Steroid withdrawal

[AnnaColuthon]

Over the past 5 weeks I have tapered from 7 mg to 6.5 mg. In this time I have experienced weakness and tiredness. I understand that I have got to the dosage level range where the adrenals need to wake up. I shall now stay at 6.5 until I get some energy back. Am I right to think that is what I should do? How long might this take? I do not want to let the adrenals off by increasing the dose as there are no signs of a flare.

[PMRpro Ambassador]

You have indeed - and you are doing the right thing. It is difficult to say how long it might take though, everyone is different.

[SnazzyD]

Yes, this bit can seem like the endless wasteland before the promised sunny uplands of fully working adrenal glands. It’s difficult to know for you if need to stick for the adrenal axis to get used to the idea and then feel better before the next drop. Or, if you need to get out of the no-man’s-land of dosing like me because the dose was still a bit high for the axis to move. One thing to note is that I didn’t have PMR, just GCA at that point. What I did do was really pare back my activity in order not to have to increase Pred due to exceeding my cortisol capability. Highly tedious but got there in the end.

[DorsetLady PMRGCAuk volunteer]

Sounds like a plan… as for how long it will take it’s a bit of a ‘how long is a a piece of string’ question…

For info my adrenals spluttered for about 8 months… random bouts of fatigue that’s all… like you no flare etc.. so definitely adrenals only. I was decreasing for 6mg to 3mg - at 0.5mg a time and following my slow tapering plan. Like SnazzyD GCA only…

[piglette]

When I got to 6mg I felt like a comatosed zombie!!

[ChrisBeeLoop]

Fatigue is awful. It drains you physically and mentally. I am currently struggling at 3 ¾ and cursing myself for not having kept a proper tapering diary noting on which day after reduction the fatigue crept in. Keep at it but go sloooooow If I have something special happening and need some energy I just take one extra mg of Pred. So far so good.

[Smithie49]

What a timely post AnnaC. I am also at 6.5 mg having alternated daily between 7 and 6.5 through Feb. I feel wasted and have given up my beloved weekly tennis game because I feel so exhausted. Knowing it could be my adrenals will help - maybe!!! I also take methotrexate and was looking at that as a possible cause but maybe it is innocent. 😀.

[PMRpro Ambassador in reply to Smithie49]

It was MTX that caused my overwhelming fatigue - but how long have you been on it?

[Smithie49 in reply to PMRpro]

I started at 15mg weekly in Jan 2024. Had 3 flares during the year so the rheumy increased the dose to 20mg this Jan.

[PMRpro Ambassador in reply to Smithie49]

I would be considering if that were the culprit to be honest. Sounds as if MTX isn't the wonder drug your rheumy thinks it is!

[Smithie49 in reply to PMRpro]

I have been wondering about stopping it as so many research studies I've read from here seem to think it doesn't work as a steroid spare.

[PMRpro Ambassador in reply to Smithie49]

It does for a very small proportion of patients - for them it can be brilliant but for far more it, at best, smoothes flarea a bit or allows them to get to a few mg less. You have to try it to find out where you are but after a year and 3 flares - I'd say you aren't one!!!

[AnnaColuthon]

Thank you everyone. All of these replies were encouraging and helpful.

[Miacaro45]

I am going through a similar experience. I just went down to 7 mg from 7 1/2 mg. I was on 7 1/2 for almost 3/months. Now that I am on the 7 mg I feel like a zombie. Everything hurts. I am totally exhausted. Periodically I get waves of nausea and headaches. I will stick with the 7 for a bit longer and if I do not feel better I will increase the Prednisone.

I am so thankful for this group as I feel that there are people who really understand what I am going through. 🥰

[PMRpro Ambassador in reply to Miacaro45]

This may be a point where alternating the 7.5 and 7 for a while might help? I found the first 3 times I tried the new dose in the DSNS taper it felt "wrong" but at some point the feeling changed and it was the days of the OLD dose that felt "wrong" and then I just went to all new dose.

[Miacaro45 in reply to PMRpro]

Thanks for your input.