I started on 15mg of Methotrexate on 18th March 2022 and ended up going up to 20mg of Methotrexate in November 2022 the idea of going on them was to cut down the Steroids and eventually come of Steroids. I was on 10mg of Steroids when I started Methotrexate in March 2022 and seem to be fluctuating between 7/8mg still, is that normal to be on Methotrexate for a year and not reduce the Steroid’s by much? Or am I just getting impatient to get of the Steroids, even on 7/8 I’m still suffering with aches and pains but very reluctant to keep increasing the Steroids, I have a appointment with my Rheumatologist 21st March and was wondering if it was worth asking them if I could try another medication (if there’s is one) to try and get of the Steroids.
Methotrexate : I started on 15mg of Methotrexate on... - PMRGCAuk
Methotrexate
Obviously the idea of adding in MTX is to help reduce the Pred more quickly than you could without it, but not sure it works for everybody as well as some doctors think it should.
If you are still getting and pains then perhaps you need a re-think - is it all PMR? Could be adrenals stuttering - are pains different or same as pre-diagnosis? Or are you assuming because you are on both meds you can return to normal life?
As for other meds, Leflunomide is sometimes prescribed.
The pain is in the same area as to when I was first diagnosed with PMR, I have accepted that I will probably never be 100% pain free but as the rheumatologist are so keen to get you off the steroids and they seem to think methods is the drug to do it I guess I was expecting better results from it, I have a really good rheumatologist that I’m seeing in 2 weeks time so I will see what they suggest, when I phoned them up about the increased pain then did say they would discuss at my next’s visit going up to the maximum of 25mg of methotrexate.
personally I think you need more Pred not more MTX -but then I’m not your doctor
I would probably agree with that, it will be interesting to see what answers they come up with on 21st March.
hi I’m in exactly the same place as you and have been for the past year I got a appointment on the 21st of this month and I plan on asking the same they wanted me to go up to 25mg but I said no at the time as I don’t like the side effect of the methotrexate I swapped to the injection form to try get some of the side effect under control but still feel rubbish on it I feel now I take two things that suppress my immune system I’m going to ask if going up to 25 mg will let me come of the steroids all together as I now been taking them for nearly 3 years
There is no answer to that - how long have you been on MTX and how much have you been able to reduce so far?
I have been on Methotrexate for a year now, I’m on 7 mg now just gone up from 6.
I started on 30mg steriods about two and half years ago after I had a stroke and was told I had PMR afterwards worked my way down to 10mg and got stuck so went onto MTX about a year ago saying I could then work my way off the steriods but I can’t get below 5mg as so as I do all the pain in my hips leg and shoulder return and I can’t sleep due to laying on my hips I now take MTX by injections to try to help the side effect so I feel now I’m stuck on 5mg of steroid and 20mg of MTX which is not ideal I really want to come of one or the other if possible I only agreed to the MTX on the grounds of being able to stop steriods but it’s not working so when I go for my appointment I’m going to ask what more can be done I don’t like the MTX at all if I’m honest I had a bad chest infection for last three weeks had three courses of antibiotics and chest x ray and now saying I gave inflammation in the lungs due to it and need more antibiotics I feel this is coursed by the lack of immune system due to the MTX which I now haven’t taken for th three weeks due to antibiotics
It infuriates me that it is too often presented as the way to get off pred - guaranteed. It might for a very few, it might get you to a lower dose for some more but at the price of more immunosuppression or adverse effects. It might help - but it might not.
Yes it was described as the one drug to get me off the steroids, but if that one doesn’t agree with you there are others that will do the same job, they are just desperate to get me off steroid’s.
Hi, I have been on Steroids for over 3 years now, 2 of them for GCA, I got down to 2mg of Steroids and was feeling really good, unfortunately PMR kicked in jut over a year ago which I then had to go up to 10mg of steroids which was disappointing, it’s been a struggle ever since to lower the dosage, I have just in the past week gone down to 6mg but still have pain in shoulders arms and have very little energy, I too have an appointment on 21st of this month with the rheumatologist, let me know the outcome of your visit on the 21st , I will also ask if going up to 25mg will help me get off the Methotrexate.
Methotrexate works brilliantly for SOME patients but by no means all. It isn't uncommon for MTX to allow patients to get down to a few mg lower - I posted recently about Lorna Neill from the Scotland charity who experienced the same. Leflunomide worked for her - but again, it works for some, not for others and can be a bit sticky with side effects. You have to try them to find out if you are in the positive results group but if it is going to work well then you know by about 6 months. Just stopping MTX may not be the way to go though - sometimes it is doing more than you think.
I have just read the article on Lorna Neill, it seems Leflunomide has worked well for her, am I expecting too much a year down the line on Methotrexate only to have reduced my Steroid’s by 3/4 mg in a year?
yes sorry you did answer it, I guess Methotrexate isn’t working very well for me as I haven’t reduced very much in 1 year in fact Methotrexate went up from 15mg to 20mg and didn’t make a difference either, I was on 15mg for 5 months (August 22) and have been on 20mg ever since, I seem to go between 8mg in August to between 6/7 mg now, maybe it’s time to see if they will consider changing my Methotrexate to another one.
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