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Numb feeling?

Posted , 7 users are following.

catherine34621
catherine34621

After being sent for a second opinion, and GCA being confirmed, from Nov.2017 to now I have reduced Pred. from 20mgs. to 10mgs. on Prof. who is treating me's instructions. I am also taking Leflunomide 10mgs. without too much trouble. In March 2016, my left foot went partially numb and I was sent for tests which were o.k. my right foot went the same some time later. they have been the same up till now, but I reduced the Pred. to 10mgs.last Wed. and the numbness has worsened today, I am also breathless, which seems to increase also as I reduce. The Cardiologist who I see say's this could be the GCA  (I have had a heart scan and ct scans also) I am also "borderline anaemic" as well but don't take anything for that. I just wondered if anyone else had the same experience while tapering. thanks for listening.

 

1 like, 6 replies

6 Replies

  • catherine34621
    catherine34621

    Posted

    Sorry, me again, should have said reduced Pred. from August 2017 from 20mgs. to 10mgs. now.

     

  • EileenH
    EileenH catherine34621

    Posted

    Do you mean that you were only ever on 20mg pred for a confirmed diagnosis of GCA? That is a very low dose for GCA.

    The worsening numbness COULD be due to the leflunomide - paresthesia is listed as a common side effect. I'm assuming the numbness started before you were put on leflunomide? Breathlessness is also listed as a side effect and cough is also one of the things that should be reported since leflunomide can cause lung problems.Has your doctor considered that at all?

    • catherine34621
      catherine34621 EileenH

      Posted

      I started on 40mgs. of Pred. in Nov.2015, my inflammation markers have never gone low enough, so hence the second opinion. The numbness preceded the leflunomide and so did the breathlessness. The Cardiologist started me on Beta-blockers and changed my blood pressure tablets from Ramipril to Losartan when I told her about the breathlessness, the other tablet is Bisoprolol. I do a lot of walking and this is when I get out of breath, I have no problem otherwise with breathing. I sometimes think I worry too much but after having waited for just short of 3yrs. from start to finish for a diagnosis, (for which I will be forever grateful, not for the wait for the diagnosis), the relief is mixed with trepidation. Thanks Eileen for your time.
    • EileenH
      EileenH catherine34621

      Posted

      OK. That makes more sense to me. 

      Pred can cause breathlessness - but to be honest, I imagine there will be a lot of us who say we get breathless when we walk too much! Pred doesn't cure the underlying autoimmune disorder that causes the symptoms and your muscles remain intolerant of exercise. You have to build up your stamina VERY slowly - I started with a slow walk into the village and back, maybe 300m each way, and then built it up over a period of many weeks, first working on distance and once I had a convenient circular walk I started to build up speed. It was probably 7 or 8 months before I got to a decent level. We walk most days for half an hour sometimes more but I can't hurry or walk up steep slopes without getting breathless. It goes with the territory unfortunately.

    • catherine34621
      catherine34621 EileenH

      Posted

      Thanks Eileen, I expect too much too soon I suppose, I feel much better now.
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