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  3. Polymyalgia Rheumatica and GCA

So tired

Posted , 6 users are following.

Barney63
Barney63

went to my doctors 3 weeks ago with tenderness in temple and horrible headache he put me on 60 mgs of pred and said he hoped it wouldn't work !

well it did . I have been having pain in muscles for about two years always tired couldn't sleep also couldn't lift arms above my head this has all gone away since taking the meds. The problem is I am so tired still even more so I feel like I'm walking through cotton wool is it the pred ?

0 likes, 7 replies

7 Replies

  • pat38625
    pat38625 Barney63

    Posted

    Hi Barney, sorry to hear of your plight, but welcome to the forum.  I am a newbie with PMR - Have you had a diagnosis yet ie., GCA or PMR or both.  Someone will be able to answer your questions.  They are a great bunch here so hang on in there and you will get loads of support, advice and information.  Good luck.  Pat
  • Barney63
    Barney63

    Posted

    They think gca but because of my age and nothing showing in bloods or ultrasound they are not sure have had biopsy getting results this week but because of some double vision they may continue to treat as gca 
  • TIsser
    TIsser Barney63

    Posted

    Hi Barney sorry you feel so tired, when in was first diagnosed and started with pred, I felt really well, with bags of energy, now reduced from 40 to 10 ml some times I feel really good, I do too much and then I feel tired with not much energy, I don't feel it's the meds, just the normal problem with PMR. I think you have to pace yourself. Most days I am pretty good, I do like to try to walk my dogs I am lucky that my husband is very understanding.  
  • Susanne_M_UK
    Susanne_M_UK Barney63

    Posted

    At 60mg Pred, you are bound to feel out of it. It's no doubt a combination of PMR/GCA also, but Preds at high doses will make you feel that way. Even down at 30 or 20mg, you will have problems with concentration, energy etc. I started out at 40mg when diagnosed with GCA. I managed to get down to 25mg, although due to a recent flare, I'm now back at 40mg.

    We call it "steroid head"!

  • EileenH
    EileenH Barney63

    Posted

    GCA is a serious illness and makes you feel ill anyway. Pred is a powerful drug and you are on a high dose - it too will make you feel quite ropey.

    The history of muscle pain, fatigue and especially the inability to lift your arms all sounds very PMR - that has now progressed to GCA I'm afraid (like your doctor).

    About a fifth of patients don't get raised blood tests and the biopsy is only positive in about a half - in some ways the lucky half in that then no one argues about the diagnosis.

    I do hope the doctors don't just stop the pred because it all looks negative. Good luck

  • Barney63
    Barney63

    Posted

    Thank you the specialist did say nothing might show but would treat it as if it was spoke to a pharmacist today she said I should feel full of energy on that dose but reading through the forum I realise this is not the case thank you for your comments
    • ptolemy
      ptolemy Barney63

      Posted

      I think some people become quite hyper on steroids, while others are quite the opposite. It just depends on the individual. I am glad that the pred is helping even though it would be nicer not to need it! 
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