I've tried numerous times to VERY slowly reduces my dose but without much success and my rheumy told me my body is now to dependent on steroids (it's been about 6 years). She said I have a choice that I can be on a low dose for the rest off my life or go onto methotrexate to help reduce. All I know about that is itt had very mixed reviews.
Could anyone tell me more about this and whether it worked bea good idea to try it? I'm not at all keen on they idea and would rather keep on trying to reduce. I'm on 5.5 at the moment.
Thanks so much!
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grannyouch
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Me too! Are you using a pill cutter for tiny reductions? My Endocrinologist says there will be some discomfort that has to be got through but why add another powerful drug with side effects? I have refused it several times. Keep trying, slow but sure, I would/will.
thank you all and I feel the same as you do, Sheffield Jane. My rheumy wants me to decide but the next time I see her (WHY?) in Jan. I think I'll tell her is like to continue trying to revise for now and see what happens
Methotrexate has been fine for me so far. I have been taking it for quite a while and not noticed any major issues. I think it has definitely helped m reduce steroids. I was concerned about taking it because Leflunomide made me quite unwell.
Good morning l am a bit of an anomaly on the hair subject as l had alopecia about 12 years ago another autoimmune problem and am rather follickly challenged now. I have been taking Methotrexate at least five months now and have felt nauseous on one occasion and have had a couple of tiny mouth sores. I am not quite sure if they were related. I read online some advise about splitting the dose. So l take three 2.5mgs at 7.30 am and the same twelve hours later. So far so good fingers crossed.
2 plus years into PMR, i've been on methotrexate 10 mg for around 6 months or more now, with no bad effects yet. The improvements are - reduced pain, less fatigue - therefore more exercise so sleeping better, less stiffness in the hips so able to walk a little faster, hair stopped falling out (what was left did go frizzy), able to go on a weight loss diet successfully.
I've only reduced 1 mg in that time though. Am currently on 6mg, soon reducing to 5mg on a slow method. Will see how this goes! Not sure if this helps in your situation. All the best.
That’s helpful redruth123! I like the sound of less pain and fatigue. My trusted Rheumie is very keen on it. I’d be interested in updates as you get lower, if you remember.
I'll diarise for 3 months time to write an update SheffieldJane. I feel like (so far anyway) one of the lucky ones with MTX. I was operating at about 20% pre- PMR capacity when just on pred. and slouched on the couch for most of the day. I am now operating more at 65% capacity of pre PMR, so a lot happier and coping better. There are still occasional days when I feel dreadful so it's a bit up and down, but more up than down.
" She said I have a choice that I can be on a low dose for the rest off my life or go onto methotrexate to help reduce."
I fear she is living in cloud cuckoo land if she is promising it will get you off pred - it works very well for a small proportion of patients with PMR but not for all. For some they do very well and do get off pred, for more they are able to reduce the pred to some extent but are still at a similar dose to you. For another group it does nothing and for yet more the adverse effects are intolerable and they stop.
Your body IS dependent on steroids but it is still possible you could get off pred for the PMR and your adrenal function would return - it can only do that by you managing to get to a much lower dose of pred. But at this stage it is a balance - the PMR is the main player and it must be satisfied or the symptoms of PMR will be back. As you reduce the pred further, your body must start to produce the body's own corticosteroid, cortisol, and that is possible if you are patient and able to stick at a much lower dose. It may be the MTX will do that for you, Or maybe not.
If you look at the related posts you will see many other older threads all on the same topic with a wealth of experiences. It MIGHT work - and if you can take it without adverse effects or with only tolerable ones then it is possibly worth it. Ending up on both without bad effects may be worth it - it does make you more susceptible to infections and you may have to stop the MTX at times because of infections/taking antibiotics, the risk then being you may flare and need to increase pred again. Ending up on both and feeling rubbish ISN'T worth it.
The only way to find out which group you are in is to try it - making it very clear to the doctor you are willing to try it but you will also stop if it makes you feel worse. My hair started to come out in clumps within days despite a lot of folic acid. I experienced pred effects I had never had with just pred - I was permanently hungry and gained1kg in a month! - and I felt awful. I never experienced nausea which was something. I couldn't cope with staying on it long enough to see if it made a difference. MrsNails, on the other hand, feels any downsides she experiences are worth it.
Thanks for this post. I am in the same situation. Been on pred for 5 years and 8mg is my comfort zone with an increase of 5mg about twice a year to cope with a flare. Have got through 7.5 to 7 but pain and fatigue made me give up and go back to 8. My rheumatologist is very supportive but will be happier if I can at least get down to 5mg so wants me to try methotrexate to see if it helps me reduce. The scale of potential side effects scares me but as Pro says perhaps we just have to give it a go. After all, it is just one tablet to start with so we should know pretty quickly if it suits or not and so not take another one! Please would those who do take it let me know what time of day works best.
Nippersmum, taking it once a week is the tricky bit. Rheumy helpfully said "Take it on Monday, aka "Methotrexate Monday" - it's a great reminder. I split the tablet between morning and night if I remember, though It doesnt seem to make any difference if I just take the whole 10mg at once. 🌻
My rheumy says half before bed, half next morning helps avoid the nausea. MrsNails sys choose a day you can be quiet next day for the fatigue/MTX flu that many experience. A lot of younger RA patients take it Friday night so they have improved for work on Monday.
I take mine(15mg) late morning, I find if I take it any later in the day I sleep very badly that night. Agree with Mrs Nails about a quiet day the next day as I do feel more weary the day after I've taken it.
I started MTX 9 weeks ago tomorrow, and have taken so much of Mrs Nails personal diary of her experiences with it. My daughter developed RA when her baby was born 7 years ago and took MTX when babe was 6 months old. She was in extremis but in12 weeks she felt better. I took her advice and take my MTX 10 mg after supper on a Thursday evening. I was dreading 😟 taking it with all the caveats that come with it. I honestly have to say I have had NO ill effects from it at all. It’s been wonderful. I felt so ill following a big flare in September and had deathly fatigue for nearly two months. It wiped all the pain and inflammation and asthenia within a week or two. Appetite increased … and I do notice I am slower when I walk but it’s still early days yet. I am actually looking forward to increasing my dose so as to reduce the prednisone! Don’t drink … even at Christmas 🤶 but really pleased 😀 am returning to my old self again! Good Luck 😉 with whatever you decide to do. The pharmacist who dispensed MTX said to me on giving me the pack’ it can be a miracle drug for some Barbara! I must have clung onto her uplifting words as it has been. 🍀🍀💐
That's what Sarah Mackie in Leeds says - in PMR there is a small group of patients for whom it is a miracle. But you have to buy the ticket to play ...
indeed you do! I have noticed that I have become a bit irritable and have to stop gobbling my food as if I haven’t eaten for a week. Christmas carbing and kind folk who give you your weaknesses like Chocolate Marzipan bars don’t help me at all. 🤣🤣.
Thank you everyone for your replies. I’m still struggling with shall I shan’t I? Would be quite happy to stay at 8mg pred but realise that long term that may not be so good and I would like to tell my rheumatologist that I had at least given it a go. Perhaps I will be one of the lucky ones 😊. I want to feel as well as possible when I start meth and although I may have a run of good days, inevitably I then get a run of not so good days, like now after doing a bit too much in the garden! Will we ever learn that with this condition you can never have your cake and eat it. Final consideration, can I do without my evening apero 🍷which definitely helps take the stresses out of the day?
"The authors of the report suggest then that patients on methotrexate may be able to drink up to 14 units of alcohol a week, but over this limit, there is a higher risk of liver damage in a dose-dependent fashion. However, caution must be used by doctors in talking to patients about alcohol on high doses of methotrexate as the size of dose of methotrexate was not included in this study."
I'm not on methotrexate but I have a small glass of wine with dinner every evening - a bottle of wine lasts me a week and I am happy with that. In fact, I don't WANT any more most of the time. There are just over 10 units/bottle in a lot of wines if you choose carefully and often German and Austrian wines have quite low alcohol naturally - because they are made for the locals who want a glass at lunchtime and go back to work! My daughter assures me there are perfectly acceptable non-alcoholic wines in the UK - here in Italy you get looked at as if you are crackers but even our local vineyards are catching up with alcohol-free bubbles.
Thank you Pro! I can live with that. 😊 Not a lot of low or non-alcohol wine here in France either although someone did give me a bottle of 7% sparkling rose for Christmas so perhaps that’s the way to go.
There you are - I actually LIKE the low alcohol bubbles - they don't go to your knees as quickly! There are a couple here that are 10% or less.
Are you in a wine producing region? Some years ago we were camping in the absolute southwest corner of Germany and went to the vineyard in the village which was run to provide work for local adults with learning difficulties. They produced a 9% white for local use which was delightful. Traditionally in Germanic countries they make spritz in the summer - halves the alcohol and the right one is still nice. Though I do prefer my water and wine in separate glasses so I go for really decent wine and drink a lot less of it.
I was just like you - I had this deathly fatigue in October/November and was on & still am on 15 mg Pred which really didn’t quell any symptoms. GP referred me to Rheumy who suggested MTX or Azasthioprine (sp). I still resisted, but then at the end of October after chatting with my daughter who took MTX for her RA which was diagnosed following the birth of her newborn at 42, she encouraged me to try it as things were so rotten. For me it was the best decision I made! I’ve had so far no side effects touch wood, although I have to watch my appetite as I’ve become a greedy feeder! My pace is slower but I don’t mind as it’s still early days at 9 weeks now. Take the folic acid for 6 days. Look and feel better. Hair went a bit do lally when I started it but ok now. I take 10 mg MTX at night after a good supper! I am apprehensive about drinking so don’t touch it, although my daughter loves her Prosecco and has that! I’m due to start 15 mg MTX shortly. I do though feel a bit fatigued the following day after taking the MTX, so I am lucky to be able to rest. ☘️☘️☘️ xx
That was the key point for me agreeing to leflunomide. I did not want to try it. But like this conversation has pointed out I realized if things went south I could just stop it. Same with methotrexate (I had tried meth in 2015 for RA and got 2 infections right away so we stopped it and increased my placquenil and added 3 mg pred which controlled my RA for years). So with PMR my rheumy wanted the leflunomide to reduce pred. I can't reduce pred....at 28 mgs and still having bad pain so.....I came on here asking for advice and left deciding to try it. Knowing I could pull the plug right away. I started it and things got so bad...it upped my symptoms within a few days and I was so wobbly I was afraid I was going to fall I shook so hard. So we did stop it and it turned around right away. But I am glad I tried it. I have read good results on here for folks who are using these meds. It's just not working for everyone....but it could be you! So good luck to you all. I hope it will help.
Hello, I was diagnosed with PMR in 2015 and did really well on tiny doses of Pred but could never stop for more than a few weeks. Would get classic muscle stiffness and aches in ankles and wrists. Started on 15mg weekly MTX August 2021 and 5mg pred after both knees became stiff and painful. Took my last 0.5mg of pred in May this year, exactly seven years since starting on it. I’ve now reduced MTX to 12.5mg a week and so far so good. Did get some hair loss about eight weeks after starting but quickly regrew and mouth was a bit tender, after increasing folic acid that was fine. Haven’t experienced any fatigue and as long as I took the MTX with plenty of food, no nausea. I’ve lost a stone in weight since stopping Prednisolone without much effort so that’s a bonus. Seem to be able to drink alcohol too 😊 l’m scared l’m going to jinx myself writing this.
This is just my experience with MTX and note my rheumatologist has changed the GP diagnosis to sero-negative inflammatory arthritis with a polymyalgic onset. I still think I have PMR, and when I stopped MTX for a couple of weeks for vaccine it was the biceps and thigh pain that started up. I’ve had no knee pain since that one episode or indeed any joint pain at all. No joint erosions seen on various imaging either. Just had watch adrenal function caught up when reducing pred.
So far I’m glad I tried MTX though I was extremely dubious, usually 1mg or 0.5mg of Prednisolone daily kept me mobile for years and I would have been content to stay on that. Rheumatologist thought I should give it a go as I was comparatively young! You can always stop it straight away if you have problems. All good wishes.
l’d recommend you write a New Post asking for Positive Experiences of taking Methotrexate.
There are many Members on here who take it but actually don’t say much about it.
There are many people who will give you negative stories & these fall into two groups - those who have taken it & it didn’t suit them; those who won’t take it because they are concerned about the side effects & things they have read.
I personally never wanted to take it but Prednisolone was causing me more problems than benefits. My Story is available in FAQ’s.
After taking prednisone and VERY slowly decreasing the dosage over 7years, I was down to 1mg when suddenly I had hip and knee pain, and hurting shoulders. Went up to 3 mg with no relief. Doctor finally diagnose me with fibromyalgia for which there is no clear treatment other than doubling my antidepressant. I see my rheumy mid-Feb so I may learn more. Are there others out there with this diagnosis?
You need to post this as a post in its own right and not in the middle of an existing thread where it will get mixed up with other replies and many won't see it,
In the meantime - I'll say that going to 3mg without a response isn't surprising even for PMR and there are many similarities between the two so that really only enough pred would rule out fibro entirely. However, we do have several on the forum who have both or have been misdiagnosed one way or the other.
No problem - it is just the way this forum works, things disappear very quickly even as a new post but that is the best way to get a good number of replies
I am one of the unlucky ones, my rheumatologist insists I stay on Methotrexate and decrease my prednisone by 1mg per month, I was on 10mg in September, he expects me to be on 3mgs by the end of February, my next appointment with him.
I have been on MTX for 6 months and am absolutely exhausted for 2 to 3 days after taking it, I can’t go for a walk on those days, even though I have iron 6 days a week. I had a flare a month ago while on MTX, am exercising much less and am suffering days of deep depression. The rheumatologist is aware of how I feel and that I felt ok decreasing by .5mgs without MTX but insisted I continue.
You CAN say no you know. It is your body, I would talk very frankly to your GP. Without MTX you don't NEED a consultant and you aren't speaking the same language, the relationship is broken.
The idea is a better QOL, not loss of 50% of what you can do. I was lucky, my rheumy accepted it wasn't for me. But no doctor would force me to take a drug that was worse then the disease - especially since you were doing well on just pred. I'd been on pred above 10mg for most of the last13 years but I felt well and could function well - not on MTX, the fatigue lifted in time for the next dose!
"Behavioral symptoms occurred in 96.1% of patients with MTX intolerance, the most frequent being restlessness and irritability. Patients who used corticosteroids were more likely to develop MTX intolerance than those not using corticosteroids (odds ratio = 2.73; 95% confidence interval, 1.06 to 7.06; p = 0.038)."
He says it is the only way to reduce as I have been on prednisone for almost 2 years, in fact it is 20months! I am concerned if I do not do as I am told I will not have NHS support at all, at the moment I have enough prednisone to help myself and intend to be “unable” to go to the next appointment as I will not be at the point he wants! I asked about adrenal function and he said nothing to worry about until I get to 3mgs.
I don’t feel too bad for the other 4 days of the week and manage to get out for a walk, volunteer for a few hours at the local Oxfam and go line dancing. I really feel MTX is not helping at all!
He's talking rubbish - 2 years in PMR is a myth. And adrenal problems start long before 3mg - you are fairly SAFE down to 3mg, but many people can't function far earlier than that. Plus, to be at 3mg by February even with MTX is ridiculous, MTX can take months to take maximum effect - it isn't immediate.
I have tried to say this but he dismissed what I said, I am uncomfortable and not confident enough to challenge him. I think I must write to my GP to see if I can deal with my reduction myself as you suggest, thank you.
I live in Derbyshire, my GP recognised PMR from my written synopsis and said she has dealt with a number of patients with it but had never seen such high readings! I assumed she sent me to a PMR specialist.
I am lucky so far and it may actually help me. I take 15 mg of MTX and no hair loss, nausea or mouth sores. I also take 5 mg of folic acid per day (prescription). I have bumped myself up to 10 mg pred temporarily. I need the 1 mgs. I recently switched pharmacies due to very bad service with previous pharmacy. With the new pharmacy though I have to hand my prescriptions to them manually. I have tried and stopped MTX several times but for no other reason than drinking alcohol. I had some alcohol over the holidays but moderate.
Yes! Absolutely! Adnams do a lovely one, but I cannot remember the name of it! It’s really like Prosecco … trouble is one can drink the whole bottle and never get the hit!!! 🤣🤣🤣🤣. When I last had … I had the real thing followed by some bubbly mineral water! Not on MTX night though! xx
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