Bowel inflammation - any link to PMR/GCA?

[Broseley]

I have had problems with diarrhoea for several years now. I have had bad reactions in the past to sertraline (antidepressant) and amoxillin, with constant diarrhoea for several months. However my calprotectin levels (measuring gut inflammation) were normal. Since diagnosis I have been getting frequent attacks several times a week. My calprotectin levels were 477 (indicating IBD) then 159 4 weeks later (indicating IBS). GP has tested me negatively for bowel cancer and coeliac. I tried cutting out magnesium, omeprazole and AA, all with no effect, though I have now stopped the AA completely. I know AA stays in the body for some years, so still suspect it as being the cause.

My GP referred me to gastroenterology, appointment was this week. He has requested a colonoscopy and agreed with me it might be microscopic colitis, which a friend has. He said that the calprotectin test measures inflammation in the gut, but that the source of that inflammation could be elsewhere in the body. I'm wondering if there is any link to PMR/GCA, and the cause might be related to that rather than the AA?

I am now down to 1.5mg pred and my PMR and GCA seems to be in remission. But I haven't had a CRP/ESR test since July, and my levels were rising slowly but in July my CRP was down to 8 and ESR 25. Rheumy was happy not to see me again till February. He does the blood tests, not my GP who has nothing to do with my PMR/GCA.

I'd appreciate your thoughts.

[PMRpro Ambassador]

Several people have in the past been diagnosed as coeliac or with microscopic colitis - whether there is a direct link is difficult to say but they are autoimmune conditions, once you have one, you are at a higher risk of developing another. Interestingly, coeliac disease can present very intermittently - a friend only got his diagnosis in his early 60s when it was realised his bouts of gut problems tended to follow grill parties where lots of bread and beer was indulged in. Normal diet hadn't produced anything notable.

[Broseley in reply to PMRpro]

OK so it is a separate issue from PMR? Is it a different type of inflammation, or if not, why doesn't PMR affect the gut?

[PMRpro Ambassador in reply to Broseley]

Same reason it doesn't affect other parts of the body - it is just so. The inflammation that causes the symptoms we call PMR mainly affects the soft tissues around the joints - that is what can be SEEN. Something affects muscles but there is no provable effect. GCA inflammation affects a certain part of the artery wall in medium sized arteries. It may be the same in large arteries but it is a bit difficult to prove since it would require a biopsy from living patients not being subject to open heart surgery or the like. There are limits to what it is reasonable to ask a patient to undergo!

[Broseley in reply to PMRpro]

"Same reason it doesn't affect other parts of the body - it is just so" - I wish they could find out exactly how it all works!

[PMRpro Ambassador in reply to Broseley]

Actually - so do they! It is the same with almost all autoimmune disease. When they can identify the mechanism, they will be in a position to develop treatments.

[SheffieldJane]

Pred could be a factor. I think it is with my on going lower abdominal pain, bowel movements are never normal. I have been diagnosed with diverticulitis, hiatus hernia and suspected IBS. The trigger was adding Tocilizumab into the mix - not on it now.

I am worse for wheat and thought my symptoms fitted microscopic colitis in my search for a diagnosis and remedy.

[Broseley in reply to SheffieldJane]

Thanks, that's interesting. Hopefully I will be able to come off pred in the next few months. I've always been sensitive in that area, but luckily unlike you I don't get any pain. And it always happens in the morning after breakfast (or after pred!). The gastro chap got me to look at the low FODMAP diet specifically from this site: gloshospitals.nhs.uk/media/...

It might help you. Looking through it I avoid many of those foods anyway, as over the years I've learned they upset me. My big weakness is chocolate biscuits though!! And I do love cauliflower - though don't eat it very often. Gastro man said if the colonoscopy doesn't reveal anything they'll treat it as IBS and ask me to do this diet.

[SheffieldJane]

Thank you for this. I have a particular point of pain where the appendix is and have had colonoscopies, endoscopy and the camera endoscopy. The pain is gnawing unlike a cramping bowel. I wonder if taking gastric coated Pred means that the caustic tablet has damaged my lower intestine when it finally dissolves?

[PMRpro Ambassador in reply to SheffieldJane]

The tablet is hardly likely to be caustic itself. The difference is that it dissolves in a more alkaline environment - as other parts of the gut are by design and nature.

[Broseley in reply to SheffieldJane]

Is it a bit like a stitch pain? I used to get that randomly as a child. It just resolved itself eventually and I never knew what caused it.

[SheffieldJane in reply to Broseley]

More like a boil or an abscess then it spreads along my lower abdomen. I worry that it is something the tests missed. I had to stop the colonoscopy at one point due to the pain, and he did seem to stop.

My sister used to get a colicky pain as a child, you’ve just reminded me. That was never diagnosed as anything.

[Broseley in reply to SheffieldJane]

That's odd, especially if they were specifically looking for something that might cause it.

[SheffieldJane in reply to Broseley]

I know, I just have to trust I suppose.

[Hephzi]

I have microscopic colitis. Diagnosed 2 years ago. Remission for 1 year. Started getting potentially PMR this year. Currently waiting follow up with rheumatologist with hopefully diagnosis and treatment.

[Broseley in reply to Hephzi]

Thanks. I hope you get sorted. How do you manage your MC?

[Hephzi]

I had 2 rounds of budesonide. Both worked well but symptoms returned. After a summer of experimenting with cutting out certain foods, everything was ok. I am on no medication. I don’t have artificial sweeteners, caffeine, lactose and garlic/onion. I did cut out gluten but introduced it again shortly before remission. I have no idea if any of this makes a difference. My gastro did say sometimes it resolves itself. I just hope it continues Good luck

[Broseley in reply to Hephzi]

Thanks. I do use sucralose but only in coffee (decaff). I've used it for years before all this started and it's OK on the FODMAP diet too. Red wine upsets me most, but I've never been able to eat onions or leeks. Garlic is fine.

Of course I haven't been diagnosed yet though.

[Hephzi in reply to Broseley]

I think triggers are quite personal to each person

[Broseley in reply to Hephzi]

Just wondered, do you take pred as well as budesonside?

[Hephzi in reply to Broseley]

I have only taken budesonide for MC as it’s gut specific. Pred isn’t recommended for MC. I don’t take anything now. But may need pred for PMR

[Broseley in reply to Hephzi]

I looked up budesonide and it said pred can also be used but has more side effects. If you have PMR they will give you pred. I wonder if it will also help the MC? I was on 40mg pred to start with, but still had diarrhoea.