PMR and gastroenteritis : Diagnosed just over... - PMRGCAuk

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PMR and gastroenteritis

waltztherapy profile image
26 Replies

Diagnosed just over 2 years ago, started on 15mg prednisolone, now down to 5.5. Very slow tapering programme, following advise here, working well with flare-ups managed as advised. Suffering an episode of gastroenteritis, which is taking longer to clear up than I would normally expect. Able to take my pred dose with porridge in the morning, but a reduced appetite after that. Now into day 5 of the gastro bug and still feeling nauseous and weak. The PMR control seems unaffected, I am happy to say, so hope to stay on 5.5 for at least 6 weeks, or longer. Is there any relationship between PMR, prednisolone, and a bout of gastroenteritis please? Topping up electrolytes as advised and sipping water often. Reduced physical activity and food intake are not helping. I know I need to be patient, just wondered how others handled this combination of illnesses. Any advise much appreciated, as always. Many thanks dear valued members.

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26 Replies
SnazzyD profile image
SnazzyD

Can’t say for certain what your cause is but gastroenteritis isn’t a ‘PMR thing’. Upset gut at doses well under 10mg can be a sign of low adrenal function when the adrenal glands are struggling to wake up once the Pred dose drops to a level where they need to top up with natural cortisol. However, if you were absolutely fine one day and not the next I would expect you to get that if you suddenly did something unusually stressful or active prior to the issues. If your adrenal glands were caught napping and didn’t dial up extra output of cortisol to compensate for the extra demand you could get these symptoms. Did the upset gut come with any of the viral add ons like fever, headache and muscle aches?

waltztherapy profile image
waltztherapy in reply toSnazzyD

Thanks SnazzyD, for your useful information.I did feel hot, and have a horrible headache, but these have abated. Wondering what I can do now to help, exercise through pain?

Thanks again.

PMRpro profile image
PMRproAmbassador in reply towaltztherapy

NOT exercise through pain!!!! Pain is there for a reason though often a gentle walk will result in less pain.

waltztherapy profile image
waltztherapy in reply toPMRpro

OK yes of course you are right. Thanks. Too weak for more than a short walk.Wondering if I should increase the pred temporarily, while the body deals with the gastro issue?

PMRpro profile image
PMRproAmbassador in reply towaltztherapy

If it IS an infection. probably. But if it is adrenals, all it does is postpone the evil day.

waltztherapy profile image
waltztherapy in reply toPMRpro

Think it could be an infection because if the headache abd temperature changes. Would you recommend increasing my pred from 5.5 tp 6 or 7 for how long, please - feeling so awful....

Thankyou

PMRpro profile image
PMRproAmbassador in reply towaltztherapy

Try it and see how you get on. Impossible for us to say what you need, ANd if it goes on - speak to the GP because you may need to be tested and maybe abx.

waltztherapy profile image
waltztherapy in reply toPMRpro

Will do of course. Thankyou, much appreciated.

.

SnazzyD profile image
SnazzyD in reply towaltztherapy

could have been a gastro virus whixh can last a week in those who are no longer as young as they were. Much beyond a week of loose stool, nausea or fever needs a medical opinion .

Not sure what good exercising through pain is going to achieve apart from stressing out the body that has obviously got a lot on its plate right now. Why give it a higher hurdle? Sometimes rest is needed or at most a gentle amble. This isn’t like a sprained ankle! Do read DL’s link on adrenal function as at worst it’ll give you information you end up not needing or at best it might save your life, seriously.

waltztherapy profile image
waltztherapy in reply toSnazzyD

Thankyou I will.Serious worry then.

PMRpro profile image
PMRproAmbassador

IS it a bug causing the symptoms or could it be adrenal insufficiency - those are also typical symptoms of low corticosteroid levels? You are at a dose where it may no longer be enough to fully replace the fact your adrenals aren't producing their own corticosteroid, cortisol. Pred does that at the higher levels but now you are into a sort of no-man's land where the pred isn't quite enough but the adrenal function is still dormant. It can take some time to wake up as you lower the dose and you do, as you say, have to be patient. And I hate to mention it - but as you get older, it is likely to take longer as adrenal function fades with age too.

waltztherapy profile image
waltztherapy in reply toPMRpro

Thankyou so much for your kind reply PMRpro. I didnt know that adrenal insufficiency caused similar symptoms to those of gastroenteritis. Wondering if I should try to push exercises back into place (to a lesser degree of course) despite the gripey gut and tiredness. Thankyou, this information is very helpful. I'm in denial of the age thing, of course! X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply towaltztherapy

Info on adrenals - would agree they are having some effect -

healthunlocked.com/pmrgcauk...

waltztherapy profile image
waltztherapy in reply toDorsetLady

Thankyou

SheffieldJane profile image
SheffieldJane

Following being prescribed Actemra for GCA/LVV I developed lower, right side abdominal pain to such an extent that I terminated the prescription after almost a year. My symptoms continued to get worse and developed into almost constant pain across my lower abdomen, always starting on the right side. My only medication was Pred that I had taken successfully for PMR for 4 years. My symptoms included the need for strict dietary exclusions especially baked goods, wheat, lemons, acidic food and drink, all alcohol and many more odd foods. I would have periods of vomiting and my bowel movements were almost always loose, any constipation causes the pain cycle to begin and I do fear it. I was put on a cancer pathway and had Colonoscopies, Endoscopies and an exploratory swallowed camera endoscopy. I saw a gynaecologist and had a couple of scans. The diagnosis from all of the investigations was Diverticulosis with frequent episodes of Diverticulitis , with pain, extreme food sensitivity and bloating, sudden vomiting and diahorrea . I also have a small hiatus hernia. Any deviation from strict dietary restrictions causes months of the more severe symptoms. I now take Lansoprazole to protect my abdomen from coated Pred and Buscopan that seems to ease the pain a little and prevent sluggish bowel triggering symptoms. Taking 1mg of uncoated Pred once, caused severe abdominal pain that felt like a boil on the right inner side of my abdomen. I was taken off the cancer pathway and it seems that nothing further can be done. I only recount all of this because I am not really satisfied with the outcome, these symptoms came out of the blue and were initially mild. I feel that Actemra may have been the final straw and that these symptoms are linked to Pred. Bad bouts can last for months and I am rarely pain and other symptom-free about 3 years on. IBS has been suggested. I initially thought that this was an infection like Gastroenteritis. All I can advise is to take this seriously. Please let me know your outcomes. For me I think long term Pred was the trigger. Sorry I haven’t got anything more positive to share, yet.

agingfeminist profile image
agingfeminist

i find the only way to get the gut to settle down is to use loperamide (you can get it over the counter at your pharmacist (one brand name is imodium). You can give it to kids so really not a nasty but v helpful...but if it persists after a day's dose go to doc for check up. Good luck!

waltztherapy profile image
waltztherapy in reply toagingfeminist

Thankyou. That may be worth a try.Today, day 6, feels improved, it's a very gradual improvement that shows eventually. I can see that a nudge with something like loperamide could be beneficial. Thanks.

gingerraspiller profile image
gingerraspiller in reply toagingfeminist

loperamide works for me too! I periodically have loose stool since I have been on Prednisone. At the first sign of trouble, I take 2 pills of loperamide.

waltztherapy profile image
waltztherapy in reply togingerraspiller

👍

Pr0jection profile image
Pr0jection

I don't know if this will help but I suffer from diverticulitis and gastritis from time to time. The only thing (apart from medication) that has helped me tremendously is goat's kefir which also contains Vit K2, another good reason to take it. All the best.....

waltztherapy profile image
waltztherapy in reply toPr0jection

I welcome your kind suggestion. I find yogurt very soothing, so it sounds like the goat's kefir will have similar benefits, worth a try. Thanks.

Thelmarina profile image
Thelmarina

I had a couple of horrendous episodes and was referred to a gastroenterologist who sent for a scan. Diverticulosis was diagnosed, apparently quite to common us deliciously mature people. Just a thought. Hope it gets sorted, such vile symptoms!

waltztherapy profile image
waltztherapy in reply toThelmarina

Yes, vile indeed! Thanks for your helpful input. I like the 'deliciously mature people' expression - good to know how much we folk share (besides PMR) haha!

Kendrew profile image
Kendrew

Hi waltztherapy,

You may have seen my post a few weeks ago, and a linked one last week, regarding uncomfortable digestive problems that culminated in a trip to A&E...(A&E was mainly due to some other symptoms that had also emerged alongside the tummy troubles)

I developed some very uncomfortable lower abdominal discomfort with windy, spasmy pains and a feeling of needing the loo and these grumbled on for about a week before culminating in a really bad bout of diarrhoea.

I also felt very nauseous, weak and fatigued but would intermittently experience days when I felt much better only to then have another day feeling rough again.

Also, at just 2mgs of prednisolone daily, I was well aware that I was now within the range for my adrenals to still be struggling to keep up with daily demand and this factor definitely had some bearing on the decisions I made to move forward from this.

In my case, it seems that as with SJ, I was also experiencing an episode of Diverticulitis, but in a milder presentation.

These 'episodes' can manifest differently in different people but can last from days to weeks. (I know because my sister also suffers from diverticulosis.)

I obviously don't know what the cause of your digestive disturbance is but I do know that "exercising through the pain" would never be something I'd advise.

Whilst I've been 'managing' this recent setback, I've ceased all my morning gym visits and other specific exercise too, and I'm still not back at the gym 3wks on! I am however slowly building back up to being able to return with some local countryside short walks and some gentle yoga at home.

In everything healthwise, but particularly PMR/GCA -related, patience is always the the key when it comes to unlocking the potential for a successful recovery, and rest, rest and more rest will always facilitate a speedier timeline for that.

With any health concern where symptoms are persistent or concerning, medical advice should always be sought, even if only to put your own mind at rest, so I hope you manage to get sorted soon and wish you all the best.

waltztherapy profile image
waltztherapy in reply toKendrew

Very grateful for your wise advice. We all have challenges, and it's so wonderful to be able to share and discuss on this forum, in our particular area related to PMR/GCA, and receive such amazing support.Truly grateful to the founders and advisers for making this possible.

Kendrew profile image
Kendrew in reply towaltztherapy

Me too. 100%. ☺

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