New here

July 2, 2004

In a message dated 7/2/2004 8:32:43 AM Eastern Standard Time,

dosgatos22002@... writes:

I'm 26 and have had P for 7 years. What do you think I should

consider? The rheum. said he is not going to try anything other

than NSAIDS for quite a while because I am so young. I'm worried

more damage is occuring and I would like to stop it sooner rather

than later.

Thanks for your thoughts,

Hello,

Yes, you are young but you are also the only one who can say how much pain

you are in. If your pains keep progressing then you can have further damage

if nothing is helping you. I believe I had PA since my 20's and I am now

50. Most doctors blew me off including a rheumy around here that was supposed

to be good. I only got diagnosed about a year ago when symptoms became

severe. Listen to your body and if you are not happy with the doctor then see

if

you can go to one who will listen. Where do you live?

Janet

[Editor's Note: I'm 54, and have had PS and AS since 17....I ABSOLUTELY AGREE

with Janet: You MUST take charge of your care. Listen to the docs; let them be

your Congress (advise and consent role), but YOU be the President (the executive

decision-maker). If you don't like the direction a doc is leading, fire her/him

and get another. If you're being unwise or unrealistic, odds are strong no doc

(worth anything) will agree. Good, confident (read competent) docs want you to

be educated about your disease, and involved in your treatment; insecure (and

that means shaky skills) doctors want you dumb and acquiescent. Seven years of

medical-related education (B.S., M.S, Counseling Psychology &

Psychopharmacology), a career in medical-related fields, and 37 years education

as a Rheumatological & Internal Medicine services consumer, have all taught me

the above (O yeah: and this advice from a 30-year RN: " Don't fall asleep in the

hospital... " ;-); anyone with a like background--and the brains God Gave a

Gopher--will tell you the same damn thing.

Okay, then, from form to substance: As Janet observed, and pain (intensity) is a

fairly reasonable guide to some-to-most likely damage-producing events &

conditions extant within you (although: do not rely on pain alone as a guide to

damage production, for any more than a couple of months!). So make your

judgement whether palliatives (read: symptom-reducing meds that do not touch

underlying disease processes, and therefore allow damage to continue) also known

as NSAIDs, which I just don't like in general; the risk/benefit profile is poor

in my view: remarkably little pain relief, some inflammation reduction; at the

risk of GI problems, and more. Aspirin is just as effective. If you can't take

aspirin, then maybe. But if you're in more than nuisance pain, you need a

centrally-acting analgesic.

SO: If you are concerned about damage--I was 30 before taking a DMARD

(disease-modifier), methotrexate, and I'm paying for that now, in pain,

limitation, and as I am now applying for SS Disability--get on about fighting

the disease, not the symptoms.

D.

July 2, 2004

First of all. not all RDs are created equal. If you are not getting

positive results, get a second opinion preferably from a younger person with

experience in modern biologic drugs. I had similar problems with my hands.

Enbrel has reversed the disease but I have permanent joint damage caused by

the disease before starting Enbrel. I had 9 joints affected. All resolved

eventually but 3. Unless you want these crooked fingers for the rest of

your life I would suggest you find an RD that will treat you more

aggressively with a biologic drug.

This disease is a real drag and you have to be your own advocate. I

demanded to try Enbrel before it was even approved for PA. Without it I

would be a cripple and probably not be here the way my PA was progressing.

Sometimes PA is cyclic and Enbrel can get you through a flare lasting months

or years. If your immune system normalizes, you may then be able to reduce

or eliminate it. I now only take one injection per week and the occasional

Viox compared to the pharmacopia of poisons I had to endure before starting

Enbrel. R.E.

[ ] new here

> Hello everyone,

> I was diagnosed with PA in December of '03. I had some

> questions on meds. I have been on Vioxx, Celebrex, Mobic, Bextra,

> Sulfasalazine and 2 medrol packs. So far (unfortunately) the only

> thing that has made the biggest difference was the medrol pack. I

> know you can't stay on steoids for that long so this is really not

> an option.

> Anyway, now I am on Voltaren. Initially the pain was in my

> shoulders, knees, and thumb joints. Eventually it progessed to my

> hands and now my feet. Since I have been on the Voltaren my

> shoulders and knees do feel better but my hands and feet do not. I

> go to the rheum. next week. When he asks if the Voltaren is working

> I don't know what to say? Sounds stupid I know, but so far my

> experience with rheumatologists is not positive. As soon as I say

> something might be working, and my pain is less, they consider the

> pain issue solved.

> About 3 months ago, two of my fingers on my right hands began

> to swell in the joint and now they are crooked. It happened quick

> and they haven't straightened out yet. They are really painful

> too. My left foot has begun throbbing in the ball of the foot

> area. It feels like someone is poking with me with a hot poker some

> days.

> I'm 26 and have had P for 7 years. What do you think I should

> consider? The rheum. said he is not going to try anything other

> than NSAIDS for quite a while because I am so young. I'm worried

> more damage is occuring and I would like to stop it sooner rather

> than later.

> Thanks for your thoughts,

> C

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> Also,in August 2001,list member Jack aka Cornishpro@... began

to conduct extensive research which he publishes as the " Psoriatic Arthritis

Research Newsletter " , monthly in our email and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage as well as

the archives of the list.

>

> Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to browse

them at your convenience.

>

> LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can

help you out with AT LEAST an educated guess for an answer! If not,we can

steer you in the right direction with a good website to go to,

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> Orin, List Editor

> , List Editor

> and any others who help in any way (thank you!)

>

July 3, 2004

If you are old enough to get the disease, you are old enough to be treated

for it using the best medicines available at this time. Your rheumy sounds

nuts. My recommendation would be to find a better rheumatologist - one that

wants

to work with you to pro-actively fight the disease rather than the current

rheumy who wants to wait until your body has been permanently damaged.

Wishing you wellness,

Kathy F.

July 3, 2004

>>>I'm 26 and have had P for 7 years. What do you think I should

consider? The rheum. said he is not going to try anything other

than NSAIDS for quite a while because I am so young. I'm worried

more damage is occuring and I would like to stop it sooner rather

than later.<<<

Age in my opinion is the most ridiculous excuse for not treating PA

that I have ever heard. Very young children develop RA and I have

never head of a doctor telling a parent that they were too young to

be treated for it. PA is very much like RA in many respects; PA can

cripple in very similar ways. In fact PA can be worse because very

few people know and understand what it means to be diagnosed with

PA.

I am 43 and I know it may be hard for those in their 20's to believe

but it's my opinion that I am `too young' to have this disease. But

unfortunately this disease is no respecter of persons. It doesn't

matter how old you are, what your gender, race or religious

background is. What matters is you're sick and this illness is

slowly destroying you life. You have every right to expect the

doctor treat you in the most effective way possible regardless of

his personal prejudice or beliefs.

In my personal opinion it's time for you to find another

Rheumatologist.

Pamela

July 3, 2004

Yeah everything you said is what I'm afraid of. I have seen 3

rheumatologists so far. The first said there was nothing wrong with

me, the second (after waiting an hour to see him the first time and

then the second time I had to leave after waiting an hour and a

half) gave a me a little pat on the head, agreed something was going

on but it seemed mild, and said call me if it gets worse. My hands

and feet weren't affected at this point. This third doctor is the

most sympathetic " acting " which doesn't say much. He said I

definitely have PA and the disease is probably progressing past

ibuprofen but he's not going to try biologics until he's tried every

other NSAID. I don't know where else to go at this point? I'm open

to any and all suggestions.

> First of all. not all RDs are created equal. If you are not

getting

> positive results, get a second opinion preferably from a younger

person with

> experience in modern biologic drugs. I had similar problems with

my hands.

> Enbrel has reversed the disease but I have permanent joint damage

caused by

> the disease before starting Enbrel. I had 9 joints affected. All

resolved

> eventually but 3. Unless you want these crooked fingers for the

rest of

> your life I would suggest you find an RD that will treat you more

> aggressively with a biologic drug.

>

> This disease is a real drag and you have to be your own advocate.

I

> demanded to try Enbrel before it was even approved for PA.

Without it I

> would be a cripple and probably not be here the way my PA was

progressing.

> Sometimes PA is cyclic and Enbrel can get you through a flare

lasting months

> or years. If your immune system normalizes, you may then be able

to reduce

> or eliminate it. I now only take one injection per week and the

occasional

> Viox compared to the pharmacopia of poisons I had to endure before

starting

> Enbrel. R.E.

July 3, 2004

Thanks Janet and ,

I also have a background in health care. I have a B.S. in

recreational therapy and am going for my R.N. now. I have worked in

health care for 6 years. That's what infuriates me I guess. I am

not one to go running to a MD when I get the sniffles. I really

would like to stop the pain but more so I would like to stop the

damage now, rather than later.

I have been to 3 rheumatologists over the course of a year. The

first said my blood work came back fine. There was nothing wrong.

The second ( a year later) said there was something wrong but for

every appt I had I would have to wait an hour to get in and then the

second one after waiting the 1 1/2 I had to leave without seeing

him. He was very abrasive when I did get in so I tried yet another

rheum. Well he's not going to move to a biologic without trying all

the NSAIDS first, which don't appear to be helping.

I'm sore, frustrated, and just bitter. I live in the southern NH

area. I work near Boston and am seeing a rheum in Winchester area.

If you know any good rheumatologists in that area, please pass them

along.

Thanks again for your replies!

C

>

> In a message dated 7/2/2004 8:32:43 AM Eastern Standard Time,

> dosgatos22002@y... writes:

>

> I'm 26 and have had P for 7 years. What do you think I should

> consider? The rheum. said he is not going to try anything other

> than NSAIDS for quite a while because I am so young. I'm worried

> more damage is occuring and I would like to stop it sooner rather

> than later.

> Thanks for your thoughts,

>

> Hello,

>

> Yes, you are young but you are also the only one who can say how

much pain

> you are in. If your pains keep progressing then you can have

further damage

> if nothing is helping you. I believe I had PA since my 20's and

I am now

> 50. Most doctors blew me off including a rheumy around here

that was supposed

> to be good. I only got diagnosed about a year ago when symptoms

became

> severe. Listen to your body and if you are not happy with the

doctor then see if

> you can go to one who will listen. Where do you live?

> Janet

>

> [Editor's Note: I'm 54, and have had PS and AS since 17....I

ABSOLUTELY AGREE with Janet: You MUST take charge of your care.

Listen to the docs; let them be your Congress (advise and consent

role), but YOU be the President (the executive decision-maker). If

you don't like the direction a doc is leading, fire her/him and get

another. If you're being unwise or unrealistic, odds are strong no

doc (worth anything) will agree. Good, confident (read competent)

docs want you to be educated about your disease, and involved in

your treatment; insecure (and that means shaky skills) doctors want

you dumb and acquiescent. Seven years of medical-related education

(B.S., M.S, Counseling Psychology & Psychopharmacology), a career in

medical-related fields, and 37 years education as a Rheumatological

& Internal Medicine services consumer, have all taught me the above

(O yeah: and this advice from a 30-year RN: " Don't fall asleep in

the hospital... " ;-); anyone with a like background--and the brains

God Gave a Gopher--will tell you the same damn thing.

>

> Okay, then, from form to substance: As Janet observed, and pain

(intensity) is a fairly reasonable guide to some-to-most likely

damage-producing events & conditions extant within you (although: do

not rely on pain alone as a guide to damage production, for any more

than a couple of months!). So make your judgement whether

palliatives (read: symptom-reducing meds that do not touch

underlying disease processes, and therefore allow damage to

continue) also known as NSAIDs, which I just don't like in general;

the risk/benefit profile is poor in my view: remarkably little pain

relief, some inflammation reduction; at the risk of GI problems, and

more. Aspirin is just as effective. If you can't take aspirin, then

maybe. But if you're in more than nuisance pain, you need a

centrally-acting analgesic.

>

> SO: If you are concerned about damage--I was 30 before taking a

DMARD (disease-modifier), methotrexate, and I'm paying for that now,

in pain, limitation, and as I am now applying for SS Disability--get

on about fighting the disease, not the symptoms.

>

> D.

>

July 4, 2004

In a message dated 7/4/2004 8:23:59 AM Eastern Standard Time,

dosgatos22002@... writes:

He said I

definitely have PA and the disease is probably progressing past

ibuprofen but he's not going to try biologics until he's tried every

other NSAID. I don't know where else to go at this point? I'm open

to any and all suggestions.

Why don't you print all these posts from those of us who have been where you

are and show them to the 3rd doc. Then perhaps you can tell him you do not

want to wait until all the NSAIDS fail. I went through all the NSAIDS first

and now I am sorry someone did not diagnose me sooner. I am also a few

credits away from my RN but due to knees and feet and brain fog never finished.

Don't let this happen to you.

Janet

July 4, 2004

Dear Clair, I can tell you are really frustrated with your doctors and you

have every right to be. Your story sounds so much like mine it isn’t funny.

The only difference is it took me seeing 5 rheumatologists before I found

one who would work with me. The first one, who I had for almost 13 years

developed cancer and scaled down his practice. He was 4 hours away, but I

used to drive and see him regardless, but my arthritis got too bad to make

the trips. He had been treating me for fibromyalgia for over 13 years. So

I had to say good by to a great doctor. Then my nightmare of finding a good

rheumatologist began. The first two told me I had osteoarthritis, even

though I told them the pain came on almost overnight. (I know that

Osteoarthritis takes years to develop and I was only 43). The next doctor

spent a whole year with me and never could figure out what was wrong with

me. When I went for a 2nd opinion he got furious and said any doctor could

just pick a diagnosis out of the air. That was when I decided he was a real

jerk and moved on. I should have left him ages ago, but I kept hoping he

could figure it out. I ended up with the doctor who gave me the 2nd opinion

and who had diagnosed PA. It still hasn’t been a perfect relationship since

he is almost impossible to get into to see him. He also has nearly killed

me twice with new drugs, but that really wasn’t his fault. We still haven’t

found a drug that I can take that helps me. So far the only thing that has

helped me has been predinsone, but it has so many side effects you end up

almost as miserable just in different ways. I’m currently trying to get off

completely after being on it for 2 years. I also had severe respiratory

distress after a trial of Humira and ended up on 60mg of predinsone and

oxygen. I’ve finally got it down to 10mg and hopefully some of the Cushing’

s symptoms I have been dealing with will leave me soon. Of course the pain

is coming back and I’m trying not to lose control of my pain. So I guess

what I’m trying to say is keep looking for a good doctor. They are out

there, but they aren’t easy to find. I have seen many doctors over the

years for my other health problems.,.cardilogist, Ob/gyns, Internists,

pulmonary specialists, allergists, and pain management doctors. I have to

admit that I think rheumatologists are the most arrogant of the bunch and

the most stubborn to change their opinions on anything. I think most of

them refuse to give out pain medications and feel like you should just

“deal” with the pain, rather than ever have a problem with addiction.

For me going into pain management saved my life. By the time I was

correctly diagnosed so much damage had been done to my joints that I’m in

chronic pain almost every hour of every day. My jaw is almost completely

destroyed on the right side and Imp facing complete jaw replacement in the

future. I’m holding off as long as possible since it’s such an uncertain

surgery. I have damage in many other joints but I won’t go into it all now.

Unfortunately, you still need to find a good rheumatologist and if the pain

were really severe I would look into pain management. Sometimes even with

the correct medication you still might need some advice or help from a good

pain doctor. I really feel l like mine saved my life.

I wish I could give you some great advice, but the main thing is to not give

up. You shouldn’t have to “settle” for a doctor and it’s not worth it in

the long run when you do. Feel free to write me anytime. At least I can

listen and offer you support. Take care and keep in touch. Let me know how

it all works out and if you do find a good doctor. Take care and remember

you aren’t alone. Love, Fran

[ ] Re: new here