1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

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

39 Replies

Next
  • constance.de
    constance.de leonard12916

    Posted

    Rheumies always try to put patients on Metho, they want everyone off Pred asap.  I tried Metho TWICE and it made me so ill.  There are many side effects.  I can't see the point of taking one drug to get you off another.  However, having said that, it has helped some patients.  There 's only one way to find out  - try it.  Good luck!
  • Dinah54
    Dinah54 leonard12916

    Posted

    I am on my fifth week of methotrexate having had my diagnosis changed from PMR to inflammatory arthritis. It takes up to three months to work but I have found that already my shoulder, which bothered me the most, is completely better. The swelling on my knees has also gone down. It is a very strictly monitored medicine but so far I have had no ill effects other than mild nausea which has improved each week. It's a cytotoxin - so it takes quite a leap of faith to take it. But then many of our drugs come from poisonous plants - digitalis for example.

    For classic PMR there is no real evidence that mtx works. But in cases of atypical PMR which often turn out to be inflammatory arthritis I'd say it's worth trying

  • misdiagnose
    misdiagnose leonard12916

    Posted

    What are her reasons leonard12916?

    If your body is not tolerating prednisolone by causing gastritis, or it is causing/contributing to serious side efects, such as osteoporosis, maybe methotrexate might be required as a last resort but if there is no very justifiable reason to take it, what is the point? You are taking a very low dose and have only been taking it for 22 months which is not 'long term'. Some hospital consultants justify their time by prescribing highly toxic drugs instead of organising scans and tests which are conducted only in a hospital setting. How did you get a referral to a rheumatologist and what has this consultant done for you so far that your GP could not do?

    • beatrice74480
      beatrice74480 misdiagnose

      Posted

      I too was referred to a rheumatologist at the start of Pmr he only did what my Doc did and I took all Esr blood test results with me at each appointment.I was on preds for Two years and recently came off it after tapering down to 1daily. I am now having problems with some joints but feel they are Rheumatism and not Pmr.No Doc ever suggested any other drug but am seeing another Rheumy shortly

      ..Certainly felt energetic on Pred feel occasionally like going back on it but Docs do seem very keen to get us off it. good luck with your problem hope it is resolved soon .

    • constance.de
      constance.de beatrice74480

      Posted

      "felt energetic on Pred'!!  I never have, after nearly 4 years.😕😕

      Often people on this site say they get a sort of 'high' on Pred.  I wish I did!

      Not really moaning - I'm doing quite well really on 6 mgs - tried 5 mgs recently, then 'bang', drat it!

    • janet08828
      janet08828 constance.de

      Posted

      Hi Constance - I am with you - I felt the initial boost when first starting out with pred - but never since - quite the opposite!
  • janet08828
    janet08828 leonard12916

    Posted

    Hi Leonard

    I have been on pred for gong on 3 years - my rheumy started me on mtx approx 6 months after pred start - am still on both these lovely meds!!

    I know that it is questionable as to whether or not mtx has any effect - but as I am still having problems getting the pred dose under 10mg I am loathe to stop taking the mtx - I think that if I stop now I risk having to raise the pred dose again - I have a blood test tomorrow and I am hoping that I can take the next pred step down!

    I am now injecting mtx instead of the pills that I have been taking up until a couple of weeks ago. I have not experienced any drastic side effects of mtx - the nurse who instructed me in injecting myself said that if I could cope with the pills then I would have no problem.

    Apparently there are fewer side effects when injected as you bypass the stomach - a problem area for some.

    If you have a good realtionship with your rheumy - then maybe as she says give it a chance.

    Any drugs can give side effects - some people have problems with a drug that other people can cope with - this one may help you - or you may be one of the unlucky ones that has side effects. You won't know unless you try!

    Good luck either way.

  • misdiagnose
    misdiagnose leonard12916

    Posted

    There needs to be a good reason. This is what the consultation is for, to ask questions about your health and treatment and to discuss options. Many people diagnose their own illness and then insist on particular treatments. This will put doctors backs up (well, all those that I have met anyway). If I refuse to do something, such as go for my recent DEXA scan, they tell me I am refusing treatment and ask 'What sort of treatment do you think you should have?' If a doctor can create a dynamic where the patient is deciding on their own treatment, firstly, the patient might get it wrong (there is not a lot of good advice online) and secondly, if something goes wrong, it is down to the patient, not the doctor. You cannot complain about the treatment once you have taken responsibility for it. Because GCA has such a high incidence of complications, doctors are delighted when this happens. So, ask for an explanation as to why you need a particular treatment and whether there are any alternatives/other options. Best of luck.  
  • EileenH
    EileenH leonard12916

    Posted

    I was at above 10mg for the best part of 4 years. Then I used the dead slow and nearly stop approach and got to 4mg where I seem to be stuck. But in that time I haven't crumbled from osteoporosis as my bone density hadn't changed at all in over 3 years. I put on some weight and cholesterol went up - and are all back down again. I had some horrid side effects from one form of corticosteroid - nad they have all gone.

    There is little founded eveidence about mtx and I suspect when it does work it is because it wasn't PMR but LORA (late onset RA) which can appear identical and mtx would be the first line approach for that.

    I've only ever been managed by a GP - in the UK I had 2 useless rheumies who couldn't recognise typical PMR (textbook except ESR/CRP normal) and the one I saw here was good - but saw no reason for me to take up his time. He believes mtx has no role to play in PMR - and absolutely no role to play in GCA - so I'm never going to be faced with the problem.

    After 22 months and being at 9mg I can't see why she's making such a fuss. The docs here take 5 years plus or minus a bit as normal - and pred only.

  • leonard12916
    leonard12916

    Posted

    I really appreciate all of the sharing of your thoughts here as I'm in quite a quandry here about introducing mtx.  My rheumatologist's reasons for insisting on my adding it to my present 9mg of prednisone is as stated earlier that we've tried unsuccessfully 4 or 5 times to slowly bring it below this.  She says she has seen too many serious health issues with those who stay on it too long.  In addition, while some of her patients who try mtx need to get off it quickly because they can't tolerate it, she has many whom it has helped bring down their prednisone dose.  To date I've tolerated the prednisone fairly well other than fatigue that hangs around many days.  I've heard Eileen state here a number of times how the 'slow' approach has helped others yet my experience to date makes me think I CAN'T  break through the 9mg barrier.  I'm definitely not keen to take the mtx so I'm really baffled her as my rheumatologist in her attempts to help is using scare tactics here.  All her examinations and studies of my blood tests make her think it's pmr but she says it's not 100% for sure.  She also suggests I may want to see a endocrinologist to check out my adrenal function as she suspects this is suppressed, something I expect taking prednisone contributes further to.
    • linda17563
      linda17563 leonard12916

      Posted

      My Rheumy has hinted that after 3 years on Pred, that I may have to try MTX..... I did get down to 7mg, but they upped the dose because of blurred vision, now on 13mg....there is no way I will be taking the drug...My sister who has OA has just taken her second dose and is very ill....she thought she was having a heart attack at one point!...after seeing her like that what is the point?  I know not everyone responds lke that, but my Rheumy knows I don`t tolerate medication very well, (I have fibromyagia as well).......so it will be a no from me!  I would certainly go to an endrocrinologist.given the chance though....good luck...
    • MrsO-UK_Surrey
      MrsO-UK_Surrey leonard12916

      Posted

      No harm in agreeing to see an endocrinologist, but as far as your adrenal glands are concerned, yes, their normal pre-steroid production of natural cortisol (the body's natural steroid) will have been suppressed by the Pred.

      You say that you are tolerating Pred "fairly well" and I assume that means that you are not experiencing much in the way of pain?  In which case, I can't understand the need to introduce MTX at this stage.  How have you been reducing thus far?  Have you been tapering in 0.5 decrements for instance?  Also many of us have found that by tapering to the new dose on just one day of the first week, two of the second, three of the third etc has proved successful.  Well worth a try if you haven't tried it already.  It's very slow, but if it works, that's far better than taking on MTX in my opinion.   

       "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!!"

       Not very professional of her - in fact, defeatist.  Has she not heard about working with the patient?  I'd be looking for another rheumatologist!

       

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      Hear, hear MrsO! I don't think she is taking a particularly caring approach. She is claiming to be able to "cure" PMR better by using other substances - that isn't "helping" a patient. That's just pulling rank since she can use mtx and a GP can't. 

      I would definitely be looking for another rheumy if your GP isn't willing to manage you using the resources we recommend here

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      Obviously your rheumy hasn't heard of masterly inactivity - she can't cure the PMR and it is just managed by the pred. She should be patiently keeping an eye on you as you try 0.5mg reductions, spread over a few weeks as described in that thread I've just linked to until the PMR has burnt out enough to allow a lower dose to do the job. PMR will go into remission when it wants to and nothing she can do at present will change that. The only way you can find out if it has is trying a tiny reduction, and another and another if each works. As I say, for 4 years I got stuck at 9mg. Then I got lower. It is just a matter of being patient.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen, reading statements like this is enough to raise your blood pressure!  Aaaargh!
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      Isn't it just!

      Question: what is the difference between God and a doctor?

       

    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      In a TV clip over here, someone said "Oh, my God" - the answer he got was

      "Actually, Professor will do" !!!!

       

    • misdiagnose
      misdiagnose leonard12916

      Posted

      It doesn't help that there are no .5mg available so doctors prescribe in terms of 1mg reductions (often alternate days which is very valuable though I break my tablets in half). I always ask for a print out of my blood test results and look them up online which is fairly easy. Most test results show where there are abnormal values anyway. If you feel you have a truthful and valid explanation that you can accept then it might mean that trying it with the caution that if you feel unwell, you can telephone her and tell her your symptoms so that she can assess whether to remove you from the mtx. I believe it helps to co-operate with the professionals. I have done both, refusal and confrontation which leads to going it alone, or offering to please them by trying their medicine with the proviso that I can contact them at any time. The danger is that having accepted a drug such as this, if the consultant cannot be contacted, on holiday, off sick, etc., your GP needs to know what they are doing and be in agreement to helping you care for your own health. I always say 'What can I do to help myself?' and this often provides a direction of some kind. Best of luck.
    • misdiagnose
      misdiagnose EileenH

      Posted

      PMR and GCA are the 'Cinderellas' of the auto-immune illness spectrum (of which there are many). However, rheumatologists are not interested in these condiditions any more than they are interested in ME, fibromyalgia, etc.  
    • leonard12916
      leonard12916 MrsO-UK_Surrey

      Posted

      Hi Mrs. O,

      You wrote me a few days back and asked if I was experiencing pain, well every morning I wake to varying degrees of stiffness and pain, either in the neck, mid or lower back, sometimes in all three areas.  I've been on 9mg Pred for about 6 weeks and I'm thinking I need a higher dose and then need to bring it down with the 'slow' approach you mention.  Am I correct in thinking that if my dosage is right I should wake up to 'little' pain?  It takes me 3 or 4 hours for the discomfort to go away. I've got down to 9 mg several times and can't go lower, guess I need to up the dose until I'm comfortable and really go slowly this time bringing it down.  I'd welcome your comments.  I didn't choose to go on mtx when I saw my rheum last week and now my family doctor wants me to come in to chat about it.  Feeling a lot of pressure here and feeling quite confused.  Maybe it's arthritis I have!

    • EileenH
      EileenH leonard12916

      Posted

      It all depends on how long the pred antiinflammatory effects lasts for you - it can be anything from 12 to 36 hours. For some people the effect leaves them not too bad in the mornings, for others the stiffness is back by evening.

      One approach is to wake early and take your dose and settle down for another couple of hours by which time it will have started to work - the sooner in the morning you take it the less work it has to do. 

      Or you can split the dose, taking about 2/3 in the morning and the rest in the evening so you wake with little or no pain/stiffness. This is an approach often suggested by US doctors but occasionally also in the UK.

      The dose may not last the full 24 hours - so that will allow you to wake to some pain. An electric blanket used in the morning BEFORE you get up often helps too.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey leonard12916

      Posted

      Leonard, I was never pain-free down through the doses and suffered a certain amount of stiffness each morning.  My best time of the day was late afternoon so saved my daily walk until that time.  Were your pains there at the 10mg dose?  If not, then returning there for a couple of weeks followed by reducing by just half a mg to 9.5mg may prove more successful.  Many of us have found that taking the new dose on just one day of the first week, two days of the second week, etc has helped to avoid flares, seemingly tricking the body into not noticing the reduction.  Also whilst you are reducing you should  take things easy whilst your body adapts to the new dose.  Overdoing things at any stage whilst PMR is running its course will run the risk of inviting flares. 
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.