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Methotrexate - not good for me?

Posted , 5 users are following.

DebbieHurts
DebbieHurts

My dr wanted me to try MTX to see if it helped me go lower on the prednisone.  I agreed to try it and have kept on it for five weeks.  I do not feel an iota of better; in fact these weeks have been the worst I've suffered in a long long time.  So achy and stiff hurting pain when I walk or do most anything.  I've spent a lot of time sleeping on the sofa.  I can't stand it one more week!  Wouldn't it have helped by now, if it was going to?  The last two days I've increased the pred to 15 (from 12) just to see if I can get some relief, but so far I don't feel better.  I see the dr again next week.  

0 likes, 22 replies

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  • gillian_25383
    gillian_25383 DebbieHurts

    Posted

    I am surprised your doctor did not warn you that it can take up to 4months for methotrexate to kick in.My rheumatologist did and told me to keep on with painkillers. I did and touch wood am feeling a lot better now.Sorry about your poor experience
    • DebbieHurts
      DebbieHurts gillian_25383

      Posted

      Thanks gillian.  Could you tell me what pred. dose you were on or are on now?  Also did the MTX make you feel awful at first and get better?
    • gillian_25383
      gillian_25383 DebbieHurts

      Posted

      I had had to come off prednisolone so was in lots of pain.Started methotrexate at 15mg /Week Nausea at start but increasing folic acid to 6days/week helped (not on methotrexate day)Each time dose increase same problem but after few weeks eased off. Only major problem acid reflux out of control.However can now get in and out of chair o.k. and reducing painkillers hand over fist.See rheumatologist in three weeks
  • paul48171
    paul48171 DebbieHurts

    Posted

    I have been on Mtx 10mg once / week for a month now and it allowed me to reduce my steroid use from 20 mg / day to 10 mg. I have just gone to 7.5mg but am feeling it . I am off to the GP today for bloods and a review of meds. Will be continuing on the mtx I reckon.
  • DebbieHurts
    DebbieHurts

    Posted

    You seem to have a good report of the MTX.  Is it all my imagination?  Yesterday I had blood on the TP, so I was afraid it might be giving me blood in stool.  Scared me.
    • gillian_25383
      gillian_25383 DebbieHurts

      Posted

      Hi Debbie, if this is unusual for you and it did not feel as if you had strained too hard I would mention it to the GO.It may be nothing,it could be haemorrhoids either way although embarrassing it is best checked out as methotrexate can have some not so pleasant side effects and am sure they would rather you erred on the side if caution.Hope all is well; sure it will be
  • noninoni
    noninoni DebbieHurts

    Posted

    My pulmonary doctor thought I should try metheltrexate when next I saw my rheumie, so I was interested in people's experience.  But also I have been reading an excellent book called "Ending Medical Reversals" and so wondered if methyltrexate was essenticially functioning as a placebo. Of course placebos work- they make rheumies think they are helping the patient by trying something else! The answer would be in clinical trials.  Clinical trials are the gold standard for the safety and efficacy of new drug applications.  If two clinical trials show something works, then it probably does.  Otherwise, forget it.

           So I googled clinical trials, methyltrexate and polymyalgia rheumatica".   In one trial methyltrexate did nothing;  in another it looked promising in one paper; then on further review, it did not work.  This I read in a good review article from the Cleveland Clinic by Alison Clifford and Gary Hoffman published in June 2014 that also looked at GCA and methyltrexate.  The nice thing about an article like this is that they can find articles in medical journals not available free  on Google.  Medical articles are often expensive!  Again, methytrexate did not work and was no better than prednisone alone.  

          Since methyltrexate also has side effects on its own, it may be doing more harm than not taking it.  But busy doctors are often/usually not up to date on the latest clinical trials and reviews, so they prescribe it anyway.  It can be threatening to their self confidence to site clinical trials showing it does not work, so if my doctor prescribes it, I may just say nothing but also not fill the prescription.  

    • gillian_25383
      gillian_25383 noninoni

      Posted

      In my case methotrexate is doing fine and all blood work going in right direction. Not a placebo;it works by suppressing immune system which is overactive in case of PMR plus if any other inflammatory arthritis present at the same time it camps that down too.Not a cure but there again there is NO cure just a suppression of symptoms
    • noninoni
      noninoni gillian_25383

      Posted

      are you still taking prednisone?  How do  you know it is the methytrexate and not the prednisone?
    • gillian_25383
      gillian_25383 noninoni

      Posted

      I know it is the methotrexate as I had to come off prednisone.Was warned to keep taking painkillers till it kicked in but after 4months it has my bloods are going in the right direction and a decreasing pain meds at a rate of knots.See rheumatologist on 19th;feel like hugging her even if I do have to start injections
    • noninoni
      noninoni gillian_25383

      Posted

             You might have managed a fast taper of prednisone quite well without methotrexate, but you will never know since you can't go back in time to redo it.  

           Methotrexate has not been shown to help people with PMR/GCA taper their prednisone with fewer flares and relapses.  Remember  40% of patients with PMR go into remission within a year anyway, so to say wait  4 months for methotrexate to work may mean the same as waiting 4  months for PMR to into remission.  

           Methotrexate is a pretty toxic drug and it is used for rheumatoid arthritis and it was originally developed for cancer.

             I haven't yet studied clinical trial effectiveness of methotrexate for RA or for cancer, only PMR and GCA.  

           

    • gillian_25383
      gillian_25383 noninoni

      Posted

      Hi,wish that was the case but I was diagnosed by rheumatologist at 45 with PMR and after 12 years of flares and relapses this time after 8months of pred had to come off due to side effects plus last year had heart attack.Sent back to rheumatologist who knowing my history put me on methotrexate as recent research she had read up on had showed methotrexate has slight heart protective qualities which in my case was advantageous plus no weight gain side effects (my last course of pred was a disaster in that respect).You have to have counselling before being prescribed methotrexate so had all the potential side effects gone over plus need for regular blood tests before I made the decision to go on it.Am full of cold and rang surgery who insisted I went for check over cos of being on methotrexate so they are keeping close eye on me.

      Hope pred works for you.First three times it did for me

    • noninoni
      noninoni

      Posted

      Should have asked : Gillian 25383- why did you have to go off prednisone?  Were you on a high dose?  How long had you been on it? Did you have GCA?  If you were on a low dose, how long had you been on it.

             I was just on a high dose twice but for only a short time, then back to the low dose- no problems.  

    • gillian_25383
      gillian_25383 noninoni

      Posted

      Hi,never had GCA.When diagnosed the standard treatment was:20mg /day for 1 week, then 17.5mg/day for 1 week, then 15mg /week for 1week then 12.5mg/week for 1week then 10mg/day for 1 month reducing by 1mg/month but putting dose back up to previous level if flare returns.This is still regime my GP uses.They do not like long term steroid use and neither does the rheumstologist if possible
    • noninoni
      noninoni gillian_25383

      Posted

      Yes pmr can cause heart attacks, especially in younger pmr  patients, due to the inflammatory burden.  There is confounding here because pmr patients almost always take preds.  So is it the PMR causing the higher heart attack rate, or is it the prednisone. But I wouldn't want to take methoprexate because of a slight protection against heart attacks- how slight?  It is a nasty drug too.  

          I will admit when I was on high dose preds for short times, I was ravenous!  I ate all day long.  But that urge has calmed down now that I am on a lower dose.  Now to lose that weight?  Eileen says it is possible.

    • gillian_25383
      gillian_25383 noninoni

      Posted

      Thanks Noninoni,unfortunately family history on both sides for cardiovascular disease is dire (my GP before he retired said I needed to buy a new set of relatives so you get the idea).Know methotrexate is quite a toxic drug but luckily dose for PMR is a LOT less than for can car treatment.To be honest the fact that I can get up in the morning and out of chairs without wanting to cry is good and as main carer for adult son the decision was not taken lightly and am mega vigilant for side effects.Will just have to see how things go;my rheumatologist has patients who have been on methotrexate for 30years without bad side effects so am praying I follow in their footsteps (I will be 87 then if still alive)
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