Methotrexate together with Pred. 😩

Posted , 9 users are following.

Today I was at my Rheumatologist and have come away completely confused. 

My CRP has now lowered and I'm quite back to normal in that case. 

I'm still on 21gm Prednisone and trying very hard to get down taking the easy slow method. 

My rheumatologist seems to think that I don't have pmr and I have Rheumatiod arthritis. 

She added that even though I had the symptoms of pmr it could have been the beginning of RA. 

She wanted me to continue with the prednisone and at the same time to take 10mg methotrexate once a week which will give me chance to wean off the prednisone quicker.  

I m very reluctant to to take methotrexate and in fact I am certain my problem is pmr ...

She has asked me to do a blood  test CCP ..adding that even if it comes back negative it doesn't mean that I don't have RA.  

I feel like a guinea pig and definitely feel so stressed to take methotrexate. 

She has given me another month to take the prednisone down another 5mg to 16 mg but insists I take the methotrexate at the same time. 

Help. !!!!

0 likes, 8 replies

8 Replies

  • Posted

    A lot of folks on this site including me have been led to Methotrexate under the guise that it can help one wean off Prednisone.  I have yet to read a single commentary from anyone that this has proven to be true.  Certainly had zero effect in my case.  Beyond that, you are...as the expression goes...robbing Peter to pay Paul.  By this, I mean you are simply trading one drug with side effects for another with side effects.  In the end, we all continue on Prednisone and have added in another drug where you have to monitor your liver carefully.  At that point, I quit Methotrexate cold turkey.
    • Posted

      Thank you Daniel

      I felt exactly as you regarding methotrexate. 

      The side affects seem much more severe than pred. 

      My rheumatologist is convinced now that I have RA and not pmr. 

      What convinced her was that I was struggling to reduce the pred from 21-20mg. I told her I had a heavy feeling in my upper arms so I went back to 21 mg ...she said it's RA and not PMR. 

      When I first started the symptoms of PMR I couldn't move from one side to the other. I couldn't pull my pants up or down my neck and shoulders were frozen. I felt like my arms were glued to my sides. My legs and feet hurt. 

      How can she say this is RA. 

      I am not going to take methotrexate under any circumstances. 

      I do a CCP blood test.  Let's see what the results will be. 

    • Posted

      Thanks for the update Daniel. I going to stay with Pred, till I have a problem. Think positive and smiling. ☺️
  • Posted

    Hi I understand I am now on 10mg pred and 20mg of methotrexate and feel as if I have been pushed into meth, as I do not really understand what this has to do with pmr, but it has been confirmed that I have severe RA.  I really also do not think it is helping me to reduce pred. I got down to 3mg and had a flare so that was when I was put back to ten, also had injection to help.

    i go back on the 27th July to see my rhemy and think it's time we discussed my medication, all of a sudden I am having problems with my lungs(now just found nodules) so need anther ct scan, I don't know if this is caused by methotrexate so will have to ask. 

    • Posted

      Margaret Hi there

      Sorry to read you are going through a really rough patch.  It's no fun. :-(

      Your rheumatologist most likely prescribed methotrexate due to severity of your RA ...

      Please let us know how you are getting on and I wish you a speedy solution.  

      Di

    • Posted

      If you have RA then methotrexate is the first line approach so that is quite logical. However - mtx can cause lung problems and if I were you I would be insistent on having this cleared up properly.
  • Posted

    You could refuse until she can provide evidence that this is RA rather than PMR or you could seek a second opinion - or you can try it. Has she explained why she now thinks it may be LORA? And provided tests that back her opinion?

    I don't think you need to feel you are being used as a guines pig. It is the first line approach for RA and is also a recognised approach in PMR/GCA to try to reduce the pred dose better/lower than using pred alone although there is no real study evidence that it works: of the 3 studies done, all small and not particulalry powerful, one study said it helped, one said it didn't and one didn't come to a conclusion. The one that found it did help reduce the dose of pred was followed up by the study group 5 years later and then they found that although patients has achieved lower doses using mtx, it didn't change the pred-related side effects - which rather begs the question "Why bother then?". 

    In RA it can take up to 6 months before mtx has an effect. In PMR there are no time scales. I recently agreed with my rheumy to try mtx because I have had PMR for 14 years and have been on pred for 9 years now. I have always rejected the concept - because I believe it is just as possible to reduce the pred dose by using the slow approaches though it probably isn't as fast as the average rheumy would like! - but more recently I have felt that it is probably worth trying it PROVIDING IT DOESN'T MAKE YOU FEEL WORSE!!!

    Unlike Daniel I do know people who have tried mtx and it helped them get to lower doses of pred - they know it helped because when they tried stopping the mtx they had significant increases in pain. One friend, heavily involved with the Scottish PMRGCA charity, was on mtx with absolutely no side effects for a few years and it did get her to a lower dose. Last year though they decided to try lefflunomide and she says she felt it "kick in" and within 8 months she was totally off pred. She also had no side effects from the leflunomide. 

    I, on the other hand, tried mtx for 4 weeks in June. The first week was fine - I had no nausea which is one of the really common effects. I had a bit of abdominal cramp and was a bit "loose" that first week - and that was worse the second week. I didn't have diarrhoea but when I needed to go - I needed to go! It really wasn't conducive to being out and about! I took the mtx on Saturday night and Sunday morning and about Wednesday I developed a headache - I never have headaches - which lasted to Friday night. That persisted each week, as did general aches just like PMR and itching. By the end of the second week I was feeling tired - and by the end of the 4th week the fatigue was overwhelming. I actually felt as bad if not worse than I did in the 5 years of PMR without pred! I had already told the rheumy I would stop it while we had a trip to S Korea for a week for a meeting. By the time we left on the Thursday I felt so much better and managed the flights well. Had I still been on the mtx I don't think it would have been possible. I haven't started it again and can now walk into the village normally - which I couldn't on mtx.

    About a third of patients can't tolerate mtx and stop because of the side effects. That is even in RA where it does play a very important role. It is personal decision, I decided to try it but I really can't see the point of taking a drug that makes me feel as I did without pred at all. Now to break that to the rheumy!

    • Posted

      Eileen what a really informative post. Thank you so very very much for all your intel. 

      My, my, you certainly have had a gross time with first hand experience ...

      I value so much your opinion, and you can't believe that you have given me the courage to argue with my rheumatologist...

      I don't want to take the methotrexate and I insisted that I continue with the slow taper. Rheumatologist was a little offended, but when all said and done it's my body.

        In the meanwhile , and words of Frank Sinatra ..."I did it my way".....

      I shall look into getting a second opinion. 

      I have to complete a  CCP blood test first. 

      Again my humble thanks.  

      🤗

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