Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Anti-TNF can cause MS

Humira and Enbrel suppress the immune system. The printed documents that come with each will tell you that it does, and will tell you to stop taking it if you get sick so that your immune systems can better work against the sickness. Each also has warnings about other problems that can be caused by its immunosuppression, such as fungal infections and neurological disorders. I learned this the hard way, in that I got MS from taking Enbrel for four years.

I've since learned that I could control most of my pain through the low-starch diet and supplements. If I had known about that earlier, I would never have started Enbrel. But that's the kind of info the big pharmas want to suppress. Enbrel worked great for a while, but now I'm back to full-blown AS with severe MS symptoms.

--Greg

Ugh, I'm sorry Greg. "Orch" (Steve) is also a biologic-caused MSer. I'm looking at a possible MS dx too though I haven't done much in the way of biologics, I only did a few months of Remicade in 2006. MS runs in my family as well as AS and cancer. Have you heard of LDN? Low Dose Naltrexone (lowdosenaltrexone.org) if you haven't heard of it, you NEED to read up about it, it has helped my AS pain HUGELY and it's sortof a wonderdrug for many MSers. I can't say what it's done for me in the way of MS symptoms, since I've been on it since 07 and had MS symptoms only the last year. But I THINK it's been holding off the flares. Can't be sure, of course.
Let me know if you'd like any more info about LDN, I've got a lot of hookups.
hugs,
Bridget

Im very sorry to hear this happened to you. But I was wondering about this and am glad you posted it.

Im really scared, my AS wont stop flaring its being going strong for over a year now. Im doing the NSD and have been strict, but have had little to no results thus far.

My mom died at age 45 due to MS, her life was really bad from age 39 on. Im petrified.

Does anyone else in your family have MS?

May I ask your symptoms and how the MS all started? I started Orencia after a year, but a big part of me doesn't want to continue it. I hope you get better. Have you ever heard of antibiotic protocol for your arthritis? I konw some people it has helped and they are off their traditional rheumatic drugs. I go to roadback.org and rheumatic.org for info.


Thank you for sharing what has happened to you, today I was thinking about asking for Humira because I am going to see my rheumatologist, but I keep thinking about the MS as a side effect and that is why I choose Orencia- however Orencia might be just as bad. I'll say a prayer for you today. Take care.

Hi Greg, welcome to KA.

That is a truly awful and sad result to have MS after 4 years on a biologic. I'm so sorry that you're suffering this, along with your AS coming back on full-blown after stopping Enbrel.

Really good news that you found you can control your AS pain and symptoms through the no-starch diet. I really hope that there is a chance your MS symptoms might go back into hiding, with the withdrawal of the med.

Take good care,
mig

Hi Skywalker,

If there is a family history of MS, I believe that means that the biologic class of medications are contraindicated for you, as that increases your risk.

I'm so sorry that your AS is so bad and in constant flare. I know how absolutely rotten that is.

I hope you will find something, a combination of treatments and diet perhaps, that might help to bring your inflammation levels back under control. Hang in there.
mig

My mom has MS and I am on a TNF <simponi>. They are not ruled out in our case but the Doc needs to know and watch you closely.

I am approaching two years now and no MS signs. In the studies most developed the symptoms in the first year or less on the TNF and most saw the MS like symptoms go away when they stopped the TNF. (not all though)

It is very rare side effect but a scary one.

Valsmum -- Orencia is not a TNF so I am not sure MS type situation are related to it like the TNF drugs can be.

Greg, I'm so sorry to hear you are one of those that developed MS while on a biologic.

But to be fair, the pharma companies have not suppressed this. It is in the literature in section 5.2 here: Patient Information PDF

Rheumies have to learn how to evaluate this risk in their patients, but unfortunately, not everyone has the risk indicators in their medical history. I'm so sorry you are one of those who are experiencing this.

Hugs,

Oh, I don't think I knew that about your family history. Really glad to know that it doesn't rule out the possibility of a biologic, especially for those who really need to improve their quality of life.

It may make the decision tougher, but if you have a good Rheumatologist to keep a close eye, then these facts can all help to provide a level of comfort. I've read the same as you -- that studies have found it is very rare, that the symptoms most often reverse upon stopping the medication, and that the initial few months are the more important to watch, with the risk further decreasing from there.

A balanced and thoughtful post as ever, drizzit - thanks!

i am so sorry that happened to you! i just 1 week ago took a tnf blocker for the first time. I feel torn because what do you do if you really do not want to put anything into your body... but you have no choice! if i do not take it, i will not graduate, i will not have a career, and i will have substantial disability. How is it possible to weigh the risks and the benefits? I wish i could stop ASAP but at the same time... i would lose everything and i have already lost so much. thank you so much for posting that. It is a reality check for me that i need to really think about what i am putting in my body. I am just so confused i do not know what to do! it seems like no matter what you do, you have a risk of something bad happening and its hard to accept that.