Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Cancer link to Remicade/Humira and other AntiTNF'S

I am on Enbrel. Prior to this my pain was so bad that I prayed for death. I have three little kids and a wonderful husband and I would miss them terribly, but I couldn't see myself living for very long in the state I was in. Beside AS, I have a wonderful life and Enbrel has helped me get back into it. I agree with Megan, your quality of life has to individually determine your course of action on treatment of AS. Good luck everyone. Bless you all, no matter what you choose.

-Donette

I think this is a personal decision. For me, since I have three kids and they all still need me. The cancer risk scares me. If LSD/NSD helps, I would try that first for now. However, if my kids are all adults, it would be a lot easier for me to make a decision to take Anti TNF. I agree with one said AS is not deadly but cancer is. On the other hand, living a server painful life is extremely tough! So it is a very tough personal decision to make.

I would agree that it is a personal decision to take AntiTNF's. Like you I have three children however I am taking Remicade.... AS became to much for me and it was effecting almost everything I did.... I decided last fall that this was not the person I wanted my children to grow up with. I hope I never confront some of the major risks of this drug but I could no longer let my children witness my deteriation on a daily baisis. I have been much happier and so has my family since I have been on Remicade.
I wish you much luck and health with which ever path you choose.
Beth

I personally think the cancer risk is not very high and may not be there at all in AS. The risks seem to be higher in RA patients and most of the studies for cancer were done in RA and not AS. RA patients are already at a higher risk for cancer while AS patients are not.

I would worry more about an aggressive infection or liver damage than cancer frankly on a TNF.

http://www.medpagetoday.com/MeetingCoverage/ACR/11522


http://rheumatology.oxfordjournals.org/cgi/content/full/ken026v1

. In contrast to RA, disease-associated cancer risk has been poorly explored in AS. Recently, no overall increased risk for solid cancers or lymphomas
were found in AS [7, 8].

now in kids there may be a problem and the FDA is looking into that one.

Correct me if I am wrong, but it was RA patients that they saw cancer in after taking tnf blockers. Mig, I know we talked about this!

A:)

Hi Gig,
Quality of life related issues again.
How may AS patients would have suffered from cancer anyway?I can't answer that question.
I was on Remicade for over 5 years, stopped due to other side affect related issues.
6 months on from stopping Remicade, giving Humira a try now. Low pain levels at the moment.
My overall experience with Anti TNF treatment, low pain levels, some side affect related issues (none serious), thank goodness.
I do believe that the current Anti TNF treatments generally lower our immune systems, but are a more targeted approach than the older DMARD's.
Most drugs have some potential side affect related issues.
I personally can't tolerate prolonged use of NSAID's (inc cox 2's), due to the usual stomach related probs.

Best wishes.

I have no idea what kind of Doctors you have over there in France but here I happen to have a doctor who was one of the first to study and test Enbrel. 80 percent of her patients are on antitnfs and very few have had any problems. I have been on it for 3 years and she has patents who have been it on for 8 years and longer. I would highly suggest visiting another doctor. I cant imagine not being on these drugs.

You can die from cancer, perhaps as a result of anti TNFs; but I could also die from a bullet to the head, and that's where I'm headed if I don't get some relief. That was what went into my decision to start Remicade at 23 years old, 4 months ago. I'd much rather get 50% better and have 20 years of life left than 40 or 50 years of how I am (haven't gotten a minutia of relief from the treatment thus far).

Hi Bigdas - Missed yr response here. Weeeeel, doctors in France? They are 'supposed' to be top notch, but so far my experience of em leaves a heck of a lot to be desired!

The first rheumy I consulted didn't even examine me, just looked at my hands, vaguely looked at the scans I'd brought along with me, opined that: 'He'd agree with my UK rheumy, I don't need the biggie drugs' and 'to continue as I was doing.' Then proceeded to tell me about his patients who are coming down with cancers and liver damage, yes, he was insinuating patients with AS, but I didn't question him. One question I would have liked to put, was: 'Why? Surely he blood tests...'

The second rheumy I consulted, a Prof at a big teaching hospital and considered one of two 'leading lights' in the rheumy world of France (!), did examine me. Pronounced AS sans doubt, and told me to continue as I was, and see him in a year's time to check on mobility etc.

My neck is the worst, followed by stomach and gut polyps, followed by feet and shoulders. Great. But the LDN and just this week, plus Amytriptoline, 10 drops, seems to be taking care of 'most' everything: keep fingers crossed!

As for the EOR (Extra-Oesophageal Reflux) possibly Bolus Pharangeous (swallowing can be painful/difficult), stomach and gut polyps - I medicate almost freely, finding out what is best! Like the Bimuno for the EOR, Gavascon also helping, psyllium for gut probs, Lactoluse ditto. COX2, and the Remedeine for pain. Seems to work for me. Hardly take much at all, last had a COX2 about 8 days ago - and that was primarily for my neck probs. Neck is bad..

For ME, I don't need/require the big gun drugs. I am fortunate, I don't have AS badly enough. A 'mild' case as they opine and I agree. Though no less horrible to deal with, especially when in a major flare...

As it is I do have elevated liver levels. No, no one has done owt about em or even suggested owt, but the lab report says elevated. So, think that 'they' might be taking that into consideration, dunno.

BTW Sjogren's can go with elevated liver levels. Interesting. Yes, I have Sjogren's in spades. Great. (Don't weaken, take another pill ).

Molly C (France)
Keeping on Keeping on