Pred withdrawal symptoms

[Chocolateluver]

Hi, I developed pemphigus foliaceus 9 yrs ago and was put on Pred. Over the year it was reduced to 5mg which I have been on ever since. Specialist decided to start reducing in October (1mg every 2 months) and at the beginning all was fine. Since I got down to 3mg I started to have muscle and joint pain together with fatigue. I have been off Pred since July and these symptoms have not improved! My question is.....Are these symptoms Pred withdrawal or did the Pred mask a bad case of rheumatoid arthritis? Saw my Specialist in August and they did a cortisol blood test which came back at 211. This was taken at 3pm so do I need another one?

[PMRpro Ambassador]

After 9 years on pred, I'd be inclined to blame a really VERY optimistic and ambitious reduction of pred! Even at 5mg there is considerable suppression of cortisol production and it does not return overnight as a lot of rheumies seem to think! Some experts suggest a month for every year on pred - and we'd say that even that is too quick for some.

That cortisol was taken a bit late in the day, the peak is in the morning and from 9am to 1pm is felt to be a reasonable time to take the blood sample with little change. However, if anything it would have been lower, and that is quite encouraging that your adrenals are performing reasonably. What it doesn't show is whether they are providing boosts reliably when required and it is low - no wonder you are fatigued. That can take up to a year to settle even after being off pred altogether. Aches and pains are also typical of adrenal insufficiency.

I honestly doubt it is RA, not even a mild case, and there are other things I would think of first if you have muscle aches. But the first thing to blame is - slow return of adrenal function. It is a stage you have to work through and it will take time. It is strange it hasn't improved at all since July, after 3 months I would have expected some less fatigue - but not necessarily. I wonder what  SnazzyD thinks about the timing as it took her a long time too.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro on the adrenal front, and also would have expected some improvement but as it CAN take up to a years after finishing Pred for adrenals to be 100%… perhaps yours are particularly sluggish.

[SnazzyD]

Hello, not sure what to say about your test result other than the adrenals are doing something but who knows how reliable they are.

Have there been any changes in your life since you got to 3mg?

Once I got to 3mg I was having better days but was by no means out of the woods regards stamina and I did get aches and pains due to my muscles being particularly unhappy about being used. This has taken 3 years to improve appreciably with knock backs due to Covid. Have you had your vitamin D checked? Whenever I become low, I get the same kind of symptoms.

It is really hard to say what is going on so it might be a process of elimination.

[Chocolateluver]

Thanks all for your replies. There has been no changes in my life since I was on 3mg but for obvious reasons I have low days. Sometimes i am very tempted to just go back on the pred but I have come so far. I have a phone appt with my GP next week so will request an AM cortisol test and go from there. Vit D is good.

[PMRpro Ambassador in reply to Chocolateluver]

HOW good? Adequate by UK standards isn't necessarily optimal ...