Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications "rare" Remicade Info

Hello fellow ASKickers,

I have been away for awhile.

I will be starting Remicade (Infliximab) tomorrow. I’m kind of nervous (and truth be known a bit excited also). I already have two hip replacements and, gee I’m not getting any better on Celebrex and all the other standard meds. The drug has been approved in Canada for RA and Crohn's disease and is expected to be approved for AS this winter. I get to use it cause I have Crohn’s, oh joy oh bliss J

Aside from the standard Remicade info a friend lent me a couple of excellent CD’s on Remicade. Aside from the risk of TB, infections and other well know possible side effects I also learned that 25% of patients that stop taking Remicade for more than a year can develop antibodies to the drug thereby rendering it ineffective.

If you are considering this drug and find the available info is not enough, let me know and I will try a get you a copy of the CD’s.

Anyway, I will let you know how it goes.

Cheers and keep kicking,

Chris,

Montreal

thanks so much fo the info, my dr is tryig to get me started on this med, but he has not given me any nfo on it at all.
Thanks again for the update, I will be certain to review this when I chat with him next. Hey, could ya post this in the general section, I think this is important to all who may start this drug!
Also this should maybe inluded in the section that is new, what to ask you dr. This seems to be a most important question to ask if you are discussing this medecine at all for treatment.
Thanks again!
Shu

>> " I also learned that 25% of patients that stop taking Remicade for more than a year can develop antibodies to the drug thereby rendering it ineffective."

Wow! thats weird .. I have to wonder if similar things happen to other drugs too.

I used to be able to tolerate the NSAID's Voltaren and feldene just fine. Then my doctor gives me a sample of Mobic followed by scripts for celebrex. And ever since then I have been sensitive to NSAID's in general... I get dry mouth / eyes and a loss of appetite. Perhaps all those drugs screwed up my liver? Or maybe an allergy? i dont know..

These days even a breath mint can send my head into a deep hazy "brain fog". Makes me dog tired too. Have the same problems with alcohol and caffeine too, which is why I reckon my liver must be stuffed.

all the best,
z

"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy

Which general section?

Z,

I have a lot of difficulties with gluten (farewell pizza and beer) and artificial sweeteners (aspertain sp?) . In addition I went through a number of NSAID's the last one was Celebrex with which I had an ok experience but felt very light headed while taking it. All the other NSAID’s messed my stomach up fairly badly. With the Remicade I don’t need anything else.

So I did my first Remicade treatment. WOW the stuff actually works although it was kind of scary getting the infusion. I had the infusion in the hospital so that if I had a reaction they could treat it right away. (The nurse told me that they can treat you for alergic reaction before you get your treatment if you have this problem) They checked my BP and temperature every half an hour to see if I was having a reaction.

During my treatment I chatted with a guy who has been on the stuff for two and a half years and he says it has been great. He also mentioned that it does not work as well as it did when he first started taking it but it was still much better than when he was on his other meds. I also noticed that he coughed a lot…

My experience was excellent. About halfway through the treatment it felt like my temperature was dropping, kind of like an air-conditioner turned on in my head. What a relief. Perhaps it was just all that hospital temperature solution running through my veins but it was really nice cause I have had a low-grade fever for years.

Anyway I am off of ALL my med's except for Remicade and I have not felt this good in many years (10 or more). My stomach (Crohn's) feels great and I kid you not I have almost no joint pain at all.

Overall I have been super active, riding my bike, doing the laundry (still no fun but at least it does not hurt). The first week I had TONS more energy then normal now it has leveled out to LOTS more energy although I have been sleeping a lot.

I swear that I can feel my body building muscles and stuff. It reminds me of when I was in high school and started up with the track team. Lots of energy and you sleep really well because you are actually physically tired from exercising.

For me it has been great and it seems to go with what my Doctor told me.

My Doctors explanation :

If you are REALLY sick (ie. lots of infection(s) or have TB or lung infections/disease) you should NOT take Remicade without other treatment because it WILL KILL you. On the otherhand in otherwise healthy people it has been found to be VERY effective treatment. He did chest XRays and a TB test on me which both came out negative before I started the treatment

mian support discussion group, it is the first boar on the home page, the biggest one. I think you have very important info to share :)

Thanks again!
Shu

Chris,

Thanks for the information, it's really worth checking into. I'll be talking to my rheumy about this on my next visit.

Fred

I'm really only 18 years old. I have 35 years experience at being 18 years old.

Sir Plz tell me info about this drug
My new Doctor has advised me this drug but it is too costly and so many sideeffects does single injection can get rid of this AS problem. I have AS last 7 yrs currently 23 yrs of age and ? crohns, I have pain in neck,upper back lowwer back ,tenderness at many point with lot of pain sholders,si joint ,chest pain,back of knee ,3 episodes of uveitis this year and unknown diarrohea for last 3 yrs ,ear pain and sometimes vertigos and high BP 95/140. Plz provide info about this drug
Thanks

(User requested name deletion.)

Hi Pratyoosh,

You can look up the drug using the internet by going to www.google.com then typing in "Remicade" and choosing the search button.

I am not a doctor ; )

The drug has worked well for me but if you have infections it can be very dangerous. So far I have not had any side effects with the exception of getting very tired for two days following my infusions. I just had my second infusion and it seems to be working very well.

It sounds like you have many classic symptoms of AS which can including uveitis, intestinal problems, and pain in the back and large joints of the body. I don't think AS affects blood pressure though.

I would highly recommend carefully researching your options and perhaps seeking a second opinion and/or getting a genetic test for a gene that can be associated with AS. In addition you should make sure you keep an eye on those eyes!

If you are interested I have two CD's on Remicaid that I can lend to you or if you have access to an FTP program and have a high bandwidth connection we can transfer it that way.

My AS started when I was about 12 but was not diagnosed until my 30's. From my understanding Remicade is the only drug available on the market now that can prevent some of the longer term damage caused by AS although some similar drugs are now in the testing phase.

While I would not hesitate to recommend Remicade to someone with your symptoms, it is important that you understand that while it has had excellent results for a lot of individuals it is also a VERY POWERFULL DRUG that can kill you in certain situations. (If you have TB or latent TB, chest infections or other infections they must be taken care of BEFORE starting Remicade).

As far as cost, your right it is very very expensive, I would not be able to afford it myself if I did not live in Canada. The CD's that I have include a special section for Doctors on funding Remicade treatment (it was designed for US Doctors) and talks about how Doctors can work within the limitations of US medical insurance policies / Medicaid/care in order to get coverage for this expensive drug. I am not sure what you would do in other countries, you should ask your Doctor for assistance, he/she may have some good ideas for getting you financial assitance.

Best of luck, keep in touch,

Chris