New to PMR and feeling exhausted
Posted , 6 users are following.
I was diagnosed with PMR this past summer. My doctor started me on 10 mg of Prednisone and my stiffness and fatigue disappeared. Within 8 weeks I was down to 5 mg. This fall I started taking 2.5 mg and felt so much better that after a month I took myself off of the medication completely. I think this was a mistake! For the past several weeks all I want to do is sleep. Ten hours per night and I'm still lethargic and now feeling depressed as very achy. I've always been a high energy person and although I'm in my 60's, I work full-time in childcare. I can barely get through the day now. Finally got a call back from my doctor and she wants to see me AND suggested I go back on 5 mg. My main question to all of you: Could I be feeling tired and depressed because my PMR came back or is that not a complication of PMR??
0 likes, 4 replies
EileenH susanjeanne
Posted
PMR is a chronic disorder and usually lasts at least 2 years. The pred does not cure anything, it merely manages the inflammation to allow a reasonable quality of life in the meantime until the real illness, an underlying autoimmune vasculitis, burns out and goes into remission. Until then you wil need some pred to manage the inflammation and, hence, the symptoms.
However, what has probably happened for you is that the time you were on pred was enough to suppress your adrenal gland function and having come off pred altogether your body has not caught up. The body requires an amount of a corticosteroid, cortisol, to function properly - as long as there is more than about 7 or 8mg of pred present in the body they body knows there is enough and the system governing the adrenal glands hibernates - like your heating boiler does nothing much as long as the room is warm enough. It can take months to get back into balance again, especially if you stop taking pred suddenly as you did.
But you may well also discover the achiness is the PMR - I had it for 5 years without pred, I ached on a permenent basis. And autoimmune disease is commonly associated with fatigue - so if the PMR is still there, it will contribute to the fatigue so you have a double whammy.
That fatigue is managed with pacing - the pred does nothing for it. There is a link to information about that in the last link of this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If you are trying to work full time in a physically strenuous job when you have an autoimmune illness - I'm not surprised you just want to sleep! I couldn't have imagined being able to get to work - never mind be awake in the evening!
susanjeanne EileenH
Posted
Thank you, Eileen. I wondered about the childcare job being too much at the point! Sometimes after nine hours of toddler care I'm ready to collapse. Sounds dramatic but it's true. And thanks for the PMR facts. I'm still learning.
EileenH susanjeanne
Posted
I was barely 50 when my daughter had her second baby - I didn't have PMR yet and was reasonably fit. After an hour and half looking after that young man - I was on my knees!
PMR leads to a steep learning curve - and the forums try to help you speed it up. We have most of us been there and got the t-shirt - and most of us have ended up having to have a major rethink.
Good luck!
dan38655 susanjeanne
Posted
The symptoms of pmr and the patient's response to medication varies trememdously. I, for example, am able to exert control of my symptoms with as little as a half-mg change in my daily pred dosage. Also, in my case, the same small change exerts control over both my painful aches and bursitis AND over the symptoms of fatigue that surface periodically.
Therefore, I recommend going back to taking at least 2mg and then adjusting your dosage slowly according to your level of symptoms (both the fatigue and the pain).
Symptoms and dosage requirement can also change over time in either direction, so as in my case I've reduced smoothly to 2.5mg and a month or three later been back up to 5mg and now a year later am taking 2mg/day with minimal symptoms.
I seem to get by with lower dosage levels when I spend some time outdoors each day as soon as possible, and as my daily coffee starts doing it's job. I feel more in the way of aches and pains from exertion later in the day when my energy level runs lower.
I take my small dose of pred at 6pm, so as to best control symptoms during the night which might inhibit my getting a good night's sleep, and to wake with minimal initial discomfort.
I can tell when it is time to reduce my dosage further when I can comfortably delay my evening dose (usually due to inconvenience or forgetfulness) until later in the evening. I will start by alternating days with my existing dose and with a dose that is 1/2mg lower, then after a couple of weeks I might be able to stay at the lower dose until the next dosage change (in whatever direction) seems appropriate.