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Slightly elated (but not too much).

Posted , 7 users are following.

catherine34621
catherine34621

After 2yrs. of trying to get down from 20mgs. of Pred., being sent for a second opinion, finally getting diagnosed with GCA  and tapering down to 6mgs.+10mgs. of Leflonomide, I thought I was really doing well. I was due to drop to 5mgs. (I was tapering by 1mg. a month) but I didn't feel right, I got in touch with the Specialist Nurses and they got back to me and told me to go back up to 10mgs. as it might be the start of a flair. I could have cried, I then saw the Prof. who is treating me and was told that my CRP was up to 27 from 11 a few months before. She increased the Leflunomide to 20mgs. andtold me to carry on tapering by 1mg. a month as before. I have been really worried in case this didn't work, She reviewed me today, and to my immense surprise told me that my CRP was now down to 5. and all the results are so far normal, I can't praise her enough, she has in the short time I have seen her asked me how I felt first, rather than bombarding me with test results. I know I am not out of the woods yet, but it's the first time I have left the Hospital with a spring in my step, I think the good Rheum. are worth their weight in gold!

3 likes, 6 replies

6 Replies

  • EileenH
    EileenH catherine34621

    Posted

    Good - hope it continues like this.
    • EileenH
      EileenH catherine34621

      Posted

      However - I do feel I need to tell you about the friend who had a very good response to leflunomide last year, methotrexate had lowered but not eradicated the need for pred. Within a short time she felt the leflunomide "kick in" and in 6 months had reduced from 7mg to zero pred. She was well for about a year altogether before developing the signs of peripheral neuropathy in feet and hands -  the medics stopped the leflunomide immediately. She was OK for some weeks - and then the inflammatory markers shot up and she was as bad as at the beginning of PMR and was back to 20mg, now on 15mg. She has asked to try a lower dose of leflunomide - we'll see if it works.

      It has worked for others - but it does have downsides and you must be vigilant. Pred is a minor evil compared with peripheral neuropathy. Good luck.

    • catherine34621
      catherine34621 EileenH

      Posted

      Thanks for the warning Eileen, Ihave had numbness in my feet for over two years now, Iv'e been tested and they said it wasn't neuropathy, I also have scoliosis so it could be linked to that, I have had periformis syndrome as well and sciatica, I 'll keep vigilant. Thanks again for the advice.

  • amkoffee
    amkoffee catherine34621

    Posted

    You are so right. I have a great doctor as well. Her 3 most redeeming qualities are: she is compassionate, she remembers everything about me and she calls me herself when there is something important to discuss about my health. That right there is extremely rare in the US. I had to wait 4 months to get in to see her, all the while my PMR symptoms were flaring but it was all worth it. I am happy that you have that spring in your step and really appreciate that you shared your good news.
    • catherine34621
      catherine34621 amkoffee

      Posted

      I waited about the same time to see this lady. It makes all the difference when you have confidence in the person you are seeing.
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