Polymyalgia Recovery

[Downbytheriverside]

Hello. Does anyone have info on PMR recovery. I tapered off Prednisolone a year ago, after 2 Years with PMR, and am fairly symptom free. I do still get occasional unexplained bouts of fatigue and lethargy and wondered if this was unusual.

[ali5son]

That's great news I have not managed to get lower than 31/2mg of pred as took advice from these pages and tapered very slow but no major relapses.

[Downbytheriverside in reply to ali5son]

I did the same. I remained on 3mgs of Pred for a long time with occasional trials of 21/2 or 2mgs. It was a long process. My favourite activity, swimming helped. On bad days I would get into water and feel better, particularly outdoor swimming.

[ali5son in reply to Downbytheriverside]

Great that swimming helps its the getting in and out of swimsuit that would put me off lol x

[Downbytheriverside in reply to ali5son]

Tell me about it. In the early stages of Polymyalgia my struggles to put on a wetsuit were a sight to behold. I generally kept with an unglamorous, easy going Sp..do swimsuit; slip on and off sort of thing.

It was very painful to start with, but easing into cool water acted like the best pain killer available. I would stagger in and emerge almost running.

I have often wondered if there is some anti inflammatory process going on with cold water swimming. Some medics think so.

[PMRpro Ambassador in reply to Downbytheriverside]

Whereas I couldn't do aquafit in water that was cooler than about 28C, and even that was impossible in the early stages when I couldn't do high level activity.

[PMRpro Ambassador]

Sorry - don't really understand what you are asking. Nor what you mean by "fairly symptom free".

Most people I know who have managed to get off pred without symptoms returning because the underlying autoimmune cause has burned out and gone into remission say it took them a good year to get back to "normal" though of course, we are all older and who knows how much difference that makes. The older you get, the harder it is to regain fitness after illness.

It is certainly a good year before adrenal function has returned to anything like normal reliable business whoever it is - and there is some thought that it doesn't always recover fully or takes even longer than that. Even if you have had a synacthen test that only tells you if the adrenal glands are capable of producing cortisol - doesn't mean they are as the whole set-up is very complex, involving several organs/glands/hormones.

Have you thought of keeping a diary of activities to see if anything relates to the periods of fatigue and lethargy? It may be a natural reaction to a sustained period of more activity or stress than your adrenal function is up to dealing with,

[Downbytheriverside in reply to PMRpro]

By fairly symptom free, I meant I don't suffer from the muscle aches and stiffness any more. However it's interesting what you say about the recovery period.

I just wondered if these periods of lethargy and fatigue were connected. It's possible I'm just suffering from Lockdown weariness and missing my daily swim.

There's a lot of info on the net about PMR but almost nothing on recovery. Only when a friend, also PMR recovered, mentioned occasional bouts of extreme fatigue, did I make a connection.

[PMRpro Ambassador in reply to Downbytheriverside]

If anything I'd think it might just be left-over adrenal insufficiency - which is why I thought maybe a diary would make connections.

[Hindags]

I took Pred for three years and joined club zero about a year ago. I had very little fatigue throughout except around 4-7 in the evenings. It would last about a half hour. As I got lower on Pred it became more pronounced, a combination of weak Wobblies and fatigue. I fought it because I noticed that moving around seemed to help it go away faster. I just realized now that those episodes have really subsided now. Haven’t felt them in a pretty long time.

I was, by the way, an early adopter of the 2am dosing. Then I went onto Delayed Release Pred. Rayos in the US. Lodotra in Europe. It made all the difference to my ability to continue working and to minimize pain.