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November 03, 2009

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Duncan Cross

Sara - anti-TNF drugs have been known/suspected for a while of making patients more vulnerable to infections and also contributing to certain kinds of rare cancers. See, for example: http://www.aafp.org/afp/20050115/tips/9.html ; also: http://www.medscape.com/viewarticle/491337 . From what I understand, the most recent studies of cancer and anti-TNF don't support a link, but the studies of infection continue to show some risk from this class of drugs. I wouldn't worry too much about it, all told, but it is worth keeping yourself informed if you are or plan to be taking one of these drugs.

Helen

Let's hope that's true!

I've been very lucky in that, despite having been on Enbrel for 6 years, I only rarely get any kind of infection. It's basically the same as it was before.

Enbrel has completely changed my life, so I hope I can continue to take it.

Britta

I was on Enbrel and methotrexate at the same time, for like 9 months...and wow did they make me sick. I had pneumonia so often and so long, it took like 3 years to get healthy after I stopped using both.

Meghan

Sara-first I'd like to say that I truly enjoy reading your blog. As a 20-something with RA, knowing there are others in similar situations is a comforting thought.

I decided to write something in response to this post because it hits home in far too many ways. I was on Humira for 2 years (and they were a wonderful 2 years in terms of living life as I pleased). My treatment was halted last year when I was diagnosed with cancer. There will never be a direct line drawn between the two...but even my doctors know something is up. In the literature there are numerous compilations of "meta-analyses" trying to see a correlation (or not) between TNF inhibitors and cancer. Most papers are mixed reviews and can't definitively conclude anything. However, look up the data on the FDA's website. What is known is that this risk of cancer IS elevated in children and adolescents. While I'm no longer an adolescent (thank goodness), the immune system of a 20-something is not that of a 40-something. There's still a lot of research to be done.

Additionally, I'm a PhD student in immunology. I've studied and researched autoimmunity for the past 4 years and I know firsthand the numerous processes that involve TNF. It's actually really scary for me to take drugs of any sort because I know what's going on inside me. I know what can go wrong.

I'm sure the majority of people on TNF inhibitors will have nothing but the best years of their lives ahead of them and by far, the benefits outweigh the risks. That being said, everyone is different. Look at the myriad of ways that RA can clinically present from person to person. Our immune systems are doing bad things in different ways. Therefore, the drugs we take affect different people in different ways as well. Just some food for thought :).

Rabbit

I am not able to take the usual medications for RA because I have been on antibiotics for a year and I have been doing much better since. I had to stop taking my RA meds before I had surgery and was put on the antibiotics for an extended period of time because of my ankle replacement. I know this sounds strange because RA is not treated with antibiotics but it is working for me and I feel better now then I ever felt the 7 years I was on Methotrexate.

sara

Rabbit- Actually, I've heard from a few people who are having success treating their RA with an antibiotic regimen. You are right in that it is not a common treatment, but it does seem to be out there, and seems to work for some. Glad it is helping you!

sara

Meghan- thanks for taking the time to put up this comment. I really appreciate the thoughtfulness and your perspective, and it's good for people to hear this side of things, regardless of what our own experiences may end up being. The full picture is important.

Britta- ick, that sounds awful. I hope you are feeling much better these days.

Helen- I've been on enbrel for 2 years, and like you, knock on wood, seem to be faring well so far.

Duncan- absolutely- I try to stay on top of everything that comes out about the meds I take. This study happened to be on the brighter side, but the infection risk is undoubtedly not on the bright side, and very real.

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