Getting off prednisone post PMR and Covid-19. No pain, no gain.

[DeWet]

I have been on prednisone for 30 months. In December 2020 I contracted Covid-19 and was hospitalized for 44 days. My doctor and others that saw me in hospital reckons its a miracle that I am alive. After I was discharged from hospital I stayed on the 10 mg prednisone I was on before Covid till a month ago. I then went down in one step to 5 mg. Post Covid I get tired easily and other than that continuing, I had no negative effects. Two weeks ago I went to 5 gm every day. I since then have been suffering somewhat with body aches and headaches, in addition to the tiring, especially on the days I do not take any prednisone. I have as from this morning taking 2,5 gm every day. I intend to keep at it for two weeks and then get off it totally.

My view is that once you start weaning yourself off prednisone or alike you must accept that your both will respond and you may not feel that well until it has adjusted. "No pain, no gain" may be an appropriate slogan.

[DorsetLady PMRGCAuk volunteer]

Good luck with that - but just be aware that your adrenals glands may not be up to speed for some time - as the headaches and tiredness may testify- so don’t put yourself at risk of adrenal insufficiency.

[PMRpro Ambassador]

I find that speed of dispensing with pred after 30 months a bit concerning with regard to adrenal function returning to normal. By ditching pred from 10mg to zero in a few weeks you are not allowing the HPA axis (hypothalamus/pituitary/adrenal set up) any time to get its act together at all and even if you are OK for day to day functioning, if you were under any stress - emotional, physical or healthwise, you could be at risk of an adrenal crisis which, if not identified in a timely manner and treated could be life-threatening.

In many situations, "no pain, no gain" is a very risky approach.I think you need to speak to your doctor. Ideally you need a synacthen test to see if your adrenal glads are CAPABLE of producing cortisol after 30 months on pred. But you do need to be aware that if you felt ill with any signs of an adrenal crisis you may need medical attention quickly.

[DeWet in reply to PMRpro]

I appreciate your feedback and shall get to the doctor soonest. How would you recommend I go about cutting down from 10mg. Please advise.

[PMRpro Ambassador in reply to DeWet]

If you think you are OK at 5mg I'd stick there for a month or two and be sure you really are OK. Then 1/2mg at a time a month from there is safest. But if you start to feel ill at 5mg you may need a bit more. You should discuss it with your GP.

[cranberryt]

And remember… reductions should be in increments of more than 10%. That’s 1mg drops at 10mg and often means 1/2mg drops at some point depending on your tolerance and level of active disease.

[DeWet in reply to cranberryt]

I live in South Africa. The lowest dose its we get here is 5mg. That one can cut in half to 2,5mg. Thereafter it becomes very tricky for 1,25 gm and halving it again to 1,124 gm, impossible! Do anyone have a suggestion?

[PMRpro Ambassador in reply to DeWet]

Using the slowed tapers has worked for many in the past. The cuts don't have to be accurate, just less than the previous dose.

This version can be slowed as much as you like by starting with 7 or more days between the low dose days

healthunlocked.com/pmrgcauk...

Part of the reason for developing was for patients on enteric coated tablets which at the time were 5 and 2.5mg and must not be cut.

[DeWet in reply to PMRpro]

Thanks.

[PMRpro Ambassador in reply to DeWet]

Do you get compounding chemists in SA? We still have them here - and they will make up doses to order in capsules.

[DeWet in reply to PMRpro]

Thanks. Another lesson leant! I phoned around and the local pharmacy, given a doctor's script, will order the required pills from a compounding pharmacy based in Johannesburg. At the 2,5mg level I am OK for now and shall go that route at the next cut!

[PMRpro Ambassador in reply to DeWet]

Not something most people in the UK would think of - not common there. But they are very useful!!! I just had to get a script for enough of the high dose tablets and scripts to cover the number of capsules that would make - the guy in the village did the rest

[cranberryt in reply to DeWet]

We can get 1mg tablets here. If they are not coated you can crush them and weigh it instead. So weigh out a full crushed tablet and then do 1/4 of that weight to get 1.25mg which is better than a drop double that.