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Susan32767

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susan32767
susan32767

Hello everyone. I am 58 years old and I've been suffering from PMR for three years. I started off on 10 mg predict but I'm now on 3mg. My symptoms are up and down. I've been ok on 3mg for ages and now I am experiencing slight pain in my neck, shoulders, head and top of my legs. I also get a sore throat with it. Does anyone else experience that. My doctor doesn't really get that bit. I'm also really tired again at the moment. Fatigue all through my body. Can't motivate myself at all. 

2 likes, 14 replies

14 Replies

  • EileenH
    EileenH susan32767

    Posted

    Yes - I had similar symptoms at the beginning: I had a permanent sore throat and thigh claudication (pain that came on when I did anything like stairs or walking up hill or using the cross trainer in the gym and went away when I stopped the activity only to come back). What sort of pain in your head do you mean?

    It sounds as if you are at the very least having a flare of your PMR and the symptoms you describe COULD possibly be suggesting more than just PMR, leg pain, head pain and sore throat are mentioned as GCA symptoms.

    • susan32767
      susan32767 EileenH

      Posted

      Hi EileenH

      The head pain is more like a spongy head but sometimes I get tender spots on my scalp. Do you know what I mean by spongy head, sounds daft I know but I think this whole condition is daft and no-one understands it. I think people think you are putting it on when you tell them that when symptoms are at their worst you can hardly move. 

    • MrsO-UK_Surrey
      MrsO-UK_Surrey susan32767

      Posted

      Susan, now that you mention the tender spots on your head, that can definitely be a symptom of GCA.  You need to go back to your Dr and ask for those blood tests if you haven't already had them, particularly the CRP.  If you experience any sudden problem with your vision, then don;t wait to see the Dr, but go straight to A&E.
    • bri21
      bri21 susan32767

      Posted

      hi susan ,i had bad heads for weeks ,i never suffer with bad heads .i coild not stand to brush my hair ,the pain is very tender diffrent from headaches can also effect jaws and vision.It was picked up straight away ,i was immediately sent for investigations ,at put on 60mg pred.thankfully this has worked ,and i have not had the head pain since however the PMR is bad go to doc and ask to be refered to to neurologist good luck
    • EileenH
      EileenH bri21

      Posted

      Depends where you are bri21 - in most of the UK it is more usually a rheumatologist (though the lord knows why!). I assume because of the PMR symptoms...
    • susan32767
      susan32767 bri21

      Posted

      Hi bri21

      been to doc to have more bloods done. Can't get in for two weeks then can't get to see doc until ten days later. I have wrist and hand pain too sometimes, on the inside of my wrist and on Palm of my hands. Does anyone else get that. I've also developed tendonitis at the back of my heels. Is that related to PMR does anyone know?

       

    • tina-uk_cwall
      tina-uk_cwall susan32767

      Posted

      Hi Susan, don't know about the heels query, but prior to diagnosis I had pain in both my thumbs and on the outside area of my left wrist. Since preds the pains are no longer? Christina 
  • tina-uk_cwall
    tina-uk_cwall susan32767

    Posted

    Hello Susan, I really sorry to hear that you've come so far but are experiencing a few of the old symtoms again. I'm not medically qualified so cannot offer you advise although hang on a bit longer and members of the forum with much more knowledge and experience will be on hand to offer advise.

    one thing I will say is I understand that the 3 mgs stage is a bugger to get past and if you're experiencing these pains under no circumstances taper further. If you have been stuck on 3 mgs for ages that's telling you that the inflamation is still hanging around but hang on in there and as I said definitely do not taper further. All the best, christina 

    oh yes, sometimes I get a sore throat that amounts to nothing. I've personally never worried much about it.

    by the way what has your Dr suggested, has he been inclined to up your preds one level or not?

    • susan32767
      susan32767 tina-uk_cwall

      Posted

      Thanks Christina

      im due back in two months for more blood tests. I went last month but they were up but I had a bacterial lung infection and he said they could have been slightly raised because of that. Will have to go back and have more done cos definitely something has changed again  

    • EileenH
      EileenH susan32767

      Posted

      He should be checking them sooner than 3 months if they were raised. And yes - with MrsO now you say you have tender spots on your head - does it feel as if your hair is lying funny? (Really graphic I know but that was how my scalp pain felt!). Anything else?
    • tina-uk_cwall
      tina-uk_cwall susan32767

      Posted

      Yes, they are right any other illness, eg cold, flu, cold sore etc will raise the blood levels, well they do for me, every time I have a cold sore and a blood test the results always come back raised and my Dr instructs me nit to taper until my blood test is normal and I'm feeling better. But of course they could also be raised because the inflamation has raised as well, flare up and in that case you definitely need to take a higher dose for a bit. PMR /GCA, who'd gave it?! Christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      A lady on another forum got a panicked phone call from her (very newbie) GP saying she must raise her pred back to 15mg because her CRP was high. She was already being treated for a chest infection. I found a study that had looked at this: your CRP can go up to as much as 60 just because of a chest infection. So the doc is right to say wait - but I think should have repeated the blood test as soon as the infection was improving - when it should be falling even if not yet normal. If it is still rising - look further. But a lot of doctors don't know that CRP goes up too.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey susan32767

    Posted

    Susan, it sounds as though you need to increase your dose back up to at least 5mg.  If you soon get relief in your pain then it will be proof that you are having a flare in your PMR.  However, if you have succumbed to the linked condition, GCA, then you will need a higher dose.  At the moment, it's a case of trying the small increase in dose to get an answer.......and rest to give the increased dose a chance to work.

    Also, if you are someone who had raised blood test markers at diagnosis, then these should be repeated and might also give some answers.

    If you haven't had a Vit D blood test, then do ask for one as any deficiency can lead to pain similar to that of PMR.

    As for your doctor "not getting that bit" about the sore throat, he has probably rarely, if ever, treated anyone with GCA - patients do present with different symptoms.

    • susan32767
      susan32767 MrsO-UK_Surrey

      Posted

      thanks MrsO

      i need to go back to seethe doctor,  I think you get to a stage sometimes where you think you can just carry on and it will get better again but hey ho not always the case. 

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