Remicade

[fraby]

My best friend just found out that her doctor is putting her on Remicade starting next week. I've read a few posts on the forums that talk about Remicade a little bit, but I'd like to hear from some people that have actually been on Remicade and what their experience has been with it. I just want to find out as much as I can about it, either good or bad...

Thanks

 

[kiny]

The good is that it's very effective against crohn, the bad is that it has potentially deadly side effects in a very small percentage of the people.

Reason why some have died from it is because it blocks TNF-alpha, and TNF-alpha are the body's best response against cancers. The cancers people can potentially get on remicade, especially together with other immune modulators, can't be cured at this time, since they are very fast spreading cancers and in almost all cases the person dies.

TNF blockers can also cause TNF alpha polymorphism, which means it changes how TNF alpha receptors do signaling into an incorrect form, which has lead to cancers related to the immune system in some.

 

[fraby]

Is this a drug that if it's working she'll stay on it forever?

 

[tots]

Prob until she hits rejection. But, if it works it really helps. ( i didnt mean that to sound dumb- I am tired!!)

The infusions themselves are not as scary as I thought they would be- I had so much anxiety my bp was 153/103. Not so bad the next two times!

I have had my first three infusions and I feel somewhat better but, not great yet. My Dr wants me to wait another 3 to 6 months to change or add any new meds.

Good luck to her !

lauren

 

[changeiscertain]

Hi Fraby, I have had 2 Remicade infusions but nothing has changed so far. The nurses in the infusion center have told me that it usually starts working by the 3rd or 4th infusion and that they've seen it work wonders for their other Crohnies. Good luck to you and your friend!

 

[ReneeC]

I'm currently on Remicade and have to say that for a while I was feeling great.

I started out on a low dosage (3 vials, not sure how it's measured elsewhere) and felt good but a few months after the first initial doses I had a really bad flare up and ended up back where I started. After the flare up was treated, they put me on the maximum dosage for my body weight.

It was working well but now I seem to have a very short "shelf life" in between infusions in which I actually feel good.

It does have some side affects, some of which are ironic. I have joint and skin problems now. They call it drug induced lupus (I may be incorrect here) and psoriasis. I also get infections extremely easily. I've had facial cellulitis twice now do the lowered immunity. That is not fun.

Keep in mind that Remicade doesn't treat all the symptoms of Crohn's but it should (fingers crossed) allow your friend to feel some relief from a majority of them.

For me, right now, the benefits from Remicade outweigh the side effects. I don't know how much time I have left on it but I can honestly say that when I was feeling good after an infusion, I was feeling GOOD. Better than I had in years. As Tots mentioned, alot of people will build a tolerance or their body will start rejecting in. Some people are on it for years, others just months or less. Different for everyone.

When they say to be careful if you are sick or have an infection, they mean it. Make sure your friend pays attention if she has an infections (abscesses included) or fevers.

As for the actual infusion, it was way less scary then I was prepping myself for. I wasn't sure what to expect but honestly it wasn't bad at all. I don't take any premeds at the moment other than tylenol. I usually sleep or watch tv while I'm there. I feel headachy and a little "wonky" the day of but a day or two later I start to feel it working. It's a good feeling.

Hopefully this helps a bit

 

[shamrock15]

For me, remicade has taken care of about 80 percent of my crohn's while azathioprine has taken care of the rest. I think I may actually be in remission now after 25 years of continuous crohn's. It has been well worth any of the potential side effects, and I have been taking it for about 5 years now. My dosage is 7 vials every 6 weeks, I weigh about 170 pounds. Good luck with yours!