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Zwijndrecht
03-03-2002, 07:00 PM
Would appreciate any ideas anyone can give me on my current situation.
Briefly, my history:
-midteens, had PA, did not know what it was
-midtwenties, Psoriasis broke out and continued since
-late twenties; PA and psoriasis picture came together and a firm diagnosis arose
-late twenties to about 40 - every kind of NSAID available was used, some worked for a few years, some for a few months, some not at all
-late 30's - two whole body steroid shots helped the pain, not the skin for 3 months, then 1 month, then not.
-now I am in early 40's and have been through Soriatane (good on skin, not on PA)
MTX - no help; neoral-could not stand it
-2000 to now, today am up to 200 mcg/hr duragesic patch and 30 mg oxycodone a day with Remicade. Skin is great. Pain is not. Last Remicade treatment took a "painkiller worked" situation to "nothing works at all" situation, constant all joints pain, can just force myselfout of bed to work. Rheumy is calling on pain doc and increasing remicade over next several months. Not sure I can wait that long but understand it takes time.

Question is: Is there any hope out there for me? Has anyone had a session of Remicade drop the bottom out and increase pain significantly?

rosee_posey
03-05-2002, 05:10 AM
Hello Zwijndrecht,

Wow. That's quite a story you got there...is there hope? YES!!!!!!

"Has anyone had a session of Remicade drop the bottom out and increase the pain significantly?"

When they were starting me on Remicade, they had me stay on huge doses of MTX and steadily increased my Remicade dose. During the period where they increased my dose, I did experience bouts of pain. I am now up to 6mg/K, with an MTX "chaser" of 2.5 mg a week. (note: Chron's disease patients go all the way up to 10mg/k, so if your dose is more than mine, don't panic.) I am in the process of tapering my MTX, and I notice that as I taper, my achiness/flakiness seems to return just a little bit more...

I know that Rheumys use another medication in place of MTX for patients...ask your Rheumy. OR, if you get desperate, ask your Rheumy if it's safe to start MTX again, even though MTX was "no help" the first time. While I was on 17.5mg/wk of MTX, I still had lesions over 70% of my body, and alot of achiness (and I have pics to prove it) - but they kept me on it for a long time b/c it kept the pustular and erythrodermic P away. Maybe the combination of the two will work better. My Rheumy likes to keep all her Remicade patients on MTX and Remicade cause it SEEMS to help the Remicade work better, and it mitigates a side effect that can be brought on by the Remicade.

Hope this helps, and KEEP THE FAITH!!!

Take Care,
- rose

melissacole
03-20-2002, 07:29 AM
I was diagnosed with both by the time I was 14 (now 27). I am struggling to keep everything under control. I have found only one med that helps the PA completely go away - penicillin. I am not sure that you can take it for any length of time. Unfortunately, I am now allergic to penicillin now (not b/c of PA, but a NP prescribed it for me when I had a virus which caused an allergic reaction). I hope you are doing well.
Cordially, Melissa