 I lost 14 pounds on the point counting program. It worked but
it was a lot of work. It's like a part-time job keeping track of
everything going into your mouth. And I already had a full-time
traveling job, contingent call-in job and I was going to
school...last thing I needed was something else. When I was diagnosed
with PA, another full-time job, I stopped the point counting program.
I've tee-teered with 2 pounds until recently. At the doctor's the
other day I had gained the 2 plus 3. I had already made up my mind
that I would see what the doctor could recommend (another pill if
necessary). The only thing I got was a lecture (she called it a
discussion) on calories in vs. calories out...duh like I'm stupid or
something. Between prednisone and thyroid it isn't that easy. I go to
water fitness 2 times per week and walk almost every day 1.5 miles.
It doesn't seem like a lot to some but it's an improvement for me.
She can only tell me to do more or eat less...easier said than done.
I can only change things, I guess, if I'm up for the challenge.
Another full-time job to add to the two I truely get paid for and the
graduate school I'm starting tomorrow. Anyway, I'm back to square
one...me. Just thought I would add my weight story to the board.
Janine, OH

Welcome Cheryll

2007-01-29 13:46:19

Welcome Cheryl,
By the way , as far as Sjogrens Syndrome goes, it is probably the
inflammation you have experienced in your eyes that required steroid drops
that is really Sjogrens Syndrome. Severe dry eyes from lack of tears due to
the lacrimal gland in the tear duct not producing enough tears because it has
been infiltrated (attacked) by your own bodies lymphocytes by mistake..
Instead of constantly getting drops , it is probably much better to get
semi-permanent plugs put into the punctum (the tiny drain holes of the
eyes-there are 4) that way the tears you do make will not drain out they will
instead only evaporate out.You can wear wrap around glasses or sunglasses to
cutdown on the evaporation too.
I hope this helps some for those who have the Sjogrens and are at a loss as
what to do. One point I should make: there is currently a trend among eye
doctors to try to get you to put "temporary dissolving" plugs in to see if
they work out. This is a totally unnecessary and expensive step. Just get
the regular silicone plugs. If for some very very unlikely reason you do not
want them in, they can be taken out with a tweezer by you in ten seconds
flat! It costs around $100 a pair of two plugs and $500 to put two in the
NYC area. So you can see, putting in temporary ones would double that fee
nicely!
Michelle
group founder

What is affected? Joints, muscle or tendons or all.

2007-01-29 12:03:47

Hi. I am trying to get some good information on PS.It seems I live in the land
of the dummies. I cannot find a rhumy or a MD that has any idea what PS is. I am
not affected in the joints. It seems to be my muscles and oh boy am I living in
pain. Celebrex never completely killed the pain and the little it did do is no
longer working. I am being treated for joint swelling and pain but that is not
my problem yet. I was wondering how many of you have joint pain, how many muscle
or both. It seems that arthritis medications are not doing anything for me so I
am thinking I might have to go and see someone else. I wish it was joints. Then
I could get some relief.
Thanks to anyone taking the time to answer this. I see my doctor on Wed and want
all kinds of ammunition. I am applying to SSD and they dont seem to understand
what my problem is. I need to find a doctor that can help me. I am just about
chair/bed bound. Can barely walk, can barely do a thing. Am so sick of it all
and I have only had this problem for about 10 months so I symphathyse with
anyone who has been suffering for years.

What is affected?

2007-01-29 06:04:32

HI Sunnie,
Your situation sounds so familiar to me, I had really bad muscle pains in the
calf of my legs that felt like constant charlie horses for about a year that
made it almost impossible to walk. The Doctor told me that I had "the fifth's
disease" a childhood disease, i did have the rash and fever assocaiated with it
but i never imagined anything like that could cause the muscles to hurt so bad
and for so long. There was no medication that I tried that seemed to help , it
finally just eased up on it's own after a good while.It was also during this
time that i started having alot of joint pain and swelling & was diagnosed with
PA , that has now been about 5 years ago.The PA usally moves around , but I have
had alot of swelling arond the joint of the right thumb now for 5 years.
Talk to you later . Good luck at the doctors.
Janice

[OT] Insurance stopped paying/Unionization

2007-01-28 18:56:02

Cassie,
I know this is somewhat off-topic and I won't belabor the point any
further, but it does relate indirectly to the health care benefits
you receive for your PA. It is illegal for an employer to do the
things yours has in order to prevent unionization. If I were you, I
would contact the National Labor Relations board and ask that they
prosecute your employer as the criminals they are.
http://www.nlrb.gov/
-- Ron
From the COLLECTIVE BARGAINING FAQs pertaining to the National Labor
Relations Act, 29 U.S.C. Chapter 7:
http://homepages.uhwo.hawaii.edu/~clear/CB-FAQ.html#Q2
CAN EMPLOYERS OPPOSE UNION ACTIVITIES?
The National Labor Relations Act places legal restrictions on the
kinds of actions employers can take. Violations of this law are
called unfair labor practices. In general, an employer unfair labor
practice is any act which interferes with, restrains, or coerces
employees in the exercise of their rights to organize which are
guaranteed in Section 7 of the act. It is an unfair labor practice
for an employer to discriminate or retaliate in any way against a
worker for exercising his or her rights as a union member, or for
taking lawful collective action around workplace issues. This applies
to workers in both organized and unorganized workplaces, and covers
all aspects of employment, such as hiring, firing, job assignment,
promotions, benefits, and discipline.
Some examples of employer unfair labor practices are threatening
to close down a plant or subcontract work if a union is organized,
questioning employees about union activities in an effort to
intimidate them, harassing union activists, refusing to reinstate
employees to open jobs because they took part in a lawful strike, or
demoting a worker for testifying in support of a co-worker's
grievance or complaint to the National Labor Relations Board.
IF THERE IS NO LABOR ORGANIZATION, CAN ONE BE STARTED?
Yes, workers in any place of employment are free to join an
existing organization or start their own. Workers could join an
international union, an area association, or start an organization in
just one work site.
It is an unfair labor practice for an employer to control or
favor a particular labor organization. "Company unions" are
definitely against federal law. Labor organizations must be free,
independent, and worker controlled.
IS "TALKING UNION" PROTECTED?
The right to form a labor organization is protected by the
National Labor Relations Act. This means it is illegal for any
employer to ban discussion about unions or to retaliate against a
worker for trying to organize. Generally, a worker has the right to
talk about organizing, and to pass out union membership cards,
anywhere in the workplace as long as it does not disrupt production.
Handing out leaflets is legally protected as long as it is done on a
worker's own time and in non-work areas like the cafeteria, locker
rooms, or parking lot.
If a union election is to be held, employers may be required to
provide the union with the names and addresses of workers who may be
eligible to form the union. In addition, professional organizers may
have the right to enter the workplace if it is open to other members
of the public.
It is illegal for an employer to threaten or intimidate employees
or try to bribe them with pay raises or other special benefits in
order to discourage unionization. It is often difficult to prove all
but the most flagrant abuses, and many management consultants are
using subtle psychological techniques to defeat the purposes of the
act.

Tendonitis &amp; PA

2007-01-28 14:33:10

I've had P for 15 or so years, diagnosed with PA 5 years ago...taking
MTX, Vioxx and whatever pain med I can get my hands on when things
flare up. I've had some cortisone shots in my elbow for the
tendonitis and have had a couple in my back (sacroiliac). I've had
episodes when the sacroiliac flares up, its like getting hit in the
lower back by a hot baseball bat. The tendonitis in my thumbs is to
where if I were to pick up pennies, by the 4th penny, I get a cramp
in the fatty part of the hand under the thumb--lots of pain and
frequent swelling. I made the mistake two weeks ago of cleaning out
the garage and just from holding the trigger of the sprayer to hose
it down, my elbow has flared up--bigtime. My job is alot of computer
work so giving it 'rest' is a bust during the day. When it flares up,
I'm lucky if I can lift a full glass of water with that
arm...something that weighs more like a gallon of milk..forget about
it. My DR has suggested surgery on the elbow several times (even had
an MRI) to go in and 'scrape out' the joint and any spurs in hopes to
eleviate the pain and flare ups of the elbow. Has anyone had this
surgery or know of someone thats had this kind of surgery and was it
helpful?? Its been two weeks since its flared up and its still so
inflammed just looking at the elbow or touching the skin around it is
painful. What if anything can I take in addition to what I'm already
taking that would help the tendonitis flare ups become less often?? I
try to watch what I do and where splits/braces/wraps if I'm going to
be doing something strenuous. ('cept for when I did the
garage...didn't wear the elbow wrap.) Sometimes I still don't
associate some of my pain with PA because of all the sports I used to
play but I guess in the end it doesn't much matter, from what I've
read in e-mails in this group, if its not one thing its twenty things
all playing off each other. I've had other surgeries, both shoulders
(sports related), carpel tunnel and an inevitable knee surgery (and
yes it pops alot--sometimes with pain, mostly without. Stairs are a
killer pain wise always) but daaaag, its my right elbow and if a
surgery makes it worse, I'm screwed even worse than I am now! Any
suggestions?
(Have I mentioned that this kind of pain makes me a bit irritable??
LOL)
Thanks
Cheryl

Vented in fury

2007-01-28 09:19:05

I vented to the insurance co. and the HR representative of my
employer. Lost my temper to put it mildly. I will probably end up
losing my job over this and don't care at this point. I cussed them
both and asked them if they ever had trouble even putting on their
underwear. Their answer was no. I told them they didn't know what
the H--- I had been through and that I was facing disability due to
them. I want my needed meds and I pay highly for the insurance on a
family plan. I'm still so mad I'm shaking and crying. Cassie

Unions/Insurance

2007-01-28 05:14:19

At the job I am at currently I have lived both sides of the union situation. We
just went union in January. First of all, the company cannot fire someone for
trying to form a union. But, we did ours all in secret. Only the people who
were perceived to be pro-union were told and had a meeting once they were sure
they were the majority. They all signed union cards and according to Teamsters,
after that card is signed, the company cannot fire you for it!!! Ended up
voting and the majority won and we were then Teamsters.
Before that, the insurance we had was the company's private insurance plan. It
was a good plan. We paid nothing for it and Remicade was covered under
prescription, so I would have only had to pay a $10 co-pay. Now we have
Teamster insurance through Central States and Remicade is considered major
medical. Therefore, I have to pay 20% after my $100 deductible. Unfortunately
for me, that is about $600 every 2 months. That is alot of money, but I refuse
to go back to the way I was before Remicade.
My point in all this is that union insurance is not necessarily always better
than company insurance.

US Arthritis Foundation Action Alert

2007-01-27 21:54:38

Hi all,
This is an action alert regarding funding for pediatric rheumatology.
There is a severe shortage of these specialists in the US.
If you are interested in writing in and wish to contact your rep. the
Arthritis Foundation has a site that lets you look this information
up.
http://www.arthritis.org/advocacy/default.asp
(general arthritis advocacy
http://capwiz.com/arthritis/home/ (look up info)
Thank you!
-Meghan
and Human Services and Education Appropriations Subcommittee to build
support for the $1 million funding request for a study to address the
shortage of pediatric rheumatologists.
the Health Resources and Services Administration (HRSA) to partner
with the Foundation on a study to address the shortage of pediatric
rheumatologists. This is a tremendous accomplishment, but it
represents only the first step in the legislative process. NOW, we
must stress to the House of Representatives to support this funding
request.
version of the Appropriations Bill, and it is vitally important that
Members of the House Labor, Health and Human Services and Education
Appropriations Subcommittee be aware of the need for this study and
how vital access to a pediatric rheumatologist is for a child living
with arthritis.
Committee, please act now and personalize and send a prepared e-mail
to him or her TODAY. To personalize and send a prepared e-mail
letter to your Representative, simply go to
http://www.arthritis.org/advocacy/default.asp and follow instructions
on how to contact Congress.
of the Arthritis Foundation
call the Office of Public Policy and Advocacy at 202-537-2254. If
you have any questions email advocacy@...
<mailto:advocacy@...

Visit with orthopedic surgeon

2007-01-27 17:33:23

Hi all,
I went to see my orthopedic surgeon (upper extremity specialist) today. We
are finally able to move our focus to my elbow, as the my finger
(tenosynovitis) has responded well to the cortisone injection.
I will have to wait until the end of November to early December as my
surgeon's schedule is packed.
Today, he had a young woman seeing patients with him. She is a
rheumatologist (a very new one)!
My doctor explained to her that I was a very good case for her to see. (He
doesn't get a lot of PA patients.) He explained to her how progressive PA
is, and made her aware of the joint damage that it causes from a surgeons
standpoint. Of course, I was thrilled to tell her about my PA chat group and
how important it is to us that our rheumys understand PA and how truly
destructive it is! I didn't mind having to take the time to give her a
"medical history" just for practice, if it means we gain one more rheumy
whose seen what we REALLY go through! (Let's train them while they're still
young!) ;-)
Tammy in Phila

women who have had kids after pa dxed

2007-01-27 06:17:12

Hi all I was wondering if you would get symptoms of pregnancy if you
have pa or not or if the symptoms are the same. I don't think I am
pregnant as I have had a negative urine test 14 days after missing a
period. I used to miss one or two periods a year but since becoming
sexually active (last august) I have not missed any til now. The only
form of birth control we use is the withdrawl method as I have a
horrid fear of gyn exams and the like and have never had one (please
don't preach to me about this point...would need valium or put under
to go through it is a phobia and if I were pregnant I would have to
eventually get over this and that may very well be what it would
take). the lady that gave me the urine test said that a lot of women
don't have enough HCG in their urine to test til 8 weeks along. I
was wondering if pa has affected anyone's hormone level in this way
to cause a lowered amount in urine? If anyone has anything else to
add to this please do. As I say I doubt I am pregnant especially
since I have been stressed but not as much as I used to get to miss a
period. thanks for all info. take care.
love,
ali

Tips for getting a proper diagnosis of an autoimmune disease

2007-01-27 06:12:29

This will probably be of use and interest to many of you:
http://www.aarda.org/article18.html

Withdrawals From Steroids Having a Hard Time

2007-01-26 19:33:07

Hi, just to let you know that a week ago I had a asthma attack and ended up
in the hospital on steroids every 6 hours by iv. Well, now they send me
home, and I feel terrible, i closed myself in my bedroom I feel pychotic,
nevous ready to jump out of skin, but the Drs. keep saying this is a normal
but I have it bad side effect. I'm still not quite sure what happened but not
gonna worry about it until I can come back to earth. It'll take another
week to stop taking the presidone, it also gave me thrush :(
Good news all pssoriasis is GONE my skin has totally cleared up guess thats
the benefit of this and my lungs have never been clearer
Randi

Welcome to all the New People!!

2007-01-26 15:31:52

Hello Sherri and to all the new members,
Welcome to the group! You have now joined a warm, supportive group
environment here who understands the tricky course of Psoriatic
Arthritis. Please share your stories, your disease history, ask
questions, vent about it, support others.
Once you finally get a diagnosis, you are hopefully on the way to
treatment. There is good news. There are a ton of possible
medications out there and some combination of these will most likely
help you get most of your life back.
But, you do need to pay attention here. It could be a long struggle
to get back to where you were before the disease. You may never be
your "old self" again. I wish I could say that the arthritis goes
into remission by itself or that it's really mild, you'll hardly
notice it. Unfortunately, it's not that simple or that easy. Almost
everyone here on the boards has gone thru a variety of changes with
the disease. I've been diagnosed for 6 years now. I'm on methotrexate
and Remicade, plus several others. It does suck to have to take so
much medication to simply function, but there it is. I am now 30
years old and have been on disability for the last year and a half.
I'm doing better now, but I'm still struggling some what.
I am not trying to scare any one who has been newly diagnosed, but I
am trying to convey the importance that you start to grapple with
some possible major life changes. Doctors will not tell you this.
Doctors, especially regarding PA, will minimize the effect it can
have on you. Some doctors will make it sound like you're lucky you
only have PA.
Now, back to the good side, you are not alone in any of this. This
group is awesome, full of terrific people who have gone through and
are going through the same things you are. In addition, the
medications are not as bad as you think. And most of them can make a
HUGE difference in how you're feeling. In fact, now is great time for
medications because of the new biologics coming out. There a ton of
people on a wide variety of medications on this board. There is most
likely someone who is taking a medication the doctor may prescribe
for you.
Best wishes!
-Meghan (one of the moderators)
--- In PsoriaticArthritis@y..., Sherrie Carlton <softsweetfemme@y...
I'm up against. My dermatologist diagnosed me and I have an
appointment next week with my rheumatologist.
everything imagineable. I've even had knee surgery as I was
misdiagnosed. At first I thought I just had terrible doctor's but am
pretty certain most of you have gone through the same as it seems
like a tricky disease to diagnose.
be in pain for the rest of my life? Will it go into remission with
medication? What types of medications are the best? Side Effects?
Any related disorders other than thyroid (I have Hashimoto's
Thyroiditis)?

venting softly

2007-01-26 13:51:56

Hi everyone, I accidentally disconnected myself from receiving E-
mails from the group and managed to "goof" up the phone line too!!!!
So I have been gone awhile....thumbs don't work well. Anyway, I have
been noticing some strange symptoms. Lots of sweating at night,
restlessness, and trouble breathing. The breathing got worse, to the
point that I did not feel "tall" enough to get in any air and having
a lot of middle of the chest pain (like a brick) thru my chest. It
got so bad that I couldn't walk across the room without gasping (I do
have asthma, but this is very different). I gained 10# in one week,
and felt lots of pressure in my abdomin. I went to see my GP ( who
is very upset and my Rheumy for putting me on prednisone) he said
that I had edema due to the prednisone and gave me Lasix &
potassium. I still feel awful, tired; hard to breathe, chest pain, I
called my GP back and he said to just keep taking the pills and
continue to cut down on the prednisone.(started at 10 and am down to
5mg) . Has anyone else had this problem??? It is very
uncomfortable.
Gentle hugs & prayers,
Carol

[PsoriaticArthritis] stomach trouble

2007-01-26 03:47:23

If you are on Metho be sure to take your Folic Acid. I was trying to get out
of taking so many pills and backed off of FA but noticed some hair loss and
found out (from MD) that not taking FA could be a cause.

Two DMARD's Before Biologics

2007-01-26 00:54:35

Hi All,
I've seen the comment several times that biologics won't be covered by insurance
unless two DMARD's have failed and it strikes me as a cost saving measure rather
than a "best interest of the patient" measure. Has anyone tried a second DMARD
(especially after MTX) and improved so much that moving on to biologics didn't
make sense anymore, or does any study show that this is a good way to treat PA?
Or is this a completely non-medical financial tactic to keep us on the cheaper
meds longer?
I don't know what to do with this, but assuming my gut feel is right, I think we
would do better with our insurers if we can expose the 2nd DMARD tactic to be
medically worthless.
Thanks.
-Robert
[Meghan's Moderator Note: Usually docs will try you on Plaquenil or Gold or
Sulfasalize as the first DMARD. MTX is the second DMARD. I do think the
biologics are a better first line, but MTX is well-understood, fairly effective
and is reasonably tolerated over MANY years (generally speaking). The biologics
are new and Enbrel is turning out to have some nasty side-effects like MS
symptoms and Lupus symptoms. Both symptoms go away when Enbrel is stopped. I
wish it was more clear cut. Remicade can trigger TB, so it's not perfect either.
A new biologic d2e7 is being worked on right now.]

[PsoriaticArthritis] Needing to talk...

2007-01-25 18:30:15

Just having this site to understand and realize that "our" thoughts/feelings
can be validated by others' who experience the same is a relief. It has also
been "suggested" to me that I am a hypochondriac.....but, it just seems that
when you are not "older" or are not "disabled" in a way that can be seen by
others' that you must be okay. Well....if anyone takes the time to read
through the posts I believe there are enough (all) to convince anyone that
"we" suffer as a group of people who have all been touched by the same
problem with basically the same in regard to symptoms, feelings, medications,
life experiences, etc....I just gave my Rheum this website address on my last
visit. And...because of this website I am currently researching my location
to find a Rhum. who specializes in P/PA. It is so important to find someone
who really understands the limitations and degree of severity this disease
leaves us with. Linda

Tramadol (or Ultram in US)

2007-01-25 10:34:42

Hi
Have just seen my doctor to complain about the pain (again) and he
has given me Tramadol (Ultram) to take alongside Celebrex. Does
anybody else take this and, if so, has it worked for them and have
they suffered any side effects?
Thanks very much
Jakie

[OT] Tool Time (was PA/Diabetes)

2007-01-25 05:11:57

Heather,
Stranger things have happened! Here's an excerpt from Ed Dewke's
book "Flake - Confessions of a Psoriatic" about how he dealt with his
deformed psoriasis fingernails after using an emery board on them:
"Later, I got real creative. I rigged a way to attach sandpaper
to an electric screwdriver. Talk about your high tech manicure! My
fingertips were literally smoking."
"Because I'm nuts or something, that year I concluded the family
holiday video to my parents with a macro-closeup of my nail psoriasis
and a narrative description of the way I was "sanding off the rough
spots." My dad took this to heart and bought me a high-speed handheld
router for Christmas, complete with a set of sanding tips."
"I've since cooled to this method of cosmetic dermatology for
nail psoriasis - especially after the pinky finger on my left hand
caught fire."
--- In PsoriaticArthritis@y..., Heather Watson <heather.watson@s...

The pregnancy effect

2007-01-25 03:18:20

Several posters have mentioned that their P or PA went away during
pregnancy. A recent study seems to show that the hormone produced during
pregnancy to stop rejection of the placenta is a powerful
anti-inflammatory.
The study was on MS patients but the article mentions the possibility of
applying the therapy to other diseases like RA.
http://www.medicinenet.com/21448

Tanning Booths

2007-01-24 10:07:57

Hi Everyone,
I know this may have been addressed before, but I could not find any
old posts....I have heard about light therapy being used for P, does
that mean a tanning bed would help?? Or is it a certain kind of
light?
Thanks,
Meredith

Without PA meds

2007-01-24 05:06:23

This is the first time I have been unable to get my meds and I am
supposed to be receiving my Enbrel tomorrow. I have been a couple
weeks without it. I'm experiencing alot of discomfort in general.
My knees are bothering me real bad and I have all over stiffness. It
feels like it did before I got unable to do anything for myself in
1999. My MTX is only 5 pills per week. Next rheumy appt. is in
Nov. I would like to know how long it took for you to see the
results of being without your supply of Enbrel and how long it took
to feel good again once you restarted the med. I'm feeling pretty
miserable at this point and don't feel up to searching the archives.
My body feels like someone beat me and left me to die a slow
agonizing death. This morning I can hardly move. I could not sleep
last night for leg pain. My energy is totally zapped. I feel
awful. Any suggestions? This started coming on after only one week
without Enbrel. Cassie

Update, relating to Leslie

2007-01-23 23:19:15

Well first off not much has changed save for the fact that I am more
stressed out, more depressed, and more anxious. My Remicade
treatments will be upped for the second time on the 25th, bextra was
already upped to 40mg. My boyfriend had to move back with his dad
until he can work out some legal stuff so I am now living alone
basically. (I live next door to my parents but sometimes you want
someone other than your parents to comfort you even though they mean
well) I have been feeling quite useless lately and that I am a huge
burden to everyone that cares about me. I think Leslie hit it on the
head when she said that we in essence marry this disease...it's the
gift that keeps on giving. Wonder if this is how the world would be
if divorce was not possible. Course there would be more murder but
then again who in this group wouldn't want to kill this disease? I
talked to a SSDI lawyer (one that was recommended to me) and she told
me that it wouldn't matter if I used her for reconsideration or did
it alone because she said I would not be approved due to my age. I
have to have it mailed out within the week so I waited around on this
lawyer for nothing. I keep wondering where the silver lining is.
Further I am on food stamps, have no income, no insurance, and at
this point feel like I have no life. I wrote before on pa and
pregnancy but I seriously doubt that I am pregnant. I have missed
the last two periods but have taken 7 different OTC urine pregnancy
tests and they are all negative. Some other online friends suggested
that I get a blood pregnancy test, get my estrogen levels tested,
glucose tolerance test, and have my thyroid tested. I think it is
probably just stress related but have written an email to the health
department to see if I can get these tests done for free. Waiting on
the response. I am turing into a hermit. I don't like to leave the
house, I feel like everyone is staring at me, pitying me, looking at
me as less than human. I used to be so outgoing. I feel myself
retreating into a shell. I question if the people that I think care
for me really do or are just giving me pity now. I can't keep my
house clean (I have never been able to clean well), I think of all I
have to do and feel overwhelmed. I am tired all the time. I get
cranky and irritable. I just wanted to vent to others that
understand what I am going through. I could vent further I am sure
but I am getting worn out just typing this. If anyone has any advice
please let me know. Oh a further thing, I have never been to a gyn
nor can I. Just the thought of it gives me a panic attack, I would
need valium (lots of it) or put under to go to a gyn. No I was not
raped or anything else at least not that I am aware of. My mom
doesn't know of anything that would have happened to me either. My
boyfriend thinks that something probably did happen to me as a kid
but I don't. I have asked the health department about counseling for
this too just in case someone were to write back about going to the
gyn. Hope eveyone is having a better time with it than I am.
thanks,
Ali

Thanks for responses

2007-01-23 22:46:55

I just wanted to say that I really appreciate your responces! After
my regular dr. told me there really nothing wrong with me when I
started to seek relief I started questioning myself, I guess still
am ,so it is a tremendous help to know I'm not crazy. If it wasn't
for this group I don't know when I would have got help, I did not
know to go to a rhuemy, and since no one else could figure out what
was going on, I had just about gave up. My husband pushed me to keep
trying and when I was doing research I found you guys. Thank you for
being here!!!
I am going to go talk to my boss today about me returning to work,
so wish me luck!!!!!!!!!!
-----Merribeth

UK members 1574 meghan_e

2007-01-23 15:46:43

Dear Meghan,
Thanks for this great inet-link in the UK.
I passed it through to the dutch PA (dutch AP) group.
Again great info ! Thanks a lot
Anne from The Netherlands

[OT] Early detection (was: Cervical Cancer)

2007-01-23 07:27:05

Orin and everyone,
Speaking of "guts" - another thing that in my personal opinion (I'm
not a doctor and have no medical training) is very important for both
men and women, especially if you're past 50 or so, is to have a
regular colon check up (colonoscopy), and for men a yearly prostrate
exam and PSA test for possible prostrate cancer. Also, report any
unusual skin eruptions that do not heal to your dermatologist
immediately - ESPECIALLY if they appear to be growing! This obviously
doesn't include psoriasis, but most of us can probably tell the
difference between what is normal psoriasis and what isn't.
A few years ago I had a raised red spot on my nose that started out
about the size of the head of a pin. I thought it was just an
infected blackhead or something, and I kept waiting for it to go away
of it's own accord, but instead it began getting bigger. I still
didn't think much of it even when it got to be about the size of the
tip of a pencil eraser because it didn't hurt and it didn't look (to
me) like anything serious, and I just tried cutting it off with a
razor blade. Very fortunately for me, my regularly scheduled
appointment with my dermatologist for my psoriasis, just
coincidentally happened to be scheduled about two weeks after the
growth had started on the side of my nose. It was fortunate because
my regular dermy visits only occur every three to six months. As soon
as the doctor walked into the examination room, all thoughts of
psoriasis were put aside and he zeroed right in on the growth on my
nose. He warned me that it had all the markings of skin cancer and
that something had to be done about it quickly before it spread
further. I agreed, and declined his offer to go to a plastic surgeon
who might do a "prettier" job of excising the growth, since I was
more interested in results than in looks (if I had been younger and
more vain, I might have been more concerned about scarring). He
immediately proceeded to dig a crater in the side of my nose (under
local anaesthetic of course) about 1/4 inch diameter and about 3/16
inch deep, and cauterized it with his laser (there's nothing like the
smell of burning human flesh in the morning - Yuk!). Every
dermatologist should have a laser in his office, because they are
indispensable for certain things. He sent the excised tissue to a lab
for analysis, and the results came back that it had been squamous
cancer. Had I ignored that small growth for another two weeks and it
had metastasized, I would probably not be here posting this message
today, or if I were it would be without any nose at all. That 1/4
inch diameter white circle of scar tissue on the left side of my nose
is a daily reminder of how lucky I was, and of how important it is
get anything unusual checked out by a doctor immediately. If this had
happened a hundred years ago, I would undoubtedly be dead today, so
PLEASE - DO take advantage of today's advanced medical knowledge and
treatments!
A friend of mine (my office mate at work) was diagnosed with colon
cancer because he saw his gastroenterologist at the first sign of
trouble (I think it was difficulty defecating, but I'm not sure of
his exact symptoms). The surgeon removed a small cancerous section of
his colon, and after a month or so of recovery and a special diet, he
was a good as new. Had he delayed seeing his doctor I'm quite sure he
would be dead today.
I think taking advantage of timely medical diagnosis and modern
treatments are the main reasons our life spans have increased, so
please do not hesitate to take advantage of the medical resources
available to us. We may have a debilitating disease (PA) for which
there is no cure, but we shouldn't ignore other medical problems that
could have even more serious consequences.
-- Ron

talked to boss

2007-01-23 04:54:04

I went to my boss to talk to him about my dx and how it might effect
my job, and where the company stood on these issues. He wasn't very
encouraging or very forth coming in his answears.I took my husband
with me partially as a witness and partially for support, so my boss
would not be sarcastic (as usual). Anyhow I asked him if the company
would be patient with me when (IF) I came back if I was slow at first
and did not make my quota. His responce was "you won't be slow"
and "you're going to be all right, arthritis is for old people".
Whereupon I told him that this was not OA but PA which meant that my
immune system was causing this to happen to me. His responce
was "you won't be slow,you will be fine". Then he added "won't the
cold make this worse maybe you should transfer to the other side of
the warehouse (they are not refrigerated)?". See my boss is not the
type to talk to you about your performance, he will just punish you
by sending you into the freezer (0 to -20 degrees) over and over
until you are a human popsickle. Also another one of his favorite
tricks is to tell everyone else things that will get them mad at you
and start fights
with you. No one really messes with me because I already took on the
biggest bully in there, and I was fast enough. But I don't think I
am up to any more emotional stress, on top of physical stress. In
many ways they are like a pack of lions, they will pick off the
weakest one. But this job pays $17/hr. it's not so easy to walk away.
I guess I am lucky that my husband makes decent money so I am one of
the only ones at this place that could leave this job without losing
everything. This is a bad time thou for this to happen (money wise).
Christmas time with 5 kids is no time to change jobs, besides doctor
bills,and 2 house payments. My husband wants me to quit, he think
that this job is taking too much out of me
and he says he wants his wife back. But he is not a worrier, that is
my designated post in the family. I know I am more fortunate than
many others and I am grateful for that, but this is causing such a
rapid chain of events that I can hardly keep up. I haven't even had
time to deal with the fact that I can't just do anything I want or
need to anymore and that really upsets me. The PA doesn't just
effect our health, it effects many areas of our life, I wish the
doctors relized this. On the brighter side the meds are helping me
to feel human again and that has been a blessing, I don't think I
could deal with all this very well at the level of pain I was at.
I'm sorry this is so long, I hate making big desisions, I am always
afraid I will make the wrong one. Thanks for letting me vent!
--- Merribeth

[OT] Off Topic Posts

2007-01-23 00:43:07

I agree. People should go to the specific forums for what they want to discuss.
Good point, well made!

Taking Metho with Enbrel

2007-01-22 11:05:46

Dear Friends,
Taking Metho with Enbrel is completely different than your other Metho
experience. For starters it will be a minimal dose. You can also be given a
prescription for Zofran, which is specifically formulated for the nausea
caused by meds like Metho! Secondly, the Metho is needed to be used with
Enbrel so that you will hopefully not make an immune response (antibodies) to
the Enbrel and have your body attack it and make it ineffective after a few
weeks or months of use! You want to get the maximum run time out of Enbrel,
right?
Anyhow, that is my personal experience when I took the Enbrel, with what my
doctor explained to me, and how it worked for me when I took it. I hope this
clears up some misconceptions you may have had about the role of
Methotrexate.
Michelle
group founder

Your Welcome Charlie/Newbies

2007-01-22 10:43:10

Dear Charlie and all other Newbies,
You are sincerely welcome for my starting the PA group. Around three and a
half years ago I got it in my head to start an on line mailing list
informational support group for PA. At first it was around ten people from
the alt.support.arthritis areas on newsgroups who signed up. I "advertised"
heavily everywhere I could think of (for free of course!) on line for the
first year and finally it got to the point that the group began to grow
without any help from me!!
It is so rewarding to see so many people get help from their confusion and
guidance as to where to get the facts on the web if need be. It is also
really neat that the sharing and caring of our group, in my opinion, is
unsurpassed for any group I have ever seen on the web. IN the last few years
the only "in fighting" has been over'......dare I say it.......off topic
postings. There... it is out there. Now do not start up again with them. I
still discourage them but do allow only a couple per day if you absolutely
feel you just have to post it and that it is in the interest of PA.
Anyhow, Thanks again and I am looking forward to more time together.
Thank you to everyone who set up the website, the newsletter, and of course
all the moderators and others I am sure I did not mention due to my foggy
brain.
My best to you all.
Michelle
Group Founder/Owner

Update on Could my 5 yr old have P?

2007-01-22 09:08:01

Hi all
Well I took Rhi (who's 5)to the doctors and she said she was too young for
psoriasis???? And she said it was eczema (however you spell it?). She gave
me some Nizorell shampoo and some 1% hydrocortisone cream for her body ,
also some aqueous cream and said under no circumstances use Biological
washing powder. She said I should also not use the Biological washing powder
either or anyone for that matter. She said to avoid using fabric
conditioners also. She said Rhi would probably grow out of the eczema. At
the chemist when I went for the items the pharmacist said there had been a
rush on the hydrocortisone cream (for both adults and children), perhaps
there is an increase in incidences of eczema this time of year? I must admit
I know very little about eczema. I feel very relieved that she didn't
immediately say yes it was psoriasis. Hopefully this cream will help clear
up the problem. Poor Rhi is itching quite a lot now, though after just one
application of the cortisone cream the rash is looking less red.
Thanks
Cathy (UK)
[Moderator's note: Cathy, I suggest you take Rhi to a dermatologist who knows
something about psoriasis. If you check with the National Psoriasis Foundation
(NPF, see http://www.psoriasis.org/f000.htm ) you will quickly find out that
psoriasis can strike children and adults of any age. I'm not saying that Rhi has
psoriasis, only that it shouldn't be ruled out solely on the basis of her age.
Psoriasis and PA both seem to be worse during the winter months - perhaps
because of the decrease in sunlight or some other factor that related to winter.
Regards, Ron]

Welcome <a href="/group/PsoriaticArthritis/post?postID=LAVapKdG5z_O_WmL7B0ntMpvvzZHZ7pFTVRLs5BNSpOpuxHb0LOxOJFctVh5UbYrpt_NlmE">gmpc@...</a>!

2007-01-21 20:28:17

Welcome gmpc@... to the PA mailing list. We are a
group of over 380 PA'ers from all over the world who
share our experiences by e-mail almost daily.
Please feel free to browse the archives to learn about
our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@onelist.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

Welcome <a href="/group/PsoriaticArthritis/post?postID=S6nhyNTOucCmdRBv5zKo8V-AG3143x2zYBFruhIdC3OA9fs5ME8XVivEpDRJPyz-3gnN0IqVHEbczPyQ">nicko41@...</a>!

2007-01-21 14:02:27

Welcome nicko41@... to the PA mailing list. We
are a group of over 380 PA'ers from all over the world
who share our experiences by e-mail almost daily.
Please feel free to browse the archives to learn about
our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@onelist.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

Welcome <a href="/group/PsoriaticArthritis/post?postID=_u0-aCTISZgx5zMrmHL2X9e1kR7jl0XdsYOjBlrsf1DOmFRsI7cnJORX2Q5E909Ox_sMnTy2NRIfTA">plunsoccer@...</a>!

2007-01-21 12:45:11

Welcome plunsoccer@... to the PA mailing list.
We are a group of over 380 PA'ers from all over the
world who share our experiences by e-mail almost
daily.
Please feel free to browse the archives to learn about
our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@onelist.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

Two Nickels and Five Pennies, OT

2007-01-21 01:29:00

In the days when an ice cream sundae cost much less, a 10-year old boy

entered a hotel coffee shop and sat at a table. A waitress put a glass of water

in front of him. "How much is an ice cream sundae?"

"Fifty cents," replied the waitress.

The little boy pulled his hand out of his pocket and studied a number of coins

in it. "How much is a dish of plain ice cream?" he inquired.

Some people were now waiting for a table and the waitress was a bit impatient.

"Thirty-five cents," she said brusquely.

The little boy again counted the coins, "I'll have the plain ice cream," he said.

The waitress brought the ice cream, put the bill on the table, and walked away.

The boy finished the ice cream, paid the cashier and departed. When the waitress

came back, she began wiping down the table and then swallowed hard at what she

saw. There, placed neatly beside the empty dish, were two nickels and five

pennies--her tip. A 3rd Serving of Chicken Soup for the Soul page 19

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2007-01-21 01:27:30

Welcome lolli213@... to the PA mailing list. We
are a group of over 380 PA'ers from all over the world
who share our experiences by e-mail almost daily.
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our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@onelist.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

The Beauty Remains; the Pain Passes OT

2007-01-20 22:03:14

Although Henri Matisse was nearly 28 years younger than Auguste Renoir, the two

great artists were dear friends and frequent companions. When Renoir was confined to his home during the last decade of his life, Matisse visited him daily.

Renoir, almost paralyzed by arthritis, continued to paint in spite of his infirmities.

One day as Matisse watched the elder painter working in his studio, fighting

torturous pain with each brush stroke, he blurted out: "Auguste, why do you con-

tinue to paint when you are in such agony?"

Renoir answered simply:"The beauty remains; the pain passes." And so, almost

to his dying day, Renoir put paint to canvas. One of his most famous paintings,

The Bathers, was completed just two years before his passing, 14 years after he

was stricken by this disabling disease.

A 3rd Serving of Chicken Soup for the Soul page 275

To Becky OT

2007-01-20 07:31:56

Hi Becky
Well I have just serviced the aeroplane, pumped up the tyre pressure to
allow for the extra luggage.
The weather is cloud and rain today, but is due to break for the weekend, a
mini heatwave by all accounts.
Yesterday it was sunny hot and humid, today it is humid and rain.
Therefore I hope you packed everything from North Pole winter wear, to
Hawaiian bikini, with wet storm wear, from the Tropical rain countries. Tis
possible to experience every known season in one day, as you will find out.
Love and God Bless
Gillian
..........Natural forces within us are the true healers of disease........

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2007-01-20 04:01:34

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Whoever Finds This, OT

2007-01-19 22:16:25

On a quiet street in the city a little old man walked along shuffling through the

autumn afternoon, and the autumn leaves reminded him of other summers come

and gone. He had a long lonely night ahead, waiting for June.

Then among the leaves near an orphan's home a piece of paper caught his eye,

and he stooped to pick it up with trembling hands. As he read the childish writing

the old man began to cry 'cause the words burned inside him like a brand.

"Whoever finds this, I love you, whoever finds this, I need you I ain't even got no one to talk to so whoever finds this, I love you!"

The old man's eyes searched the orphan's home and came to rest upon a child

with her nose pressed up against the window pane. And the old man knew he

found a friend at last, so he waved to her and smiled. And they both knew they'd

spend the winter laughing at the rain.

And they did spend the winter laughing at the rain talking through the fence and

exchanging little gifts they had made for each other. The old man would carve

toys for the little girl. She would draw pictures for him of beautiful ladies sur-

rounded by green trees and sunshine, and they laughed a lot.

But then on the first day of June the little girl ran to the fence to show the old man

a picture she drew, but he wasn't there. And somehow the little girl knew he wasn't coming back so she went to her room, took a crayon and paper and wrote...

"Whoever finds this, I love you, whoever finds this, I need you

I ain't even got no one to talk to so whoever finds this, I love you!"

Author Unknown

A 3rd Serving of Chicken Soup for the Soul pages 65-66

To Sherman re tylenol user

2007-01-19 12:20:06

Hi Sherman,
I have been taking tylenol#3 for about 3 yrs, daily. I usually take between
2-5 a day and have been for the time I've been on it. I also take codeine
contin 150 mg three times a day ( currently trying to get down to 2 a day..
today is day 4). Anyway, I take these on top of all my other
antiinflamatories and DMARDS.. metho, gold, arthrotec,plaquenil,elavil...
So, yes, I am a long time user. I never exceed the 6 a day, which is the max
for acetaminophen. I was worried about my liver as metho and tylenol is
metabolized there, but my enzymes are fine and the docs aren't worried as
long as I stay within the safe limit. Now, having said that, I don't take
them regularily, in between my meds. I'm not sure if that's what you meant
or not. I take them ( the tylenol#3) as needed and every once in awhile it
is on a pill or maybe even none. The codeine I do take regularily.
Angela

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tylenol

2007-01-18 20:08:41

Does anyone else like me supplement their meds with tylenol. I
automatically take tylenol in between my anti-inflam meds and sometimes
pain meds. I swear it kick starts them. My rd thinks this is fine as
long as I don't exceed the limit for the day. My liver tests are always
ok. Is there any long time users of tylenol out there? I have been
doing this for years now...hopefully I won't die from liver failure.
Here I am staying away from the harsh dmards...but loading my body with
tylenol because for some weird reason....I feel
safer...........................................................................\
.......
Jayne

Wake Meal Saga OT

2007-01-18 13:01:56

Hi All
Well it seems that some relations arrived at the Hotel my Cousins are
staying in, rather late last night. Suffice to say, MY American Cousins were
exhausted from there fast drive to the Funeral, so refused to go to the
Reception to meet them. The Wake was held in a Hotel called "The Ballygary".
As you know WE were in "The Meadowlands!" Now how Ballgary becomes
Meadowlands, I have not yet figured out, perhaps someone had already started
the Wake?
However, we all paid tribute to Cousin Annie RIP, so did it really matter
that we were not ALL Together?
Love and God Bless
Gillian
..........Natural forces within us are the true healers of disease........

update

2007-01-18 11:12:46

HI EVERYONE, I JUST WANTED TO LET YOU KNOW HOW IM DOING, I WENT ABOUT 10 DAYS FEELING SO GOOD. I WENT ON Z-PACK ANTIBIOTICS, YOU TAKE FOR 5 DAYS AND THEY KEEP WORKING FOR 5 MORE DAYS. I WOKE UP TODAY ALL SWOLLEN AND INTCHY. IM THINKING ITS CAUSE IM OFF THE ANTIBIOTICS BUT I WAS EATING LOTS OF JUNK IN THE LAST FEW DAYS AND WAS UNDER SOME STRESS TAKING CARE OF MY SON, WHO IS BETTER NOW AND FIGHTING WITH HUBBY OVER THE WEEKEND. SO I GESS THE COMPO OF ALL IS WHATS DOING ME IN. BUT ATLEAST I WASHED AND WAXED MY KITCHEN FLOOR, AND WASHED MY CAR , I HAVENT DONE THINGS LIKE THIS FOR A LONG TIME.I WILL HAVE TO GET BACK ON TRACK WITH MY DIET AND REST, I DID START BACK ON ENBREL SO HOPEFULLY THAT WILL GIVE ME SOME RELEIF. IN THE CREASES OF MY ARMS WERE SO FLARED UP LAST NIGHT I ITCHED SO MUCH I THOUGHT I WOULD DIE (BUT I NEVER DO) SO I PUT AN ICE PACK ON THEM IT REALLY HELPED ALOT. THANKS TO THE PERSON WHO ONCE POSTED THAT ICE HELPS WITH PAIN AND ITCHING.THANKS FOR LETTING ME VENT OUT
ONCE MORE!

DONNA L

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[RE][PsoriaticArthritis] pain med poll first results???

2007-01-17 20:03:21

Hello Patricia,
I'm quite willing to participate in any poll but for
this question I don't know how to reply.
When I'm in real pain I take an aspirin. I must say
my "pain ceiling" is very high, probably due to having
suffered for many years from migraine for which I had
tablets, some morphine derivate, which helped
immediately and, curious enough, allowed me to support
more pain than before because I knew I could stop it
at will.
During my last flare, when the rheumatologist asked me
if I wanted him to prescribe something strong I said
not yet. But I knew anytime I would not be able to
stand it I could get whatever I thought was needed.
Maybe on my little island I am lucky with my doctors
but that is my experience.
I don't say that everybody has to be a tough cooky,
because pain is something very personal but I am also
surprised that nobody complained about not getting
enough pain relief.
A very interesting poll.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

To Geri

2007-01-17 07:14:36

Hi Geri
but I thought that they were good for you?!<
Melanie Dale gave the explanation far better than I could:
vegetables) and eggs. This doesn't mean that you can't eat them at all, but
just that you need to increase sources of Omega-3, and put the ratio of
Omega-3 to -6 in a better balance<
I thought that EPO being an OIL was FAT, therefore was Cholesterol. In my
mind, if I have High Cholesterol, one needs to know how much are the BAD
fats and how much are the GOOD fats. If one has a lot of BAD fat floating
around the system, because the Liver is manufacturing it, by taking the GOOD
fats in, they should reduce the Bad Fats.
Love and God Bless
Gillian
..........Natural forces within us are the true healers of disease........

TEE

2007-01-17 02:36:45

Hi Janice in Florida
Well I do not know about TEE, but they kept wiring me up for a jump start,
well that is what it felt like. The nurse came in and placed sticky patches
on my ankles, chest and wrists, before hooking them up to wires on a
portable cart. While I do not mind this, I really wish they would take the
sticky patches off afterwards! As to what the results were, no one told me
and I did not want to know anyway.
Love and God Bless
Gillian
..........Natural forces within us are the true healers of disease........

Thanks, etc.

2007-01-16 20:31:50

Thank you Angera and Gillian for answers. I hope the funeral goes as
well as it can-please accept my condolences also, Gillian. (I am
curious if your relatives will actually arrive in time.)
Donna, it was so wonderful to read about your hands clearing up!
Blessings,
Joan

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Yea!

2007-01-16 04:19:18

Way to go Donna, We all need these small victories to keep us going. I am so happy for you and hope that your improvement continues. Thanks for sharing.

Allayne

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thanks

2007-01-15 13:41:05

Thanks, Melanie, it also helped me to understand better. In fact I printed it out to keep. Keep feeding us the science in layman's language and we may all pass the exams. HA. Seriously, it did clear up a few questions I had. Donna in Mich

be discussed. Who, why, where...EPO is toted as helping to lower
cholesterol. What does cholesterol have to do with arthritis? Should we all
go out and get huge jars of Metamuescil to lower our cholesterol? Pat B
Hi Gillian,
I thought I would help your understanding of cholesterol by giving
you the whole story.....
Cholesterol can be eaten, that is true, but it is also made by the
body from proteins, and other compounds. Mostly people's problems with it
come from storage of it in the body, or genetic metabolic imbalance (ie your
body makes more or less than the body needs). It can be stored in many
tissue cells, and well as in the liver. Let's start at the beginning.
Fats and cholesterol are digested, and taken up into the blood
stream via fat particles called Chylomicrons. The chylomicrons contain
DIETARY cholesterol and fatty acids in the form of tryglycerides (basically
3 fatty acids strung together). The fatty acids can be removed at this point
(by cells that it passes) and stored in fat tissue or muscles to be stored
or used for energy, or they can continue on to the liver.
The liver absorbs these chylomicrons, and processes them into
particles called Very Low Density Lipoprotein particles (VLDL's). These
contain mostly triglycerides and a little bit of cholesterol (from diet or
synthesized in the liver). The cholesterol helps stabilize this particle
whose main purpose is to transport the triglycerides, but a lot of the time
ends up transporting cholesterol when there is an abundance of it (as with
most of us). After most of the triglycerols have been absorbed (by fat
tissue for storage, in the case of excess, or to many tissues who use it for
energy, and as building blocks for other things)the particles are now called
VLDL remnants, and are mosly made of cholesterol at this point. Cholesterol
from this particle can be used by many cells of the body. The main use is
insertion into the cell wall. This is normal. If there is lots of
cholesterol, lots will be absorbed, and cells can store the excess. But
cells are capable of making their own as well.(from proteins and other
compounds) Most cells that store cholesterol are liver, fat and adrenal tissue.
VLDL remnants will be "rebuilt" into Low Density Lipoprotein
particles (LDL's) which have other purposes, but when there is a lot of
cholesterol, it will be absorbed by the cells and stored, or inserted into
cell membranes.
VLDL and LDL particles are "bad" because they distribute cholesterol
that can accumulate in the body and cause problems (mostly
atherosclerosis/heart disease). You will generally have a high VLDL and LDL
level if you do not exercise, and eat lots of fat, and high cholesterol foods.
High Density Lipoprotein particles (HDL's) are synthesized in the
liver and intestine. They contain almost no cholesterol, but they are
"good" because the purpose is to collect excess cholesterol and return it to
the liver. (this particle will actually take cholesterol from the cell
walls. This causes the cell to free up stored cholesterol to replace what
was lost. If this happens enough, there will hardly be any excess
cholesterol around, and the cell will just make what it needs.) It also
gathers excess cholesterol from VLDL remnants and LDL particles, preventing
excess storage of cholesterol. You will generally have a high HDL level in
your bloodstream (this is good) if you exercise, and eat a good diet low in
fat and high in fibre. The cholesterol brought back to the liver is used to
make bile salts which helps digest fats and lipids in the foods we eat.
I don't know how cholesterol would cause arthritis, but it is a
factor in other diseases. Imbalances might cause problems in the digestion
and disribution (ie in properly stabilizing the transportation particles) of
fats, whose metabolytes cause a much grater effect on many disease processes.
Fatty acids are the source of Prostaglandins and Leukotrienes that
have much to do with inflammatory response. Omega-6 fatty acids produce
prostaglandins that have been proven to increase cancer cell proliferation,
and leukotrienes that promote inflammation (ie arthritis) and increase
sensitivity of allergic reactions (ie asthsma, allergies). Steroids and
NSAIDS block the pathways that make these compounds, but don't eliminate the
building blocks that were ingested in the diet. Mild problems can be
controlled by diet alone, but more severe ones still need medication.
Omega-6 fatty acids are high in all animal products, many plants(ie
vegetables) and eggs. This doesn't mean that you can't eat them at all, but
just that you need to increase sources of Omega-3, and put the ratio of
Omega-3 to -6 in a better balance.
Omega-3 fatty acids produce Prostaglandins that have shown no cancer
cell promotion and Leukotrienes that have absolutely no inflammatory
potential. This is why Evening primrose oil is so effective. Omega-3 fatty
acids are also found in large proportions in flax seed, canola(or rape seed)
oily fish and other sources ( we feed our chickens flax seed, and get agreat
source of omega-3 from our eggs as a result - it is now being marketed all
across Canada as "Omega-3 Eggs").
Other Omega-3 products in the body help heart disease by affecting
clotting (less clotting lowers incidence of strokes, etc,) and helping the
blood vessels to dilate (helping heart attacks, etc.)
I hope that explains a little how cholesterol works, and how I don't
think it is related to arthritis. Certain fatty acids are definitely
beneficial in managing a disease like arthritis, but I don't really think
they CAUSE it. That would more be from a genetic source that causes normal
triggers of inflammation to be over sensitive, or maybe more trigger cell/or
proteins are made by the body.... it is still being researched, and it is a
complex problem.
Melanie Dale :):)
(Roy's wife, the Biology student)
p.s. I just got prescribed a drug called Chloroquine (I don't know if it is
a generic name or a specific brand name) Has anyone had any success with
it?? I sure am hoping that it will help with my PA, because no one has been
able to do anything for me.
Roy Dale
Roy, Melanie
Robbie, Andrew
and Shannon :) :) :) :) :)

Thank You....Donna

2007-01-15 01:31:25

Hi Donna
ANTIBIOTICS, I WONDER HOW THE HELL THAT HAPPENED SINCE I DONT DO ANYTHING.I
DONT WORK<
In my experience you do not need to venture out of the home to contract any
infection. Kind people who visit, including Mothers, Husbands, and Children
are capable of bring the bugs into the home.
Well if Enbrel is a immune suppressant and I have not read up on this new
drug, so do not know how it operates, any infection will run a riot in your
system. One of the draw backs of immune suppressant drugs.
Anyway I hope the antibiotics clear this infection, but just think back to
the infection contact point.
Love and God Bless
Gillian
..........Natural forces within us are the true healers of disease........

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THANK YOU!

2007-01-14 06:09:06

HI EVERYONE, THANK YOU FOR ALL THE RESPONSES, I ENDED UP GOING TO MY DOC THE OTHER DAY INSTEAD OF MONDAY. IT ENDED UP THAT I HAVE AN INFECTION ALL OVER MY BODY SO HE STARTED ME ON ANTIBIOTICS, I WONDER HOW THE HELL THAT HAPPENED SINCE I DONT DO ANYTHING.I DONT WORK , I HAVENT BEEN DOING HOUSE WORK, IM ALWAYS WEARING WHITE COTTON GLOVES ECT. I GUESS ITS CAUSE MY HANDS ARE SO RAW IT LEAVES ME OPEN TO GERMS.(YUK!). I HAVE TRYED DOVONEX BUT IT BURNS MY SKIN SO BAD IT LEAVES ME IN SO MUCH PAIN I FEEL LIKE I COULD FAINT!. I HAVE BEEN PUTTING ZINC CREAM ON AND IT DOES SOOTH THE SKIN BUT DOESNT HEAL IT. SO NOW I HAVE TO STOP ENBREL AGAIN, IM NOT HAPPY ABOUT THAT . THAT SHOT REALLY HELPS WITH THE PAIN ON THE INSIDE. I STARTED EPO ABOUT 1 MONTH AGO I THINK ITS HELPING WITH THE SWELLING, I AM TRYING A DIET TO BALANCE MY EATING HABITS SINCE THEY WENT OUT OF CONTROL THROUGH ALL THIS, I HAD AN AWFUL DAY YESTORDAY BUT IM HOPEING

THE INFECTION WILL CLEAR SOME OF THIS MESS. IM FEELING BETTER TODAY AND READING THE POSTINGS HELP ME TO RELISE IM NOT ALONE.

THANK YOU, THANK YOU, THANK YOU! SO MUCH FOR PULLING ME BACK

UP FROM MY MONTHLY FALL. (PEOPLE REALLY DO MAKE A DIFRENCE)

DONNA L

IN NEW ENGLAND

work and PA

2007-01-13 21:51:11

Linda C,
The first two years with Pa were very hard to stay at work for me.
Once the meds get to working and I learned to cut back on what i do I
have gotten around better.
Now:
Do you stand in the same place all day at work?
Does the post office have mats on the floor?
Do you have cushioning shoes or durashock heels on your work boots?
Can you have them put in something where you stand where you can
raise up one foot? Like the rod that runs along the bottom of a bar.
Maybe a box to shift your weight? How about a stool? With or without
wheels.
Do you use the back braces that they supply for heavy lifting? Have
you gotten a note from your doc about limiting the weight you lift?
Is there any other work you can do for your employer that is easier
on the back to get you thru til you retire?
Have to find a carrot that keeps you moving. Some goal to get thru
until the meds help etc and/or you get a little remission from
flaring.
When you go home do you put your feet up or are you still trying to
do too much at home? Got to give some where to keep going at work.
Any more ideas?

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To Paul

2007-01-13 12:03:48

Hi Paul
I for one read and digest all my mail usually with my breakfast. Nice way to
start the day.
In my life to date I have been under [not what you are thinking] a Homeopath
and Reflexologist. Both had some good affect on my conditions, but like
everything else, it soon wore off. I am not brave enough to see an
Acupuncturist, the needles are too small and I do not think I could handle
it. If they used bigger needles, fine by me. I have read many diet/detox
books, but I could not relate to there finding. One stated that people with
arthritis have a lack of 'ear wax' while mine is akin to a bee hive! Before
they announced that bee stings are good for arthritis, I had been stung
several times and apart from the fact the area was dead, found no useful
affect.
A f