Seeking opinions on Remicade and Reactions

[Crohnos01]

Hi everyone,

I am brand new here as I just found this forum. Thank you to the Admins that have provided this resource.

I am a long time Crohns patient. I was diagnosed when I was 20 and I am now 51. Along the way I have tried a lot of the meds, and ended up with a bowel resection about 18 years ago. After the resection, I was tried on Imuran (didn't work) 6MP (screwed up my liver), and all the other "typical" treatment meds. As a brand new drug on the market, the docs tried me on a Remicade infusion. They scheduled me for 3 infusions and after two decided I was doing enough better they aborted the 3rd. After some time and another colonoscopy I was announced to me "in remission"... no sweeter words have ever been heard.

Fast forward to now.. I just had another colonoscopy last week. 3 years ago the peek and see showed the Crohns was back, but not bad enough to worry about. Now it is; the doc couldn't even get the scope through the narrowed section of bowel. My GI doc wants me to choose between Remicade and Humira for a treatment. He informed me that in the last 18 years they have discovered that starting and stopping the Remicade can result in bad allergic reactions which I know you are all familiar with. The Humira strikes me as having just as bad of side effects, maybe worse, and being the "new drug" on the block like Remicade was back in the day, which leaves me wondering "what don't they know about Humira like they didn't know about the reactions with Remicade?"

I am really looking for input on which way to go between the two treatments. Both scare the bejezus out of me. In what google searching I have done, I saw a number of 17% on one site for the number of patients who stopped Remicade and then restarted that had allergic reactions. Does that sound right?

I would sure welcome some thoughts, ideas, and recommendations....

Thanks,

Dwight

 

[Jennifer]

Hi and welcome to the forum!

Sorry I don't know much about Remicade but there is a subforum on it and I'll move your thread there. From what I've heard is that its not impossible to go back on Remicade after stopping it but I don't know any exact numbers.

I take Humira now and so far have noticed improvement. None of the medications out there scare me since I pretty much grew up with medication. If it makes me better then I'm all for it!

I've heard great things about both meds and if I were in your shoes I might try the Remicade first since it did work in the past and then go from there but this is obviously your decision to make.

 

[karj]

Yes i have been told that you can't go back on remicade, the figure I read somewhere was after 10 weeks without an infusion? I read it is because your immune system will have built up a resistant to it. Why did they decide to stop the remicade infusions the first time around?

 

[Crohnos01]

Back when I got the Remicade the first time, it was a pretty new drug, and the conventional wisdom of the time was to only give a few infusions and then stop and re-evaluate. After the initial dose, I was in remission so no more was prescribed.

Now my worries are; if I start back on Remicade, what is the likelyhood of having a reaction? It seems like the reactions are pretty scary. Or is it not a matter of if I will have a reaction, but when? As far as Humira, the listed side effects are also pretty scary and now I worry about that they didn't know about starting and stopping Remicade when I took it before... What are they going to not know about Humira?

"Really sorry you grew a tail there buddy, but between when you started Humira and now, we figured out that when you take Humira simultaneously or within 24 hours of taking a B-12 injection, this can happen"

 

[jama.childress]

I have used both Remicade and Humira. I am a nurse and have no problem with injections. But, Humira hurt and I got to where I would cry and tons of anxiety before the injections. Remicade has been my friend. You have to give at least 4 treatments to get maxium results. I had a fistula and had to have a seton. Remicade has kept me from getting another one.

 

[Crohnos01]

Yuck... sorry that you had so much trouble with the Humira... Did you allow the medication to warm for 20 or 30 minutes before injection? Looking around it seems like there have been a number of folks who had reported a lot of pain from the Humira injections, but maybe they hadn't allowed the medication to warm sufficiently before they injected it.... Oh wait... sorry, did I pick up that you are a nurse? If so obviously you knew about that already.

Bummer deal about the pain. Do you also do the B-12 injections? I have a hard time with those myself even though they don't hurt that much. I freaked myself out one time by apparently hitting a nerve in my thigh when I did the injection which caused my whole thigh muscle to jump and scared me. Ever since then, I have a hard time with self injections.

 

[jama.childress]

I get B-12 injections monthly. There is a B-12 nasal spray also. I give myself injections in the hip usually. I am a chicken when it comes to my thighs.

 

[karj]

Crohnos01 there is person in the remicade club who is restarting after 2 years so maybe we were wrong about restarting!!

 

[Crohnos01]

Thanks for that info! I have just about decided to go ahead and try the remicade again, just because it worked so well before. Plus, the Humira has all the same possible side effects as the remicade, and a few more unique to Humira...

Keep your fingers crossed for me.