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symptoms or side effects?

Posted , 10 users are following.

Susanne_M_UK
Susanne_M_UK

I posted my details on the fixed thread, but just to recap, have had PMR for 5 years and was down to 5mg Pred daily. I was then just before Christmas diagnosed with GCA and am currently on 40mg.

I'm feeling very shaky, weak, slightly removed from the world and with awful night sweats, - I'm having to change my nightie 3 times a night!

My question is, - is this caused by the level of Preds or is it a symptom of GCA?

1 like, 66 replies

66 Replies

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  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Well, you were so right, Eileen. It turns out that my GP can't make the biopsy referral and she has now passed the request back to the consultant. You'd think he would have known that.

    Anyway, eyes checked today and ok so that's good.

    I have been signed off work for a further 2 weeks so far. Will see consultant in 2 weeks when he will look at starting to reduce the Prednisolone dose.

    Am feeling better about things today

    As you said, Mrs O, a biopsy may well be inconclusive and the diagnosis has already been made using the medical route.

    Thanks for everyone's support. It's good to be able to talk and get your knoweable views. :-)

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Susanne, well it's good to hear that at least you are feeling more accepting of the situation today - it does take some getting one's head around things following diagnosis.  Hopefully, it's onwards and upwards for you now but we're still here if you need us!wink
    • EileenH
      EileenH Susanne_M_UK

      Posted

      You probably feel better in general because you aren't struggling as much with everything including living. 

      There are several things that GPs have direct access to - but anything that requires much more than a technician provided test has to be approved by a consultant or the senior scientist in the department as being appropriate. Some things just aren't on the GP list. And yes, the rheumy should have known - I'd lay odds he was buck passing...

  • janet08828
    janet08828 Susanne_M_UK

    Posted

    Hi Susanne -

    Was diagnosed with GCA a couple of years ago - I hate to be a "wet blanket" (ok I know - no pun intended!!) - but I am still suffering from the terrible dripping sweat problem, any time of the day or night - I can be standing talking to someone and suddeny the sweat will start poring off me - very embarrassing. I have more or less got used to it now - just another little pleasure of either the pred. or the GCA - not sure which. On the odd occason it will suddenly hit me "I am not too hot, I am not sweating, I am not tired and I feel more clear somehow" and I think OK - hope ahead!!

    I was off work for a couple of months at the onset when I was on a high pred dose and since then I have been working (a physical job) and tapering the pred dose down - unfortunately too quickly the last couple of months.

    Hope you feel better soon - at some point you will come out the other side.

    Janet

    • Susanne_M_UK
      Susanne_M_UK janet08828

      Posted

      Thanks Janet. I thought I had got rid of sudden sweats when I was past the memo pause, no suck luck!

      I'm signed off for the rest of January, but that's just a start. My consultant wants me signed off until the Preds are stable. That could be a while and I wonder how I'll ever get back to work!

      My job is not physical, but when I went to work first day after Christmas, I was so confused and not thinking straight that it made me feel really uncomfortable. From going to be a on top of everything PA, to being mush and forgetting basic things was not nice!

    • EileenH
      EileenH Susanne_M_UK

      Posted

      GCA is covered by disability legislation which is a great help. I'm so pleased you have a realistic consultant. GCA itself is a serious condition - and the pred on its own causes enough problems.

      The brain fog WILL improve - I was on less than you and was able to continue working but I hate to think how many mistakes I had to iron out from translations! I struggled to remember things - but my memory is back to what it was now. 

      But the primary thought at present has to be: my sight is safe! 

      Good luck and I do hope things settle down very quickly - it does sometimes when we do our part too.

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Eileen

      Yes, my main concern is now relieved, eye sight is ok. I'm now not concerned about biopsy. As my GP said, the main concern is covered with the Preds and I will be ok. Forget about the biopsy, it will likely prove inconconslusive anyway

      Seing GP next week for further tests, as I had some inconclusive tests over Christmas at hospital when they thought I might have had a TIA, which I didn't, but they just want to check because I was very wobbly in my walk.

      Haven't even spoken about this before, as was just too much. Was sent by emergency ambulance to hospital Boxing Day eve when I collapsed, most likely due to stress and low blood pressure.

    • janet08828
      janet08828 EileenH

      Posted

      Eileen - hi... I am thrilled to read that your memory is back to normal this has been one of my niggling worries

      thanks

      Janet

    • EileenH
      EileenH Susanne_M_UK

      Posted

      If you have PMR as a symptom of GCA that can really make you wobbly and fall a lot, many patients complain of it. 

      Interesting you should say a query TIA triggered this all - I had had 5 years of mildish PMR (managed without pred) and out of the blue I had a TGA (transient global amnesia) which one of the consultants insisted could have been a TIA and another epilepsy. Both were ruled out emphatically. I had another TGA a few years later - at a point when the PMR was getting bad again although I was on pred by then - again no signs of TIA and noone disputed TGA as the diagnosis here in Italy. Hmmm - have always wondered...

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      I second Eileen's comments about PMR/GCA making you "wobbly".   I, too, found myself falling easily, especially during the early days of the illness - a sort of feeling of being off balance.  In fact, it took quite a few years for my balance to return to my 'normal' which seemed to eventually improve during a course of Nordic walking sessions - the poles helped with walking and staying upright!  My course (through Age UK) was free at the time, but sadly it was the last of the free ones.
    • groovy_chic
      groovy_chic EileenH

      Posted

      It is very interesting as I had a TIA only a few weeks before my PMR symptoms started. I wonder now if there could be a connection. One has to wonder
    • EileenH
      EileenH groovy_chic

      Posted

      If you have GCA there almost certainly is. Undiagnosed severe GCA can lead to stroke - and the symptoms may be very similar. Which, IMHO, makes it all the worse when GPs dismiss the patient who turns up with some of the symptoms.
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