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Anyone had bloods clots after taking Prednisone for PMR?

Posted , 5 users are following.

Bababoyd
Bababoyd

I have read this happens when you are takeing high doses, about 40.  I developed them in my leg and the went to my lungs 5 4 months after I started pred..  I am not on blood thinners too. Hoped after 6 months I could get off, but the are still in my legs. They have never found any other reason for them except my meds. If this is so then I will have to stay on blood thinners as long as I take pred.  Anyone else had this?

0 likes, 6 replies

6 Replies

  • gail63312
    gail63312 Bababoyd

    Posted

    Hi...that's interesting I'm not keen on prednisone for the side affects so when I see doctors this is a concern..hope your of and thank you for information. .Gail. 
    • EileenH
      EileenH gail63312

      Posted

      Bababoyd - sorry that is a new one on me! I'm on blood thinners for another reason though and that will be for life whether I am on pred or not: the PMR caused damage to the cells in the heart that trigger the heart beat and as a result I developed atrial fibrillation. That increases the risk of stroke or heart attack because clots form - so the answer (amongst other things) is an anticoagulant. I don't have any side effects though and having the blood test isn't much of a biggy either. 

      Gail - you should not be on as high as dose as that, PMR only really needs 15-20mg. It is also a very unusual side effect and only found at high doses.

       

  • heather31241
    heather31241 Bababoyd

    Posted

    Hi, no i have not had blood clots, whilst taking pred. I have been taken of pred now as they were making me depressed and mood swings.

     

    • jean_b
      jean_b heather31241

      Posted

      Hi heather hope you wont mind me asking you -but i have had PMR for 4yrs and apart from the usual  problems of it -the pred has also effected me depression -weepy mood swings too. So if you have PMR and you have been taken off it --then what have they put you on to control the PMR.the doctor wanred me to go on antidepressants but i wont-because i had ben off them  for 3yrs when PMR hit me and it was a long hard struggle to get off but i did it -and dont want to go there again -maybe some input from you would help me -thank you 
  • Bababoyd
    Bababoyd

    Posted

    HI Heather,

    I have most of the ide effects + and my PMA is jumping up again.  They put my pred. up to 10 from 5 where it has been for three weeks, not making a dent on blood or pain.  She wants me to get off Pred. and not go higher so I will now be on Methotrexate 2.5 once a week.  SHe feels that I will lose my hair and feel sick a day or two after each pill, but help to get me off pred.  I too get very stressed and feeling very low as I keep getting bad news.  Maybe you could mention this drug to her.  I will let you know how it goes for me. Also has side effects, but don't they all.  I wish you luck.

    • EileenH
      EileenH Bababoyd

      Posted

      I don't want to put a damper on the idea but methotrexate won't REPLACE pred altogether - unless what you have is actually an arthritis presenting with the same symptoms as PMR which can happen. Methotrexate(MTX) can sometimes help reduce the pred dose because it changes the way the body metabolises the pred so that you get the same effect from a lower dose. In the most recent recommendations for PMR that I have seen they say MTX is no longer felt to have a role in PMR - the previous evidence from clinical studies was mixed: one said it helped, one said it didn't, one didn't know. It too has side effects which can be unpleasant. 

      I do appreciate the side effects some people experience with pred but there is at present no real alternative to pred for PMR. Some success has been had using leflunomide, in a trial with 23 patients who were unable to take pred for various reasons, 22 went into remission. On the other hand, I know 2 people who were on leflunomide and it has caused such severe serious side effects they have had to stop taking it. There is another drug which can be tried if nothing else works but I'm afraid I can't remember what it is called.

      Being stressed in any way will always have an effect on PMR so avoiding that is a big help with the pain and stiffness - and yes, I know how difficult that can be too!  The depression and mood swings can also both be part of PMR - I experienced both during the 5 years of PMR without pred. 

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