withdrawal of prednisolone

[lennysmummy]

Hi, I am just over a week of going down to 5 and a half mg. I have done a very slow taper over nearly 2montgs at 6mg. I have had stomach issues since the beginning but now finding I’m suffering more with stomachs cramps and diarrhea. Do you think this is withdrawal or something else. I’m waiting to see a gastroenterologist but who knows how long that will take. I eat very little and live on salads, fish or chicken or turkey so it’s not my diet. Any advice appreciated. 🫶

[DorsetLady PMRGCAuk volunteer]

Stomach issues can be related to adrenal insufficiency - which you may well be suffering with at the level of Pred you are on. Maybe have a look at this -

healthunlocked.com/pmrgcauk...

[lennysmummy in reply to DorsetLady]

Thank you for the information. Unfortunately as it says 5 and a half doesn’t warrant a test yet. I’ve been so careful with dropping .5 mg but my lower lumbar region since reducing and also my stomach issues, I really felt ok (apart from the horrendous side effects which have only just started to reduce but has made me feel worse every other way. 🙈

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

No you won’t get a test as yet, but doesn’t mean your adrenals aren’t struggling to get going again… and don’t have enough oomph to make up the shortfall from your reduction in Pred.

The only way to nudge them into working is a very slow taper, tiny steps, time and patience… and maybe some medication to help with the stomach cramps and diarrhoea.

[lennysmummy in reply to DorsetLady]

I take Buscapan but doesn’t always work. I take 40mg of Omeprazole a day as well. X

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Omeprazole can sometimes cause an issue.. think you need to talk to doctor.

[lennysmummy in reply to DorsetLady]

I have been on omeprazole for 10 years as I had stomach ulcer and gastritis. I am waiting for a mri from the colorectal consultant. That took 8 months to see him so again no idea when I will be called for mri. Bloods are still all normal. Thank you again for your reply. Much appreciated. 👍

[ChrisBeeLoop in reply to DorsetLady]

What would you be testing for in this case?

[DorsetLady PMRGCAuk volunteer in reply to ChrisBeeLoop]

If you mean adrenals… the tests can only show if they have the capability to work… not if they actually are… and where the cortisol level are within the expected range.

[ChrisBeeLoop in reply to lennysmummy]

What would you be testing for in this case?

[Doraflora in reply to DorsetLady]

That’s really interesting, DL, as I was diagnosed in March 2020 (at the start of the pandemic - and diagnosed over the phone). The doctor didn’t mention one thing about a steroid card. It was only after I’d read about it on here that I went back and asked at the surgery.

We moved area shortly after (almost 3 years ago) and absolutely no-one at the surgery has ever spoken to me about the PMR. They literally just let me get on with doing my own thing!

You lovely people on here are my surrogate doctor 🤣

[DorsetLady PMRGCAuk volunteer in reply to Doraflora]

Probably know nothing about PMR - but that’s all the more reason to find out about it… although at least you aren’t being hassled about getting off the Pred.

I do wonder sometimes what some surgeries actually do…

[Doraflora in reply to DorsetLady]

Not a lot me thinks!

[Miserere in reply to Doraflora]

Same happened to me - diagnosed over the phone and then left to it, basically. Struggling to reduce at present below 7mg but patience and time, hopefully, will win the day.

[PMRpro Ambassador]

Any change in bowel habit should be looked at closely. As DL says, omeprazole may have been a culprit all along but you should try to speak to your GP.

[howtotaperdown]

I was taking omeprazole as a stomach protector 30 mins before the pred, been on it for almost 2 years, and cut down the dose myself as I had cut down the cortisone, as omeprazole also seems to rob bones of calcium. But the UK GP gave me the generic Mezzopram instead of Omeprazole.. after which I systematically got a pain in the right hand side of the large intestine (I imagine it was that :)) and when I stopped taking Mezzopram... the pain went, so that was an obvious link for me in my case, just wondered if you are taking that or another 'stomach protector' could be causing problems?

[lennysmummy in reply to howtotaperdown]

To be honest I have no idea. I unfortunately do not have a Gp that is very helpful. Because I suffer gastric problems they just told me at the hospital go up the dosage. All I know is my lower back discomfort is so bad. I’ve even lowered the dose of Omeprazole but as soon as I do I get the sharp epigastric pain so have to increase again. X

[PMRpro Ambassador in reply to lennysmummy]

If you really want to try to eliminate the omeprazole and the GP isn't helpful if you ask them to prescribe an H2-antagonist as an alternative, you can buy lower dose PPIs and H2 antagonists OTC - so if you pay you could try them out to provide some evidence. They are brain-washed that PPIs are FAR better at eliminating acid than anything else and omeprazole is the cheapest but the difference isn't that marked really, They have a different mechanism, so the adverse effects are different. I don't see 99% efficacy and horrible stomach pain as preferable to 97% efficacy and less or no pain.

[lennysmummy in reply to PMRpro]

I used to be on Rinitidine but they took me off that years ago. 🫤

[PMRpro Ambassador in reply to lennysmummy]

Ranitidine was the go-to but was withdrawn because of contamination. Now it is cimetidine, famotidine and a couple of others. Tell them you want to go back to them. Always worth a try.

[lennysmummy in reply to PMRpro]

I will send a link to my surgery. Thank you. 🙏

[PMRCanada]

I’ve had both nausea/diarrhea and soreness in buttocks/lower back while tapering pred from 6 to 5.5 and now 5.5 to 5. Also occasional waves of fatigue that stop me in my tracks. These symptoms seem to lesson the farther I get along in the taper. I chalk it up to adrenals struggling and pred withdrawal.

I have diverticulitis but my current symptoms are different in that I have no lower, left abdominal pain or the chills I get along with a diver flare.

So I’ve extended my usual 7-week taper to 14 weeks essentially repeating each week twice. It has helped. Slow going but as they recommend….the lower the slower. I also stay at my new (lower) dose at the end of my taper for 6 weeks before starting a new taper.

[Moonriver65]

I am no expert by any means but I wonder if you should be eating a better balanced diet and more volume? The reason I ask this is because last year, I was slowly reducing down and got as far as 2/3 mg alternate days. I had bad stomach problems and lost a stone and a half. Had ct scans on stomach, bowel all normal, but I wasn’t eating much fat, which helps us to digest food. I increased pred to 6mg in desperation and slowly improved. I have been so anxious about reducing again and have just had a synacthen test (whilst on 5.5mg pred, by the way!). Endocrinologist phoned me within 3 hours of the test! Said my adrenal glands are ok and I must reduce my steroids by .5 mg every two weeks! I almost begged her to let me do this more slowly and she flatly refused! I will try but very anxious, however I will also make sure I eat enough fat and a balanced diet this time. Steroids are a nightmare when it comes to reducing them and having read a lot of posts on here, it seems Endocrinologists are hell bent on getting you off them asap.

[PMRpro Ambassador in reply to Moonriver65]

She's obviously forgetting y ou have another need for pred - very common. Your adrenals might cope - suspect the PMR mightn't!!

[Moonriver65 in reply to PMRpro]

I know - time will tell. I am very concerned and hope my GP will be more understanding and receptive to a slower taper, if needs be.

[Camelian]

I've suffered from stomach and bowel problems whilst reducing. Sometimes I have diarrhea sometimes constipation- I've had a colonoscopy no problem found thank god. I was put on lansoprazole at the beginning to protect my stomach because I also take aspirin I'm currently on 30mg but still get acid and I think I have episodes of gastritis certainly feels like it plus oesophagus discomfort which comes and goes. I've spoken briefly to my GP about changing from lansoprazole so it's been interesting to read about the alternatives as mention by pmrpro I'll have a further discussion with my GP about changing. I was told I was adrenal insufficient after the test which I had at 7mg and told to stay at 7mg but with my gp,s support I've started to reduce and have been on 6. 5mg for a week and a half and up to now I feel ok🤞🤞🤞🤞 obviously I'll go very slowly. I hope you find some resolve soon. I'm thankful I've got a good GP who does listen and tries different approaches but most of what I've learnt about PMR and all that goes with it has been through the lovely people on here.Good luck 🍀

[PMRpro Ambassador in reply to Camelian]

Well of COURSE you were adrenally deficient if you were still on 7mg pred!!! What doctor decided you should remain at 7mg?

[Camelian in reply to PMRpro]

The rheumatologist sent me for the test and then based on the result referred me to the endo for support in reducing. The waiting list for the endo was very long so my GP asked the endo for guidance on reducing but they advised I stayed at 7mg🤷I assume until I see them but it wasn't clear. After discussing with GP agreed I'd go down to 6.5mg and see how I go. I'm due for a review with my GP soon so will discuss the plan moving forward then.

[PMRpro Ambassador in reply to Camelian]

I suspect someone didn't read the whole story - no-one would ever get off pred if that was the general advice. And most endos won't approve a synacthen test on a patient on more than 5mg pred as it is pointless and they prefer 3mg.