Advice on Methotrexate

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I have been on prednisone for over 4 years for PMr.  WAs really diagnosed by my endocrinologist and have never had a successful rheumatologist encounter.  He sent me to a new one to get me off the prednisone (i have tried weaning over the years and get to a certain pOint and always flare and start over).  But my sugar is becoming an uncontrollable issue due to the pred.  So the new Rheumy started a taper as he didn't even believe the dIagnosis as my numbers were all in the low range, except my RA factor which was really high when I first went to see him.  So he sent me for head to toe xrays.  No real sign of any RA at all.  So we tapered from 15 down to 10 mgs and my sed rate and CRP started climbing.  He jumped right to prescribing Methotrexate and said he was gong to treat me for RA !  No more taper of pred as I would be in too much pain according to my numbers- MAYBE if the methotrexate works we can reduce some more, he said.  So I asked why treat me for RA if I have NO signs of any joint inflammaion and all my pain feels muscular.  he replied that the Methotrexate would treat any inflammation and my RA factor WAS high.  I have NOT filled the prescription due to all the side effects and I already have other compromised systems, stomach, kidney stones etc.  And the point to going to him was to get off prednisone and reduce my overall side effects from medication.  SO here's the questions; have any of you successfully used methotrexate to combat PMR - would it be worth the try do you think?  The side effects really put me off.  I am inclined to try another taper and see where my numbers and pain go before i add anything else.  Any advice?  Thanks!!

Gayle

0 likes, 9 replies

9 Replies

  • Posted

    Methotrexate does help a few and I believe that those PMR patients it helps perhaps have another inflammatory arthritis lurking under the PMR symptoms.

    I did take it for 2 years, but it did nothing for me. In the end I was beginning to get bad side-effects so it was stopped.

    The downside to most of these steroid-sparing drugs is that they can take 11/12 weeks to begin working and that's a long time if you are in pain. 

    It comes down to individual choice in the end.  Unless you try it you will never know if it works or not!

     

  • Posted

    Hi Gayle, my labs never showed their supposed readings but always showed inflammation. I have been on pred for 2 yrs, and about 6 mos. ago, rheumy added MTX  to wean me down on pred. It really helped me, and I did a rather rapid decrease. I am at 5 mg, no flares, now dropping MTX, a month at a time.  I had no side effects from it. Dr said most likely I will have to remain on 5 mg of pred. Hope this helps your decision  JUDY in MI, USA
  • Posted

    It doesn't work for PMR on its own - it may help to allow you to get the same effect with a lower dose of pred in the short term at least. There is an Italian study where they found it did help patients get to lower doses - but it did not make any difference to the incidence of pred side effects:

    "Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids M.A. Cimmino1 , C, Salvarani2 , P, Macchioni2 , R. Gerli3 , E. Bartoloni Bocci3 , C. Montecucco4 , R. Caporali4 for the Systemic Vasculitis Study Group of the Italian Society for Rheumatology"

    and their conclusion was:

    "MTX-treated patients showed slightly less residual inflammation than controls, with the same incidence of steroid-related side effects. PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years"

    I have a friend with PMR who is on MTX as well as pred and she is convinced it does make a difference to her. She has no side effects and still enjoys the odd glass of wine. 

    Have you tried the DSNS taper we go on about all the time?

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

    You don't need to "start over" if you flare - that is an unnecessary amount of extra pred. Using the DSNS way you see immediately if you are starting to flare - and go straight back to where you were OK. However - when you repeatedly flare at a given dose it is a sign you have got to the Holy Grail: the lowest dose that manages the inflammation.

    If you DO have RA - it is a possibility, late onset RA doesn't always show joint damage for a long time and LORA can present almost identically to PMR - then MTX would be the place they would start. I've come to the conclusion that when people are struggling then trying MTX may well be worth it. But when it stops working or you don't get on well with it - it isn't worth it and you should stop.

     

  • Posted

    Thank you all for your very thoughtful-and thought provoking replies.  I will revisit the DSNS taper and see where I want to go from here.  I may try the taper and see how I get along.  The rheumy also suggested supplementing with tylenol to control pain as I tapered - is this an OK idea, or should I stay at a pred dose that keeps me pain free before tapering again.  He does not seem to be very interested in really figuring out what is best for my particular case.  Or really interested at all.  Hard to find a PMR savvy doctor around these parts.  I will keep in touch!  Thanks!

    Gayle

    • Posted

      Before diagnosis I recall being kind of happy on the days I had a headache and had to take some aspirin for it, because that would have a minor but noticeable effect on what I didn't yet know was pmr.  I don't remember that tylenol ever had any effect on the pmr.  I never used aspirin specifially to help with the pmr because at the time I thought it was osteoarthritis and aspirin is supposed to be bad for joints in OA.  I've always been very careful with tylenol because it can harm the liver.

  • Posted

    There are a few things in your post that are worth teasing out....firstly, as Eileen OFTEN says, the goal is NOT to get off pred as quickly as possible. The goal is to get to the lowest possible dose that treats the symptoms - as long as the PMR is still active.

    What are you doing with your diet to help keep your sugars down? (this is a rhetorical question, not one for you to answer here).

    You may well have the first signs of LORA, but did you know that MTX is also used as a 'steroid sparer'? In may help you reduce the amount of pred you need to keep your (PMR) symptoms under control.

    I started on MXT over a year ago and it worked wonders - I was able to reduce from 20mg (I ws stuck there) down to around 7mg over time. It did take 3 months to really start working. I have NO side effects other than raised liver function tests, which is very normal and are being monitored.

    I have also started on Tocilizumab (Actemra) which has helped me further reduce my pred dose, now down to 4mg - 4.5mg. It's prescribed for RA too, but is showing promise to treat both PMR and GCA. Your rhuemy may well being thinking of going down that route - it might pay you to ask him the reasoning behind his treatment, and don't let him fob you off.

     

  • Posted

    One of my friends on another site is having to get off of prednisone because she is diabetic and her blood sugars were out of control and after trying for months to fix the problem they put her on methotrexate and have her tapering off prednisone. They also gave her tramadol for the pain. She says it's helping but i don't see how it can.

    • Posted

      It possibly isn't the PMR we discuss here - PMR is the name given to the symptoms of an underlying disorder and there are several. That is why people who struggle to get to a  lower dose of pred should be considered for other answers. But fairly typical for most of us with this PMR is that other pain-killers don't work. They may work in other versions.

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