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

Jeanna......This post is horrible news to me.....my drugs don't really work (sulpha, naproxen, pariet) and after researching remicade i have found out that in Ontario, the government drug benefits plan will now cover it, because it's an infusion and all infusions are covered.....so here i am all stoked to get on remicade (by the way i'm really poor so this is a god send)...BUT after reading all this i don't want to take it....I have TB...it has never been active but i have definitely been exposed...i would test cleary positive for TB.....so should I not go on these drugs?.....bummed out......marco

dance like nobody's watchin....

Marco -

Sorry for the delay in my reply. Thank you for your Christmas wishes - Happy Christmas to you and your family.

From what I understand having TB is important information to share with your doctor, but does not exclude your opportunity to have the drug. You should speak with your doctor, and weigh the pros and cons. Some people are able to take remicade with concurrent anti-TB therapy (usually a 3 drug cocktail). Obviously there are side effects to each of the drugs, but it does provide a safer alternative.

Let us know what happens, OK?

Hugs,
Jeanna

Wishing you a season of smiles, love and hope

I am 32 male from INDIa & my Rhumy advised me to go in for treatment with Infliximab .
I have no idea of this drug & want to know the details for this.
Some of the questions that come to my mind are

What are the Side effects ??
How long is the treatment ? Is it to be administered life long ? or to be stopped after few dosages ?
What is the cost involved ?

Thanks
Punit

Remicade Trial Week 14....So far so good...mostly:

I'm on Remicade in a research trial in Toronto with Dr. Inman (excellent)

The drug is working well, but my opinion is still out...we will see after a year or two.

I have severe and progressive AS, although I was only actually diagnosed a couple of years ago. I used to eat Advil like candy, and later moved on to Celebrex. The last four years have been very very bad for disease activity, and I was sure I was leaving this world sometime in the near future...each year was much worse than the previous one.

The upside to being so sick is you make an excellent research subject, and I heard somewhere that there is now a shortage of good AS research subjects. I had no trouble in being accepted for the study. I was tested for TB and some other stuff before the trial started. I get x-rayed, MRI'd, and otherwise scanned a lot and I give buckets of blood for testing. They take your pulse and blood pressure about five times, check your weight, ask you some questions, you fill out some forms.

It's all good stuff. The average visit lasts about four hours..so bring something to read.

How do I feel? I'm still sleeping a lot, real sleeping, (catching up on the luxery of good sleep,) but I'm actually "awake" most days...little or no fatigue...no pain at all. Greatly increased movement (I can pick up things from the floor, unassisted.) No "Stiffness" at all. I don't run, but I can now again walk without the cane, and I had been using a cane for years. I clean my own house, I do my own laundry, I'm back to work part-time....the other day I re-potted all my plants. I've started to work-out again, and I'm eating whatever I like without reaction for the most part.

I have had about four weeks total since the end of February during which I had lots and lots of energy to cruise around and get things done. In spite of that, I've gained about fifteen pounds (eating pizza, pasta, other yummy starch products, I'll stop soon, I promise:) On a health scale of 1 to 10...before Remicade I was down to 2, now I'm back up to about 7 so far.

SIDE EFFECTS
Strange and wickedly intense dreams for the first couple of days after each visit....cause unknown....followed by very deep sleeping for the next couple of days.

I had a really bad cold, which I thought was SARS, lasted 14 days....first cold since 1995 and that one lasted only one day. I've also had three, really bad headaches, at night, which have disappeared with a single Celebrex 200mg. Other than that I've required no other meds of any kind.

I haven't felt this good in at least a decade. All of the swelling everywhere in my body is gone. I am no longer sensitive to normal room temperature (I used to keep my place at 80F+ most of the time.) My strength is definitely returning.


I've had this disease for twenty years and I sure hope this situation lasts, because right now it's almost like I do not have this disease anymore.


I highly support trying this drug as soon as you can.


They're gonna crack this disease soon, you can see it in their eyes.

Eric in Toronto.

An extract from the editotrial in the current July 2003 Journal of Rheumatology.

Recently the treatment options available for RA and certain other autoimmune diseases have been substantially broadened with the arrival of the tumor necrosis factor-a (TNF-a) inhibitors etanercept and infliximab. While both drugs have been shown in large trials to be effective in treating RA, a growing body of data suggests that both are associated with the development of active TB. That this should occur is perhaps not surprising given that TNF-a is central to the host's ability to control TB infection. The production of TNF-a by alveolar macrophages has been shown to be essential in granuloma formation, chemokine production, leukocyte recruitment, and the killing of intracellular pathogens such as M. tuberculosis10.

They wear ''their brains in their bellies, and their guts in their heads,'' as Agrippa taxed some parasites of his time, rushing on their own destruction, as if a man should run upon the point of a sword, they eat till they burst ...

Srry to bother you, but your post gave me so much hope, I am cryin. I am so afraid of the Remicade, and of Being ported, I read some people talk about shots?

My dr says I need remicade as it is the most effective wih very aggressive AS, that I will have to be ported with a peripherial line, sedated, and it will take 2 hs of lying there.
If it is not too much of an inconvience, could you please, maybe walk me though what to expect?

I hurt so badly, no amount of pain meds quiets the storm in my spine. So I am really excited that something may really give me a few moments peace, but for some reason, I am petrafied. Maybe he gave me too much info for one day, lol, you have AS, it is aggressive, you need the more aggressive tx, it is this.....WOW!

He said one treatment (tx) every 2 weeks, then montly, then every 6 weeks etc, utill we find howfar e can go inbetween and still be happy with the result.

I

I currently take methotrexate, he just doubled my dose, bextra 20 mgs twice a day, folic acid, sucrulfate, and prilosec, and prescription iron, it seems I have a pretty severe case of clinical iron defecient anemia..........if that info makes any difference on what to expect.

Thanks for putting up with me,
thanks agan for the great andinspiring post about remicade,
My best to you and yours,
Shu