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Opinions on Methotrexate please

Posted , 12 users are following.

shirley40391
shirley40391

Hi all,  I have had PMR for about 3 years.  I am on Pred and down to 7mg for the second time.  Not feeling too bad still pretty tough to get going in the mornings but nothing too horrendous pain wise.  I have been referred to a Rheumy team and they have suggested I try Methotrexate.   I was given a leaftlet and told to have a think and come back to discuss.  My follow up appt was today and I said that I thought I would give it a go but then I got a lot more info about side effects etc and have come away pretty frightened.  Also it appears that I will be on both sets of drugs and all the other stuff that goes with it (stomach tabs, bone tabs etc) for a least 3 months in the first instance and then slowly, very slowly reduce the Pred.   On the face of it I don't see that I have got anything to gain and a lot more potential misery if I decide to go ahead.  I am sat here with the new drugs but I thought I would have a good long think and ask all you lovely people who have helped so much in the past what your experiences have been.   Hope to hear from you soon - good or bad.  Thanks for being there!!

 

1 like, 19 replies

19 Replies

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  • Susanne_M_UK
    Susanne_M_UK shirley40391

    Posted

    I started MTX in January and am coping ok with it so far.

    My situation is very different from yours though. I have been on prednisolone for years, first with PMR, on a relatively small dose, and for the last 14 months or so, on a massive dose due to the arrival of GCA at the end of 2015.

    I've had several flares and have been up and down on the dose, but never able to go below 20mg. I'm currently on 40mg due to bad flare very recently.

    MTX was offered to me earlier in my GCA treatment, but I refused it, as I was also very concerned about the potential side effects. However, I finally agreed to start, as the preds are really playing havoc with my body and I'm desperate to taper down to a lower dose.

    I believe 7mg pred is often a sticking point on tapering, so you really need to think hard, as you are obviously doing, about whether you are prepared to take the risk or want to try to slowly taper the preds on their own.

    There is a lot of bad press about MTX, and the possible side effects are very scary. I've made the decision, but it wasn't easy.

    • Susanne_M_UK
      Susanne_M_UK

      Posted

      I meant to say, arrival of GCA at the end of 2014!
    • shirley40391
      shirley40391 Susanne_M_UK

      Posted

      Thank you for your reply...I am so sorry the PMR has turned to GCA it must be really tough.  When you are on such massive doses of pred I think it speaks volumes that you took so long to decided to go ahead with the MTX.  I hope things improve for you.

       

  • Sheilamac_Fife
    Sheilamac_Fife shirley40391

    Posted

    Hi Shirley,

    i can only tell you what I would do. Or in this case wouldn't do.... Judging by others 3 years isn't that long and to be at 7mg is good but as Susanne has said, lots of people have problems tapering at this dose. Have you tried the dead slow, nearly stop method? It's working for me. I'm currently going from 6mg to 5.5mg and I'm ok except for horrendous fatigue. I'm beginning to wonder if my Adrenal system hasn't kicked in yet.

    Personally, I wouldn't add any more side effect rich drugs to the mix, but only you can decide what is right for you. 

    Also my understanding was that Methotrexate hasn't been proven to work  with PMR, maybe for RA ??

    Please let us know what you decide.

    Sheila 

    • shirley40391
      shirley40391 Sheilamac_Fife

      Posted

      Hi Sheila, I think that looking at other people's horrendous experiences I am not doing too badly.  I don't really understand why there has been this sudden rush to get me to change my drugs.  It seems to me that although Pred has it's downsides it is generally on the higher doses.  I do have some thinning bone issues now because I wasn't given the tablets to prevent that until recently but I understand that it is repairable.  All in all when I compare Pred to the nightmare of potential damage on MTX I think I am better off  where I am and as you say take the dead slow reduction plan.

      Thanks so much for taking the time to reply - I am starting to feel calmer about the whole thing already!

    • Sheilamac_Fife
      Sheilamac_Fife shirley40391

      Posted

      That's good Shirley! Once you feel you have your body and what's happening to it back in your own hands, it feels so much better doesn't it. It's so hard to have reached our sort of age and be patronised and have our feelings and knowledge ridden over. Actually, I don't think your experience has maybe been as bad as that, that's more like mine!... Hehe...

      Good Luck with your tapering. 0.5mg over 4-6 weeks with DSNS method and I'm sure you will be fine. If not, come back on here and have a moan at me about it!...

      😉☺️

  • jo42444
    jo42444 shirley40391

    Posted

    Hi iwas diagnosed Dec 14 and put on 20mg of pred. Tapered down to 2.5 by Nov 2015 which was very hard. Increased pain fatigue and nausea each time i reduced. Nov 2015 pain shot up and Rheumy increased to 5 mg. So for 4months i have been on 5mg. Still have pain but not as bad. Went to Rheumy this week and he was upset that iwas still taking tramadol for pain 25mg a day. He wants to put me on methotrexate and when i started to ask questions he advised me to ask my gp to refer me to another rheumy. So I did. To me there is just not enough proof that it works for PMR and no proof that I have RA which it does help. I will try to keep reducing and see what the next Rheumy recommends. It is a very hard choice.

    Joanne

    • shirley40391
      shirley40391 jo42444

      Posted

      Hi Joanne,  I have only recently entered the world of the Rheumy Team at my local hospital having been refered by my new GP (my old one left the practice) and it has been a fairly unsettling experience.  I get the feeling that if you don't follow the path that they have mapped out there will be disapproval.  Having said that I know I am not going to be forced in to doing anything that I don't feel comfortable with.  Thanks so much for replying, I hope you find the next Rheumy is more understanding.
    • linda17563
      linda17563 shirley40391

      Posted

      That is exactly how it has been with my rheumie....her way only, well I was not going on MTX for anybody, so now see my doctor when need to, she leaves me to decide.  As Eileen has said before in her posts there is no eveidence that MTX gets anyone off pred any quicker....which is what we all aim to do....but feeling well! 

      My sister tried MTX (only 2 tabs) for RA, it affected her liver badly (she`s teetotal) took weeks for readings to become "normal". again...

      Good luck in your decision....

    • linda17563
      linda17563 jo42444

      Posted

      What is it with these rheumies, like spoilt children that don`t like to be questioned! frown It`s our bodies for goodness sake.
  • Dave-California
    Dave-California shirley40391

    Posted

    I’ve been on methotrexate (MTX) at 25mg/week for the entire time that my prednisone taper is actively being reduced (almost 2 years) and I’m currently at 4mg prednisone and doing quite well. I think that there is some significant benefit from using a disease-modifying anti-rheumatic drug (DMARD) such as MTX but I don’t think it replaces prednisone.

    I believe from detailed research and my rheumatologist that methotrexate reduces the activity of your immune system which typically is overactive in PMR conditions. These drugs (DMARD), such as methotrexate, ‘dampen’ down the underlying disease process rather than simply treating symptoms.

    My rheumatologist 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, hopefully to zero or close to zero with less pain, but definitely could not replace prednisone.

    I have just started to try a MTX taper - down to 20mg per week - no problem so far.

    As we all know PMR cannot be cured - it can go into remission and maybe that occurs if you actually reduce Prednisone to a low level or potentially zero, but some have to remain on very low doses of prednisone forever.

    Anyway, enough from me for the time being.

    Dave

    PS - one other thing about Methotrexate - no more alcohol is recommended - I took this advice - a struggle but I guess it's worth it !!

    • shirley40391
      shirley40391 Dave-California

      Posted

      Thank you so much for sharing all that information.  Maybe I could wait until I had got my Pred down a little more.  You haven't said if you have suffered any adverse effects from taking MTX.   My primary worries include nausea, problems with bone marrow and potential for chest infections, pneumonia etc....and of course hair loss which is already a problem for me on the Pred.  
  • Dave-California
    Dave-California shirley40391

    Posted

    Hi Shirley - no I haven't had any side affects that I am aware were caused by MTX.

    I think that the few things like skin thinning, and various other typical PMR things are the result of PMR and Pred, not MTX.

    From the time I started MTX, the PMR flares that I have had during the Prednisone tapering over the last year or so have been much less extreme than before I started the MTX. But also I am very careful about tapering prednisone VERY slowly and making small prednisone adjustments when any evidence of a flare occurs. I am working on a 0.5mg increment taper for about three months and sometimes doing a daily 0.5mg increase/decrease for a period of time to make the taper even slower. Like I said, it seems to be working OK for me.

    Hope all goes well for you.

    Dave

    • LayneTX
      LayneTX shirley40391

      Posted

      Dave and Shirley,  I'm glad you asked this question and I'm glad Dave included his knowledge and experience.  I'm wanting to ask my Rheumy if I can get off the DMARDS, but I know she will say no. Their response seems to be it is used to reduce Pred more easily. I'm at 6 mg and holding and trying to not go up. PMR over 1 year.

      I'm on two DMARDS. Plaquinel and Sulfasalazine. I drink wine occasionally (more before these drugs) so Rheumy put me on the Sulfasalazine instead of the methotrexate. 

      The Plaquinel at first caused some dizziness and nausea, but not much really. Some ear ringing, but it stopped soon.  The Plaquinel upsets my stomach as does the Pred. 

      The Sulfasalazine just makes me very thirsty and pee turns yellow wink

      So....I don't know, I fear stopping the DMARDS if it means I'm less likely to have a flare and if I can get off Pred, then perhaps I'll keep going.

      not sure if affected hair and skin, Pred did for sure!

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