PMR and exhausted!

[Blue1943]

I am currently on 9mg of prednisone after starting on 20mg.

At first it has helped with all joint stiffness but it seems like I am completely exhausted all the time now. Do others have this same problem?

[SheffieldJane]

Yes! It is truly the most draining symptom of autoimmune diseases and Prednisalone seems to compound the problem. The only solution I have found is early to bed, a regular daytime nap and gentle walks in the fresh air. PMR 3 years + Pred. 5 mgs, mild Adrenal Insufficiency.

[Yellowbluebell]

Welcome to the forum. Yes feeling exhausted is part and parcel of pmr/pred unfortunately but it will get better just not overnight. Could you fill in your profile details please as it helps us give appropriate advice. When were you diagnosed with pmr? YBB

[alvertta]

I am on a no sugar food plan. And no gluten.

Finding that very positive. I have GCA. Currently on 22 mg Diagnosed in October 2018.

[Sho-Sho]

Yes absolutely! I am on 7mg of pred after 3 years of GCA, fatigue now main symptom.

Sheffield Jane's answer is spot on, not always possible, but definitely best advice.

[PMRpro Ambassador]

Have you adjusted your lifestyle to match the limitations of PMR? Pred manages the inflammation - but the disease process continues in the background all the time, attacking your body and making you feel as if you had flu. At the higher doses it is often balanced to some extent for some people by the euphoria effect of pred that most doctors seem to think is there for everyone, they tell us that "pred always makes you feel great". It has never happened for me! Manages the pain and stiffness - nothing more.

You have a new normal to identify and adjust to - being on pred is only part of the scenario, it hasn't cured the PMR, it is helping you manage it. But the other aspects of management, pacing, resting and gentle exercise, are all up to you to work out and administer:

healthunlocked.com/pmrgcauk......

As your dose lowers you also meet the adrenal function conundrum. At 9mg it is possible that you are entering this realm but it shouldn't be a major factor yet. Are the pain and stiffness symptoms still as well managed as they were at 15mg? If not - is it possible that you are straying into the level of pred that is barely enough to manage the inflammation? In which case, it is possible the exhaustion is the first sign of a flare.

[Noosat]

Listen carefully to the Moderators! I have just had a warning experience. I was down to 7mg of prednisone. My goal in activity was to get back to walking 3 miles without stopping, so each morning I pushed. Last Wednesday, I collapsed. went to hospital, found I had gastric ulcer, probably brought on by prednisone and stress, physical and emotional. Only one night in hospital, no surgery needed, but have heeded warning. I am on split dose of 6mg of prednisone, but very light activity. I don't have painful legs, just so heavy and awkward feeling. I have to get over the subconscious idea that I am "wonder woman" whose will takes place of strength. Hope all goes well with you.

[nickm001 in reply to Noosat]

I found that braking the walks into 2 or 3 times that adds up to 3miles is much better then trying to do one long walk. PMR "likes" when we are active often, and yet not to intense.

Most of us use yogurt to protect stomach from prednisone. I take maybe 3-4oz of plain yogurt before prednisone.

[Noosat in reply to nickm001]

I also take yogurt, maybe, I was being a little careless. I think that the main contributing factor was the way I was pushing my body beyond it's realistic capabilities. Thanks for response.

[PMRCanada in reply to nickm001]

Love your words about PMR likes when we are active, and not yet too intense. Exactly! Finding this balance can be difficult, but our bodies will let us know if we just listen carefully.

[Christophene47]

I think most, if not all of us, feel exhaustion, but still want to function as we used to. I am still having a hard time , after 2 + years, to make this adjustment. It took a hard fall down stairs to wake me up. I decided to have a stair rise installed , partly out of fear of falling again, but mostly because I was having so much difficulty with doing stairs from hip and knee pain; my legs hurt even when sitting or lying down. But the worse part is the exhaustion. I don't expect to be lively again now. It takes a strong hold on mental health as well.