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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

20 Replies

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  • MariGrace
    MariGrace MR._BELLA

    Posted

    Dear Mr. Bella,  I'm sorry for your pain and hoping you get help and relief soon.

    My personal experience with methotrexate was negative.  With the doctor's approval, I took myself off after miserable experiences.  The doctor has added it to my allergy list.  Aside from total hair loss, it caused me great grief and it will never pass my lips again for any reason whatsoever.

    There are list members who are taking methotrexate successfully. I'm very thankful it is helping them. 

    My PMR journey is at a year, have come from 60mg prednisone to 10, but unfortunately, I'm experiencing a flare as I write and will see the Rheumatologist tomorrow. sad

    My thought is that if I have to be on prednisone for the rest of my life (they have said that is very possible)... "Oh. well."  This pain is too much.  

    The doctor and his APN were very positive about methotrexate when I started it.  My body, however, had other

    ideas and it was a disaster.  It is good for some  - not for others.

    Take care and go slowly.  Sending good thoughts your way.  These decisions are certainly not easy and oh, so personal. 

    MariGrace

     

    • MR._BELLA
      MR._BELLA MariGrace

      Posted

      Thank you, I too hope you are better. I really appreciate your kind words. Hoping the best for you.
  • amkoffee
    amkoffee MR._BELLA

    Posted

    Well Mr. Bella you know what they say about opinions...they're like belly buttons, every one has one.

    ?It looks like your getting quite a few opinions too. And I've got my own opinion.

    ?I tried it just a few months after starting the prednisone and I was only on it for a short time. Even though I was taking folic acid I got sores in my mouth. (you have to take folic acid to combat the mouth sores from methotrexate) When I got on it my rheumatologist started testing my liver enzymes and they kept going up and up. She and I decided to stop it. I have since learned that I have a fatty liver. The methotrexate was not the only thing a fault though. I was also taking another drug that can hurt you liver and I had been taking it for about 10 years. Unfortunately the prescribing doctor never checked my liver enzymes. And another contributing factor is my weight. 

    ?So my opinion is... to tell the doctor NO THANKS!

    • MR._BELLA
      MR._BELLA amkoffee

      Posted

      Thank you. I am beginning to believe after all the responses, it would not benefit me to take Methotrexate.
    • Michdonn
      Michdonn MR._BELLA

      Posted

      Mr Bella, I think there are no shortcuts on this PMR journey. Many doctors are afraid Prednisone, they should be reading the latest articles. There is information out on the internet, I have shown my doctors some of the articles, ☺️
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