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Some Good News!

Posted , 11 users are following.

Artdesign
Artdesign

After a lot of drama with PMR & GCA the last 3 1/2 months, finally things have improved and all my tests were good with no permanent damage to my eyesight.

 Started reducing prednisone 5mg a week is the plan--- until I get from 40 to 20. At 20 or before is symptoms start, I will have more tests. Feeling better already. My vision is clearing up and the swelling in my face has started to go down which was affecting my droppy eyelids and vision as well. Sleeping better and so far no pain or swelling has returned.

Just wanted to thank everyone for sharing their experiences along the way. It's helped me understand more and ask the doctors better questions. I know there is a way to go still, but it feels like the crisis is over at last.:-)

2 likes, 14 replies

14 Replies

  • gaenor38609
    gaenor38609 Artdesign

    Posted

    Hi I was diagnosed with GCA and PMR last May, started on 60mg Preds and reduced by 5mg per week untill I was on 20mg then 2.5 until 10mg then 1mg at 8mg I had a massive flareup I was back on 60mg. Now I am on the way down again I did have a flare up at 12.5mg and was put back up to 20mg. Now I am on 10mg and am going very slow now drop down 1mg every month because I don't want another flare. I am so glad that you are doing so well, but please be careful don't drop to fast. I have also developed Diabetes. So between the GCA PMR Diabetes and OA and RA life is full of watching what I do and what I eat. However having said all that I am still standing and still going.
  • jeanne333
    jeanne333 Artdesign

    Posted

    Way to go .. I'm new to PMR myself .. but I've learned alreadyv.. don't drop to fast or you will be back to square one again . .
  • jeanne333
    jeanne333 Artdesign

    Posted

    I agree .. it does help to know others have similar symptoms and it isn't just in your head .. I've had to be on 20mg steroids from Oct to April for the last 4 years .. sometimes a higher dosage or in the hospital for IV steroids .. lungs fill up and the mucus clogs my pipes .. what a relief to know it is that ugly PMR
  • Ardern
    Ardern Artdesign

    Posted

    hi Artdesign

    I am in simmilar situation. I was diagiosed with TA in Oct started at 60 Mg and have been able to cut back to 17mg this week. 2 weeks ago was hard no energy stayed in bed or watch TV for the whole week.  the week before I was running 1.5 k and walking 2 k I am not sure what happen but I was able to start walking to 3.5 k route again on Wed of last week I hope to kept it up into next week.

    Good luck

  • Susanne_M_UK
    Susanne_M_UK Artdesign

    Posted

    Good luck with the tapering. Hope it works for you.
    • jeanne333
      jeanne333 Susanne_M_UK

      Posted

      I'm new to. PMR but I'm learning fast .. I was down to 7mg and had flare up (to fast a drop) now I'm back to 20mg .. I'm holding but barely .. now doing a slower drop .. drop to 15mg in 2 weeks then every 3 or 4 weeks I'm to drop 1mg until I reach 10mg then doctor will run tests
    • Anhaga
      Anhaga jeanne333

      Posted

      As you have already had a flareup I suggest you consider a much smaller drop from the 15 mg.  Advice is to drop only 10% of the dose at a time, and at that to take several weeks to do it.  I've been (successfully so far) tapering from 10 and now reaching into 6.5 territory, since about September.  No flares, but because I was going so slowly I was able to stop myself a couple of times from having a flare by pausing a few days longer at a current dose.  As has been said before - it isn't slow if it works!
    • Anhaga
      Anhaga

      Posted

      Sorry, I meant drop from 20 mg to 15 mg is too big for one step. 

       

    • jeanne333
      jeanne333 Anhaga

      Posted

      That's my thinking too .. I'm not rushing the drop as my breathing is effected now .. I breath better on 20mg when it is cold ..
    • jeanne333
      jeanne333 Anhaga

      Posted

      I'm hoping the doctor see it that way too and let me monitor the drop .. we shall see
  • Elijo
    Elijo Artdesign

    Posted

    What a great feeling you must be having.  Lee[ iup the good work.  Yes, this site has been wonderful and very helpful!    El

    • Elijo
      Elijo

      Posted

      (2nd sentence above:   Keep up the good work!) excuse the error
  • JanSP
    JanSP Artdesign

    Posted

    I have good news. I've been O.K.'d to get Actemra from the Genenteck Pharm. Foundation at no cost instead of approx.$17,000 per year. Since it is only FDA recommended for RA not GCA and "off label" my medicare and AARP suppliment wouldn't cover it. Someone on this forum thought I was asking all of you to contribute to this crazy price.I would never do that. I was just looking for ideas about who to write to if the above organizations didn't work. The Actemra is supposed to allow me to get off pred and methotrexate. I hope it works. I've been on high pred (up to 80mg when the 60 for my other flares didn't work) on and off for 6 years as well as PMR and Primary Biliary Chirosis, another autoimmunine and I hardly ever used alcohol. I have so many side effects from the pred including my bones and muscles deteriorating and effecting my scoliosis which is effecting my breathing and ability to exercise something had to be done.

    My other good news is I had my second cataract surgery yesterday and everything went well. It will be great to drive again when the blurriness clears.

    I love this site - the info and support. 

    Jan

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