Does anyone have experience of Methotrexate as that is all rhuemy are offering me I have had PMR 4-5 years and very tired of it. Last year rhuemy I was down to 2mg predisolone from 15mg, I had double steroid injections in my shoulders which worked great for 3 months, I did loads of gardening and enjoyed the freedom, then symptoms returned, so back on 10mg predisolone for one month and now reduced to 5mg. Also is there any natural cure or rhuemys that can offer something else. They say there is side effects in the long term with predisolone all though they have suited me very well until now and rhuemy says most people do not get side effects with Methotrexate, but I have looked at the side effects of Methotrexate which look worse than steroids. Also has anyone tried natural medication and been cured.
Methotrexate and PMR Help: Does anyone have... - PMRGCAuk
Methotrexate and PMR Help
Hello, Cherrysteps.The answer to your final question is no. Sadly, there is no natural cure for PMR: if there were there would be no need need for this forum.
At present, Prednisolone is the only medication that will reduce inflammation in the body and sometimes with the help of additional drugs like methotrexate which are prescribed until the patient finally goes into remission.
There are people on the forum who are or have taken methotrexate and they will be along to talk about their experiences. In the meantime, have a look in 'Related Posts' at the right of your screen.
I have to say that the 'loads of gardening' you did after your steroid injections may well have caused your relapse. Everything in moderation!
Thank you for reply.
Hi Cherry I have been on Methotrexate now for about 13 weeks now. I was very anxious about it, but for me it’s been amazing. After the first few weeks I was able to return to work full time, after struggling for months. Some hair loss initially but that’s calmed down, and quite tired first couple of weeks, that could have been pmr, not sure. I haven’t yet started reducing pred, but have my rheumy appointment on Monday so hoping that will start then. So I guess that will be the test. Hope that helps, Good luck
First of all - no, sorry no natural cures, just things you can do to help the adverse effects of pred and make other things better.
If I were managing well on 5mg I would refuse methotrexate. There is no guarantee it will get you much lower and any rheumy who claims patients don't get side effects with MTX is in cloud cuckoo land! A study I read last year looked at how patients do on MTX compared with what the rheumies claimed. It is said that a third of patients stop MTX because of adverse effects, usually nausea and hair loss, a third stop it in RA because it simply doesn't help them, which leaves a third who do OK and continue!
You will find quite a bit about MTX, both sides of the coin, in the FAQs. I do say usually I think it is worth trying IF you are stuck above 10mg. If it causes problems or doesn't work you can stop. But 5mg is a low dose and is likely to have fewer adverse effects than adding in MTX - whatever your rheumy thinks.
Thank you for your reply that is exactly what I thought, I have refused it 3 times now.
Is TCZ better than Methotrexate do you think?
I don't know TCZ
sorry Cherry, that was a question for PMR Ambassador!
Tocilizumab does actually work on the underlying disease mechanism and it certainly works for GCA, entirely for half of patients, to a great extent for the rest. It appears to work for PMR but hasn't has proper clinical trials just small pilot studies so isn't approved for PMR. It seems to be used in some healthcare systems, especially in the East, but not Europe or the USA except as off-label approvals and not at all in the UK. A question of money - annual management with pred is probably at most a few hundred pounds/dollars per year although the form I take (Lodotra, delayed release pred) is up to 1200 euros depending on dose (30 tablets of whatever dose cost 27 euros, I need up to 4 tablets to make up a dose) whilest tocilizumab is well over £10K per year.
Yes, I know TCZ is expensive - about £1k a month. I spoke to a private specialist this week as I was taking 10mg in June and I'm not on 11mg. I've been up and down three times! Every time I get to 10 I have a flare-up or, as he puts it, GCA patients have a more problematic time getting past 10mg and said that TCZ would be a good thing to take to enable me to get of the Pred asap. He's then written a report for my GP saying that I should take Methotrexate - which has completely come out of the blue as we hadn't discussed it! TCZ is used in the UK for covid patients. Anyway, I have queried his report with his secretary. I really don't fancy Methotrexate as the side effects seem to be a horrendous. If I have to, I will pay for TCZ. Thanks for you input, it's always valid.
Hope life is treating you well.
It is possible that you need to fail MTX to stand a better chance of funding for TCZ to be approved? TCZ is used all over the world for Covid and it is leading to supply problems.I've had GP/consultant letters in the UK that I wondered if I had been present at the same consultation! Here the letter is written on the computer to make up the notes while I am still in the room and a copy is handed to me.
MTX may be OK - I think you have to try it to find out how it does for you. Many people do find it acceptable - some of us, me included, find the adverse effects overwhelming. I have very mixed feelings about it - and personally I'd rather continue to take just the Lodotra that works very well for me and causes no identifiable problems even if it means I need 11/12mg/day rather than adding another layer of potential adverse effects.
I'm OK - it is hard to grasp it is nearly 3 months since my husband died! Bits of bureaucracy keep dropping into place - others need a bit more concentration on my part.
Yeah, I think having notes typed out whilst you speak to a doctor is far better than leaving it them to do later. I don't think I'm going to be a big fan of MTX as I've had peptic and duodenal ulcers. I shall have further discussions.
All the bureaucracy that goes with death is so unfair for those who are left behind. It's ridiculous! But well done for persevering with it - as if you have a choice.
It hasn't been too bad really - just I need a translation of his will. Had the lawyer told us that when we lodged it with her it would have been easy as he could have got someone to write it in German and sign it. Apparently wills here are done in handwriting so in normal language. You can imagine what ours are like as they were written up by our solicitor originally!!
Nothing is ever easy!
Thank you for reply
I am “stuck” at 9mg pred for the last 2+ years. I tried 4 times to lower my dose but always eventually flare. I was offered methotrexate shortly after my PMR diagnosis but refused due to wanting to try and lower my pred dose first.
I was very hesitant to try methotrexate 3 years later, however did go to a new rheumy who seems to think it may help me reduce my daily pred dose. I started it 3 weeks ago 25mg injectable), and so far no side effects other than slight light-headedness the first week and some minor hair shedding. After 4 weeks I will begin to taper my pred dose 1mg about every 5 weeks or so and stay at new dose one week.
I’m not really keen on the new rheumy who I’ve only seen in person for 5 minutes (I speak more to her associates and the pharmacist at her hospital clinic). Time will tell if I continue with her AND the methotrexate.
The good news is you can stop the methotrexate if there is side effects. The thing is you won’t know unless you try. Mind you, if I was at 5mg (or as low as 2mg like you were), I don’t think I would be willing to onboard a new medication as pred doses that low generate few side effects, and you seem to tolerate it well to begin with.
All the best with your decision.
Thank you for your reply, last year I was stuck on 8mg pred and could not get lower, but keep trying as you will. I got as low as 2mg and was managing, I have found on a low dose it takes a few days to settle.
Good for you! I couldn’t even manage to get down to 8.5 without flaring (sigh).
Hi, I’ve been on methotrexate with Pred ( the latter now at 7 mg) since a double vision flare up 7 months ago, ( I have GCA not PMR). I can confirm some hair loss , and the other thing I noticed was that the permanent, 24 hour wobbliness became worse. Other than that I can’t say I’ve had any worse effects than those I experience from Pred. But it’s obviously subjective, individual responses. Good luck
If he thinks there are no side effects with MTX, he should read the PIL! And where has most of my hair gone?🤣But it's true: according to the leaflet I as given with TCZ, you have to tried at least one DMARD, eg MTX, before being given TCZ, in the UK. Having said that, the leaflet is some years old.
Was it a specifically GCA leaflet? It would be the case for RA where MTX has been the gold standard for the best part of 40 years I think.
No, it was for everyone being given TCZ, but, of course, it was written before GCA patients were given TCZ, and may be out of date. But it was given to me in October!
Nothing surprises me in the NHS these days! But making MTX a precondition for a GCA patient is rather silly - there being absolutely NO evidence it helps in GCA!
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