Gastrointestinal inflammation with PMR

Hi, I am getting rather worried as I have developed gastrointestinal inflammation. I have polymyalgia rheumatica & have been taking prednisolone since Aug 2020 starting at 15mg & now tapered to 6mg. Anyone else haven’t have had the same problem?

[SnazzyD]

Hello, could you be more specific, for example, where in the gastrointestinal tract is the problem and has it been diagnosed formally? Also, what are your symptoms and have you been taking any sort of stomach protecting medication at all?

[Hidden in reply to SnazzyD]

I noticed changes in my bowel movements a few months ago. I sent off a poo sample for it to be tested for bowel cancer but thankfully the results were negative & in the meantime had a series of blood tests & took samples also into the GP’s surgery. Yesterday I had a printout of all the results which suggesting the possible causes of the inflammation in the samples, which included IBD, infection, polyps & neoplasia. I have been taking Omeprazole for a hiatus hernia for many years. Will be contacting my GP on Monday asking for further investigations to be made for my peace of mind.

[SnazzyD in reply to Hidden]

Good idea. Was the test for bowel cancer the occult blood test? If so it still doesn’t rule out bowel cancer, just that there isn’t a positive sign of bleeding that almost certainly following up. You may need a scope done so they can look. Saying that, it isn’t uncommon here for people to report that on lower doses of Pred they get allergy and gut issues. I had IBS symptoms for months when I got below 7mg that finally settled down and certain foods suddenly became no go. I’m just mentioning this in case they draw a blank.

[Hidden in reply to SnazzyD]

Thanks, that’s really reassuring & yes I think it was the occult blood test & I knew it didn’t rule out bowel cancer.

[Umufu in reply to SnazzyD]

Dear SnazzyD, you are spot on. I am living proof of that, had 2 negative occult blood stool tests which did not detect my rectal cancer. Only when there is active bleeding during the test will it be positive. The only guaranteed investigation is a sigmoidoscopy or even colonoscopy. Time might be of an essence.

[Hidden in reply to Umufu]

What symptoms apart from loose bowel movements did you have before diagnosis. Did you also have poly myalgia rheumatic a & taking prednisone. Hope you’re doing well now.

[Viv54 in reply to Hidden]

On Friday my husband went to the Dr with your symptoms ! he does not have PMR. but he did have a hernia and and other problems with stomach ache , bowel movements etc. Hes going to have blood tests, but for now the Dr has taken him off Omeprazole ,. He has taken it for many years, but it know could be the cause of these problems . May be you could be in the same boat ! How strange that your question popped up and he went to the DR on Friday! Hope this may help. Good Luck VIv .

[PMRpro Ambassador]

"GI inflammation" is a rather wide-ranging coverall. Where in the gut in particular?

[Hidden in reply to PMRpro]

I noticed my bowel movements changed a few months ago to be regularly much looser but not exactly diarrhea. This had never happened before & is continuing. I have sent samples off for testing for bowel cancer which thankfully came back negative but my GP said there is definitely some inflammation showing in my poo samples taken into the surgery which the printout I received suggests it could be IBD, infection, polyps, neoplasia, and NSAIDs. I am contacting the surgery on Monday asking for this to be investigated further as I am now rather worried it could indeed be serious.

[PMRpro Ambassador in reply to Hidden]

Or it could be a change in your medication - a supplier may use a different brand of generic with a different filler in the tablets.

[Hidden in reply to PMRpro]

I don’t think I have had any different brand of generic in my medication.

[butterflyfarm in reply to PMRpro]

I understand that this is not permitted in the U.S. Personally, I have noticed that my latest generic Omeprazole is now yellow and not white. Fortunately it has not affected me!

[PMRpro Ambassador in reply to butterflyfarm]

Prescriptions in most of Europe, including the UK, are written for the substance rather than a brand name - you might get the branded version, it depends what the supplier is distributing. If it must be the branded version the doctor must write that on the prescription and say it is not exchangeable.

[123mossie]

Yes you’re right to ask for further investigation given that your symptoms persist, a colonoscopy to check things out would be ideal.

[Hidden in reply to 123mossie]

Hi, the GP wants me to contact him which I intended to do anyway. Will report back after I’ve spoken to him. Thanks x

[mtrafter]

I have had PMR for 4yrs have had GI issues constipation, diarrhoea, bloating , upper abdominal pain and wind infrequently until about six months ago. Had a flare of PMR and OA, GI symptoms became more frequent with an associated raised ESR 81 , CRP 4 was on 7.5mg pred at the time did the usual sick day protocol for 2 wks the flares settled down but not GI symptoms or the ESR 51. Saw Rheumy and Gastro specialist, had CAT, MRI, ultrasound , colonoscopy and gastroscopy and finally after reducing to 5mg pred for a week in a hurry (ugh!!!) a PET scan to check for inflammation, tumours, or any nasties. No nasties found, except for small hiatus hernia, some minor thickening of the gallbladder, removed 5 small polyps and no change to my diviticular disease or arthritis in my knees and right shoulder.

I am no closer to finding out why my GI symptoms and raised ESR symptoms persist while my PMR is reatively stable I am back to 7.5 mg Pred. I wondered if the Pantoprazole I have been on since the beginning could be contributing.

It is good that you are wanting further investigations we tend to blame everything on PMR and sometimes it's not. It such a puzzling and confusing disease more so if you have comorbidities.

Hope you find some answers soon.

[Sangu1 in reply to mtrafter]

Pantoprazole reduces GI acid production and sometimes that could lead to adverse effects on the Gut microbiome which in turn causes raised ESR. Could be one contributing factor towards it. I understand you need it to protect your stomach.

[PMRpro Ambassador in reply to mtrafter]

The various PPIs CAN cause all the problems you describe and not necessarily from the start. The first step is to try a different one - and then to try an H2 antagonist such as famotidine or cimetidine. They are old - and PPI marketing claimed PPIs were SOOOOOOO much better that they are now used far more. In fact the difference really isn't that great and the adverse effects are different so it shoud be horses for courses. My husband can't use PPIs, it is awful, but he seems to be fine on famotidine.

[S4ndy in reply to PMRpro]

My Gastroenterologist took me off of ppi's as he felt that they were contributing to my ibs and gastric problems. I have had long term bowel issues but my doc did all blood tests plus colonoscooy, endoscopy and small intestinal mri scan. Found some inflammation in stomach but nothing unusual about my bowels. So treated the gastritis and then I did the FOD MAP diet over the next 18 months to work out what foods I need to avoid/be careful with. It's hard to do but certainly helped me. Turns out there's lots of foods I am sensitive too including Lactose. Hope you find a solution for your digestive issues as it can have a huge effect on your wellbeing.

[PMRpro Ambassador in reply to S4ndy]

I have no problems at all - cast-iron gut 99% of the time

[mtrafter in reply to PMRpro]

Am seeing GP next week will suggest I try alternatives to see if there is any improvement. Thanks for the suggestions.

[mgrogers99 in reply to mtrafter]

Ditto to what you wrote "we tend to blame everything on PMR and sometimes it's not".

[Predsharer]

Could it be something to do with long term use of Omeprazole. I used it for a couple of months and had the same symptoms as you described. It limits the acid in your stomach and I clearly needed more to digest my food well. I decided to stop taking it and used other more natural methods to protect my tumm and things went back to normal. Maybe you could suggest this to your doctor.

[Seacat30 in reply to Predsharer]

I have stopped using the PPI Lansoprazole for similar reasons.

[Brownbetsy]

Hi everyone, I’ve been following this site daily since March 2021 when I was diagnosed with PMR. I was put on 15 mg prednisolone which was then raised to 20mgs when my markers were still rising. In May I had the worst diarrhoea I’ve ever experienced. My doctors were of no help they told me I had to ride it out. After 3 weeks I learnt to manage the problem ( not get rid of it) . I lost 12 lbs in 3 weeks. It was then I decided to see a consultant privately. To cut a long story short, when I lost a stone the alarm bells went off and he has made me do a fast taper which has been awful, I’m now on 5 mg but I am having a colonoscopy this Tuesday. I’m not a negative person so hoping it’s nothing sinister. You are quite right to insist this is investigated further. Best Wishes Pat

[Hidden in reply to Brownbetsy]

Thanks. A colonoscopy is what I was going to ask the doctor for. I wish you luck with yours & do let me know how you get on xxx

[PMRpro Ambassador in reply to Brownbetsy]

Are you on anything else alongside the pred?

[Hidden in reply to PMRpro]

Simvastatin, Omeprazole, also Adcal, vitamin D3 , Alendrotnic acid & turmeric capsules. I’ve been taking statins & Omeprazole for years.

[PMRpro Ambassador in reply to Hidden]

Try dropping the turmeric at least and also the AdCal - and if it were me I would stop ALL of them briefly, other than the pred none are that essential, and start them again one by one, possibly substituting famotidine for the PPI. Omeprazole and simvastatin can both cause loose stools but that would seem less likely since you have been on them for years - but the combination of 4 different medications which ALL list diarrhoea as an adverse effect may simply be too much, Large amounts of vit D can add to the problem.

[Hidden in reply to PMRpro]

Thanks. My GP wants me to contact him tomorrow re the tests (nothing to worry about it said in the letter) I’ve had & I shall ask for further investigation but also mention the meds & supplements too.

[mtrafter in reply to Hidden]

Unfortunately I found that I could not tolerate Tumeric! Exacerbated my symptoms.

[Hidden in reply to mtrafter]

Interesting, as I have not been taking the capsules for long.

[PMRpro Ambassador in reply to mtrafter]

Using turmeric in cooking seems to be OK for most and does help some. The dose in the capsules is pretty high and often causes problems.

[mtrafter in reply to PMRpro]

I used to add grated fresh turmeric and ginger to my home made kombucha and felt it helped my symptoms. After my flare 6mths ago thought the kombucha was a problem but maybe it was the turmeric. Have not had it since and still have the problem but not as severe. Its so confusing trying to work out what the triggers are.

[Brownbetsy in reply to PMRpro]

Hello, yes I am . I have been taking phenytoin for 50 years, but now pred, omeprazole, & ad cal. I stopped taking the Adcal of my own accord . The worst part for me at the moment is total exhaustion which I understand is because I’ve had a rapid taper

[PMRpro Ambassador in reply to Brownbetsy]

Not just the taper - overwhelming fatigue is also an inherent part of almost all autoimmune disease. All the pred does is relieve the inflammation, which does contribute to the fatigue, but the actual disease process continues, unaffected by the pred, and so you tend to feel as if you have ongoing flu as the a/i part attacks body tissues and makes you feel ill. Plus you have this ongoing gut problem - have you had bloods done to be sure you aren't short of various nutrients or dehydrated as a result? How did the onset of the gut problems relate to starting the medication? Omeprazole itself can cause horrendous problems - ironical since they tell you it is to "protect your stomach"!

[Brownbetsy in reply to PMRpro]

Thankyou for that info! I have gained more information about PMR from this website than my doctor who told me to go on nhs website! I have had regular bloods done, the last lot of bloods about 3 weeks ago. The onset of the gut problem did coincide with the pred being raised from 15 to 20, but I was told it had nothing to do with medication and I had to ride it out.

[PMRpro Ambassador in reply to Brownbetsy]

I don;t believe in coincidences when something happens so close to taht. It may well be your gut doesn't like one of the fillers in the tablets, at lower doses it isn't enough to bother you but that was enough to upset the applecart. Or the extra pred plus the PPI upset you. Change in bowel habit should ALWAYS be investigated.

[Gary1310]

Yes, I have the very same problem for over a year. Started August 2020. I experienced the worse diaharrea , ever. The loose stools have continued till now. I try to watch my diet but it has not improved much. I was on Prednisone from January 2019 after diagnosed PMR. Completed my taper Feb 1, 2020. Thought it may be a way the body eliminates lymph fluid. I did have swelling of hands and feet.PMR has dramatically changed my life.

[PMRpro Ambassador in reply to Gary1310]

What medications are you on?

[Gary1310]

Actually I only take supplements. Multi vitamin for Macular Degeneration, and all the other regular D3, Calcium, zinc, c, potassium….etc.,stopped Lipitor.

[PMRpro Ambassador in reply to Gary1310]

It has been investigated I trust? Change in bowel habit should never be ignored.

[Noosat]

I have a mall gastric ulcer which will flare if too much acidic or hot spicy food. I take food with prednisone as it is a known flare agent for it

[PMRCanada]

I’ve recently been diagnosed with diverticulitis, and a ct scan revealed the infectious phledom (sp?). I’ve had to alter my diet to allow for bowel rest, and am scheduled for a follow up colonoscopy next month. I don’t take any other medication except the recommended supplements (calcium, K2, D3), and magnesium.

Have you had a colonoscopy? Might aid in diagnosing the cause of the inflammation.

[Sunnyday365]

Hello, sorry for your gut problems. I too have them. I started Pred in April 2021 when my PMR was officially diagnosed and thankfully for this site, have been managing a slow taper and the emotional side, as at 55, I was not ready for this kind of slow down. Last month my ulcerative colitis flared after a year of calm. Very much surprised me as Pred is sometimes given to reduce UC flare. Not sure how to calm it all down now?? Using some supplements but frustrated. GI wants to see me now, which I guess is a good route to go. A shout out to everyone's stories, they are most helpful.

[Yealink]

I was taking Lansoprazole as prescribed by my GP when I started Pred in January this year, it caused terrible bowel problems, I was going up to 10 times a day! Had a colonoscopy and found I now have Microscopic Colitis which could have been caused by Lansoprazole, according to the Royal Society of Gastroenterology and my consultant. I hope everything goes well for you.

[nuigini]

Not sure if my history will contribute anything, but I had the same undiagnosed issue with bowel movements (BMs) for over 20 years, long before PMR came on scene. Only diagnosis I ever got was IBS. About 5 years ago I started having to get up in the night for BMs, started getting nausea before BMs & occasional cramping. Got a new GP doc in 2018 who did blood work for celiac disease, which I'd never had before. I was off the scale for positive celiac, confirmed by a endoscopy. Over the last two years most issues have been resolved by a gluten free diet, but not all. A recent colonoscopy revealed microscopy colitis, which had not showed up in the colonoscopy 2 years ago. Non of this is related to PMR or prednisone as far as I know.

[Hidden in reply to nuigini]

Thank you for your reply. I have a nasty feeling my bowel problem has nothing to do with PMR either but I am going to speak to my GP tomorrow & will tell him my concerns & I intend to ask for a colonoscopy or something similar. Wish me luck

[nuigini in reply to Hidden]

I certainly wish you luck!

[Hidden in reply to nuigini]

Thank you x

[Hidden]

It's probably a side effect of supporting Hull City!!

[Hidden in reply to Hidden]

I think there’s a time & place for a funny remark about being a Hull City supporter, but this is the wrong time or place! I am really scared that I may have bowel cancer & hoped I would receive reassurance & helpful advice, which I have done. I had kidney cancer some years ago too which has made me more anxious. Sorry Billhill but I’m not amused, although they’ve had a rotten start to the season!!

[Hidden in reply to Hidden]

I apologise if my comment was upsetting I saw you had lots of sensible responses. I just thought a bit of banter wouldn't go amiss. We need to keep our sense of humour PMR is a dreadful condition I originate from York I wish you well

[Hidden in reply to Hidden]

Thanks Billhill. My sense of humour has left me at the moment but when I find out what this problem is & hopefully find it isn’t anything life threatening I’ll be back to my normal jolly little self! I agree PMR is a dreadful condition & prednisolone has some lousy side effects too but is very effective. I now live in Manchester......no cracks about football teams please, but when we lived in Hull we used to visit York frequently. It’s a beautiful city & I miss Yorkshire. Thanks for your good wishes. Goodnight

[YorkieShowBreed]

It is documented rather well that IBS and UC preclude PMR. I started with Diverticulitis and opted for the surgery which left me with some IBS afterwards. Not long after surgery I developed PMR. My surgeon wrote me a prescription for Medical Probiotics and I am glad to say it did wonders for the IBS and the PMR. He told me that taking prednisone would mask the irritation in my bowels and I could develop a blockage or worse a perforated bowel. My Rhumy doctor didn’t know anything but prednisone which was prescribed at 15mgs so I went with the Gastrointestinal Surgeons advice and only took the Medical Probiotic. I am glad it worked.

[softekcom]

This thread has been an education, so thank you All.

I experienced bowel changes in July last year and tests showed inflammation and blood. The colonoscopy and endoscopy that followed came back all clear.

But over the past few months the bloating has got worse. And <apologies to the men here 🙏🏾> signs of perimenopause. I asked for further tests to rule out anything serious and they did a test to rule out ovarian cancer. Relieved. (For some reason test results are not automatically sent to you and nor are they visible on the app/website. I don't know what they tested for or the name of the test. ) I have also been referred for a scan.

I've been avoiding gluten, dairy, sugar, spicy food - the usual culprits - but no improvement with the bloating at all. Massive fatigue. No weight loss. Yesterday, the GP suggested the FODMAP diet. So here I go...