Anonymous 29/01/17
Last reply 1 year ago
MS and other autoimmune diseases

What if you have MS plus one or more other autoimmune diseases? How do they treat you?

I can’t make sense of why all the various conditions which are caused by the immune system mistakenly attacking our bodies all have different treatments (so far the exception I have found is Tecfidera treats both MS and psoriasis) Shouldnt damping down those lymphocytes work for all of them? Can anyone explain?

And as they do have different treatments: what if you have both MS and, say, Sjogrens or Ankylosing Spondylitis and take a DMT, will that make your other autoimmune disease worse?

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1 year ago

I think a lot has to do with the type of tissue the autoimmune disease targets as they will all carry slightly different receptors, so whilst many target the lymphocyte they have to bind by a specific receptor. I know a lot of side effects for some dmt’s include other auto immune diseases so it’s weighing up which you’d rather have. My mum suffers crohns which is obviously intestinal, so takes humira but I have MS so take copaxone which is synthetic myelin in effect. Most autoimmune treatments involve a type of interferon so will work in the same way but it’s perhaps just the specific way they attack us, so the specific way the treatment needs to bind to our antibodies that leads to the different treatments- someone researching Inflammatory Bowel diseases won’t be paying attention to how their drugs effect us x

1 year ago

Just re-read that and have had a glass of wine so I’m sorry if it makes no sense!

1 year ago

@jessvf14 don’t worry, it makes perfect sense! Thank you!

Is there any research that anyone knows of relating to how many people are likely to have MS plus another autoimmune disease? Sometimes I read that it is very likely and sometimes very unlikely, but it is all anecdotal.

It seems to me that once you have an MS dx all symptoms are ascribed to that and although it is supposed to be a dx of exclusion, how many of us are screened for other things?

And is there any info/research on which DMTs exacerbate, or possibly even help other conditions? I’m sure I read that if you are mistakenly given an MS DMT when you actually have NMO, it can cause your NMO to flare or even a relapse.

Given that we are asked to choose our DMT, and that we know our symptoms best, wouldn’t this info be useful?

1 year ago

Often products are licensed only for the conditions they have been researched on – but that doesn’t mean they aren’t useful/are harmful to other conditions. I’m on Tysabri, which is also licensed for Crohns, but I have a friend on Tysabri for MS who’s finding it helps her Lupus symptoms even though it’s not licensed for that. I think it’s mostly down to which systems it acts on and how. Almost all MS drugs are new (relatively speaking) and research is still being carried out post-licensing.

1 year ago

Interesting thread – I seem to be gradually collecting autoimmune diseases although although I’m only on treatment for the MS. A more holistic approach would seem to make sense.

1 year ago

Thanks @koffeelover that is really interesting.

And @hels99, the more I look into it, the more I wonder. I don’t quite understand why I can’t find anything relating to research on this, or about how many people with MS have other conditions, or even what percentage of people get screened for other conditions.

It seems to me (my highest relevant qualification is a Biology O’Level, so I am probably missing something fundamental here) that there has to be a reason that some people respond to some DMTs and not to others, and that this could be related to other auto immune conditions that they may have.

My personal interest is that my cervical lesion in April was preceded by my hair falling out, dry eyes, joint pain and my bottom lip swelling (for months, not a one off allergic reaction). I also have a history of soft tissue injury to sacroiliac and neck, ‘lax ligaments’ and physios often comment on how bendy my joints are. Added to this is a Tarlov’s cyst on my thoracic spine and excruciating lower back/si pain and stiffness and a family history of Ankylosing Spondilitis. All of this could point to AS, or Sjogren’s or a mild form of EDS or some other connective tissue disorder.

However, I think that GP and neuro will think I am a complete hypochondriac if I say I now want an MRI on my lumber spine and pelvis and screening for all the above conditions. They’ll just say it is the MS, but why couldn’t it be something else as well?

1 year ago

You can certainly have more than one autoimmune disorder. I just googled multiple autoimmune conditions and this link (bottom of post) came up straight away to a research paper so you may need to redirect your research (please don’t take offence to that, I just mean medical journal libraries online are the best place to find info). “Multiple autoimmune syndrome” is the name given to having multiple conditions so that’s a good place to start. As far a second med’s are concerned for research they would have to have a group of people with the same conditions to get reliable results, which would be hard to come by. Also some people have antibodies to certain DMTs which prevent them working which is one contributing factor to failure. Also it just comes down to disease stability and progression. Ms is so unpredictable from one person to the next that we will never actually know if a DMT is working or if the individual’s disease would have naturally taken the same course, ie be quite dormant without treatment, though it’s chance not many of us want to take x

1 year ago

Hello all, and thanks @jessvf14 for the link to that interesting article, which I have just read.

I wonder how many members of Shift.MS have seen (or bought) details of their own DNA.
I tested with 23andMe which revealed that I am a carrier for Gaucher Disease, and have many genetic predispositions for MS, and a stronger than average likelihood of developing Parkinson’s.
My most recent MRI happened to detect another very rare disease called meningioma. (A brain tumour which is 90% benign.) (DNA shows pre-disposition to this too!)

Most of my family have one or more autoimmune disease(s).

I had the full works migraines in my teens, at school, usually from the stress of tests); in middle age and older I have just had blurred vision at times of over-tiredness/stress.

I have always had dry skin, dry eyes etc. But no doctor ever looked at all my many problems (some minor) and put them together.
Dx IBS about 1984 ( but could have been at any time from age of 14). (Probably coeliac.)
Skin cancer (melanoma) on face successfully removed in 2002. And treated with an experimental (off label) cream.
Often told borderline Hypothyroidism, but not treated.
Since mid 30s had body temperature problems – always too hot or cold.
Pain walking most of my life. Bursitis in hips. Steroid injections into a hip or foot in alternate years – and so it went on for decades (SAD thrown in ) until in June 2010 I flew to Glasgow from Gatwick in a heat wave, and came home after a few very over-heated days, and legs did not work. A month later went numb all over, and into ITU for a few days of many tests, and a week later was told it was most likely to be MS.

I agree with other comments here, that the whole person needs to be considered. And other auto-immune diseases should be ruled out. (A long list!)

Having looked at the possible side-effects of the various DMTs, and being quite old, and not in pain, (and totally risk-adverse by nature), I have not opted for any DMT. The clonazepams (0.1mg) I take at bedtime send me to sleep, and leave me pain-free all day. (Yes, am obviously addicted to them). I do not need to drive, or go to work. I probably have some form of MS, but keep an open mind on this. Could be other thing(s) instead/as well?

I would not suggest this course of action to anybody else. We are all different, and it would be ideal if the correct treatment for each individual, having taken into account ALL their symptoms, age, occupation, diseases etc could be found. But we are not living in an ideal world.

But the amount of research in recent years, world-wide, is encouraging, as more and more is discovered about MS. (Hope it will continue, and not be cut off for political reasons.)

Whatever new symptom I get (which could be caused by MS), I get it checked out, to rule out anything else, and then accept it is the MS – and may go away some time. We should not just accept that everything is caused by MS, after an MS dx.

1 year ago

That’s really helpful, thank you @jessvf14

No offence taken at all ☺I was concentrating on Multiple Sclerosis plus other autoimmune diseases so it wasn’t a very efficient way of searching.

1 year ago

@teal If you read the latest Barts Blog it is saying that probably 1 in 20 people diagnosed with ms actually have something else.. !
I apparently am a fascinating case avoiding to Barts and I agree with that.
I still think the jury is out on it all quite frankly.

1 year ago

Very interesting thread! I also wonder how it all works as I was just diagnosed 2 months ago with Graves’ disease. ?? My RRMS needed a buddy I guess. ?

1 year ago

I had some Vililigo autoimmune disease (pigment loss) in my 20’s and then I started having small patches of psorrias. A large patch of it recently appeared on my back, but I am already taking Tecfidera so I am hoping it dosen’t get any worse. Potter

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