Re: Deformities

January 7, 2003

In a message dated 1/6/03 2:50:35 AM Eastern Standard Time, kronahp@...

writes:

> Problem is too many people were getting moved up to the more powerful drugs

> too late and experienced loss of functionality as a result.

To all board memebers:

I would like to use the above comment as a learning tool for myself. I agree

in the " old " way of treatment to start out slow, while keeping up with the

progress of the disease (through labs and X-rays) and moving onto stronger

drugs later when needed. I am curious as to what has worked for everyone on

this board. I know several people in my life that I see often who have PA

and RA. I can honestly say that the 2 that started with strong drugs have

more deformities today than those that started with less severe drugs. This

could very well be because the other 2 had a more aggressive form of

arthritis, but I have always found this interesting. (they have all had it

since their 20's and all are pushing 40)

So, here's my question. How long did everyone here have PA before you

started taking harsh meds, and did the drugs completely stop the deformity?

I ask the same question of those who are not taking harsh meds... where do

you stand as far as deformity goes, and how long have you had arthritis?

I just think it would be very interesting to see these numbers. I can't turn

back time, but if several people on here started out on MTX or other harsher

drugs and after 10-15 years still have no deformity due to the drugs, I might

feel completely different about this. I just haven't met anyone like that

yet... but I might not know the right people.

Thanks!

January 8, 2003

,

I also agree with starting slow.

My first treatment for PA was Voltaren, followed by Methotrexate and Lodine.

Now I am on Cyclosporine, Lodine, and Decadron. I can do all normal activities,

though slightly slower due more to age (49) than PA. I consider myself

fortunate due to not having an extreme form of this disease. This analogy best

describes how the disease effects me; without the above medication and a lot of

exercise, I am the tin man (Wizard of Oz) without oil.

I hope this helps.

Joe

January 8, 2003

>

> I can honestly say that the 2 that started with strong drugs

> have more deformities today than those that started with less

> severe drugs.

Perhaps those two were started on stronger drugs earlier, BECAUSE

they had more severe arthritis.

-- Ron

January 8, 2003

Hi All, I had some Psoriasis on my scalp for about 3 months before

beginning to notice the arthritis, then it flared up really bad all

of sudden. I didn't associate the P with the arthritis until I was

questioned by a Podiatrist who thought I had PA and he referred me to

the Rheumy because of arthritis showing up in my feet. Then the

Rheumy diagnosed me and put me on Prednisone 60mg x 2 weeks and

decreasing to 40mg x 2 weeks, then 20mg x 2 weeks. By the end of the

intial 2 week dose he added Methotrexate because the P had covered me

head to toe so bad plus the arthritis was so bad by that point. He

said he had never seen PA do so much damage so quickly. I began to

show deformities in my toes and fingers immediately. The PA

continues to progress now but very slowly. I have shown some joint

space narrowing in my ankles recently and have trouble walking at

times due to the pain in ankles,hips, and knees. My feet bother me

the most for now. I began Vioxx later with the MTX and Enbrel was

added to the mix about a year later. Now my meds are MTX, Enbrel,

Bextra, and folic acid for the PA. I also had to start Prinivil for

BP since taking all those meds. My BP increased and I had ankle

swelling on Vioxx. Hope this helps. Cassie

January 8, 2003

- I've had P for about 10 years, though small stuff in comparison to

many others, on my elbows and legs. PA started out about 5 years ago with one

joint, left thumb. I was immediately diagnosed with PA by a very savvy

rheumatologist. She hit me with prednisone first to knock out the pain. Then

Feldene, Naprosyn and one other I can't recall; all causing stomach problems.

This is when my right hand started becoming deformed and intense throbbing and

heat. When I finally got to the mtx and Celebrex, the deformities and

inflammation stopped immediately progressing and nothing has happened since. For

approximately 6 months I suffered the stiffness; not being able to get out of

the car, walk up stairs, etc. But most of all, the fatigue which has almost

destroyed my marriage. Now I take Enbrel too.

Yesterday I went to a hand surgeon because of something called Dupuytren's

Contraction (not associated with arthritis) which is pulling my ring finger down

and he did xrays which showed NO destruction of the joints in that hand that

looks so deformed. However, I do have Heberden nodes in the joints of the

fingers which are more associated with osteoarthritis.

I believe in going for the most powerful drugs available as soon as allowed. I

believe if I had been given the mtx, Celebrex and Enbrel immediately I would not

have had to go through the 6 months of intense pain I suffered and had to play

the prednisone game. I believe I would still have my job of 12 years. Although

the fatigue has not stopped, it has become at least a little more manageable and

I am still married, although I'd better find a new job pretty soon or we will

kill one another since he is laid off too.

The biggest problem right now is knowing if I don't find a job with insurance,

I am in trouble because of the high cost of drugs.

J

Re: [ ] Deformities