Posted , 8 users are following.
Hello
Can you please offer me some advice.
After a recent visit to my rheumatologist he has advise after 3 years on Prednisone that I change to Methotrexate.
Has anyone used these tablets and do they work in reducing the symptoms of polymyalgia?
Thank you
1 like, 7 replies
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.
BillyP julian99981
Posted
by combining the two to get the same effect............for me it was no good ,purely
because it made me as sick as a dog..........personally i did not like the thought of using MTX as i have heard of some nasty side effects.....that is not to say pred does not have side effects also..........but its the old story....what suits me may not suit you......i can only say be guided by your rheumy and your own feelings as to the result. .....................Billy..........................
gillian_25383 julian99981
Posted
mary_49929 julian99981
Posted
Hi Julian,
I 've been on seven 2.5 tablets for 14 weeks, and reduced from 15 pres to 10... really struggled with methotrexate from the beginning. I take it once a week, and always feel very sick and shaky, hair, eyebrows have thinned so much and my skin breaks if I just brush up against anything... I m thinking of stopping it when I see my rheumi in July.... I know everyone has different reactions, but its done me no favours, and I 've had two bad flare ups.... sorry I sound so gloomy about it, but can only speak of how its been for me.. ....
EileenH julian99981
Posted
Does he really mean "change" to methotrexate? Methotrexate on its own does not usually manage PMR symptoms - if it did so reliably they wouldn't put us on pred. In some patients it MAY reduce the dose of pred that manages the symptoms but a study done in Italy some years ago which showed that methotrexate DID reduce the pred dose the patients required also found it made no difference in the long term to the incidence of pred associated side effects. They also found that about 1/3 of patients still required pred after 6 years - so being on pred for 3 years is not unusual and that certainly fits with what I have seen on the forums over the last 8 years.
Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids M.A. Cimmino , C, Salvarani , P, Macchioni et al
This group is regarded as the bees knees here in Italy when it comes to PMR!
The most recent recommendations for management of PMR mention it but don't sound particularly enthusiastic - you will find a link in this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
about half way down. Look at Recommendation 7.
I do know a couple of people who are on it together with pred, they don't have any side effects from it and feel it does help manage the PMR with less pred. My own feeling is that if you can take it without any problems then it is worth trying - but only then. If you have any side effects as far as I see it, it is a bit pointless. I also know a few people who were put on it and they did get to a lower dose before suddenly they had a major flare - in one case it was GCA that surfaced.
It is very difficult to differentiate between PMR and late onset RA, neither have any fixed characteristics. I personally suspect that the patients who are helped by mtx probably have LORA rather than PMR. But maybe on that basis it is worth trying.
linda06830 julian99981
Posted
It made me sick after one dose; just read the list of side effects and that alone will scare you to death. And, I believe, it has not been proven to actually help you reduce your prednisone use. Might quiz your rheumatologist about that. They offered it to me with an injection and I refused. I, too, was on 9 mg. forever (3 yrs.) and the rheum. kept trying to give me all these different pills to "help" me reduce and one day I finally told him I didn't want anymore as I always felt sick. He agreed to stop all extra meds, I finally started to feel better and have dropped down to 7 mg. over the past few month on my own. (Recently lost many lbs., so may have contributed to my feeling better.) Stick to your guns; it' your body.
mary_49929 linda06830
Posted
That's what I want to do Linda..stop taking it as I really feel its not working, I 've tried for fourteen weeks, and am sick and shaky for 24/48 hours, and so tired, then, just beginning to feel okay and its a week later and time to take them again... I 've had enough, so will reduce pred slowly, am on ten, in my own time, and have my life back.. ..x
Grandpa_Pete julian99981
Posted
I'm the odd one out here. MTX has worked for me. It took several weeks. After two years I have virtually returned to normal. Side effects have been minimal. I am now tapering - down to 4 2.5mg tablets. It has been said that I may not have had PMR. My consultant insists I have. This doesn't matter. What does is that I have my life back.