I would like to know anyone's methotrexate withdr... - PMRGCAuk

PMRGCAuk

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I would like to know anyone's methotrexate withdrawal schedule. I've been on it along with prednisone since October 2013.

Tsnan profile image
15 Replies

I don't think it is helping me with reducing the prednisone, still on between 9-10 mg. Taking 15 mg of methotrexate. Any advise or your experience is appreciated. Diagnosed in March 2013 with PMR. Thanks a lot.

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Tsnan
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15 Replies
polkadotcom profile image
polkadotcom

Goodness, they do seem to slap you on these steroid sparing agents at the drop of a hat these days. What is your doctor aiming for? To get to 9 - 10mg of Pred in six months seems pretty good to me and unless you have serious medical reasons for a rapid reduction of steroids, I can't see that it needs any more attention. Many medics advocate a 'rest' on 10mg of several months before reducing again and this has been found to be a much easier route with far fewer flare-ups than continuing without resting.

As for Meth, I have posted here just now that I simply stopped taking it - it was suggested afterwards that I should have reduced it more slowly, over 4 weeks but I didn't get any kind of problems or withdrawal symptoms. I may have been lucky there but I was sure it wasn't doing anything for me any more so just went ahead. I was on 25mg of Methotrexate at the time.

Tsnan profile image
Tsnan in reply to polkadotcom

Thanks so much for your reply. I don' see my doc for another month but want off the meth. -why be on a toxin in my body if it isn't helping is my thought. I wanted some ideas in case my doc fights me on this. She was displeased with me when I saw her in late Dec. that I had not been able to reduce to 7-8 of pred. I tried but too much pain and discomfort that it was hard to work. So,I increased myself. Now currently on 9.5 and have good and bad days. As others have said, I really appreciate this blog. Reassures me, especially on those blue days when in pain.

Green_girl profile image
Green_girl

I'd love to know too please!! My Rheumy says that nobody has done any research on how to come off (they expect you to stay on this drug once on it, as it is used mainly for RA). I want to come off too and was just going to 'make it up' as I went along - but if anyone has already come off this drug, do report. I have been on it for a similar amount of time as Tsnan, and to be honest can't actually see what it is doing, though the rheumy would say it is working in the background. I'm not entirely convinced! Many thanks. Green_Girl

suzy1959 profile image
suzy1959

I was on methotrexate for 6 months last year. My Rheumy refused to believe it wasn't working but my inflammatory markers did not go down and when I tried to reduce the Pred. I had a flare up and inflammation went up. When I saw Professor Dasgupta in November, he suggested coming off it over 4 weeks ( from 25 mgs) which I did with no apparent problems. He now wants to put me on Leflunomide which he says has better results for PMR sufferers..

Tsnan profile image
Tsnan in reply to suzy1959

Thank you. Have not heard of Leflunomide.

JuneRose profile image
JuneRose in reply to suzy1959

At first they thought I had PMR and after 2 years being on Leflud they did a scan now say its RA I'm so glad my Rheumy put me on it it has really helped as I can't take Pred she recently tried to top up with MXT and I felt so ill took me off it she is researching as I'm so sensitive to Meds if this all seems a muddle sorry try the Leflud it's good you may b able to get off the Pred x

Jacintatonia profile image
Jacintatonia in reply to JuneRose

Hon i was very ill on the tablet form. Tried injectioms with no issues

tomasina profile image
tomasina

I came off Methotrexate (10mgs) weekly without tapering. I had concerns as I had blood in my urine and had read that this can be a side-effect. My Consultant suggested I came off it for a couple of weeks, but I decided to stop completely as I did not feel it was doing any good, and I was on Prednisolone and the reduction had not been any quicker with Methotrexate, which I presumed would be the result of taking Methotrexate. My blood results were normal and have remained so. No ill effects from stopping Methotrexate but the blood in my urine persists. This has been investigated but nothing abnormal has been found. Tomasina x

Apparently the plan for me is to manage my GCA with mtx alone and no steroids(in their dreams I suspect). I need a hip replacement and am on too much steroid for the orthos to proceed. Also had severe steroid induced mania on 60mgs which I would not like to revisit. Currently on mtx 10 and Pred 16 and health OK

Tobytomtom profile image
Tobytomtom

Hi

I only started 60mg prednisolone December. Not sure what your other prescription is or does, can you explain.

I have started reducing by 5mg per week, now on 9 this week but started aching shoulders, legs and head feels bit lightheaded. Due consultant ap this week and more blood tests. Eyes get very blurry but still ok.

Look forward to your reply

Angela123 profile image
Angela123

Hi. I was on 15mg methotrexate for 14 weeks for RA. Had to stop it due to excessive hair loss. My Rheumy had me just stop taking it. There were no withdrawal symptoms only a flare which he dealt with by depo medrol injection. MTX takes several months to take effect fully but if you have been taking it for a while and it's not helping then it's pointless carrying on. Hope you get sorted out soon. Angela.

Tsnan profile image
Tsnan

Thank you everyone for all of your responses. They are all helpful. I appreciate it.

lyndyloo2 profile image
lyndyloo2

Hi Tenan, in my case it took 3 years of steady MTX treatment before I was able to reduce and cease taking pred.. a long term solution, not a quick fix.

Good luck

Tsnan profile image
Tsnan in reply to lyndyloo2

Thank you for your comment.

jessie69 profile image
jessie69

I have been on meth for 7 years with lots of other dmd, I have been up and down, went on a lot of biologic drugs but had to stop them due to blood. 6 weeks ago I just decided to stop the meth on my own. I have been ok just the same no different. I see my rheumy doc next month I will tell her. But in my self I feel so much better no sickness, headaches tiredness, so be a good idea just try.

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