Fatigue: I have not posted for a while but am... - PMRGCAuk

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Fatigue

Robinsnest72 profile image
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I have not posted for a while but am looking for some answers. I was on prednisone for a little over two years. I reduced slowly under rhemys direction. My blood work is excellent and it has been a marker all along.However, I still have a high red blood cell count and rhemy says do not worry about it. I have never really been pain free throughout this journey. He says it is osteoarthritis and I certainly have it in my fingers. I have now been off pred for 12 days and I am just soo tired. My legs feel like they weigh 50 pounds when I walk. Of course I have usual pain but is tolerable. It is the fatigue getting me down and my sinuses are running every day. Is this normal when you stop prednisone after long term?

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Robinsnest72
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PMRpro profile image
PMRproAmbassador

How long did itake you to reduce the last few mg? It sounds as if your adrenal function is lagging behind - and that is the main reason for a very slow reduction for the last few mg. In that sense it is normal for post long term pred. It is also common for people to find that even a low dose of pred was keeping allergies at bay!

Robinsnest72 profile image
Robinsnest72 in reply to PMRpro

I was reducing monthly 1/2 mg and then the last month 1/2 mg every other day. I do think it is allergies because they come and go. How long does one feel like this usually

PMRpro profile image
PMRproAmbassador in reply to Robinsnest72

Difficult to say - experts say it can take up to a year to feel totally back to normal after stopping pred and I know several people who have said the same. Some are quicker and for some it is more the strength aspect that takes time.

Robinsnest72 profile image
Robinsnest72 in reply to PMRpro

Thank you for this . I just need perseverance

SheffieldJane profile image
SheffieldJane

They prescribe Prednisalone for Sinus disorders. Having said that I have chronic sinus trouble/ post nasal drip and have had over 4 years of Pred. I wasn’t troubled by this prior to PMR treatment. I think there is a link but I can’t find any literature. Perhaps it is something to do with the immuno - suppressant action of long term Pred.?

The fatigue is easier to understand ( I also share this awful symptom). Apparently it takes a good year for your Adrenal function to recover completely from long term steroid use. Your own Cortisol production having been switched off, for the period of time you were on over 7 mgs a day of Pred. You are also in the rehabilitation phase of a long term autoimmune disease and still need to take great care of yourself. Diet, exercise, pacing activities etc.

You may want to see an Endocrinologist to have a Synacthen Test just to ensure that your Adrenal function has the potential to function normally. It must to be good to be off Pred though. The Endocrinologist may possibly prescribe Hydrocortisone to boost the Adrenals into action.

Robinsnest72 profile image
Robinsnest72 in reply to SheffieldJane

Thank you for the support. I will continue to wish for feeling better. Covid does not help anything. We are coming into difficulties here now and it is like you want to stay in hiding. Shelves in stores are becoming bare again and people are frightened. Understandable so. Stay safe

composition profile image
composition

I'm not down to the "danger zone" where I understand side effects occur. However, remember that I am also on Leflunomide as an adjunct medication and that has caused no side effects and is probably making my taper easier. Every doctor I see says I will probably be on a low dose of prednisone forever. I do have anemia, get B-12 injections, etc. My markers have remained higher than normal, and I awaiting the latest Sed rate and C-reactive protein test. Those might be a better gauge. When I went down too quickly last year, I bounced back in pain level almost overnight and had to add more prednisone, then taper very slowly. Last, I found an article on tapering that said for those who have a difficult time, it is much better to go, say, 6 one day, 5 the next, then 6, then 5 and finally to 5. That works better than the half mg. taper. But everyone is different for sure.

Robinsnest72 profile image
Robinsnest72 in reply to composition

Thank you for this. I have followed what the Rhemy said and I am hoping in due time the fatigue goes away. Stay safe and well

Saxsoprano profile image
Saxsoprano

Posts re fatigue have been reassuring as I am also suffering fatigue and am unable to do much exercise as a result. I am so relieved that as a fully retired 77yr old, living alone, I can slob around in my dressing gown till lunch time without disturbing anyone! I've managed to avoid all medications except Prednisolone - now in my 3rd year of GCA and downto 4-3 1/2 mg very slow taper plus Apixaban for February's very sudden pulmonary embolism. So I'm so much better than many of you on this site but the fatigue is beginning to get me down.

Robinsnest72 profile image
Robinsnest72 in reply to Saxsoprano

It was nice to hear of your situation. I am 73 and was so active till PMR hit me two and one half years ago. I have decided to take a day at a time and try and block out this fatigue when I can. It has only been two weeks since I stopped prednisone. I am hoping to have a few things checked into just to make sure the fatigue is from the stopping of the prednisone. With Covid it is hard to get anything done. Have not had flu shot since they are out of the syrum. Keep your chin up and stay safe

Saxsoprano profile image
Saxsoprano

Thanks for your good wishes Robinsnest. Don't ignore your fatigue but make sure to allow yourself a break when needed. All best...

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