Frustrated and Scared of REMICADE!!

Why do you need to jump straight to biologics? What about 6mp or other drugs?

Hi there,

DCM2011, I have tried those drugs before and they made me extremely sick-profuse vomiting !!

Marianne- in sickness and health yes except for ostomy's :(``` He is very very squeamish when it comes to blood and bodily fluids and I don't think he could handle it. I don't think he could get past it.

You are happy with your j-pouch? If I KNEW that it would be only temporary I would consider it just to be able to say goodbye to this disease and the drugs !! But there is no guarantees and it freaks me out. Besides we don't have great surgeons here in my town who can perform this procedure. If I had to have it done I want someone who has performed many many of these surgeries so that the J pouch had the best chance of working.

Marianne,

Can I ask you some questions about your ileostomy? If you feel comfortable answering these questions please do ,if not I will understand and that's no problem.
How long have you had your j-pouch?
How many surgeries did it take?
From start to finish how long did it take to recover?
Any complications?

Thanks

Remicade isn't considered an Rx here in the US. I'm not sure how things work up in Canada, but here, it's not a prescription. I think it's considered a medical procedure?

I don't think you should go on it if 1) you cannot afford it and 2) you are this upset at the idea of trying it. But I will emphasize that the side effects from Remicade are EXTREMELY rare (whereas pred side effects are extremely common and also very serious). Additionally, even if being on a second drug at the same time increases your chances of developing a side effect ... you're still starting with such a tiny risk that the increase still leaves you with a tiny risk.

Anyway, like I said, I don't think anyone should be pressured into taking a medication they don't want to (and certainly not one that they'd have trouble affording). But I think you need to put the risks in perspective. A LOT of folks here on the forums were afraid of trying Remicade, and now are either very happy to be on it, or had to go off it for different reasons (not lymphoma). I was very apprehensive about taking Remicade, but I feel like it's given me my life back.

Ive been on Remicade for 1 year then off for 1 year (had remission and a baby) then back on. Its taken 1 year to start to get me into remission but I think thats because I was on the wrong dose. I dont want to stay on it forever but to be honest regarding the side effects for me it was simple.. In my flare I had absolutely no life and could not leave the house or hospital or look after my daughter. I tried all of the other drugs over the years and none worked. It was remicade or surgery. I chose remicade and now FECAL TRANSPLANTS and I am 100% happy with my decision. In hospital last month i met a girl who had been on Remicade for 5 years- it kept her in remission but now every 6 weeks as the remicade wears off she gets bad joint pain. She says it is a small price to pay. At the end of the day its up to you and how bad your disease is.. Good luck

UC Cursed, do you by chance live in Canada? I ask because you mention the cost of Remicade. I was told anywhere between $2000.00-$5000.00 month. I don't know how people pay for this treatment!! I ll have to ask my GI Dr more about it.

I have said to myself exactly what you said UC Cursed, if I am going to get cancer then I am going to get it. We don't know how or when we are going to die except that it usually comes sooner than we expect. But it still frightens me.....

I started VSL #3 this past week to see if it can induce remission. So far haven't noticed a difference but know it takes at least one month of daily use to induce remission then once weekly thereafter apparently forever.....

AussieT I have never heard of Fecal Transplants???? Can you explain and what the rationale is for this. Curious........

ScienceGirl, you have a good point the s/e of prednisone are very common and nasty!! GI Dr wants me off pred as soon as safely possible because of this. We call the drug a "frenemy drug" a "friend" because it works but an "enemy" to the rest of the body!

Well I have a lot to think about. I know that Remicade has changed peoples lives for the better and I am glad I've read those stories. At this point I am so tired of being sick and run down and eating this horrible white junky food. I miss eating salad, raw veggies, fruit! Havent had any all summer!

Thanks for your responses everyone, sure appreciate it !!

I flared for more than five years with no relief from any of the 5-ASA's or Imuran and only a little relief from steroids. I've been in remission for 6 years with Remicade. My doctor took me off the Imuran when the Remi kicked in. I take an antihistamine before each infusion and so far no allergic reactions. Many doctors give a small dose of IV steroid before the infusion to prevent reactions.

The serious side effects are not that common, but we each have to weigh our choices for ourselves. For me, it was a quality vs. quantity of life question. I was working so I could keep my insurance, the coming home and resting so I could work the next day. I had no life. For me it was a no-brainer. But that was me; your situation may be totally different.

Pluot said...
Please read this transcript of a lecture by the CCFA about weighing risks and benefits: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf. It was very helpful to me when I was scared about starting Remicade. Remicade does increase your risk of lymphoma (and moreso when used in conjunction with another immunomodulator like mtx) but it's a small risk and after being increased it is still a small risk. With unremitting inflammation you're increasing your risk of colon cancer far more than Remicade increases your risk of lymphoma.

Link doesn't work, not sure why, as I have a pdf reader.

Apart from that, just wanted to say thank you for that post. I'm no lover of Remicade. I was in hospital with a serious flare-up a month after starting it, and that was as good as it ever got for me. I have no personal reason to push Remicade whatsoever, other than recognising it does help a lot of other people (just not me).

I recently read a short piece by a doctor despairing about PILs (Patient Information Leaflets) and the patients who refuse to take antidepressants after reading about the possible side-effects in them. He was talking specifically about depression and antidepressants, but the same could be applied to all drugs, even OTC ones. The list of side-effects are always terrifying. That's because by law drug manufacturers are obliged to list every single reported side-effect of a drug. Even if it only happened to one patient. Even if it wasn't caused by the drug, but by something else. If it's reported, it has to be listed.

So take Remicade and brain lesions or MS. Is the probability somebody on Remicade getting brain lesions higher than somebody not on Remicade? By the laws of probability, a few people who are on Remicade are gonna develop MS, but would they have still developed it even if they hadn't been on Remicade?

As for the "doubled" risk of lymphoma, it's been said already, but it bears repeating: the doubling of a tiny risk still makes it a tiny risk, e.g, from 2 in 100,000 to 4 in 100,000. Simply having IBD itself increases the risk for lymphoma, so some of the cases which occur on Remicade may have happened because of having IBD rather than being on Remicade. That said, the overall probability for getting lymphoma if you have IBD/are on Remicade, is still very low.

Last but not least: uncontrolled colitis eventually leads to a far, far greater chance of colon cancer than Remicade does of lymphoma. After 40 years of colitis we are talking about a 50% chance, or 1 in 2 probability, of colon cancer. Now not many people have colitis which isn't in remission for that long; usually they have surgery long before if it's pancolitis, tbh. But am just emphasising that colitis (in particular, pancolitis) is a massive risk for colon cancer in itself.

Oh sorry, have just thought of one more thing <_<. The truly dangerous drug is Prednisone. Being on that and unable to get off it frightened me far more than being on Remicade.

PS: I thought Canada had a public health system, like the UK... =/ Hopefully somebody Canadian can help with the expense issue. In the meantime, might be worth trying low-dose Imuran/6MP with allopurinol, which is meant to reduce toxic side-effects like vomiting and increase the effectiveness of the Imuran/6MP. This seems little known about, but there are studies which can be found online.

Sorry about that, HW seems to have screwed up the URL. Try copying and pasting this one: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

When I started Remi, I was so sick I figured any risk outweighed how bad I was feeling. I needed to live life for the day and try and take some control. I was on Remi for over five years (before it was even approved for UC), and have had two clear colonoscopies and am now on maintenance meds. It worked very well for me and actually healed the ulcers so I've been in remission for over two years...maybe three? This is my story; it worked well for me.

Oh yes, they are now considering starting with the big guns, and then working down to maintenance meds. I suppose I was a guniea pig for Remi, and my doc truly believed it would work to heal the ulcers, and he was right. I still give him kudos for going above and beyond to try it.

I had the TB Test done when I started, and then eventually about year 3, they asked me to do one every year after while I was on the Remi. I never had the Shingles vaccine, although I did have Shingles the year after I stopped Remi. Now I've heard two different theories from doctors -- take it to protect yourself from future outbreaks, and the other, don't take it because it will make the virus active again. Sheesh!!