Q&A 69: Inflammatory bowel disease and MS

The impact your conditions are having on your quality of life and social health can’t be underestimated. You need help.

Case study:

I read with interest about anti-CD20 treatments being linked with an increased risk of developing Crohn's disease, but is there any evidence relating to dimethyl fumarate (Tecfidera)?

Can long-term use of fumarates cause malnourishment or other gastro issues?

Do you ever advise stopping DMT in a bid to improve general health?

Is there anything else I could switch to which would be as effective as dimethyl fumarate but with no increased Crohn's or ulcerative colitis risk?

AI-generated picture

Background:

I have RRMS; the diagnosis was confirmed with lumbar puncture. I have been stable with no evidence of inflammatory disease activity (NEIDA) since starting Tecfidera as my first DMT in 2017. I have a low lesion load - the primary relapse, which led to the diagnosis, was due to a C2-C3 spinal cord lesion in 2016 affecting my left side.

I am 55 years old and female. My main disabling symptoms at present are fatigue, balance and dizziness.

I have an ongoing gastrointestinal issue, which is undiagnosed, but stool tests show persistently raised calprotectin levels of approximately 120 with no infection. Calprotectin test has never been done during an acute flare; it is always a couple of weeks later when I can get an appointment.

I am waiting for yet another colonoscopy. Previous colonoscopies were reported as normal. Waiting times for gastro appointments here are long - previously, I waited 12 months and then paid to go private.

I also have a lifelong history of IBS (diarrhoea) and have done full FODMAP, which has improved it somewhat. Gallbladder removed in 2019 due to dysfunction and inflammation (no stones) with Rokitansky- Aschoff sinuses. Dx of likely Orofacial Granulomatosis due to lip swelling, splits, and mouth soreness. Acid reflux and gastritis. Taking PPI

Current issue:

I periodically feel suddenly 'poisoned' watery diarrhoea, abdominal pain, dizziness, headache, joint pains, and low blood pressure. This puts me in bed for a few days, then on porridge and water until the pains subside.

These episodes are becoming more frequent and more prolonged.

I am now underweight (BMI 16.8) with low muscle mass and feel malnourished. My hair is falling out, my skin is itchy, and my nails are weak and flaky.

Once I am over an episode, I have intense food cravings but have to stick to my plain, home-cooked, low-fat diet, or it provokes a flare, and I lose more weight.

This has had a massive impact on my social life, holidays, and ability to visit people. I miss not being able to share meals and eat out, and if I am invited to someone's house, it is very awkwar,d and I can barely eat anything; using other people's bathrooms is very embarrassing.

I try to exercise but cannot consume the recommended amount of protein to put on muscle (I've tried everything) and feel very weak during exercise. I did have ferritin levels checked, and they were in the normal range, but my RBC count is sometimes slightly below normal.

I drink only water and herbal tea, I eat some cheese but no other dairy.

Before my MS dx, I was slim but not underweight. I did not have any apparent gastro side effects associated explicitly with starting Tecfidera, but perhaps I didn't notice them among my IBS symptoms.

Your thoughts would be welcome, mainly as it has been 18 months since my last neuro appt, and no appointment for the future has been received. It has been ten months since my previous phone appointment with my MS nurse.

I am considering stopping Tecfidera for six months just to see if things improve.

However, I have one sister who died of MS and another with PPMS, so I would like to make an evidence-based decision, but at this point, I am running out of options.

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Prof G’s answer

Q1: I read with interest about anti-CD20 treatments being linked with an increased risk of developing Crohn's disease, but is there any evidence relating to dimethyl fumarate (Tecfidera)?

In short, no. But ….