PA because of a medication?

[kimie]

Hi gang,

After catching up on the posts, I'd thought I'd ask a question that has been bothering me for a bit... :confused:

I have had P for almost 25 years now, and have been recently been "officially" dx'd with PA. For the past three years I've been on the biologic circut: Enbrel, Humria and now Remicade. I did not have any PA issues other than a very mild finger ache here and there, and only briefly in those 25 years. After reading of the posts of bad PA reactions after coming off of a certain treatment, I'm wondering if PA can rear it's ugly head when starting a new treatment? :confused:

The Embrel worked for a year for the P, then stopped. Humria didn't work at all for the P. Remicade worked for maybe 3 months for the P, but it is while I am on this medication that my PA almost disabled me! :eek: I always seem to flair a week or two before I'm due for my next infusion, and this includes all my joints at one time or another (and often at the same time!) to the point where my roomate has to help me dress! This is a far cry from a "finger ache".... :(

I am now taking MTX, and my derm has been steadly decreasing the time between infusions: my next one is in four weeks (from the original 8 weeks). I have a app't. with the rheumy next week for possible MTX increase...

Never had problems with PA until I started Remicade. Coincidence (sp?) or is a sudden, total flair of PA a common way to develop it like I had? :confused:

Comments or answers?

Thanks tons!
:D

[JesseLou]

What you describe makes me wonder if remicade could simulate PA - ie: could it be that when it's wearing off, the part of your immune system that causes your psoriasis goes on a rampage and attacks all your joints.

Somewhere I have heard about meds that can cause the disease they are usually used to control - but not permanently. It wasn't a PA med, but something else. Anyway -

Has anyone suggested that you wean off the remicade and just use MTX to see if the remicade is actually the problem? It's worth a try I think.

[Momelie]

I'm also on Remicade, and for what its worth, I ALWAYS feel about 90 years old the week before my infusion. Its like my body knows exactly when it wears off.

I don't have much of a problem with P, so I don't know about Remicade causing the PA, but I do have the same pre-infusion symptoms.

[LoriASoCal]

My PA was bad before the biologics.

I flare right before my infusions. I've gone from every 8 weeks to 6 weeks to my current schedule of 5 weeks. It starts wearing off at about 4 weeks give or take a few days and always has for me. The good news is that now my down time is a week to 10 days versus 4 weeks when I was on the 8 week schedule. My life is much better because of remicade. My P is almost non-existent now and my PA more manageable.

[beachbound]

I could not believe what I was reading! I'm going through this right now. I've had psoriasis about 16 years. You name it...done it....the obvious potions and lotions & steroids, University of PA tar & bath & light treatments, x-trak laser ( a fortune), MTX (hate it!), and last year year started all the biologics. Amevive first, then Raptiva, then Enbrel....and spent a fortune with the co-pays. Nothing worked....but when I came off the Enbrel I immediately started with pain between the lowest joint of both thumbs to the one near wrist and also left elbow which had a huge hard lump on it...not on the normal outer pointy part but the other side. OK....went to ortho surgeon who did MRI and x-rays and said in 20 years had never seen it there before. Said the thumbs were the classic joint for osteoarthritis.....but since I had P could be psoriatic. End of story with him....no help, advice, nothing. That was a year and a half ago and I figured maybe I hadn't felt it earlier since I had been on Enbrel. OK....this past February (20th) I started Remicade. For the first time ....I'm not feeling guilty about all the $$ I have spent trying something for P.....my insurance covers it 100% only if done in a hosptial setting. Was turned down for P.....but would cover it if for rheumatoid or psoriatic arthritis (ridiculous!) so we changed the script. I was thrilled especially since my husband is now retired. I got the first infusion, the next one 2 weeks later and I started to see a change, and got the 3rd 4 weeks later. During that time my hands and feet started to clear and my scalp and my elbows and could not believe my lower legs were even responding. (Even the sun makes me much worse...nothing has ever helped). I ran out and bought 5 pairs of capri's and thought I was in for my best summer ever. Well the next infusion wasn't for another 8 weeks....(may 29th) and that was it. Totally lost the momentum and it all came back. Mind you I never had any problems before, during or after an infusion. My derm decided from then on rather than every 8 weeks to do every 6 weeks and also bump me from 5 whatever it is in dosage, to 7. Prior to that starting, on July 1st, I woke up and could not lift my arms or extend them at all....could not even lift them to brush my hair or teeth unless I kept my elbows tight against my body, and bent my head as I could move lower half of arms but nothing that involved shoulders. Scared the hell out of me but I had made 72 deviled eggs the night before and thought maybe it was from being at sink with elbows bent, etc. but it continued the next day too. Then got a little better but the rest of that week had stiff necks and little pains elsewhere. July 10th I got #5 infusion with the increased dosage. Had been 6 weeks since my last one. Everything magically went away and I thought thank God! 2 weeks later on 26th I saw the derm who said if no improvement in P, he could tinker some more and do every 4 weeks if needed. I told him about not being able to raise or extend my arms and he said he thought it was muscular and could be viral and ordered 6 different blood tests. I went the same day to get them done. The very next day after seeing him....whamo.....I thought I was going crazy. I had severe pain in my inner ankle joints....then maybe that would leave and then severe pain near knees but lower than knee caps and on outer sides.....then my wrists, then my toes...could be 1, 3 or all, then my shoulders again....and I mean this is jumping from one place to another like something traveling thru my body and setteling in and not liking it there and moving to another joint area. One hour it was my middle finger on left hand which I had to tape to the next one as it was sooooooooo painful. Next day could be pinky and one next to it on opposite hand. Or could be all fingers, then ankles again....and then couldn't get out of bed myself or walk right. I honestly thought I was going crazy. I called derms office after a few days of this, bawling at midnight....what the hell is wrong with me?? What happened with the blood work. I thought I had MS, or muscular dystrophy...or something. His nurse called next day and said blood work ok....get to family doc pronto as it wasn't what he thought it was. Now I'm really scared. Went to family doc who is not familiar with remicade at all. He felt it could be rheumatoid or psoriatic arthritis...and I'm thinking but that's what remicade is for! Meantime hubby is convinced it's the infusions and wants me to stop and I just didn't want to believe that or give up on them yet especially since it doesn't cost me anything. Family doc puts me on prednisone, 10 mg daily and calls to get me an appointment with rheumatologist who I will be seeing Sept 14th and who wants me to start weaning down prednisone. So from Aug 2nd to 12th I was on 10 mg. Following week I alternated each day of 10 mg and 5 mg. This past week I've been just on 5 mg. and starting tomorrow I alternate daily 5 mg and 2.5 for a week and then Sept 3rd go to a week of just 2.5 thru the 10th and then nothing from 11th to 14th when I see him. Guess he wants to see me at my worst and I am dreading the thought of this weaning and being back where I was especially since my 40th anniversary is sept 9th...I'm 58. I also have to add nobody told me NOT to get the next scheduled infusion...which I did last tuesday and for the first time had an itching reaction. If things go the way they did after the previous infusion, the magic for shoulder pain only lasted 2 weeks and that's when I started all joints so I'm guessing I have 2 weeks before I start all over again....actually 1 week and at that point will be down to the 2.5 prednisone. The prednisone did help...but no so much with the thumb stuff so that may very well be osteoarthritis there. The only thing I can feel since infusion is occasional aching behind my knees above the crease. Not pain...but just aching.

Last week I started reading all the posts about remicade and had never read anything like what I was having. I wanted to post what happened but thought people would think I was nuts how it jumped from place to place in short amounts of time. I just want answers. I do see the derm tuesday....but neither he nor the gal who gives me infusions has ever heard of anything like this with remicade. Thank you sooooooooooo much for posting. I now know I'm not nuts and I am printing out your message and taking it to him and the rheumy and gals at the hospital.
Please let me know how you are doing, and what they come up with....and if this sounds a lot like you please let me know. I'll check in!
Sue in Maryland

[LoriASoCal]

Hi Sue and Kimie

I don't know if the biologics can cause PA, though it's been rumored that raptiva can. But I do know that PA can jump around like crazy exactly as you described.

I've also heard of people having mini-flares with intitial infusion- I haven't experienced this myself and always get great relief a day or two after my infusion.

I think what you are suggesting is possible given the large numbers of people who have had the same complaint when coming off raptiva. When you look at the dosing schedule- complaints seem to be when the drug wears off.

My pain isn't any worse than it was before I started remicade but then again I had full blown PA before starting any biologics. Perhaps there is something about the dosing that brings on the PA that is only mild or dormant?

One thing for sure-we will find out more especially when we communicate our concerns to the medical community.

For me biologics are a godsend but it would be horrible to think that my miracle could actually cause someone to get the same disease that I am getting relief from.

I wish you the best of luck.

[kimie]

Beachbound - you described exactly what I was/am going through as far as the joint pain goes. As with you, my initial flair hopped around from joint to joint as you described! Oh! and the description of just trying to brush the teeth - I was doing the same thing! :eek: My pains usually lasted about half a day 'till the little pain gnome moved on to a different joint(s)... I have been living on the Motrin during flare time. Sue, you and I are mirroring each other here!

Since starting the MTX, the flairs still come, but the last one seemed to be confined to my ankles/feet and wrist's/hands now. Even those were the only four areas affected, I still was amazed on how much we take for granted a little thing like walking or moving a computer mouse around. :) And it started a day or two before I took off to Vegas for the conference...

Momelie & LoriASoCal - my biologic road began because of 75% coverage of plaque & puscular P at that time. And it's been a very nice road for the past three years; I don't regret my choice or the clearance of my P (in fact, one of the highlights was seeing my shins for the first time in 20 years and discovering freckles!) and I would do it again. But now the whole P gamult is coming back in spades! :( The three weeks of "inbetween time" is heaven...
But I am also noticing that with the PA flares, my plaques also flaring - and after this latest one, my leg plaques has puscular P developing (derm confirmed) in them. Fun. Me joints are aching, and my P is getting worse. :(

So, seeing how I did not have PA to the extent of even noticing it (but explains a few aches & pains I attrubited to "gettin' old") when starting the biologics, I'm just wondering if my body is redoubling it's efforts to set up camp in different areas.... I just don't know.

"For me biologics are a godsend but it would be horrible to think that my miracle could actually cause someone to get the same disease that I am getting relief from." This is what I want to find out! Like I mentioned, My PA was non-existant until I started Remicade - now I'm almost scared to stop it because it does give me relief for the PA flairs - which it might of caused...? Or am I just that 10%-ter psoriasis person that developes PA? :confused:

[LoriASoCal]

Well, actually it's more like 30% of people with P will get PA.. so the odds are much higher than previously thought. Also, while many people can get PA with only mild P or no P- it is still slightly more likely that a person with severe P will get it.

So it could just be bad timing? Or is that good timing? Good timing that you are now on a drug that works for PA? The only thing that leaves me curious are both of your statements coupled with the numerous histories of people on raptiva that have come off and developed severe P or PA.

I really hope we can find the answers.

[beachbound]

Well this week I will be down to 2.5 mg of Prednisone (groan) and then none till I see the Rheumy for the first time on the 15th. I am really scared of going through what I went through before. I printed out the above postings including my own, and took them to my derm last week. He was very surprised and said to let the rheumy determine if, and when next infusion. I'm anxious to find out what they come up with when I see the rheumy.

By the way, we were at a dinner tonight and we met an older couple whose niece also has psoriasis. I was telling her what happened to me....and she said her niece now has joint pain since being on Remicade! Weird!
I'll keep ya posted. Kim....please keep in touch as to how you're doing and what your docs do about it.
Sue

[kimie]

By the way, we were at a dinner tonight and we met an older couple whose niece also has psoriasis. I was telling her what happened to me....and she said her niece now has joint pain since being on Remicade! Weird!
I'll keep ya posted. Kim....please keep in touch as to how you're doing and what your docs do about it.
Sue

Just got back from my rheumy app't. He said he's never heard of anyone developing worsing (and for some, like me, a sudden onset) PA when starting Remicade. He thinks it's a coincidence that PA has showed up at the same time I started Remicade.

I also asked what my future holds if the Remicade no longer works for me; he said Humeria. I said "done that". He said Embrel. I said "been there". I think I stunned him. He blinked, got quiet and said "I'm not giving up on the Remicade" and I said I wasn't either, but "if this goes the same way the other biologic's I used have - stopped working after a year or so - I'm just kinda looking over the fence for other options." He nodded and said he was attending a conference this week and will ask around about: 1) Remicade triggering PA and 2) what's coming down the pipe for PA treatments. :rolleyes: I know what's coming from this web site - kinda suprised he didn't. Maybe this is where he gets his info - a yearly (?) conference...

He upped my MTX dosage; so between that, infusions every four weeks and the max dosage of it, here's hoping the PA will hide again for me... :D

[JesseLou]

Kim - I'm curious about whether you have ever taken MTX by itself? If not, that or a combination of MTX and something like sulfasalazine is also possible.

Some people here have talked about going back to a biologic after it failed and they went on something else until it failed. Apparently, just because it failed doesn't mean it won't work again.

[kimie]

Kim - I'm curious about whether you have ever taken MTX by itself? If not, that or a combination of MTX and something like sulfasalazine is also possible.

Some people here have talked about going back to a biologic after it failed and they went on something else until it failed. Apparently, just because it failed doesn't mean it won't work again.

Naw, never MTX by itself. Always biologics by themselves, which I may have shot myself in the foot with...

Maybe from the begining I should of taken the MTX with the biologics, but I fought the MTX due to jaundice when I was young. Even though I was a bit informed about MTX, I considered it the "end of the line" drug for me. Fast forward one-two years and a little more informed... :rolleyes:

I asked my derm about going back to one bio or another awhile back, but he seems to think once one has tried that course, the body has prepared itself (read: antibodies?) for that drug and will not be as effective.

I know there's other combo's out there, and I'll print this thread to so my derm and see what he says. I am not only trying to keep my PA in check, but I've got a pretty good skin flare going, too (Flares: not just for PA! Mine go hand in hand with the P...). Back up to about 25% from maybe 1-2% a few weeks ago...

[Case]

I can't tell you how much reading these posts have helped. On Remicade too and have suffered same type of traveling joint pain. I thought I was crazy. However, I don't want to give up on Remicade just yet since it has really helped the P. See derm on 10/4 and will seek her opinion and knowledge regarding onset of joint pain when starting Remicade.

Thanks to all for sharing! It helps so much!

Claire

[1WeekAtATime]

I really do not mean to scare you here, but I think there's something that your doctor(s) have been neglecting to tell you. Remicade, more than any other TNF/Biologic, cannot be started and stopped. The reasoning is that in between starting and stopping, your immune system builds defenses against the medicine because, after all, it is supressing the immune system's functioning, like a virus.

Maybe this effect is carrying over into the other drugs being started and stopped- they all share this trait, to varying degrees in trial settings. It sounds like your immune system is taking over to the degree that nothing is working for you.

This is a subject that really frustrates me right now. I took Enbrel, and had to stop because of a very bad injection site reaction. Now, I'm mulling over taking Humira, Remicade, or Methotrexate because (somehow...) my PA came out of nearly nowhere and intensified to the point of me having to park in handicapped spots, post-Enbrel. The doctors have said very little about the effects of me starting and stopping any of those medicines in case I change my mind about them, until I asked them. That's when I learned what I have now told you. Remicade is the worst, and the others are not of the same degree, but still can be attacked by your smarter immune system when you try to go back on, or maybe even onto something similar but different.

I wish you the best of luck. Stay with your doc's recommendations, whatever they are now, and make sure you find out what he/she REALLY thinks you should do, given the new circumstances.

[RichJ]

hi 1weekatatime,
welcome to the p family. you will meet some of the wounderful people on here and will find alot of great info. welcome and nice to meet you.

have a good weekend all

richard

[MJBose]

I'm not sure if this is the right place for this post because the meds I was on were not taken for P. I was on Interferon and Riboviron to treat Hepatitis C (which by the way...I beat it!) Before treatment I only had plaque P in a few spots over my body since I was young. During treatment I developed every kind of P there is. I had pustular on the tops and bottoms of my hands and feet. I had plaque spots all over my legs and torso. I had spots on my face and in my ears! This was all a side affect of the Interferon and Riboviron combo. Heres the amazing part. After my yearlong treatment was over...my entire body cleared completely of all my Psoriasis for about 6 months! I thought I cured my P too! But then, slowly but surely, it returned with a vengeance. I think I am now beginning to develop PA. My toenails and fingernails are embarrassingly deformed. My big toe is red and swollen and feels like there is a red hot poker stabbing it and my thumb and middle finger are showing signs. Time to see a rheumatologist now I guess.
I will not forget that 6 months of freedom tough!

[RichJ]

hi mjbose,
sorry i can't help much but welcome to the p family. you will met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

try and have a good night all

richard