In my experience, the most common co-morbid autoimmune disease in people with MS, outside of thyroid disease post-alemtuzumab, is MS-associated uveitis.
Firstly, thank you so much Prof G for raising the topic of MS and co-morbid autoimmune disease. I have been a bit of a lone wolf in raising this topic within my recent voluntary capacity with the MS Society.
To let you understand, my brother and I have MS, and personally, I have an additional six autoimmune diseases. My first developed when I was 11 (Juvenile Arthritis) followed by Graves disease at 13/14. It set the ball rolling towards diagnoses of Lupus/SLE, Addison's disease, Vitiligo, Oral Lichen Planus and MS in adulthood. Our Mum also happens to have IBD and RA, so we are an "autoimmune family" if you will. However, to get back to your point regarding DMTs and the difficulties encountered by those of us unfortunate enough to have accumulated our share of ADs, I have experienced this firsthand and it is a dreadfully lonely and frustrating place to be as a patient. A lack of awareness of how isolated people living with MS and other ADs are among the MS community and the particular challenges we face, merely compounds this sense of loneliness. I have also found it to be quite difficult on the part of healthcare professionals who are often unsure as to what is best to do with you (because as you rightly say, the evidence base is not particularly strong), and this often makes the patient feel as if they are nothing but a nuisance for being a "complex patient". If I had a pound for every time a Consultant has advised me of my complexity, I would be very wealthy indeed.
I would love to see the profile raised for those of us living with MS and other ADs. We do exist. Up to 25% of those with one autoimmune disease go on to develop another and for those much rarer types such as myself, we have the delight of trying to manage three or more ADs (MAS), however, just because we are rare, it doesn't mean that the difficulties experienced in relation to our complex care needs are not a constant challenge and ultimately have a profound impact on how well, or otherwise, we can treat both our MS as well as our other conditions.
Thank you again for kindly raising this. I truly hope more awareness will be generated among the wider MS community.
This is really interesting! I had Lem back in 2016/17 and since I’ve been relapse-free. However, I have chronic migraine and I suffer greatly with very red, sore eyes. I have what I would call “flare ups” where my vision blurs, the whites of my eyes go very red and gritty feeling. I also have a number of large (and small) floaters. I’ve never been diagnosed with anything other than “dry eye” and treated with drops. I have an Ophthalmology appointment coming up, so will question this.
You only mention it as a possible cause of Uveitis and don't mention SLE as a common comorbidity
If you had a patient on Tecfidera, for example, who was technically stable for several years re MS but with a new diagnosis of SLE, would you consider moving that patient to Ocrevus bearing in mind both conditions can be treated with anti CD20? Would NHS guidelines allow you to move a technically stable patient to Ocrevus if you wanted to?
I'd be really grateful if you would address this as waiting to see rheumatology but it could be a year... already lost my gallbladder to unspecified autoimmune disease and have multiple other symptoms which currently impact my life and well-being more than MS
Hi, I was diagnosed with MS back in 2001 then uveitis in 2014. I’ve never been on any DMT for MS, although I was on the MS STAT2 trial from 2019 to 2022. Treatment for uveitis was prednisone, lots of it, steroid drops and creams and steroid injections around my eye and a capsule in my eye. When this wasn’t working and the steroids had affected my bones and lenses I was taken off steroids and put on CellCept. Stopped CellCept in 2019. Uveitis team talked to neurologist who was happy treatments wouldn’t be detrimental to MS. Now classified as SPMS and have occasional uveitis flare ups in one eye managed with steroids. Carl
Do atopic autoimmune conditions like asthma and eczema count? I have both. My asthma has improved dramatically after DMTs, but the eczema has been getting worse. It reached a peak during my 2nd CoVID infection, but it is generally accepted that spike protein is pro-inflammatory in addition to being a pro-coagulant. I wonder if this is why MS gets worse during CoVID infections…?
I think eczema counts! (Also severe allergies/asthma.) One of my children was severely allergic beginning at 9 mo old was later was diagnosed with Crohn’s and eczema. My eczema was in complete remission until the second booster. It was so severe, dermatologist did a punch for lupus. It was a huge eosinophillic (sp?) reaction. It continues to worsen. I will not get another mRNA vaccine, but I hope there will be alternatives. Cheers!
I, too@, am grateful for your work and helpful summary of where things are. I have MS and Hashimoto's as well as psoriasis. I am also a Type 2 diabetic and I think we need to know more about the relationship between T2D and MS.
Yes, CIDP is can occur in pwMS and is well described in the literature and is often referred to as central and peripheral demyelination. I have seen one patient who had MS and was subsequently diagnosed with MMN. This patient had a monoclonal gammopathy and eventually developed a myeloma. I am not sure what happened to the patient as he was under the care of another consultant.
The message is that pwMS also get other diseases and whether MS predisposes them to these diseases or it is just bad luck is a moot point. The treatment of two inflammatory conditions simultaneously is often challenging and there is little evidence to guide decision making here. MMN and CIDP often require IVIG and/or steroids, which probably have little effect on MS. Therefore both conditions probably need to be treated simultaneously.
I Think this comes down to a Quality of Life for the MS patients. What if IVIG caused a virus? Or MS to speed up, as the mechanism of IVIG adding so much protein to liver. What if you have CKD, as it effects Kidneys? And changing DMT is not a option, as others may cause lung infections.
It wont help lung issues, a turning point of reality.
Interestingly, and consistent with your observations, following the birth of my first child I suffered from post partum thyroiditis (without any noticeable MS relapse).
Thank you for this information! I don't currently have any co-morbid autoimmune diseases to complement (ha!) my MS, but I will be vigilant for any vision issues and much more aggressive in seeking treatment should symptoms arise.
After 26 years with rr MS, I was diagnosed (2 yrs ago) with eosinophilic fasciitis. At that point, I had been on Ocrevus for 3 years. My neurologist and rheumatologist decided I would continue on that and I also started taking methotrexate and prednisone 12 months ago for EF. I haven’t had any flares of the EF during this last year. ( I’ve read that rituximab has been used as a treatment for EF, so I wondered if O had any impact on it?)
This is the first I have heard of someone with MS getting eosinophilic fasciitis. Ocrelizumab and Rituximab work similarly, so I'm not sure if Ocrelizumab can necessarily be blamed for the EF. I would need to explore the literature for more information on this.
Thank you. Yes, that’s what my neurologist here thought as well (Ocrevus unlikely to have caused EF). Don’t know of anyone in my family who had EF. My mother did have MS, but we don’t know that she had any other autoimmune disorders.
I have MS (diagnosed 2004) and have had a number of episodes of uveitis over the years. At least one episode may have predated my diagnosis - I don't know because I didn't know I had uveitis at the time, if that makes any sense. Each time I've had uveitis it was treated by my local ophthalmology department with steroid eye drops.
My neurologist has never been involved and probably doesn't know about the episodes because I didn't know that uveitis was classed as a co-morbidity of MS. Given how infrequent the episodes have been, I don't know if he needs to be involved. I've been taking Fingolimod since 2009 which doesn't seem to affect my uveitis one way or the other.
I've had psoriasis once. The skin around my belly button went all crusty. It cleared up before I got around to seeing a doctor about it so it remains undiagnosed. Not long after that my MS was finally diagnosed and I started on DMF - in hindsight this might just have been the best choice as I haven't had a relapse or a recurrence of the psoriasis! I wonder whether the psoriasis would have come back if I'd chosen alemtuzumab.
Thinking a bit more about co-morbid autoimmune disease in people with MS it occurred to me that my thyroid problem was diagnosed when I was seeking a reason for fatigue (also picked up pre-diabetes) People with MS are likely to have had more tests than the average person during their diagnostic journey and other conditions will be uncovered. This may skew the figures for some conditions. Uveitis is perhaps more likely to declare itself without testing so it's relationship to MS is perhaps more genuine.
Grateful for this, and love all the comments here.
The topic of multiple ADs is relevant to my experience with 30 years of Crohn's and more recently MS. I was taking entyvio (anti-integrin targeting gut receptors), and developed MS. I don't think it's a really a moot point as to whether a therapy triggers something like MS, just because knowing that better would help other patients understand the risks, and help doctors.
I stopped entyvio and was given anti-CD20 (kesimpta) for the MS and it had a very dramatic negative effect on my digestive health (nausea, weight loss) that lasted for months. I eventually convinced my GI at the time to give me prednisone which righted my ship. Frankly, this sounds a lot like your patient.
Firstly, thank you so much Prof G for raising the topic of MS and co-morbid autoimmune disease. I have been a bit of a lone wolf in raising this topic within my recent voluntary capacity with the MS Society.
To let you understand, my brother and I have MS, and personally, I have an additional six autoimmune diseases. My first developed when I was 11 (Juvenile Arthritis) followed by Graves disease at 13/14. It set the ball rolling towards diagnoses of Lupus/SLE, Addison's disease, Vitiligo, Oral Lichen Planus and MS in adulthood. Our Mum also happens to have IBD and RA, so we are an "autoimmune family" if you will. However, to get back to your point regarding DMTs and the difficulties encountered by those of us unfortunate enough to have accumulated our share of ADs, I have experienced this firsthand and it is a dreadfully lonely and frustrating place to be as a patient. A lack of awareness of how isolated people living with MS and other ADs are among the MS community and the particular challenges we face, merely compounds this sense of loneliness. I have also found it to be quite difficult on the part of healthcare professionals who are often unsure as to what is best to do with you (because as you rightly say, the evidence base is not particularly strong), and this often makes the patient feel as if they are nothing but a nuisance for being a "complex patient". If I had a pound for every time a Consultant has advised me of my complexity, I would be very wealthy indeed.
I would love to see the profile raised for those of us living with MS and other ADs. We do exist. Up to 25% of those with one autoimmune disease go on to develop another and for those much rarer types such as myself, we have the delight of trying to manage three or more ADs (MAS), however, just because we are rare, it doesn't mean that the difficulties experienced in relation to our complex care needs are not a constant challenge and ultimately have a profound impact on how well, or otherwise, we can treat both our MS as well as our other conditions.
Thank you again for kindly raising this. I truly hope more awareness will be generated among the wider MS community.
This is really interesting! I had Lem back in 2016/17 and since I’ve been relapse-free. However, I have chronic migraine and I suffer greatly with very red, sore eyes. I have what I would call “flare ups” where my vision blurs, the whites of my eyes go very red and gritty feeling. I also have a number of large (and small) floaters. I’ve never been diagnosed with anything other than “dry eye” and treated with drops. I have an Ophthalmology appointment coming up, so will question this.
What about SLE?
You only mention it as a possible cause of Uveitis and don't mention SLE as a common comorbidity
If you had a patient on Tecfidera, for example, who was technically stable for several years re MS but with a new diagnosis of SLE, would you consider moving that patient to Ocrevus bearing in mind both conditions can be treated with anti CD20? Would NHS guidelines allow you to move a technically stable patient to Ocrevus if you wanted to?
I'd be really grateful if you would address this as waiting to see rheumatology but it could be a year... already lost my gallbladder to unspecified autoimmune disease and have multiple other symptoms which currently impact my life and well-being more than MS
Hi, I was diagnosed with MS back in 2001 then uveitis in 2014. I’ve never been on any DMT for MS, although I was on the MS STAT2 trial from 2019 to 2022. Treatment for uveitis was prednisone, lots of it, steroid drops and creams and steroid injections around my eye and a capsule in my eye. When this wasn’t working and the steroids had affected my bones and lenses I was taken off steroids and put on CellCept. Stopped CellCept in 2019. Uveitis team talked to neurologist who was happy treatments wouldn’t be detrimental to MS. Now classified as SPMS and have occasional uveitis flare ups in one eye managed with steroids. Carl
Do atopic autoimmune conditions like asthma and eczema count? I have both. My asthma has improved dramatically after DMTs, but the eczema has been getting worse. It reached a peak during my 2nd CoVID infection, but it is generally accepted that spike protein is pro-inflammatory in addition to being a pro-coagulant. I wonder if this is why MS gets worse during CoVID infections…?
I have to say that it’s a great hypopyon picture!
I think eczema counts! (Also severe allergies/asthma.) One of my children was severely allergic beginning at 9 mo old was later was diagnosed with Crohn’s and eczema. My eczema was in complete remission until the second booster. It was so severe, dermatologist did a punch for lupus. It was a huge eosinophillic (sp?) reaction. It continues to worsen. I will not get another mRNA vaccine, but I hope there will be alternatives. Cheers!
I, too@, am grateful for your work and helpful summary of where things are. I have MS and Hashimoto's as well as psoriasis. I am also a Type 2 diabetic and I think we need to know more about the relationship between T2D and MS.
Professor G
I have PPMS.
Lung muscles that control breathing became effected three years ago. MS causing muscle weakness.
On oxygen, and a machine that breaths for me. No Fix.
Add to your list Multifunctional Motor Neuropathy MMN
And
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a slowly developing autoimmune disease that affects the peripheral nervous system.
Used IVIG orphan drug from Australia. I am in USA. That made MS symptoms worse.
Now going to Neuro Ophthalmologist At University of California, for part of what you describe.
On Copaxon for a decade. Neurologist wanted to change, but side effects of others effec lungs. And relapse is 100% to get off copaxone.
Main problem is PFT is at 10% with no eay to increase.
Thoughts? Steroids did nothing for eyes.
Yes, CIDP is can occur in pwMS and is well described in the literature and is often referred to as central and peripheral demyelination. I have seen one patient who had MS and was subsequently diagnosed with MMN. This patient had a monoclonal gammopathy and eventually developed a myeloma. I am not sure what happened to the patient as he was under the care of another consultant.
The message is that pwMS also get other diseases and whether MS predisposes them to these diseases or it is just bad luck is a moot point. The treatment of two inflammatory conditions simultaneously is often challenging and there is little evidence to guide decision making here. MMN and CIDP often require IVIG and/or steroids, which probably have little effect on MS. Therefore both conditions probably need to be treated simultaneously.
I Think this comes down to a Quality of Life for the MS patients. What if IVIG caused a virus? Or MS to speed up, as the mechanism of IVIG adding so much protein to liver. What if you have CKD, as it effects Kidneys? And changing DMT is not a option, as others may cause lung infections.
It wont help lung issues, a turning point of reality.
Can vitamins, or amino acids help in any way?
Hi prof G, I am your patient and have intermediate uveitis and ankylosing spondylitis.
Interestingly, and consistent with your observations, following the birth of my first child I suffered from post partum thyroiditis (without any noticeable MS relapse).
Thank you for this information! I don't currently have any co-morbid autoimmune diseases to complement (ha!) my MS, but I will be vigilant for any vision issues and much more aggressive in seeking treatment should symptoms arise.
After 26 years with rr MS, I was diagnosed (2 yrs ago) with eosinophilic fasciitis. At that point, I had been on Ocrevus for 3 years. My neurologist and rheumatologist decided I would continue on that and I also started taking methotrexate and prednisone 12 months ago for EF. I haven’t had any flares of the EF during this last year. ( I’ve read that rituximab has been used as a treatment for EF, so I wondered if O had any impact on it?)
This is the first I have heard of someone with MS getting eosinophilic fasciitis. Ocrelizumab and Rituximab work similarly, so I'm not sure if Ocrelizumab can necessarily be blamed for the EF. I would need to explore the literature for more information on this.
Thank you. Yes, that’s what my neurologist here thought as well (Ocrevus unlikely to have caused EF). Don’t know of anyone in my family who had EF. My mother did have MS, but we don’t know that she had any other autoimmune disorders.
I have MS (diagnosed 2004) and have had a number of episodes of uveitis over the years. At least one episode may have predated my diagnosis - I don't know because I didn't know I had uveitis at the time, if that makes any sense. Each time I've had uveitis it was treated by my local ophthalmology department with steroid eye drops.
My neurologist has never been involved and probably doesn't know about the episodes because I didn't know that uveitis was classed as a co-morbidity of MS. Given how infrequent the episodes have been, I don't know if he needs to be involved. I've been taking Fingolimod since 2009 which doesn't seem to affect my uveitis one way or the other.
I've had psoriasis once. The skin around my belly button went all crusty. It cleared up before I got around to seeing a doctor about it so it remains undiagnosed. Not long after that my MS was finally diagnosed and I started on DMF - in hindsight this might just have been the best choice as I haven't had a relapse or a recurrence of the psoriasis! I wonder whether the psoriasis would have come back if I'd chosen alemtuzumab.
My son was diagnosed with uveitis 6 years after being diagnosed with MS.
Thinking a bit more about co-morbid autoimmune disease in people with MS it occurred to me that my thyroid problem was diagnosed when I was seeking a reason for fatigue (also picked up pre-diabetes) People with MS are likely to have had more tests than the average person during their diagnostic journey and other conditions will be uncovered. This may skew the figures for some conditions. Uveitis is perhaps more likely to declare itself without testing so it's relationship to MS is perhaps more genuine.
Grateful for this, and love all the comments here.
The topic of multiple ADs is relevant to my experience with 30 years of Crohn's and more recently MS. I was taking entyvio (anti-integrin targeting gut receptors), and developed MS. I don't think it's a really a moot point as to whether a therapy triggers something like MS, just because knowing that better would help other patients understand the risks, and help doctors.
I stopped entyvio and was given anti-CD20 (kesimpta) for the MS and it had a very dramatic negative effect on my digestive health (nausea, weight loss) that lasted for months. I eventually convinced my GI at the time to give me prednisone which righted my ship. Frankly, this sounds a lot like your patient.
During this process I found this paper - https://pubmed.ncbi.nlm.nih.gov/34457039/ . It lays out guidelines. Sadly, i don't think many doctors are aware of them.
Also can recommend to others this video - https://www.youtube.com/watch?v=J5vrly1miYo&t=8s&ab_channel=Dr.BrandonBeaber
Thanks!