Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade (Infliximab)

Hello Jeanna and Glen:

Last August my Rheumie and I decided to step up my treatments. We decided to go with Remicade. I have had AS pain since age 19. I was diagnosed three years ago with AS at age 45. My back is conjoined, but so far it has left my neck alone, and I am upright. BlueCross turned us down 4 times and then agreed to a six month trial. I believe my rhemuie described my disease as reactive arthritis.

I noticed improvement in pain, stiffness and energy level almost immediately. After my third treatment I felt like I had no arthritis at all. My SI joints quit screaming at me for the first time in 20 years. It seemed the only pain I had was from the structural problems, i.e. my conjoined back and screwed up hips. Also, my pan-uveitis calmed down. My allergies disappeared and sinuses throughout my entire head have opened up.

The most amazing thing is my energy level. I actually feel like playing sports again. Before the remicade I had no energy at all, and could fall asleep at any time. I could never make it through a movie witout falling asleep and snoring. I thought I would get fired from my job because my prductivity was slipping.

In January my liver enzymes elevated. I believe this was due to Vioxx and I have described the problem in a post under the Vioxx thread. As a precaution, I went an extra six weeks between Remicade treatments. The SI joints never got all the way back to full-on nasty, but everything else went back to pre-Remicade form. I had a treatment two days ago and I am getting substantial relief. I do not think I will feel as good as after my December treatment,however, having simply lost too much ground during the delay.

My suggestion is to get on Remicade or Enbrel. I hear there is another one coming. Not Amgen's Kinaret, but something now in testing that is 100% human. (No offense to Mickey, but I would prefer to stay within my species.) I know I cannot turn back the clock and have a normal spine. I believe we should all do everthing we can to prevent structural damage.

Finally, before Remicade, no way could I get through the day without my 25 - 50 mg Vioxx. Now, I can manage. I do not want to go back to Vioxx because of liver and stomache issues. I am looking at MOBIC and the new one from the CELEBREX people that does not have the SULFA issues.

Regarding insurance, do not take no for an answer! If repeatedly you are refused, go to your attorney and have him or her send a letter alleging "Bad Faith Failure To Insure". These medicines are effective and we deserve them!!!

Good Luck.

Fred

Thanks for the inrormation Fred. This sure sounds like the way to go. I'm getting little relief from the Sulfasalazine, Vioxx & Vicodin combo. My back was on fire yesterday here at work so I took a Vicodin. About an hour later all I wanted to do was sleep. I had to leave early because I was of no use to anyone. I hate that feeling. Thats why I only like to take the Vicodin at bedtime, then it dosen't matter. But what the heck do I use during the day. Most days, nothing. I hope my Rheumy has good news for me on the 26th. Everyone I've seen here who has been on Remicade has raved about it. Leave it to the big insurance corporations to decide whats best for us!
Again, thanks, and I hope you get continued relief.


Glenn



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What makes the hottentots so hot? What puts the ape in apricot? Whadda they got that I ain't got?....

Hello all - the biweekly CMAJ tipped me off on this one. Tuberculosis, which can reside latent in people after treatment, can be reactivated after treatment with remicade. Although I havent checked yet, it stands to reason that it may be a concern with Enbrel as well. Here's the link from PubMed.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11596589&dopt=Abstract

"RESULTS: There were 70 reported cases of tuberculosis after treatment with infliximab, for a median of 12 weeks. In 48 patients, tuberculosis developed after three or fewer infusions. Forty of the patients had extrapulmonary disease (17 had disseminated disease, 11 lymph node disease, 4 peritoneal disease, 2 pleural disease, and 1 each meningeal, enteric, paravertebral, bone, genital, and bladder disease). The diagnosis was confirmed by a biopsy in 33 patients. Of the 70 reports, 64 were from countries with a low incidence of tuberculosis. The reported frequency of tuberculosis in association with infliximab therapy was much higher than the reported frequency of other opportunistic infections associated with this drug. In addition, the rate of reported cases of tuberculosis among patients treated with infliximab was higher than the available background rates.

CONCLUSIONS: Active tuberculosis may develop soon after the initiation of treatment with infliximab. Before prescribing the drug, physicians should screen patients for latent tuberculosis infection or disease.

If you have recently started (or are about to start) enbrel or remicade it might be worth it to discuss this with your doc. Screening with the Mantoux test for TB is relatively painfree and easy.


Jeanna

Has anybody been taking Remicade for AS? Please let me know your experience with it. Also if you catch a flu, should you stop taking AS drugs since they are mostly immunosuppresents??

Hi my name is Frances and while I love this site I seem to be having problems getting around it - need to spend a little more time on it. In the meantime, I noticed that you don't seem to have any response regarding Remicade. My boyfriend is about to start his infusion next week and while we've done some reading on it I'd love to hear about any effects. The info we have is very technical and difficult to understand. Have you tried it yet and if so how was it.

I'd love to hear from you if you've got the time.

Regards

Frances

my husbands doctor told him never to stop taking any med. without consulting him first. have you started remicade? if so let me know how you are doing because my husband starts it next month. hope your flu is gone and your feeling better................moonray

dear frances
my husband starts remicade next month. i would love any input you would have for me. its a little scary. hope your honey is having a good day. thanks moonray

I just started the Remicade 2 weeks ago. I have another treatment on Saturday. I was a little tired after the treatment but overall everything went well. It still hasn't helped much but my doc said it may take a couple of treatments before it starts helping. I will let you know how the next treatment goes and if there is any relief!

Judi

HI,
How long does it take for each treatment for Remicade?