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What to do???

Posted , 11 users are following.

MR._BELLA
MR._BELLA

I got PMR September 2017. Started 20 mg pred stopped pain. Dr. cut me to 15mg all pain came back. Then went to Rhuemy and he put me on 30mg for 20 days, pain gone. Then went to 20mg pain still gone. On 20 mg 2 weeks then went to 17.5mg, all pain came back. I stayed on 17.5 for 8 weeks and I could hardly move I hurt so bad most of the 8 weeks. I finally called my Rhumey and told him I was going back up to 25mg. I did and the pain went away in about 18 days. I went down to 22mg about 10 days ago and the pain hasn't returned other than a little stiffness when I sit for a while and first thing of morning.

So here is my question. Went to the Rhumey today and he wants to put me on 15mg of Methotrexate a week, he said, so I can lower my Pred sooner. He said it will help keep the inflamation from returning as much and I can reduce faster. I told him I didn't want another drug that has side effects that are bad and he said Pred is the worst drug there is and I need to get off it sooner than later and Methotrexate will help do that. I need your help to make this decision. One other thing. I have learned I have to lower the pred by the dsns method or it will not work. Thank you, I value all of your opinions.

0 likes, 20 replies

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  • nick67069
    nick67069 MR._BELLA

    Posted

    There are few problems that come to mind after reading your post.

    1- It is unfortunate that your first reduction was way too large step and naturally caused the flare. Reduction should be no more then 10% of the dose and at 20mg that should have been only 2-2.5mg step.

    2. Your second attempt was in smaller steps, but it was done in rapid sequence, so it resulted with another flare. 

    What to do now?

    - I would recommend you look up slow taper ( DSNS method) on this site and plan your next reduction from 22mg. If 2.5mg are too large steps, then reduce just 1mg at the time.

    - Since  you have been relatively short time on prednisone, I think it would be ill-advised to mix another medication, especially that it helps only some, not all people with PMR and does come with it's own side effect.

    As far as prednisone being "worst drug there is ", that is a bunch of BS. It is the only drug that manages PMR symptoms and latest study from Mayo Clinic says that long term impact is negligent  and I guess your doctor(s) need refresher/update on latest scientific findings.  If it was me, I would not take Methotrexate , and use sensible reduction method in a future. 

  • Bethune
    Bethune MR._BELLA

    Posted

    Mr. Bella, it is a bumpy ride for sure. The first time I took methotrexate ( not such a good drug for you either) it helped me lower my Pred.  But I Gad flares eventually, and went back on both.  The second time the Methotrexate did not help at all.  I’ve also been on Arabia, Actemra and other drugs.  They did not help or made me worse.  The Pred has worked best, but I always eventually get flares. I was using DSNS and got from 30 to 10, but started getting all different pains in my calves and feet.  Now on 25 but not pain free though it’s tolerable.  Going to all my docs this month. GP, Rheumy, and a new vascular doc.  PMR meds seem to be a lot of trial and error.   It can be very discouraging , but usually hanging in with the Prednisone works to alleviate the symptoms.  Most people have their PMR go into remission in a few years.  I am not one of those as I’ve had it for 8 years.  Good Luck to you! 
    • MR._BELLA
      MR._BELLA Bethune

      Posted

      Thank you for your advice. Hope all works out for you.
    • eddylynn36538
      eddylynn36538 Bethune

      Posted

      I am still on pred after 12 years. Side effects were terrible at high doses but not so much now. At 5.5 fatigue was horrible but no pain. I couldn’t live like that. . So back to 7 and a lot better and my rheumy is okay with that    Will try going down after a month or two. 
  • EileenH
    EileenH MR._BELLA

    Posted

    Methotrexate does not guarantee you will reduce your pred sooner - it doesn't help everyone and as you say has side-effects of its own. 

    The original study here

    https://www.ncbi.nlm.nih.gov/pubmed/18578959

    is one they like to quote about the benefits of mtx in PMR - patients were able to reduce their dose at one year. However the conclusion they came to in the followup study 5 years later was "MTX-treated patients showed slightly less residual inflammation than controls, with the same incidence of steroid-related side effects."

    Which may have something to do with the findings in this study:

    https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

    where they found the so-called pred adverse effects are things that would happen to patients anyway.

    If it doesn't reduce the incidence of pred-related side effects, then where is the point? I know that some patients find they flare a bit less when reducing, but slow reducing usually deals with that anyway. I do think that it may be worth trying - if it doesn't make you ill that is - as it does help a small proportion of patients. You may be one.

    Pred is NOT the worst drug there is - I do wish doctors could take their blinkers off and would stop scaring patients half to death. But if that is his attitude, I doubt you will change it and maybe another doctor would be more reasonable in discussion.

    As nick says - your problems are almost certainly due to messing about at the start. It often happens that a flare caused by precipitate reduction is harder to manage second time around. And your reductions since have been too fast.

    And I gather you already have learnt the benefits of this:

    https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    • doni89057
      doni89057 EileenH

      Posted

      THANK YOU for taking the time to share those links! I am a researcher/studier, and had found that article showing no more long term effects with Pred than in the general population (other than cataracts) but didn't bookmark it, and I had not been able to find it again to save my soul. It was driving me crazy trying to find that thing, but you have started my day with a smile as it's now in my saved folder. I, for one, also really appreciate when people back up their statements with evidence and science when possible. I have decided to discontinue working with my current rheumatologist and have an appointment with a new one in August. I'm going armed with science.

    • MR._BELLA
      MR._BELLA EileenH

      Posted

      Thank you so much Eileen, I will read all the info you sent. This has really been a real hard lesson to learn but I think the lesson is getting easier with your help.
  • Michdonn
    Michdonn MR._BELLA

    Posted

    Mr Bella, I started at 20 got relief, till I was tapering from 8 to 7, bad flare had to go to 30 mg for 6 weeks to get relief. Now tapering from 7.5 to 7 and doing fine so far. I never taper if I have any PMR pain. As soon as I have PMR pain I increase my dosage. I use the DSNS method to taper. I push myself to stay active, positive and try to keep a smile on my face. ☺️
    • MR._BELLA
      MR._BELLA Michdonn

      Posted

      Thank you, I know how hsrd it is to keep a smile on you face. I congratulate you for that. Keep that smile.
    • Michdonn
      Michdonn MR._BELLA

      Posted

      Mr Bella, I believe that be active, staying positive and putting a smile on my face, helps me moving forward on this PMR journey. Some days you have to push yourself. Just like that 1/6 mile walk with a cane about a year ago, God that first walk hurt. This PMR journey can be a long painful one, it is not easy, but there is a tremendous information and wisdom here on the forum. Good luck try to be positive and smile. ☺️
    • Michdonn
      Michdonn MR._BELLA

      Posted

      Mr Bella, we are all on this journey together, we help and encourage each other. I am always glad to help others as others have help me. As I said before tremendously amount of knowledge and wisdom on this forum.

      Good luck Mr Bella. ☺️

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