I was diagnosed in May 2013 with PMR aged 67. I’m a-typical and scans ruled out anything else and I responded really well to 20mg of steroids. I could fly and had boundless energy.
Over the years I’ve had flares but I’ve settled on 5mg Prednisolone for the last couple of years but it isn’t enough really but the steroids have had a dreadful effect on my skin. It’s now paper thin on my shins and arms and I’m rarely without a leg ulcer. I’m also black and blue on my arms and legs and some of the staining from the bruising is permanent. I’ve had other steroid related problems as well - insomnia, hair loss, vision problems, high BP, numbness in fingers and toes, brain fog, etc etc. Bones ok though.
So I’ve been resisting Methotrexate and I won’t up the Prednisolone permanently. I do up it for a few days when I’m bad. Think doctors are fed up with me and I suppose it’s mutual. Rheumy dismissed Leflunomide although I don’t really want to take that either. I have a complicated medical history and am on eight other medications and I really don’t want any more drugs!
I think there was a link to a study on Methotrexate and PMR that someone posted maybe a couple of months ago but I can’t find it. I recall that the results weren’t good. I’d like to show it to my rheumy who sings it praises (they are very used to prescribing it for rheumatoid arthritis).
Hope someone can recall the link.
Susanspurs
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susanspurs
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That’s a very interesting thread which I have read. It was a particular link to a recent study on PMR and Methotrexate that I was after. It had rather negative results and that’s what I want to show my rheumy to support my case for not taking it. Susanspurs
The only thing I can find that "negative" is this thread regarding an FDA warning the the USA. It's not a study in relation to pmr. Someone may be able to come up with it later.
Try double base gel for your skin...it's helped mine. I am on a steroid sparer, mycophenolate, and they all come with warnings but some people are ok on them and others not on a range of steroid sparers. If I had got to 5mg without I would be happy. Good luck..
Tried every cream on the market (seen a skin specialist) and try to moisturise shins and arms at least twice a day. I like bio oil and some of the gel moisturisers but they leave the skin very shiny. Trouble is I have to be so careful as just doing that can break the skin. I’m 73 and my skin looks like I’m 100! Lucky face ok so far - touch wood. I like double base on my face.
I know...I kept looking at it to see if there was another word but they are tears usually. But am ok it has a double meaning..but not that it can make you cry. 😟
It sounds like you are getting steroid related side effects but the next choice of drug can be difficult to know what’s best- a very good Rheumatica with an interest in PMR whom I saw a few months ago would put Leflunomide first before Methotrexate- it’s all a bit difficult to know what is best
Hi
I can't find one you mention but PMRpro is the most likely to know, however, she is travelling at this time, how soon do you need this information?
Well really there's no rush. It’s up to me. I’ve spent hours searching through the threads and on google. Have found some studies on google but I’m wondering if I imagined the one I’m looking for.
I got it down from 20mg to 5mg in about 3 years. For the last 2 years or so I’ve been in 5mg going up to 10/15 for short bursts when I’m really struggling. Can get below 5mg.
I’m on 12.5mg & hoping to resume Methotrexate when l see the Consultant. Just been to have my Bloods done do he’ll have a clearer picture when l see him.
Yes every two weeks for the first month/6weeks then after that monthly & ideally GP’s are not allowed to issue repeat prescription unless blood test have been taken.
I had mine done today, so l’d be head of the game when l see DrD on 27/8
Basically, there have been 3 small studies on the use of mtx in PMR. One decided it didn't help and one didn't know. An Italian study found it DID result in a very slightly lower cumulative dose of pred over a couple of years - but found when they followed up 5 years later that it didn't reduce the incidence of adverse effects of mtx or get people off pred quicker. So one asks - why add in another layer of adverse effects?
Thanks PMRPro for replying while you are on your travels. Why add in another layer of adverse side effects is exactly how I feel especially if there’s no real evidence to support its use. I’ve resisted MTX for two years and will carry on resisting. I will plod on with my heavy, tired legs that sometimes don’t want to move and up the steroids as and when necessary.
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Methotrexate or not ?
To be GCA or not to be that is the question.
Methotrexate question
Methotrexate: To commence or not, that is the question.
Is it a flare or not??
