Hello all, I've now had PMR for almost 4yrs and am currently flitting between 7-10mgs.
My problem is that 2yrs ago I started to get bad inflammation in my back muscles which permanently feel bruised.
This inflammation means I cannot effectively reduce my steroid intake and noone seems to know why I've got it, so I'm in a constant cycle of trying to reduce and then flaring.
Today I saw my Rhuemy and he's at a loss as to how we can move forward and yet again the suggestion of Methotrexate came up.
I'm reluctant to go on it but can see I can't carry on at high levels of steroids forever.
What he and previous Rhuemy's seem unable to answer is: how long will I be on Methotrexate and at what point can you come off?
He just said, you'll be on it for several years, so I would appreciate anyone's experience of taking it and the long term exit strategy for getting off it.
Thank you in advance, John
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Achyjoints
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What amount do you tend to drop each time when you try to reduce? You could drop 0.5mg then stay on the new dose for as long as needed until you feel tickety boo. Then try again with another 0.5mg drop. You could even try 0.25 mg if the 0.5mg does not work. You will need uncoated pred and a pill cutter plus 1mg tablets though.
Thanks for your suggestion, believe me I've tried every type of tapering in the last 4yrs, however the inflammation in my back which seems pretty unusual, never really goes and prevents me from reducing below 6mgs, as ultimately I flare.
Ive had a really bad back,left facet joints for years and take strong painkillers for it.When i started prednisolone for my PMR ,my back pain disappeared,which was to be expected.But now that ive managed to get myself down to 0.5 mg ,its back with a vengance.So maybe thers some other reason thanPMR for your pain.Hope you soon get some answers.
In my case it is myofascial pain syndrome which is in some ways part of the pathology of PMR, However - since the cytokines are trapped in the tissues and not systemic, it takes a lot of oral pred to deal with it. Injections in the trigger points can be amazingly effective and actually even manual mobilisation of the trigger points is better than oral pred,
I think Claire Owen's work is amongst some of the absolutely crucial stuff to understanding PMR but most doctors are totally unaware of it. The other seminal article is this from Christian Dejaco, my rheumy here in northern Italy
Morning, I've just been re reading the responses to my question the other day and for some reason I never replied to you, so apologies and thank you for the information you passed on.It's strange because having seen my Rhuemy the other day, the 2nd one I've had and who I have no faith in at all, I upped my meds to 15mgs as I'd been so stiff and achy on 7mg and it hasn't touched the pain in my back, so it does make me wonder if it is PMR?
As I explained, myofascial pain syndrome can be found alongside PMR and be part of the clinical picture but it often doesn't respond to oral pred anything like as well as other PMR pain. Direct treatment of the painful areas achieves more - whether as manual techniques or steroid injections into trigger points which concentrates the steroid in those areas which use of systemic steroids doesn't.
it did work, tailbone a tiny bit sore still, interesting thing is whenever i got the injections my whole body felt better as the vasculitis was active by then and i wasnt on prednisone just leflunemide
I've taken 10mg of methotrexate weekly ( have difficulty tolerating a higher dose) for over 3 years. I had difficulty reducing my pred dose below 10mg and was initially prescribed leflunomide then methotrexate. I was diagnosed with PMR over 6 years ago and am currently tapering from 2.5mg to 2mg. So as you can see even with methotrexate progress has been slow but I have made progress.
Also if you do start to take methotrexate it can take a number of months to take effect so don't rush into reducing your pred dose straight away. Good luck in whatever you decide
I was unable to get below 8mg of steroids and kept bouncing up and down... eventually agreed to try Methotrexate in 2021 and started at 15mg but reduced to 12.5 very quickly where I stayed. They did tell me it could take a few months for it to have any effect. I am now down to 2.5mg of steroids and feeling well and was going to say that I thought this was down to Methotrexate, however I have just read my own notes and although I never had any side effects with Methotrexate I noticed that they also introduced Barcitinib at the end of 2021 when I started to get better. Was it the methotrexate or Barcitinib, who knows... My plan is to slowly finish with the steroids, then reduce the methotrexate then tackle the Barcitinib... still a long jouney ahead.
Hi Achyjoints, I have seronegative RA, which is different from what you have. I tried Methotrexate and persevered with it for months, it didn’t help me at all and made me feel really sick the day I took it, I effectively ‘lost’ 1 day a week, so I stopped it.
I’m using DL’s 5 week .5mg taper plan. This is my first week of 3.5mgs every day. I’m feeling OK at the moment, my plan is to get to 3mg and then stay at that for a couple of months 🤞
So you will taper to 3mgs after 5 weeks? Sure wish we could go faster. I probably have osteoporosis back after 2 years of tymlos injections which got me to osteopenia. I see my rheumatologist on the 28th of this month. I hope to be at 3mgs then. Good luck tapering!
As long as I feel OK next Sunday, I will begin the taper to 3mg then, over the following 5 weeks. Then I’ll stay at that for a while. Having been on it since 2008, it’s a big ask for my adrenals, I’m definitely in the ‘deathly fatigue’ stage, but I’m coping by not overdoing anything & resting a lot. Good luck with your taper too, we’ll get there😃
If you are using a slower tapering plan that takes 4-5 weeks to get from A to B… then so long as you feel okay, you can just go on to the next taper… Many stay on the ‘new’ dose for an extra week or two. It’s not the same as dropping ‘overnight’ and then staying at that dose for 4 weeks [or whatever] before the next one.
This may help you understand the way a slower tapering plan works -
Unfortunately you can only go as slow as your PMR will allow -too fast and you risk a flare. When that happens, you inevitably end up going more slowly and with a higher cumulative Pred dose.
Thanks for the link. I have been doing the slow taper. I am at 3.5mgs for 3 weeks today. I will try to go to 3mgs next week. You are so right about not wanting a flare.
I have had PMR since 2019 up and down with Pred managed to get down to 6 and then added GCA in 2021. At this stage pred upped to 60mg and then down to 10 over 4 months ish. Because under GCA consultant they added methotrexate starting at 10mg and then up to 20. I really could not see any massive changes with methotrexate and asked my consultant if I could stop taking it in January this year. I was fine coming off it. Pred does make a difference and am on 7mg at the moment.
I was diagnosed with PMR a year ago. I had to take upto 40mg pred for a few weeks to get it under control. In December 2023 I had my first Rheumatologist appointment and he put me on 15 mg methotrexate weekly along with 20 mg pred daily to be reduced to 10 mg pred within 2 months. In July of this year I changed my Rheumatologist as I was very unhappy with the first guy as I believed he was only ticking boxes at my appointments. The new consultant stopped the methotrexate as he believes the evidence for it being effective on PMR is not very conclusive. Since July I have been on 10mg pred daily and my symptoms are under control . So the methotrexate doesn't seem to have been of any additional benefit to me.
It works brilliantly for a small cohort of patients - but you have to try to find out if you are one. The same applies to leflunomide. Or hydroxychloroquine. There are several version of PMR, it is definitely not a one size fits all illness. Which is the mistake most doctors make. It works in RA - they think RA and PMR are the same but they aren't/ Prof Mackie in Leeds is currently undertaking a study to clarify its effect in PMR - but it will be years until the results.
If you are reluctant to go on Mtx because you have read the horror stories of the side effects some people have experienced when taking it - maybe you should have another discussion with your rheumy? I agree Mtx does not suit everyone…..but it has been of great help to so many people…don’t you think giving it a go is the next step you should try? Your rheumy would not be suggesting it lightly….but from his years of experience seeing how it can help.
My next contact with my Rhuemy is a phone call in 6 months. He's my 2nd Rhuemy and it seems to me that if Prednisolone doesn't work they automatically offer methotrexate. Neither seemed to be answer many of my questions about my concerns , hence my trepidation
Yes there are certain prescribing pathways that have proven to work…so are the first port of call when a rheumy considers offering a new drug.
Have you thought of writing an explanatory letter to your rheumy, giving in detail your thoughts & asking for him to reconsider the next medication he wants to prescribe for you…..because right now you feel you really do need help ?
If I were you….,I certainly wouldn’t wait another six months to ask for help.
Hi I have tried both injection and tablet form and had the worst experience of my life on medication. After 14 months I am still on Pred and trying Leflunomide which takes time to kick in but less side effects for me. I hope you can get it sorted
I’m considering starting on methotrexate after being very resistant to the idea for quite awhile. One of my students started in it after 4 years of PMR and is now (after about 6 months) pain free. Sounds tempting, right? She’s totally off prednisone.
It is tempting especially as I don't feel I have an alternative, however noone seems to be able to answer, how long are you then on Methotrexate and how do you ween yourself off it
I was on 22.5 mg max injections. Made me feel was being poisoned. Stopped cold Turkey and no reaction guess did nothing for me. Try it can stop easily - well I did. Cant stop pred
Although you should ask your rheumy, you usually don’t need to wean yourself off….if you want to stop it. I stopped overnight after 7 years, as it had stopped working for me….my inflammation was not controlled so as rheumy said….why swallow a pill that isn’t working for you?
I tried methotrexate along with the prednisolone when they were trying to reduce me down from 40mg. It didn't suit me but it might be worth trying because if you get side effects or generally don't feel great taking it you should know very soon and you can stop taking it immediately without an exit strategy if you have only taken it for a short while. It does take time to work of course but if you are worried about side effects they should show up pretty early on.
I suggest giving it a try at least. You may or may not have immediate side effects but if you do you can give it up rapidly - there is no weaning off time needed with MTX. Also it is necessary to have regular blood tests, so if any pernicious effects start up they are recognised quickly. I've been on it for over 2 years now - 10mg tablet weekly - and will soon move to 10mg fortnightly for 6 months, then off completely . For me the improvement in PMR symptoms was quick and ongoing - including some relief from PMR stiffness, a considerable drop in fatigue levels, hair stopped falling out. I still have a couple of drinks weekly, go out in the sun without problems etc, blood tests are always good.
I reduced pred very very slowly to zero, (from 6mg or so, over a period of about 20 months ) against the wishes of my rheumo who wanted me to drop much more quickly. I did this because I had a few stressful incidences and an operation during that time and chose not to reduce pred while going through those times. Though the rheumo had no sympathy for this approach! (Now back on 2.5mg pred though after a symptom flare)
Some on this forum have found that the side effects were way worse than the problem and had to give it up. However there are some of us for whom it has worked well. All the best.
PMR 2017. Rheumy added MTX when I was stuck on 6ml pred for 6 months by end of 2019. I've been on it since. I very slowly got off pred by 2022 but rheumy said stay on MTX. No exit stategy offered. I reduced the dose to 10mg weekly and was fine for 15 months then flared. Upped the MTX to 20mg and diagnosis changed to rheumatoid arthritis mid 2023. Developed pain in left hip so having an Xray and ultrasound tomorrow to see what's going on. I've needed panadol and iboprofen despite the MTX so I wonder if it does anything for me. Made me a bit nauseous at one stage so I split the dose into morning and evening until it settled. Lately found Voltaren tablets helped best with the hip. These aches and pains are a mystery and a nuisance. Hope you find something that helps.
Dr Sarah Mackie from Leeds University is doing the STERLING study putting patients on Methotrexate who have relapsed or having trouble tapering. It is country wide. You might consider that as I have found participants might be monitored better in a study. fundingawards.nihr.ac.uk/
It’s such a difficult decision. They have opened up some new sites.
I also am 5 years in on the PMR journey . Ups and downs with Pred. 4 months ago I started on MTX (25 mgs) with Tapering 15 mgs of Pred . What is your concern about being on MTX … Long term ? I feel very well currently and attribute it to the MTX. I am 76 years old and hope to stay on it ad infinitum . What am I missing here?
Well the issue is, obviously we and the medical profession want us to come off steroids for obvious reasons. When that's not possible we are expected to then go on MTX to help us get off Prednisolone but until I posted my question no-one was able to tell me how long I would expect to be on MTX, but I've now got a better understanding of what to expect
Hydroxychloraquine seems to be working well for me, I've managed ot get down from 25 to 10mg of Pred might be worth a try? No noticeable side effects. it can affect your eyes so I have them cheked every year. Some people get on with MTX but many don't. Actually if you are going to try it get in touch with Dr Mackie and get on her STERLING PMR trial
Lots of people seem to be offered alternatives to MTX which doesn't seem to be an option for me. You're the 2nd person to mention Dr Mackie and the Sterling Trial, is this something I can do whilst living in south east London or do I have to travel somewhere. I went on a link someone sent me but I couldn't see how I enter into the trial?
Not sure if it’s too late to register even though it’s ongoing m- there are email addresses at the end of this article, so might be worth winging off a question .
My brother's Rheumy says 10mgs pred is fine long term. Brother and I are slowly going down and since PMR can have a life of at least 6 years I am happy. Brother tried MTX but it didn't work for him. I haven't been offered it but then I am being left to my own devices to reduce pred. Having reached 3mg with the DSDNS method I am quite content to leave my next reduction for a little longer. Been 8 weeks on that dose I think. I am afraid a lot of doctors and Rheumys are in too much of a rush. I say I am happy to go slow - but in the first instance I was extremely Unhappy to be on pred - but I have GCA too so there wasn't an option.
I have been on 25 mgs of injection methotrexate for 4 years along with my prednisone. For me it was a great drug in combo with slowly reducing prednisone.I couldn’t tolerate the tablets, so switched to giving myself a shot every week. That was excellent, very helpful relief while slowly tapering. I too am highly resistant to tapers and my body threatens flares whenever I begin a new dose. It takes me minimally 8 weeks to reduce 1/2 mg. I am currently at 5 mgs of pred and will stay there for a while….maybe through the cold months of winter. Last spring my rheumatologist added Kevzara every two weeks into the mix to assist me in this resistance to reducing situation.. so far , so good. Sometimes I see myself as a pioneer just treading on new paths to see what will help,good luck to you in your journey.
hi I have had similar experience. Put on MXE so I could reduce pred . Methotrexate was like poison to me. Hair an. Skin bad. Mouth and lips peeling etc. But my aunt takes it and has no problems.
Look up an app called Insight Timer and search for tuning fork meditations. I listen every night and I am managing to reduce pred by 1/2 mg a week with no problems .
I couldn’t before. I have to get to 5 then I see an endocrinologist for how slow I go from there. I’m currently at 8 with no flare ups yet 🤞
I know you will be getting a lot of replies to this post from our very helpful friends on this Forum.
I can only share with you my experience of Methotrexate based on my personal use and not with any specific medical knowledge.
My Rheumatologist introduced me to 15mg MTX a week, about a year after I had been diagnosed with PMR and by which time I was down to about 10mg Pred per day from 20mg.
The only side effects I have had, were caused by me carrying on with MTX whilst I was very ill with Covid, that prolonged the illness for about 4 weeks.
After discussing this with my Rheumatologist, he made it quite clear that I could stop MTX at any time without consequences, and definitely should at any time of illness of any kind.
From the outset, my Rheumatogist advised me that MTX could help with my Tapering scedule by making it easier to reduce Prednisolone, he also said that if I had any reaction to MTX, I could stop taking it immediately.
As I have been ok with MTX, we have agreed that I will try 17.5mg MTX per week to see how that effects me tapering Prednisolone. I have been at this new dose for 2 weeks now so probably too early to say if it helping , but so far so good, no apparent side effets and no obvious difference to 15mg.
I do have regular blood tests at the hospital to monitor the MTX, I have the next one in 3 weeks time so will be interesting to see what the results are.
Good luck with your PMR journey, personally I think MTX is helping me, BUT, I know we are all different and all react in different ways to medication. I am currently using DL's slow taper and am at week 4 of the 3.5mg - 3.0mg of Prednisolone.
Thanks for your response, so I'm slowly getting a clearer picture of the MTX regime. In your case you started on it whilst still at 10mgs Prednisolone and am I right you're currently heading towards 3mgs. How long did this take?
I have just checked back through my diaries and see that I actually started on MTX in March 2023; at that time I was on 8mg of Pred and was still reducing by 1mg per month.
I have had a few blips on the way going back up to 10mg a couple of times.
I started DL's Slow 5 week Taper from 7.5mg - 7.0mg in September 2023.
At the beginning of this year I was at 6mg and stayed on 6mg for six weeks whilst I was visiting Australia, and stopped MTX for the same period.
As advised, I did not take MTX for 1 week in April as I was having a Covid Booster Jab.
I had a fairly successful experience with MTX. I had tapered from 20 mgs of Pred but could get no further. I reluctantly agreed to try MTX and was then able to get eventually get down to 2 mgs. My rheumatologist would have preferred me to stay on it until I was off Pred altogether but having suffered very little side effects, it started to make me feel exhausted on the day following my weekly dose. We both agreed that it would be better to stop it. Years later, I’m still on 2mg Pred and it doesn’t seem likely I’ll be able to get off it. I’ve tried so often, not worth it. I think if I hadn’t taken MTX, I’d still be struggling with a higher dose of Pred.
Although I'm unable to contribute to the discussion about your dilemma about Methotrexate, I'm very interested in the ongoing pain in your back muscles as I have the same problem. I'm still on 2mg of pred having upped this from 1/2 mg a couple of months ago after a flare that led to pain in my hip. I'm still still wondering whether to up the pred as I'm not sure the back pain is PMR, also its fairly mild most of the time. I've had a thoracic spine X ray and that was normal and I'm due a Dexa scan in October. The GP wants the results of that before recommending what to do next. to check for slight bone fractures. The back ache is intermittent and does not seemed to be linked to exercise. It also moves around! sometimes its directly between my shoulder blades and today it is more around the base of my ribs at each side. Just wondered how you back pain presents in an effort to see whether it is PMR or something else.
Well my back ache is constant in my upper back muscles and also at the sides, like you at the base of my ribs. It's relentless and only diminishes with high levels of steroids. I've essentially had it for 2yrs and feels like it's badly bruised. Various tests and scans have shown it as inflammation
Thanks for getting back and sorry yours is relentless. I’m also due a blood test in 3 weeks which will perhaps shed some light. After 7 years I wonder if I now need to see a Rheumatologist rather than just the GP .
advice on this group is to consider increasing pred as experiment to see if that shifts it then try the slow slow taper from there which I’ve delayed doing but think that might be best bet
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