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  3. Polymyalgia Rheumatica and GCA

PMR symptoms are similar to my Statin allergic reactions.

Posted , 5 users are following.

Lee-Colorado
Lee-Colorado

About 7 years ago my Dr placed me on Symvastin because my younger brother ha a quintuple bypass and my maternal side ha heart problems. about a year after starting statins I started experiencing muscle cramps in just about every muscle in my body when I got out of bed in the morning. These cramps persisted for about 2 hours and then I was OK until the next morning. I took myself of statins (the internet is an amazing resource) and my cramping stopped.

I will tell you, that pain and cramps I experienced before GCA and prednisone was very similar to the cramps I experienced with statins. If you are on statins and since we share a genetic desease you could have the same allergy to statins that I have. Discuss this with your physician before altering your medicines. If stopping statins help you, let the forum know. It took me about a week to become pain free but we all know our condition is forever. Damn those Vikings!

 

0 likes, 32 replies

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  • mrsmop
    mrsmop Lee-Colorado

    Posted

    And I am sure you're right about the big drug companies pushing drugs.  We had letters from our GP about a year ago, telling us that beccause we are on long term steroids, we should take Adcal D3 daily.  The letter was actually written by the drug company with our GPs' names at the top.

    I tried taking it for a while, one of my GPs told me to take half the dose that was recommended in the letter.  It made me feel odd, can't put a finger on it but I stopped taking it.  I told another GP when I happened to be in the surgery and she said that several other ladies had said the same thing.

    Now, it could be that some of us might need something but I want a doctor to prescribe the drugs that I need, not a drug company.

    • EileenH
      EileenH mrsmop

      Posted

      You do need Adcal or something similar when on pred - it is to try to prevent the pred causing reduced bone density. It has been shown that taking Adcal or its like changes the effect of pred on calcium metabolism in the bones. Infinitely preferable to not taking it and having to take alendronic acid or something later on when you have developed osteoporosis. It's nothing to do with drug companies - they don't make much out of calcium supplements! 

      There are several versions of calcium and vit D, some are better than others. You can also get separate calcium and vit D tablets - but you DO need them or a very good calcium containing diet plus a vit D supplement.

    • mrsmop
      mrsmop EileenH

      Posted

      They gave me Alendronic Acid when I started on the Pred.  I have just been changed to Ibandronic acid because of swallowing problems.  I have a a diet full of calcium and I have regular dexa scans and, thus far, no sign of osteoporosis. 
    • EileenH
      EileenH mrsmop

      Posted

      In which case it is highly probably you don't really need the AA - especially if you have swallowing problems. If you have any history of reflux, hiatus hernia or similar things you should not take bisphosphonates. People with good bone density should be given good calcium/vit D supplementation and bisphosphonates kept for later. They shouldn't be taken for more than 5 years either - not forever as the manufacturer suggests. If you don't take calcium tabs at least take vit D - or have a blood test to make sure you are replete. Low vit D means that however much calcium you take it won't be absorbed properly. 
    • mrsmop
      mrsmop EileenH

      Posted

      I have Cicatricial Pemphigoid and that is probably causing the swallowing problem.  I am currently waiting for the next dexa scan but suddenly the list is endless.  There isn't a huge amount of joined up thinking here and I have said I would like to come off the Ibandronic acid but I thought I would wait and see what the next dexa scan says am also waiting to see the MaxFax people.  

      Bloods currently ok

  • elaine_19679
    elaine_19679 Lee-Colorado

    Posted

    I too have been taking pravastatin for about a year and have just yesterday decided to stop taking them. Ii am being treated for GCA and PMR  after being diagnosed in October  2013 and have had so many side effects from the pred I thought I was going mad. Then I broke my ankle and fell over a few times.

    i was just beginning to feel more human and have managed to get down to 10 mg and the stomach problems I've had for years which had been managed, got out of control and I feel so ill I'm totally fed up.

    the hospital say I have gastritis and have changed my tablets to lansoporel

    and I decided to stop the statin to see if it helps .

    on top of that I'm exhausted after a short walk again so it's back to the drawing board.

    this thing never let's up does it?

     

    • EileenH
      EileenH elaine_19679

      Posted

      Did it occur to anyone the statin might have led to the PMR? Do you also have GCA? (I only ask because many people say they have both but really only have one manifestation when you enquire).
  • elaine_19679
    elaine_19679 Lee-Colorado

    Posted

    I did ask if the statins had anything to do with the pmr but my GP said unlikely, as I knew he would.

    I was diagnosed as probable GCA by my rheumatologist but the biopsy was inconclusive because the length of the sample was too short and I had been on 45mg of pred before the biopsy was done for two weeks.

    oh to feel good for a while!

    • Lee-Colorado
      Lee-Colorado elaine_19679

      Posted

      I am sure I have GCA because of the vision loss episodes. I am not sure I have PMR because my prednisone dose was 15mg when I suffered vision loss during a relapse. I am now being held at 25mg because of a trip that I am taking.
    • EileenH
      EileenH elaine_19679

      Posted

      You will Elaine - but not just yet! It does get better - honestly. And in some ways many people seem to get through GCA faster than "just" PMR.

      PMR is just a name for the symptoms of stiffness and stuff - it is actually one of the symptoms of GCA too.

  • elaine_19679
    elaine_19679 Lee-Colorado

    Posted

    Thanks Eileen ,

    you've helped me lots of times to get things straight in my mind and I know lots of people are far worse off than myself.

     

  • elaine_19679
    elaine_19679 Lee-Colorado

    Posted

    Sorry Eileen  somehow I didn't finish my reply.

    i just wanted to say if I could just get some relief from this stomach problem I could sort of cope with the rest.

    ive tried lots of things suggested and still have ended up with gastritis. I'm now waiting for an endoscopy.

     

    • mrs_k
      mrs_k elaine_19679

      Posted

      Google pmr gca northeast and when you get there go to the Newsletters, the one dated Nov 2010, Page 5.

      That tip from a patient, has helped so many of us to stop the stomach problems.  You can take it just before every meal.

      The best tablet your GP can prescribe is Zantac.

  • elaine_19679
    elaine_19679 Lee-Colorado

    Posted

    Thanks Mrs K

    sorry to be a pain but where do I find newsletters. I'm a member on there but can't find it. Do you think it's wrong to stop taking the statins I've been on for over a year ? 

    • EileenH
      EileenH elaine_19679

      Posted

      On the homepage on the lefthand side you will see a list of nearly 20 things starting with Homepage, Our Aims and so on. Fifth from the bottom is NE Group Newsletters.

      I'll send a private message with the direct link. 

    • EileenH
      EileenH elaine_19679

      Posted

      Ooops - should have said - scroll to the top of this page and look on the right hand side - you will see Messages, click on it.
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