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Have you tried Methotrexate for your PMR?

Posted , 15 users are following.

leonard12916
leonard12916

I saw my rheumatolgist today and after being on Prednisone for 22 months and only getting it down to 9mg, which has happened several times, she continues to STRONGLY insist I start Methotrexate to help reduce my Prednisone dosage!  She says I should at least give it a try even at the lowest dose for 3 months to see if it helps.  She simply wants me to do whatever we can to reduce my Prednisone because of her real grave health concerns about my being on it long term.  She says that if I don't start it at our next visit in 3 months she'll have to send me back to my doctor because she'll no longer be able to help me........and can bring in a new patient whom SHE CAN!!  I don't want to risk the side effects of Methotrexate so I'm in a real quandry here.  May I ask what experiences any of you have had with Methotrexate?

2 likes, 39 replies

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  • Dave-California
    Dave-California leonard12916

    Posted

    Hi Leonard,

    After my first ‘flare’ happened and pain levels zoomed back up my rheumatologist reviewed my blood tests and increase prednisone back to 20 mg and she also put me on methotrexate (25mg/week) with the intent that I would stay at 25mg/week for the entire time that my prednisone taper was actively being reduced down to zero.

    She identified that some of my symptoms developed from my preliminary long term steroid use and that methotrexate would assist me in maintaining a long taper to zero with less pain.

    I have been tapering prednisone approximately 1 mg per month and still taking 25 mg of methotrexate per week – it is now almost a year since I started with the methotrexate and I am at the 4 mg pred level and all is going relatively well.

    Most of my joint muscle aches (shoulder, thigh, etc.) are at a relatively low background level – the only bad issue is hand joint pain.

    C-reactive protein and ESR test results are now into the normal zone.

    I do not appear to have had any side effects and thus I think that there is some significant benefit from using a disease-modifying anti-rheumatic drug (DMARD) such as methotrexate. These drugs dampen down the underlying disease process rather than simply treating symptoms. Methotrexate reduces the activity of your immune system which typically is overactive in PMR conditions.

    I would certainly consider it worthwhile trying this combination.

    Best,

    David

    • misdiagnose
      misdiagnose Dave-California

      Posted

      We do see the experts (the NHS pay) for their opinion and if they advise on something they at least expect us to give it a try, and then say it is of no use, if this is the case. As you have had no adverse side effects, it was a useful suggestion. What is of concern is those consultants who feel that they need to prove their worth by prescribing something that the GP is not likely to prescribe. This happened to someone I know who requested a referral to a hospital consultant only to find that the consultant said that he didn't deal with minor complaints that the GP can easily deal with, such as a simple reduction of prednisolone. Unfortunately, with a condition such as PMR and GCA which are prone to flare-ups, we really need some level of control over our own prescription dosages.
    • leonard12916
      leonard12916 Dave-California

      Posted

      Hi David,

      Thanks kindly for sharing your experience, it's greatly appreciated.  It seems one's hears a variety of reactions to Methotrexate and until one tries it one doesn't know how it will work.  Many thanks.

      Len

    • leonard12916
      leonard12916 Dave-California

      Posted

      Hi David, I hope you'll attempt to answer a few questions here.  If you get your Prednisone down to zero is your rheumatologist hopeful of reducing your Methotrexate as well?  Has she said anything about trying to reduce it to zero or your having to stay on a maintenance level for some time?  It may of course be you will just have to see how it all unfolds over time.
    • Dave-California
      Dave-California leonard12916

      Posted

      Hi Leonard

      Briefly I have been informed by my primary rheumatologist that termination of methotrexate (MTX) is dependent on one’s overall reaction during the period of taking and completing the drug combinations. I live in California with good medical insurance and have the benefit of expensive but almost unlimited medical consultation and also rapid consultations – so I have certainly taken advantage of this.

      Beyond long discussions with my primary rheumatologist I have determined (by my personal non-medical research) that MTX seems to be the best example of a medication used as corticosteroid-sparing drug for the management of PMR; however, MTX doesn’t work immediately and it has very different reaction times to many patients typically varying from 3–12 weeks before you notice any benefit. In my case it was at least two months before I determined a positive reaction - I was nervous during this waiting period but very pleased when it gave me a distinct pain reduction and assisted in the erythrocyte sedimentation rate (“sed rate”) and C-reactive protein (CRP) test reductions.

      I am not really convinced that Prednisone plus methotrexate should be associated with a shorter prednisone treatment. I think that the long “taper” should still be followed in the range of a maximum of 1.0 to 0.5 mg per month actually based on a consistent percentage reduction. It also appears that steroid sparing and patients at high risk for steroid-related toxicity benefit from MTX during the “taper”. I think that this treatment can decrease the number of flare-ups and assist with a regular percentage reduction of the prednisone dose that is required to achieve and maintain remission. Also the corticosteroid-sparing effect of MTX may also be useful to decrease the risk of osteoporosis in patients with PMR.

      One of the least humorous issues with MTX is that it can react with alcohol and may damage your liver – so even as a fine California wine-a-holic, I gave up alcohol entirely – not easy!!

      My rheumatologist demonstrates that my progress is monitored both by my symptoms and by the two primary two blood tests of inflammation: “sed rate” and CRP. Her primary response to my regular consultations is that when my symptoms are gone (I’m the only one to identify these and I keep a daily diary), and my markers of inflammation are low, then she consideres that my disease is being contained by the treatment. MTX will be ceased when prednisone is zero, aches and pain are gone and blood tests are all normal. Let’s hope that is all at the same time !

      David

    • janet08828
      janet08828 Dave-California

      Posted

      Hello David -

      Thanks for that informative narrative on mtx.

      I am in the proccess of tapering and have been on mtx for most  of my prednisolone journey so it was good for me to read a slightly more positive outlook on mtx.

      I am lucky in that I have not suffered any major side effects and of course I am not thrilled with all the meds I am taking - but am hopeful that I am going in the right direction now!

      Janet

    • leonard12916
      leonard12916 Dave-California

      Posted

      David, thanks for your extensive comments.  May I ask how often your liver tests are done and if these show any signs of your liver being unduly affected?
    • Dave-California
      Dave-California leonard12916

      Posted

      Hi Leonard

      I started PMR with Prednisone treatment in February of 2014 and added MTX in June 2014. Since June I started having Hepatic Function profiles on a one month cycle and I have had no irregularities, so in December I moved to a 2 month increment. Now I am having rheumatologist appointments on a three month increment and thus will do Hepatic on those times. i also take CRP.SED, and Creatinine at these times.

      I keep a daily diary and I have my own average daily pain level chart (Excel) based on a number from 1 to 10 (1 being nothing to low and 10 being the worst). I determined the worst (10) being the pain level that I felt on the day that I was hit with PMR (agony). So now I try to be realistic with that daily pain intensity level and if I see something on the chart that looks like an irregularity occuring over a period of a week or so, I go and have SED rate to see if inflamation is increasing and if it is I'll do all the other tests to keep sound records.

      Interestingly enough, I have been having a yearly physical for the last 20-30 years (very common in the US when you are on a good insurance program), so I went back though all my history of blood tests and plotted them on a chart to see how I am doing when comparing my previous life to my current PMR life. It turns out that not much has changed - yippee !!

      I hope everthing goes well for you.

      David

    • constance.de
      constance.de Dave-California

      Posted

      I always use the 1 to 10 pain 'management', too.  It puts things into perspective.  I also use the 'Spoons Theory' to control my activities.  I give myself 20 'spoons'  per day and when I've used them all - that's it!!  Luckily, I have used very few of my spoons lately.  I'm getting there!

      Greetings from Constance

    • janet08828
      janet08828 Dave-California

      Posted

      Hi David

      Your pattern of prednisolone + methotrexate and rheumatologist appointments and blood tests sounds very similar to mine - apart from the fact that I have been doing it for a year longer.

      I am floating on clouds at the moment, I had my regular blood tests last friday - the rheumatologist has just phoned to tell me that the results were SURPRISINGLY good!!

      So I am taking the next step down with prednisolone! Fingers crossed!

      As for the methotrexate, I have taken 20mg orally once a week for approximately 2 years. 

      At my latest appointment with the rheumatologist he decided that we should try injecting it instead, he seemed to think that I wasn't absorbing the medication well enough.

      I had my reservations regarding side effects, but apparently if you can cope with the tablets there are fewer side effects with the injections as it by-passes the stomach were some people experience problems.

      Whether or not it is just a coincidence I don't know but if the result is surprisingly good blood test results it makes a good case for at least trying methotrexate.

      Just thought I would share my good news!!

      Janet

  • flightsimfrank
    flightsimfrank leonard12916

    Posted

    Hi Leonard, I have just started on methotrexate on Saturday. 15mg and followed up with folic acid on monday. Felt quite anxious and flared up a little but was able to work for a couple of days I have taken both and feel better. I can keep you informed of my progress if you like as i have just started, hopefully will be all good news but what works for one doesnt neccesarily  mean it will work for others.  I have been told that my R/A is most aggressive. This has affected me for a very short time so far and cant under estimate how rapid this is affecting my joints and associated pain. Bear in mind that this drug is mainly prescribed for cancer patients at a much higher dosage so the side effects would be far less for R/A sufferers. I am putting my trust in the consultant as i do not have an alternative. I have changed my diet to fresh produce, nuts like brazil,walnut,almond, hazelnut. fruit. changed from whole milk to semi skimmed, and flora pro active instead of butter  or spreadables. No alcahol.
    • leonard12916
      leonard12916 flightsimfrank

      Posted

      Hi,

      Thanks for offering to share your particular experience over the next while, that would be most informative.  I recognize however that each person may have differing reactions.  I look forward to your posts.

      Len

    • EileenH
      EileenH flightsimfrank

      Posted

      Do you also have PMR as you only mention RA? Methotrexate is the first line treatment for RA, in the UK at least, and I have no dispute at all with the use of mtx there. There is a degree of suspicion that the patients who benefit with mtx MAY actually not have had PMR at all but late onset RA which DOES respond to mtx and can present identically to PMR. 

      What I object to is doctors forcing it onto people with PMR rather than optimising the use of pred which IS proven in PMR or suggesting to patients that they will get off pred altogether which isn't proven.

  • Debkimly
    Debkimly leonard12916

    Posted

    I have RA and am now only on methotrexate.  I was originally on prednisone and my Dr. And my daughter who is a pharmacist both told me that long term methotrexate is the best.  If you have PMR methotrexate won't help but maybe your rheumatologist feels there is some RA.  It is probably worth a try at a small dose.
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