Yet another question about tapering side effects,sorry! After 8 years on pred i am finally trying to go from 2mg to 1.5mg per day using deadslow method. Halfway through and i am still feeling intermittently nauseous and have flu-like aches in arms, shoulders and legs. Plus feel incredibly tired most of the time. Is this due to taper? If so,do i need to go back to 2 mg or will the symptoms subside eventually?
Many thanks
Quite possibly it is your adrenal glands being forced into action again. Of course it could be that you are not quite ready to reduce by 25% yet.
Thank you, yes 25% is quite a jump. Perhaps I could cut my tablets into quarters? Or double the time on each stage?
Also I think I am looking for some reassurance that these are quite normal consequences of tapering. Health anxiety canbe an issue with me at the moment 😐
I think we all can jump to conclusions about our health. I blame the steroids for everything even if I stub my toe! I have coated tablets so cannot cut them but if you can it is worth trying a smaller reduction. Make certain you feel OK before reducing though.
Thanks so much for your advice. I will definitely be trying to master the art of pill cutting!
I think there are pill cutters and pill cutters!!
I get health anxiety too, it's taken over my life. I was never like this until I was put on prednisolone
Have you discussed it with the doctor? They should be able to help.
Hi PMRpro, yes I have but no one wants to prescribe antidepressants as I am in on sotalol for afib and apparently antidepressants can interfere with heart arrythmia, I am really low at the moment, never been like this in my life 😥
Then they want to get reading!
pubmed.ncbi.nlm.nih.gov/306....
This is the study it refers to:
pubmed.ncbi.nlm.nih.gov/304...
And anyway - I thought the trend wasn't to hand out pills for depression but to use other therapies.
As I understand it - the risk is increased initially but then falls over time and there is a distinct possibility that the anxiety/depressive condition might be implicated rather than the medication itself.
Hang on in there. You aren't alone !! Keep talki g to us and take care of yourself!
Thank you so much x
I agree my anxiety levels have been far worse since being on prednisolone
We have moved and my new doctor is just marvelous in all things! However, she is mostly guided by me and how i feel about my steroid dose as she clearly doesn't know the fine detail of reducing etc. I think because i am on such a low dose she let's me get on with it.
Yes I agree. My anxiety levels have risen since taking prednisolone 😞
Adrenals as mentioned by piglette -and they will eventually start working.Only way is slow tapering as you are doing..tiny steps (perhaps only .0.25mg if necessary), plenty of TLC -and patience.
As you’ve been on Pred a long time, it can take longer for adrenals to get going -might be worth asking GP for a test to gauge the situation.
And don’t apologise for asking a question….that’s why we are here.,
I think that is right - your adrenal function is struggling to adjust. And I'd say do each step of whatever reduction approach you use 2 or 3 - or more - times. It is never a race and you have all the time in the world - it is a low dose that Prof Dasgupta told us he often leaves patients at for some time as that reduces the risk of relapse. If you got to 2mg without feeling so bad then your body is catching up so there is hope it will continue to do so.
Thank you both for your wise and encouraging words. I have invested in a pill cutter and am hopeful that I can continue when my body is ready very, very slowly!
I am happy to have read your post, I just got on here to post an almost identical question! I have been using the dead slow almost stop method for tapering, but once I got to 5 mg I stayed there for 3 months and felt quite well. Then I did the taper to 4.5 mg and now I feel worse than I did when I was diagnosed 2 years ago. Rheumatologist sending me for blood work but said it could be adrenal insufficiency because I've been on steroids for so long. I actually went back to 5 mg this morning and by afternoon felt better than I have in a week. I hate going back up but I can't take the pain in my hips, shoulders, etc. Thanks for your post and thanks to all of you for so much helpful info
" I hate going back up but I can't take the pain in my hips, shoulders, " - that is unlikely to be adrenal issues - that is more likely to be a flare because the dose is too low to deal with the daily dose of new inflammatory substances shed in the body in the early morning.
You are never reducing relentlessly to zero, you are doing something called titration of the dose - adjusting the dose to find the lowest effective dose for YOU - not anyone else. In other drugs it is done from low to high, you increase the dose until you get the result you want in terms of BP or the like, but that doesn't really work in PMR as until you get to the right dose the inflammation builds up all the time and you get worse while playing catch-up.
I think we all hate going back up on our dose don't we? It seems such a blow but it is all about quality of life I guess. We know we can't fight this condition and I have learnt to be patient. Not in my DNA at all! 😂
Great that you have got so far. I experienced the same at the 2/3 mg level. Hang on in there, it seems to take time for the adrenals to wake up properly. I was advised to keep going and wait, before tinkering with dose.I’m sure one of the team will be along to advise.
Thank you! I've had some great advice and some wonderful encouragement. This is such a fantastic forum full of lovely people!
I am in the same position. 4.5 years on Pred and now going to 2 again. Just had a flare so taking things slowly. Using DL taper as I find it works for me.This is my third attempt to go to 1.5. That is my aim but am on 3/2.5 at moment.
I think I was ok on 2 but 1.5 was a no no.
Good luck
Thank you for sharing your experience. It seems that reduction can get very tricky at these lower levels. The complete opposite to what I expected!
Agree. I am now tapering to 2.5 hoping to start 2 next week. I mite stay on 2 an extra week then start the taper to 1.5. Can but try 😊
Good luck!😊
It is -and people usually think it’s going to be the easiest. I’ve often quoted it took me as long to get from 10mg to zero as it did to get from 80mg to 10mg..,
And no, patience isn’t my strong suit either!
😊
I got exactly the same problem going from 5 to 4.5. Stayed at 5 for an extra month and tried again. Same problem. Another couple of months tried again...and it was fine....except for deathly fatigue in the afternoons.
Thanks so much for your reply. I agree the fatigue is awful and difficult for people to understand I find.
I had the same problem- posted “ Mornings are hell!”. Eventually had blood tests done and inflammatory levels had gone up so was told to go from 3 to 4 mg and I feel very much better ( till I put my back out cycling 😂) I think I am fortunate to have a very good, understanding and caring GP and optimistic this is just a blip as it may be for you too! Hang in there! 👍
Thank you! Fingers crossed!
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