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New to this and scared

Posted , 8 users are following.

marlene07721
marlene07721

hi all,

 I woke up Wednesday from a short nap with sever shoulder pain in both shoulders.  Couldn't imagine what from.  I had been having slight frontal headaches all week but thought maybe this was allergy related, I never get headaches.  I decided to go to my local Er and the dr. Only gave me a test for possible tick Bourne illness but he said it seems I may have PMR and did give me pain med and a shot of torodol.  Not feeling that this was enough I went to MGH yesterday and got chemistries done.  Very high inflammatory markers which I never have.  The scariest part is that I seem to have all the symptoms for PMr, but I also have so many other health issues and I'm a only 62!  One of these issues is an eye problem which I cannot ever take steroids for or the problem can also cause blindness,  I am between a rock and a hard place.  Possibly need steroids for PMR and to,prevent temporal iritis but am. Im not supposed to take them due to central serous retinopathy, the other eye problem.  

I haven't yet been diagnosed with PMR and may be getting ahead of myself, but I really think I do.  I have appt. with pcp this week and my opthmologist.  

I am am very scared of going blind!  In the meantime I just took pain med. so I have some relief.

thanks everyone for listening.  Anyone else in the same shoes, unable to use steroids?

 

0 likes, 31 replies

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  • donna60512
    donna60512 marlene07721

    Posted

    I am very interested in what you are going through.  I too have an eye disease.  Mine is Retinitis Pigmentosa.  I went to my ophthalmologist right after I went on Prednisone to make sure my eyes were okay.  He checked me out and said all was okay, well as okay as my eyes ever are.  Since your eye problem also includes the retina, I would like to know more about your inability to take Prednisone.  I was trusting my eye doctor to know about this.  I have really worried about PMR going into GCA as that can be really detrimental to vision.  Sure hoping that you can get some answers for yourself and that you feel better soon.  I would appreciate whatever you know about the reason for not taking Prednisone.  Good luck to you, Donna
    • Anhaga
      Anhaga donna60512

      Posted

      I looked up the condition and apparently it is one that can even be caused by prednisone. 
    • donna60512
      donna60512 Anhaga

      Posted

      I looked it up too.  I didn't see the part where prednisone could cause it.  I dont' have any of the symptoms mentioned in the article.  I am just always worried about doing something that will affect my retinas which are already quite comprimised.  I have severe night vision problems and my peripheral vision is getting very bad.  I have stopped driving, but still manage my life quite well.  My ophthalmologist checked me thoroughly a couple of weeks ago, my pressure was very good and my visual acutiy, central vision, still very good.  I just want to stay on top of everything.  PMR is bad enough, but to go blind due to the med a med, that would be beyond horrific.  I really look daily for any vision changes.  I do not have any blurriness, just the usual that I have learned to live with.  

    • Anhaga
      Anhaga donna60512

      Posted

      I think you need to trust your ophthalmologist.  You've been checked and there are no new problems.  I was just pointing out that there is that connection with pred, and it is certainly a very rare result.  It was a young man given a very high dose of pred for facial palsy.  He improved upon gradual withdrawal of the pred, so in this case it was a reversible side effect.  I googled central serous retinopathy prednisone and found a number of articles.

      Speaking of worrying needlessly:  I have for the last couple of weeks had growing pain in my hip joints when walking.  It doesn't feel a bit like PMR.  I've sometimes wondered if I will be able to get home. So here I am, imagining avascular necrosis.  Then it occurred to me, maybe I should wear my sneakers which give my feet excellent support, instead of the comfy sandals I've been wearing all summer.  Lo and behold, after a few sharp pains as things readjusted at the beginning of my walk, things gradually improved and I was much more comfortable, not perfect yet, by the time I got home.  redface

    • marlene07721
      marlene07721 Anhaga

      Posted

      yes, that is true, which if I do infact  have this PMR I am so concerned about getting relief.  Either way the pred. Is not good for my already bad osteoporosis and the eye condition can be CAUSED BY STEROIDS.  So I'll have to just wait and "see" what all the doctors say.  

      The thought of going blind is just too much!  Damed if you do and if you don't for me I guess.  Can't imagine a good solution for me.  

      Will let let you know what I find out.

      hope I am worrying needlessly.

    • marlene07721
      marlene07721 Anhaga

      Posted

      I know all about this which is why I don't know what else can be used for PMR pain or gcr if I have that.  My eye is already being watched for the central serous retinopathy and steroids are an absolute no,no!  I can't even use cream on my hands for excema.

    • Anhaga
      Anhaga marlene07721

      Posted

      Yes, Marlene, please let us know how you get on.  Hugs.💕
    • Anhaga
      Anhaga

      Posted

      There is research being done on preventing serous retinal pathology.  Whether it applies to your particular situation I don't know.  Will private message the link.

    • donna60512
      donna60512 Anhaga

      Posted

      If any of these apply to Retinitis Pigmentosa, I would appreciate the link also.  There are stem cell studies going on now at the Universidy of Irvine in CA, but I do not qualify as I still have too much vision.  They are only taking people who are 20/200 with correction.  Thakfully I am a long way from there.  Thanks, Donna
    • Anhaga
      Anhaga donna60512

      Posted

      Just looked at the article and the find search did not come up with the word pigmentosa, so not what you want.  
    • donna60512
      donna60512 Anhaga

      Posted

      It is a disease of the retina though, so could be.  Thanks, Donna
  • Nefret
    Nefret marlene07721

    Posted

    I can use steroids ok, but as you say you've had some relief by using a painkiller, maybe it isn't PMR as most regular painkillers have no effect on the pain, nor did the usual anti-inflammatory drugs. The only thing which had any effect on me were the steroids. 

    I remember seeing a couple of posts from patients who couldn't use steroids and I think there is a blog - perhaps a net search would be helpful?

    • marlene07721
      marlene07721 Nefret

      Posted

      Hi  Nefret

      the pain med I took is not over the counter, those did not help, as people have mentioned.  It's hydrocodone with Tylenol, a prescription from the ER.  

      I would like to find a blog with those of us who can't use steroids and I will try to find it.  I still can't believe I suddenly got this (I think) in an afternoon after a perfectly busy and normal morning! ??

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