What's the chance of getting MS from Humira/Remicade?

[hannaaah666]

Pred has left me with a pretty messed up brain. Irrational thoughts, depression, all kinds of crap like that.
No drugs have helped my crohns besides pred, but if I stay on it all my life not only will my body crumble away but I'll probably jump off something!
My Pred-Head has told me that I'm going to get MS. My doctor mentioned Humira and Remicade because that seems to work for people. While I was irrational I googled side effects of them and ended up having a several-hours-long panic attack. I seem to remember screaming constantly for several hours and I somehow ended up curled up in the bath hitting my head. Yeah.
I like statistics. Is there a statistic for how many people get MS from the drugs? I panic, but I don't want to choose between having very painful stomach and backache or risk the rest of my health (and sanity!)
Ah.
Thanks

 

[Clash]

I'm so sorry you are having these worries about the medications. I'm not sure of statistics for Remicade and Humira as they refer to MS symptoms. I'm sure someone will come by shortly that can help you with this question. My son is on Remicade and so far his only reaction has been fatigue right after infusion. It usually lasts 4 or so hours but by that evening he seems to bounce back. I understand your concerns about side effects, it is a big decision and each person has to weigh out the risk to benefit ratio. I did alot of research of Remicade and wrote down any question I had as far as risks, side effects, remission statistics compared to other meds then went over them with my GI until I was satisfied I had seen all the statistics and weighed out the risks and benefits. Maybe you could make a journal of all your concerns and questions and present them to your GI, let him know that you need to feel comfortable with making that decision and to do so you need answers to these questions.
I completely understand the pred-head my son was on pred up until he finished his taper last week and he had a host of side effects, bad thing was the steroids were not helping to knock down the inflammation. We were thrilled to be off of the prednisone! I hope you are able to find the answers to your questions,allay your anxiety and choose a medication that is right for you!!

 

[David]

I'm not aware of either drug ever CAUSING MS. Can you please link me to a reputable source that supports that claim?

Now, MAYBE they might, in very rare circumstances lead to the erosion of myelin which leads to symptoms like MS, but I would bet big money that in the case of Crohn's Disease, most of the people who think they are experiencing MS associated with these drugs actually have peripheral neuropathy or subacute combined degeneration of the spinal cord due to vitamin deficiencies.

 

[Manzyb]

I've never actually heard of either drug causing a person to develop MS, either.

 

[Clash]

David, I tried to research it but most of the first links that came up were to old threads on here where people were having MS like symptoms, but were negative for MS, several pages into the search and still no mention of a factual connection but my research skills may be lacking.

 

[David]

If I was active back then like I am now I'd be screaming at people to get their B12 and folate tested.

I should probably do some admin edits to those threads so we're not misleading people

 

[hannaaah666]

Thank you guys so much! I think a lot of it was my pred-head deciding I was a doctor and should trust everything google says. I'm a bit more relaxed about these treatments now (though I don't know if I'll go on them)
Does anyone happen to know the success rate of infusion drugs in causing remmision or relief of symptoms?
Thank you so much guys! x

 

[Manzyb]

I don't know numbers or anything like that, but I have taken Humira and Remicade both, and both of them did wonderful things for me I hope that you get started soon and get to feeling better.

 

[PsychoJane]

I have a few links regarding Anti-TNF and contraindications regarding demyelinating disease antecedent. So far I don't have papers that states that anti-TNF causes MS but more like "hypothesis" or what seems to be a potential aggravating factors kinda thing.

Here is one excerpt I found:

Established and progressive multiple sclerosis (MS) is an absolute contraindication to TNFα antagonist therapy. In patients with severe RA and quiescent MS, the appropriateness of TNFα antagonist therapy should be discussed with the neurologist (evaluation of the risk/benefit ratio). Therefore, patients should be routinely asked about past or present neurological symptoms suggestive of “latent” MS. At the slightest doubt, the advice of a neurologist should be obtained.

When there is a family history of MS, the patient should be informed about the risk and carefully monitored for neurological manifestations.

However, there is no recommendation to perform MRI of the central nervous system in patients who have no clinical manifestations. The detection of white-matter microlesions is a common situation whose interpretation is unclear, and the investigation may therefore generate confusion about the best treatment decision.

Source: Thao Pham and al.(2011), "TNF ALPHA ANTAGONIST THERAPY and safety monitoring", Joint Bone Spinevol.1,p.15-185.

Results:
Four studies on the risk of demyelinating diseases in IBD were identified. One study revealed an observed prevalence of MS at onset of IBD at 3.7 times the expected (95% CI, 0.8–10.8). In the Danish anti-TNFα IBD cohort, 4 out of 651 patients developed demyelinating disorders after anti-TNFα treatment. The SMR for developing MS among Danish IBD patients treated with anti-TNFα was 4.2 (95% CI, 0.1–23.0).

The literature review revealed an up to four-fold increased risk of demyelinating diseases, in particular MS, in IBD patients in general. The risk of developing MS in the anti-TNFα treated Danish cohort did apparently not exceed this risk.

Source: Anderson N.N et al(2008), "Occurrence of demyelinating diseases after anti-TNFα treatment of inflammatory bowel disease: A Danish Crohn Colitis Database study", Journal of Crohn's and Colitis,p.304-309.

Three safety analyses of large series of IBD patients under IFX revealed one patient with demyelination suggestive of MS, who was reported in detail elsewhere, out of 500 patients with CD treated with IFX at the Mayo Clinic, one patient with verified MS out of 651 IBD patients of the Danish
Crohn Colitis Database treated with IFX (followed for a total of 2009 person-years post-treatment), and 3 cases of confirmed demyelination in IBD patients treated with IFX in Edinburgh covering 620 patient-years of follow-up.

Source:Miesler and al.(2010), "A decade of infliximab: The Austrian evidence based consensus on the safe use of infliximab in inflammatory bowel disease", Journal of Crohn's and Colitis, vol.4, p.251-256.

There is also a paper that refers to 3 cases of MS/MS-like induced disease by anti-tnf (1-infliximab, 2-humira, 3-Etenarcept). It also stipulate that they can't exclude for sure the possibility that it was "real" MS as the follow-up was too short. Fromont A. et al(2009),"Inflammatory demyelinating events following treatment with anti-tumor necrosis factor", Cytokine 45, p.55-57.

 

[PsychoJane]

But Hannaah, even though I can't find clear statistic, these papers are not alarming. There is a chance, maybe, but how it's cleary not a frequent side effect. One thing to consider (and I have read while searching for these paper) is that the anti-tnf seems to worsen the multiple sclerosis symptoms. Then, it's pretty hard to confirm in these researches that the symptoms that they said got worse, were not potential pre-existant MS and just got better once they stopped the treatment since it is what was worsening the symptoms.

I don't think you have to worry much unless you have close family member that have MS or similar diseases.

 

[David]

Great finds PJ. I'm admittedly quite disappointed in myself for not finding those.

 

[Rebecca85]

What is the difference between humira, Remicade and Tysabri? I'm afraid I don't understand much about the biologicals! But Tysabri is used as a treatment for MS.

As regards to the increased risk- was this compared to Crohn's patients in active flares/ being treated with other medications/ or what? Could having active uncontrolled flares (the type of patient typically referred for biologicals, especially in the UK where you must have failed other drugs) increase the risk for MS or demyelination? (I have been diagnosed with CIS- a one off demyelinating event- which my neurologist feels may be related to my Crohn's flare 2 years ago, or it may be the first manifestation of 'real' MS. I have never been treated with any biologicals)

 

[Lisa Marie]

Actually after taking humira I have experienced sever muscle pain all over my body.. I was scared and went to see A bone/ muscle dr and I was diagnosed with fibromyalgia which I believe is totally caused by humira.. All. Can say is I have stopped medication immediately and been doing accupuncture it really helps with muscle pain and crohnes

 

[tiloah]

hannaaah666 - Have you ever seen a psychologist or a psychiatrist? It sounds like you experience pretty severe anxiety. Is this a side effect from Prednisone? At the very least a professional could give you some coping mechanisms to help deal with it while it is happening.

 

[Absentminded]

My Humira drug info sheet states under possible side effects:

RARE (in more than 1 in 10,000 patients but less than 1 in 1000 patients
- multiple sclerosis.

To be honest though, I have always thought that the probable benefits will generally far outweigh the possible side effects.

Mind you, my Dad has secondary progessive MS, so I probably should mention that to my IBD nurse. But even then I'm not particularly concerned, there's no point worrying about something that might not happen.

Edited to add: Apologies if my post alarms anyone, it is not meant to. I just thought you should know what the drug sheet says.

 

[Annabelle21]

It may be rare, and I certainly thought it was rare as i didnt consider it. However I am now diagnosed with small fibre peripheral neuropathy, is this a manisfitation of crohns or is this following on from 2.5 years on Humira. From the time I went on Humira i had problems with side effects, which my doctor said even though i had side effects it was better than pred, but the pain of this is horrific and I wouldnt wish it on anyone else. I have searched the web, people have been diagnosed with these types of problems from Humira, it is all over the internet. My B12 levels were suprisingly high.

 

[crazycanuck]

My way of looking at Remicade is if I wasn't on it and continued the flare I had before I started it I'd be jobless, without the love of my life, without my car, wouldn't have gotten into school again this fall, and would be living in my parents basement curled up to a toilet.

If I have to risk a less than 1 in 10 000 chance at MS to have the life I have now I'd say that's worth it. Side effects and potentially scary ones can come from any drug on the market today. For me the benefits far out weigh the potential side effects.

My grandfather always says what is the point in worrying about what you can't control. So I adopted that saying.

 

[Annabelle21]

I agree, take it and enjoy the benefits, but remember that it may have a side effect that is quite nasty. I unfortunately have issues with most of the crohn''s meds, including budesonide which gave me a complete shut down of my adrenal glands in 3 weeks and took me 6 months to recover use of them.

 

[Mountaingem]

I think people with Crohn's, RA or any other autoimmune disease are more likely to develope a second disease anyway. Glad you asked this question; I never had heard of this either.

My doctors have always said long-term steroid use is every bit as dangerous as TNF inhibitors. We Crohnnies unforturnately don't have very many good options

 

[Rockdawg]

I know this is an old thread, but I felt compelled to respond. I took Remicade for 5 years, and I now have Multiple Sclerosis. The more I research, the more I can find similar folks like me...having said that, I probably would have taken the Remicade again, even if I had known about the small MS risk, because I was so sick and the drug worked SO well for me. I am now n Tysabri, but hope not to be on it too much longer.

 

[KUB27]

My husband was diagnosed with Crohn's 5 years ago. He was placed on Humira, it was working great, but last year started having MS like symptoms. His GI doc took him off the Humira immediately and did not place him on anything else until we knew what was going on. He WAS diagnosed with MS!! He had to wait to get put on any crohn's meds until they started the MS meds. Needless to say, his crohn's had flared up and he has been in pain etc since Feb of this year. The doc put him on Imuran which hasn't seemed to help. We go in on Tuesday and I want other options for him.
Rockdawg...what can you tell me about Tysabri? Everything I read says it can help both, but the brain infection causing death scares me.

 

[Rockdawg]

What you say pretty much sums it up...the Tysabri is working great for me, I feel great, and I am constantly scared about the brain infection. I am really waiting for Vedolizumab to come out...it is supposed to be like Tysabri, but safer I think.

 

[Jimena]

Can you tell me what kind of symptoms did you have before diagnosed with MS? Rockdawg and KUB27?

 

[jboatrn]

I'm not sure if that first message went through, but I am a nurse with 20 plus years experience, and after googling MS and remicade, I get lots of responses. So having said that I have UC took remicade, and now have MS. So though it may be rare, it can happen.