Switching from Enbrel to Remicade in 2 mths

[lucyjlou]

Hi, as most of you may have ready my previous threads about my Enbrel experience, you know that I had great succcess in the first month. I lost almost all my scaling and my spots became so much flatter. I was actually able to shave my legs for the first time in over a year!

Well, by month 2, I noticed that the red spots were still there, but some had faded almost completely away, the smaller spots. The rest were turning white in the middle, which I was told by everyone was a great sign. The plaques on my feet were so much better and less red and very flat. The ones on my hands practically disappeared. I still had lots of red on my legs, but they were white in the middle.

Well, it has been 3.5 months now and no changes since month 2. Actually the spots on my hands are back, and some on my arms and my feet are horrible. They are dry and craking and miserable. I haven't gotten any new spots, but some old ones have popped back up. I have had a few on my leg that have gotten better, but I am not seeing significant improvement anymore.

I still have 2 mths of shots in my fridge, so will keep it up for that long. Plus, got new insurance at work with a 5k cap on scripts, and all the funding programs out there are only for those without insurance, so couldn't afford it anymore anyhow...

Plus, starting to develp what i think is PA. Went to the derm last week and he agreed, I am going back in 2mths to see about starting remicade and he may refer me to a rheumy then.

My left foot is the worst. I can't walk when I get up in the morning, both my legs and feet are very stiff and hard to move. By mid morning, all is good, but my left foot continues to hurt all day and night, nonstop. It feels like the bones along the outside edge are broken and beaten...i haven't injured myself and from reading, this sounds like classic PA..not sure why the enbrel isn't helping for this either, but hoping that remicade does....

So, I have a few questions for all of you...

1.) has anyone switched from enbrel to remicade for P? What was your success? What about for PA?

2.) Does anyone take Remicade for P and PA? Do you find that it helps for both, or more for one than the other?

3.) Did anyone take Enbrel for P and have it take longer than 5.5 mths to clear up?

I know that some people take Mtx with remicade for better results, but I want to have kids in 2 yrs or so, and don't want to worry about that, so I feel Mtx is not for me. Anyone having success with P and PA on remicade without Mtx?

I know Humira will be approved in a few mths too, but since I can't afford the enbrel script, Humira is not an option now until I get different insurance at some point.

I would appreciate any advice!

thanks for your help!

[Momelie]

Hi there!

I was on Enbrel before I went on Remicade, so I can tell you about my experience - though mine is a little different than yours.

I primarily have PA, my P is very mild and mostly on my scalp, just a patch on each ankle the size of a nickel. PA, however, has pretty much taken over my body. It would be easier to tell you what is NOT affected (jaw, L shoulder and elbow). My PA started in my R hand and went from there. Morning stiffness is, indeed, a hallmark of PA.

I was put on Enbrel by my rheumy, after 6 months of sulfasalazine didn't work. Enbrel seemed to take effect immediately, no more flaky scalp, things were clearing and I was moving a little easier. After 2 months, though, it suddenly quit working, and scalp P was coming back.

I also have a 6K cap on scripts, so that also came into play. I definitely know what you mean about the assistance foundations - I am diabetic as well, so I needed so save some of that cap for other medications, so nobody would even talk to me.

After Enbrel, my rheumy put me on Remicade, and thankfully, this is covered by my major medical, so I only need to have a co-pay, rather than a capped amount.

I've done extremely well with the Remicade, I've been on it for 7 months, now and have seen a complete clearing of what little P I had (even have the hair I lost with scalp P coming back in), and I just got back x-rays that show no further damage to my joints, everything was "stable." Now, mind you, my PA has not "improved", per se, evidently I will never be able to reverse the damage that has already been done to my fingers and hips, but Remicade is keeping it under control and that's the best scenario I can expect for now.

I don't use MTX with the Remicade, due to a not so great liver to begin with, so I don't know if that would make a difference, but I'm doing pretty good without it.

I certainly haven't had any side effects whatsoever, and the infusions themselves are not a problem at all. I take a good book and my MP3 player and just chill out for a while.

I wish you the best with this! Let us know how it goes!

[arlcollins]

I was on enbrel for 6 months and it did nothing for the P, and I didn't have PA at the time. I went on remicade in 8/05 and it seemed to help the PA but after the 3rd treatment I had an allergic reaction and ended up int the ER. I was fine but had another reaction with the next infusion and that was the end of rmeicade for me. If you take it be sure to talk to the DR about reqctions. They are rare but they really do happen. Most people on remicade do well.

[mamaooch]

I hope Remicade works well for you! It is been working well for my PA and pppp.

Best Wishes,
Cindy

[bravo]

Hi all,
My experience with the biologics:
Started with P as my primary concern and now its PA. Had both - P about 80% coverage, and PA affecting a joint or two at a time.
Was on Enbrel for a year - it did nothing for PA, but maybe it was preventing it from getting worse, but it cleared my P in about 4 months.
I then decided to switch to humira in the hope that it might help my PA which was getting worse. I stayed on that for about 4 months - my P stayed at bay but again my PA did'nt impove.
My rheumy decided remicade was the best solution, supported by steroids, I'm on that for almost two moths and while P is still under control, there has been very little improvement with PA. I have a constant cold since before I started Remicade and feel this may be a side effect, as well as headaches and other minor nuisances.
He's now proposing adding Mtx to the mix, something I've been avoiding for a long time, as I'm not overly enthusiastic about the potential side affects.
Anyway best of luck with whichever treatment you try.
Regards

[lucyjlou]

I too am a little nervous about MTX. I am going to try the Remicade and see what happens. Right now the PA that I think that I have developed is not too bad ,the worse 2 weeks seems to have passed. I think it may have been a flare up, it still is aching but not as bad. I think that the Enbrel stopped it from getting worse, but isn't really helping. As long as it doesn't get worse, I could stand it the way it feels, hoping that MTX isn't my only hope at this point. I am worried about side effects and want to have children in a few years....I will keep you guys posted on my progess and what I decide to do!

[lucyjlou]

Okay, I said I was waiting 2 months ,but my P is not improving and I think the enbrel is not working at all anymore .I am starting to get flaky and ichy again and I can't stand it, so I called my derm and my first remicade infusion is scheduled for Feb 12th at 1pm! Wish me luck, I will update everyone on how it goes afterwards!!!