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TAB tomorrow, have been on 60 mg of prednisone for almost a week.

Posted , 17 users are following.

linda04580
linda04580

I feel like crap, I thought I had no energy before now I have less.. is the treatment worse than the problem?  All pain is gone except head and eye.  Just winded and tired... terrible headache dark circles under my eyes.  I’m supposed to work Wed uggh.

0 likes, 20 replies

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  • Michdonn
    Michdonn linda04580

    Posted

    linda04580, I have PMR not GCA, but I would not be able to live a almost life without Pred. The side effects are horrendous, but I am go on. PMR had me in a wheelchair, with Pred I am looking forward to having a great ski season. Thinking positive, with a smile. 🙂

    • linda04580
      linda04580 Michdonn

      Posted

      Michdonn, I am not convinced of my diagnosis... seems what I’ve read, like yourself, people suffer much more than I have been with PMR AND GCA.  I am worried I am being drug down a scary dark path.  With no clear answers.
    • Michdonn
      Michdonn linda04580

      Posted

      What tests have you had that caused the doctor to think you had GCA PMR? Think positive!
    • linda04580
      linda04580 Michdonn

      Posted

      Michdon CRP HIGH, Platelets high, other than that, symptoms pain in shoulders hips and legs pain in the Base of my skull and behind my eye pain in my scalp and pain with swallowing.  

      GP Thought it was post viral SYNDROME and put me on medrol dose pack, symptoms improved, except eye, then came back two weeks later.  

      Referred to Rheumatology:  put on steroids 60 mg per day and sent for biopsy today.

  • nervebyte
    nervebyte linda04580

    Posted

    hey linda I'm sure u feel like crap. I've had pmr now for almost 3 years. I too was up to 60 mg but much less now.

    you have to be patient with yourself and believe that you will heal. belief is stronger than pred though the pred keeps the wolf away from the door. give yourself time and don't give up on exercise though that may be the last thing u may want to do. but do what u can. baby steps. i've almost cut sugar from my diet. for me it has been a trigger; also fried foods, white flour products and most packaged/processed food. suggest u intake lots of veg and legumes (beans, lentils etc). diet plays a big part of this. it's about change and your belief that change will help you.

    ....just sayin. take care!!

     

  • nick67069
    nick67069 linda04580

    Posted

    If you have GCA, without pred treatment you WILL lose vision  and it is permanent. While it may seem as dreadful medication, alternative is much worse.  This is just so you understand how serious GCA condition is and not terminate medication on your own.

    Having said that, why do you suspect that your diagnosis is incorrect?  Give us more details so we can comment more specifically.

  • patricia38799
    patricia38799 linda04580

    Posted

    Never  heard of such a high dose of prednisone  for PMR. I have  had  pmr  for nearly 2yrs.started on 24mg for 1 week  then 12 mg . now on 5mg.feeling good. Going to see Rheumatologist next week .I feel you shouldn't be on such a high dose All the best Dr Patricia smile

     

    • EileenH
      EileenH patricia38799

      Posted

      Please read my other posts. Linda is being sent for TAB, temporal artery biopsy, because of a suspicion of GCA. Not PMR. 
  • 3party
    3party linda04580

    Posted

    I am not a doctor, but my excellent rheumy is.  From what he tells me, and from my own experience, 60mg is crazy high.  I started on 20mg and am now on 5 mg. If I were to take 60 mg, I'd feel like crap as well.  My guy believes that most practicioners dose too high.  I would say that's the problem.  Cut back to 30mg.  Hope this helps.

    • EileenH
      EileenH 3party

      Posted

      Do you have a diagnosis of GCA or PMR? 20mg is the standard dose for PMR and yes, 60mg would be crazy high. The use of such high doses is for patients who have visual symptoms - to reduce the risk of them going irreversibly blind. 60mg is not crazy high there, sometimes they even need higher doses. In the context of GCA your guy is the one dancing out of tune and I would personally far rather have a couple of weeks high dose pred rather than risk losing my sight.
  • EileenH
    EileenH linda04580

    Posted

    If you do have GCA, even on the basis of symptoms alone, you have a serious systemic illness and normally no-one would expect to work when that ill.

    If you had PMR-symptoms, which are a symptom of GCA for some people, then of course all that pain has gone at 60mg which IS a very high dose, far more than PMR symptoms require. If you still have a headache - maybe even 60mg is not quite enough. You are on the high dose to protect you from the spectre of loss of vision which, if you have head and eye problems is a very real threat. No doctor would put their patient on high dose pred without very good suspicion.

    The side effects of pred may be horrible - but none is as bad as the possibility of going irreversibly blind. 

    • linda04580
      linda04580 EileenH

      Posted

      Hi Eileen.  Thanks for your post, and thank you everyone for your responses.  I guess I do have symptoms highly suspicious of GCA and PMR, so the Rheumat. Put me on the high dose of steroids. Biopsy today could be negative but she’s treating me either way.  I do have to work because I have a six yr old adopted daughter I adopted.  I am the main bread winner of the family 50 yrs old.  It is young to have this diagnosis.

      I hope all goes well.  Again thank you all for your support

    • EileenH
      EileenH linda04580

      Posted

      Can you not have a few weeks off sick at least? You are unwell - and the sooner you get better the easier it will be to continue working. I do appreciate the problems - I really do.

       

    • EileenH
      EileenH

      Posted

      PS - yes you are young, Unfortuantely I know of younger. One was only 37.
  • lilian05079
    lilian05079 linda04580

    Posted

    Hi linda04580

    I do feel for you, hope you felt my hug! 60 mg is very high obviously your doc is erring on the side of caution. I feel that if you had inflammation in your head/eye arteries 60 mg would have eased the pain in a week...hang on in there until you have your TAB once you have a firm diagnosis perhaps your doc will reduce the dose. A friend of mine who is a patient with the same rheumy as i had, was put on 30mg before her TAB when GCA was confirmed, she stayed on 30mg for a few months then started tapering she is now on 5mg and is doing well...linda there is light at the end of the tunnel just roll with it, be strong and positive. Perhpas you couls ask your doc if you can take an analgesic for your headache and eye pain. My very best wishes for a firm diagnosis at your TAB appt.,tomorrow wether it be yay or nay.....

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