Saw my rheumatologist yesterday and he says I’m having a flare and wants to get it under control ( I ache again and inflammatory markers up) He doesn’t want to increase my pred but has said to go back to alternate days of 10mg and 15mg and wants me to take weekly methotrexate and see how I go. Does this sound like a reasonable response? I thought he might suggest upping the pred and then doing a slower taper. So naffed off I have to take tablets, have blood tests, osteoporosis worry. I do know things could be so much worse but didn’t think I’d be in this position health-wise at 54.
methotrexate : Saw my rheumatologist yesterday and... - PMRGCAuk
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Rebsy
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DorsetLadyPMRGCAuk volunteer
Not a fan of the 15/10mg alternate days-think it’s too much of a change for body to cope with. See you did that originally -but a better way (too late now) would have been a step down to 12.5mg then down to 10mg -but that’s water under the bridge.
My view would be stay 15mg for up to 2 weeks -then drop down as suggested above. 12.5mg for 2-3 weeks ( although 4 would be better) then to 10mg.
Depends on how long you have before you have to report back🤨
Once you get to 10mg usual recommendation is 1mg steps down every 4/8 weeks depending on patients wishes and diseases activity (quote from official BSR guidelines).
As for MTX , don’t think it’s necessary if you are allowed to taper sensibly.
Not sure if you’ve seen this -maybe worth a look if you haven’t-healthunlocked.com/pmrgcauk...
Thanks DorsetLady - don’t have to report back for a little while ( see below) so will try your suggestion.
Okay -but don’t push on if you find yourself stuttering at 12.5mg -as PMRpro says that’s why there are 1mg tabs.
Hi, i'm doing 0.5 mg on DSNS although usually start at 1day new and 4 days old dose and end on 1 day old and 4 days new, so dropping 0.5 every month. Currently going from 9 to 8.5 but taking this a bit longer as a holiday for 2 weeks in between and getting very very tired. Am I going too slow? Should I be dropping 1mg on DSNS? Not much prob with aches but suffer terrible tiredness.
No I don’t think so, your tiredness’s is probably due to adrenals, and many find a slower taper -and smaller reductions helps them too.
I know we always quote 7-8mg for adrenals to start working again, but it does vary -anywhere from 10mg down to 5mg.
Personally I would continue as you are -it’s obviously working PMR wise -and hopefully will also help adrenals.
PMRproAmbassador
"Does this sound like a reasonable response?"
Frankly - not in my opinion. I really don't like alternating 2 such different doses, there is a reason that they make 1mg tablets! And there is no guarantee you will do any better with methotrexate. They have such a fixation about the stuff but it only works for a small proportion of patients and a sensible slower less yoyo approach to pred dose usually works just as well without adding in another immunosuppressive agent. Prof Sarah Mackie, who probably knows as much about PMR as half a dozen other rheumies put together, uses slow tapering before resorting to using MTX and she has funding to start a proper assessment of MTX in PMR.
Some people simply can't tolerate such large changes in dose - top experts recommend not more than 10% of the current dose as step down intervals. At 15mg that is 1.5mg and a few struggle even at that.
Thanks! I am going to hang fire with the methotrexate. I’m currently transferring to an NHS rheumatologist near me ( I can’t get anymore on private insurance) who I see in October. Will be good to get another opinion. Think I’ll try DorsetLady suggested taper .
That's the trouble with private insurance - once you have a chronic illness they aren't interested.
Who/what hospital are you transferring to?
Was with Dr Patel, but his NHS clinic is Kings College and too far for 15min consultation so I’m seeing someone at Kingston in Oct - we shall see.
Am under nhs @ Kingston you will be delighted with the rheumatologist… I was under Dr. Patel privately but find the other doctor at Kingston far more caring.
Hi Rebsy - if you do decide on the MTX Route you have to be seen on the NHS as Private Insurance won’t cover the cost of Tests & Routine Blood Tests & possibly not even the Medication itself.
I don’t know if anyone on here that’s on MTX & being seen privately as your GP has to sign a Contract with your Consultant/Hospital for Joint Care…..
On two occasions l started MTX l was transferred to the NHS
Interesting. I’m going to defer my decision on MTX until I’ve see the NHS team in October. It was all too fast.
It’s not a spur of the moment decision & you need to come to the conclusion yourself. Not everyone on here has been prescribed it or even agreed to take it if they have.
Quite honestly - if you get to the point where you can’t reduce Pred & the Pred Dose is causing you issues then it’s time to look at incorporating a Steroid Sparer……
Diagnosed October 21 and it is now 10 months and he wants you down and onto Methotextrate. Bet he is one of those who expects it lasts for 2 years...........grrrr.
BTW sent you a PM.
I could only tolerate 1mg from 15 to 10 mg and from there only 0.5mg drops. At 2.5mg I had to change to to 0.25mg after 3 attempts to get to 2mg. It has been a slowish journey (4 years 4 months) but one with only small glitches and without any major upheavals and feeling fine on 1.25mg at the moment. 🤞
I hope it is all sorted out for you very soon. 🌻
so good to read this Meggsy. I'm dropping 0.5 and have done since got to 10mg. Was wondering if going too slow. My main problem is awful tiredness.
So sorry to hear that. My story is so similar to yours I’m 54 and diagnosed last September. Have tapered once then got bad again told to increase steroids now down 1mg a month on 9 now. Interesting to hear if methotrexate works for you or how you go tapering down. Dont know about you but they are desperate to get me right off the steroids which is great but twice now like you say I end up with awful pain and such limited movement I can’t even comb my hair and struggle getting sleeve in let alone do up bra etc. I imagine this is horrible at an older age still but find it frustrating and upsetting at our time in life when we are were active and busy. I had full time job but had to temp give up due to illness and now desperately need to get another one but terrified this will gradually get worse again. I do hope this does ‘get better’ within 2 years as they keep assuring me but have to say I’m not convinced that’s true. I wish you all the best would love to hear how things go for you this is such an isolating illness x
Thanks for your reply - it’s interesting to hear your experience especially as we are the same age. I’ve found this site so helpful and reassuring. My consultant is also keen to get me off the steroids and I suspect suggesting methotrexate is a path in that direction. He’s been realistic about time frames, always said minimum 2years but probably longer. I’m finding it hard to come to terms with being a pill taker, putting on weight, and crappy fitness levels. I need to give myself a good talking to! Take care and keep in touch.
Yes, back zips in dresses and bras are my problem. I've yet to find front fastening bras in a large enough size for me. It is isolating, social life is non existent, my OH has cognitive impairment so he doesn't really understand how I'm feeling.
Oh that must be very hard for you. It is not nice at all and being in constant discomfort with limited movement really gets you down x
Snap the bra in the front first, then turn it to the back, then put your arms thru the straps.🤗
Gave to say “they” may be desperate to get you off Pred -but so long as your PMR is active, it’s not going to happen.
Don’t think I sent you this before -apologies if I have-but might help you have a better understanding-
healthunlocked.com/pmrgcauk...
As for front fastening bras -have used them for long time -GCA initially -and then shoulder arthritis have you looked at Glamorise or Miss Mary of Sweden -not the cheapest -but good quality.
Thank you, I will google them
It rarely gets beter in 2 years - and you will need some pred as long as the underlying autoimmune disorder is active. They can't "get you off pred" until it has burned out. Pred cures nothing - I know they are terrified of pred but it is the mainstay of management of the symptoms until something better can be found. And there is absolutely NO proof that MTX is that something better - I'd say there are more failures with it than successes on this forum. It does work for a small cohort of patients - but only a few. Otherwise you are adding a second immunosuppressant drug with some very unpleasant potential side effects.
I'm finding this thread hard to follow, please can you clarify -If the aim is to get you off Pred does Methotrexate replace Pred completely or is it taken in addition to Pred?Or is MTX started at a low dose and gradually increased whilst at the same time Pred is gradually decreased? If so what sort of time scale are we looking at - weeks or months or like so many things does it vary from person to person?
It varies from person to person - there are rheumies who will claim it replaces pred. It doesn't for the vast majority although it does seem to work very well for a small proportion of patients.
It is what is called as a steroid sparer - by taking it at the same time as pred it MAY potentiate the action of the pred in some way and allow you to get to a lower dose of pred. Or it may smooth out the tapering of the pred dose and so people flare less while tapering. But there are no guarantees and it comes with its own set of adverse effects. The studies that have been done say it takes at least a year to see any benefit in terms of accumulated pred dose - it is a long term project. There is a standard dose of MTX used in rheumatology, usually alongside the dose of pred the patient needs and then they ry to taper the dose of pred - just as they did without being on MTX.
If you look at the list of related posts you will get links to many past posts about methotrexate, There is also quite a bit in the FAQs including a fairly detailed post by MrsNails.
I didn’t do well between 15 and 10 alternating. I felt completely drained and disfunctional. You definitely need to drop slower. Now hovering around 4.5 and 4.0 trying to find a happy balance.
HI Rebsy, if on the off chance you do start on methotrexate, this has been my experience in case it's of any help.
I was officially diagnosed with PMR in April 2021 and have tapered to 7mg pred. since then.
A few months ago the rheumy started me on 10mg of MTX a week. I took it with great reluctance but it did make an immediate improvement (about 50%) to my significant fatigue and stiffness. I can walk a lot further and more easily now, and need less daytime sleep.
The docs for some reason forget to tell you some important detail about MTX etc. ie. Stop taking it for 2 weeks after a vaccine, stop taking it while sick with other ailments - because of it's immunosuppressant effect. (If you go on it, you might like to run this past your doc).
MTX has of course left me wondering/worrying what other side effects I might be up for (apart from the pred ones). Also I have pretty much given up drinking alcohol due to its potential effect on the liver. Whatever you do, good luck with it all.
Thanks for the info, that’s really helpful. I do love a white wine so the liver side effects concern me - I know you can have fun without alcohol but why risk it 😉
redruth123 & Rebsy
I’ve bern on MTX three times - the first time was the most successful in that l tapered from 18mg Pred to 7.5mg - it had to be stopped for Surgery & Chemotherapy, l didn’t drink alcohol at all during that period.
I was off MTX for about a year after Chemo when the PMR started raising it signs & symptoms again so l was fast tracked back on to it to try & prevent a full relapse. This time around l wasn’t as strict about the odd glass of wine or the side effects of MTX as looking aggressive breast cancer in the eye changes your perspective.
My Story is long & complicated in parts - MXT was stopped by a Locum Consultant due to my liver markers & my PMR went into a downward spiral - you can read it in FAQ’s
However, l am now on 25mg MTX & 12.5mg Pred; my PMR had been compromised by arthritis, plus accelerated wear & tear not in short part due to the Chemotherapy……
MTX does not cause me any issues, the regular blood tests pick up any changes in blood markers long before you’d show any signs or symptoms.
I’m going through a rough time at the moment PMR/Arthritis Wise hence why l’m back up at 12.5mg & starting a slow taper (again)
I’ve a holiday coming up & when l return l think it’s time for a Big Review with my Consultant & GP
Good Luck with your progress
MrsN
MrsNails thank you very much outlining your considerable experience with MTX. Hoping you had a good holiday. Yes PMR combined with arthritis etc etc is a challenge indeed; I suspect the rheumy will be doubling my dose of mtx soon, so I'm comforted to hear your experience, Thanks very much. Good luck to you too.
Hi again Rebsy - just to give you some hope - rheumy told me I can still indulge in a couple of standard drinks, twice per week. Not that I'll be stretching my luck that much, but it's good to know that a social drink is ok.
Hello redruth 123
Although it’s two months since your post was written, I found your story interesting as it resonates a bit with my history. Although I’ve had PMR since 2020 - rheumatologist is preparing me for MTX, of which I am apprehensive about taking because of all the caveats! It was good to read that you found something positive from MTX and that the fatigue, stiffness and energy levels are improved. How are you now? xx
Hi autumnlass Thanks for your message. Same here with the onset of PMR in 2020!. Just took 6 months to diagnose so the treatment started in 2021 :(. I hope the following helps ----- Re the MTX - well it's not been a miracle cure or anything, but my husband assures me that I groan less often when I sit or rise from a chair, that I sleep less in the afternoon and can usually walk further. Feeling weakened and below par all the time, it's helpful to get these reminders of improvement. About 1 day a month I feel miraculously like my old self again (no explanation for that), about 2-3 days a week I feel just awful, very stiff, and cant achieve much, the rest just pottering along so so. It's quite a mixture; overall though, functionally much better than before MTX, which is very important for sanity. As a side benefit, feeling a little better has helped me move away from lots of comfort food and alcohol into a much better diet for PMR, and I am losing a kg a week. Rheumy is saying I may be bumped up to 20mg a week from Dec - at next appointment. Not keen but I'll give it a try if so. Lastly, if it's of any help to know this, I am due to taper to 6mg now and will do it the slow and steady way. Will be interesting to see how 6mgs pans out..... Btw, I've had no blood tests for some time to check on the side effects of MTX, but doc seems unphased by this (??) Will be having tests in Dec. I'm in Aust and I believe UK (assuming you are in UK?) testing protocols are much stricter than here so that's good! All the best with whatever direction you take autumnlass. Feel free to ask more questions if they arise, or let me know how you go. best regards.
"doc seems unphased by this " - well I would be and be asking why!!!! Really wouldn't want MTX side effects ignored! You shouldn't get your refill without bloods being done.
Hi PMRpro, thx, yes it's a bit complicated. I'm in a crossover between 2 rheumys - the last excellent one - which you may remember details of? - is moving away from practice into research so I've already consulted a new one who was quite happy with limited tests. In between times I kept my final appointment with the previous rheumy and I asked her why the current one does limited testing. She was OK with it!!. As you say, I am not and should not be, and WILL definitely be pressing the point at the next appointment in Dec. Do you think I should try to contact him earlier ? Thx.
It probably depends on how long you have been on MTX - if it is a long time and you are stable that could account for them being so laid back. But there really isn't an excuse - the GP can see to the bloods being done between times and you can see the trend of the results. The UK seems to have a fear of doing bloods - but it seems to be spreading to Oz now!!
interesting Pro - I must say that when my daughter was diagnosed with RA in 2015 and was put on MTX they were very assiduous doing her bloods every month I think. We live in Suffolk. Maybe it’s changed in 7 years? Anything’s possible!
It should be every month initially and then longer intervals - for convenience I suppose. But none is not good enough. Yes, cut down on monitoring when it is OTT but the nasties with MTX are a bit too nasty to be ignored altogether!
What's changed is Covid but that still isn't an excuse for being negligent. MrsNails will know what it should be now.
autumnlass
It always was monthly until you were stable but still most people had it done monthly but as PMRpro says during a longer time issues could arise….
During Lockdown it was generally decided that if you were stable it could go to two monthly & that seems to be the norm now……
Thank you Mrs N.
Thank you PMRpro.
Hello and thank you for your reply so promptly! You give a very interesting account of your journey with MTX & put a lot of positives in the message to me. My daughter as I mentioned to PMRpro has RA and was on it for 36 months and went into remission but it returned in February and now she’s on Hydroxychlorquine and is fine. She is quite positive about MTX but then she has RA - different from us!
I managed to get down to 8 mgm and further to 7.5 but flared again in August and went up to start dose of 15 mgm. It’s quite unstable at the moment - hence Rheumatology want me to consider MTX. Ah life!
You’ve done very well getting down to 6 mgm! 😁 Thank you again and I’ll let you know how I go! Meanwhile very good wishes to you too. 🌺🌺
Glad it was of some use autumnlass. Onwards and upwards hopefully! Good to hear your daughter has done so well. The science of rheumatology can be a confused one it seems; as is evidenced on this forum, different rheumys have different methods. Thank goodness for the sanity of this forum 
Aaahhh. Feel for you. I was 53 yesterday so know how you feel. Try the methotrexate but it can take 12 weeks to work. Stick with your plan of pred and if you DO tolerate the methotrexate you should feel a lot better for Christmas. Good luck xx
Since this is a forum I wish to explore the experience of others in a bit more detail. My PMR arose directly from the mal administration of the Covid booster vaccine with the influenza jab; a small body of people can have a severe auto immune reaction to that practise but are ignored in the interests of the majority. Pred was prescribed but no blood thinners. 2/3 months later I suffered a stroke, indeed there was a plague of strokes in the hospital I found myself in.Pred is in my view a poisonous drug and Methotrexate even worse. The target should be to somehow wean oneself off the former as soon as possible whilst going nowhere near the latter. I have been trying to taper down (now 8mg) for months amidst conflicting advice from professionals.
How many others I wonder developed PMR after vaccination?
You cannot claim it was " mal administration of the Covid booster vaccine with the influenza jab" that caused your PMR. It is well known that the influenza and shingles jabs can trigger PMR but there is no single cause - it is a final straw effect of an insult to the immune system on top of a life-time of other such insults together with a genetic predispostion and the vast majority of cases of PMR/GCA occured long before the Covid vaccine was developed. Many of us have PMR without ever having had a flu or shingle jab - and most certainly not the Covid jab. I saw recently that the Covid jab is less likely to trigger PMR than the flu jab is. Either way, the viral infections themselves are even more likely to trigger long term disorders.
Nor can you claim pred is a "poisonous" drug - used properly it saves lives and, in our context, sight. If you don't like it, don't take it. But your alternative is that all the symptoms of PMR will return - it is a chronic though self-limiting disorder for most people and takes time to burn out and go into remission. THAT is the reason you can't get off pred - you could if you wanted to, you just taper the dose and switch to hydrocortisone to encourage the return of adrenal function. But the PMR will reappear once the antiinflammatory medication is removed. But that isn't pred's fault.
Where do they get these crazy ideas from? MTX works for some people, but takes 3-6 months to do anything, during which time you often get very unpleasant side effects, so it's not a quick solution, if it works at all. And I haven't seen any studies anywhere (Pro will know if I'm wrong) that advocates that alternate day dosing. With a flare you generally need to get on top of it quickly to mop up the inflammation so things that work for many people are increasing the dose by say 5 for say 5 days then going back down to one above where you flared. Of course you need to consult your doctor, tell them you found the info on the PMRGCAuk patient forum.
I've been fine on MXT since last October. The pills hurt my stomach so I do weekly injections. No real side effects. Maybe a little tired the next day. I do the shot just before bedtime. If it's a pred taper week I do it the day after the shot. I am at 4.5mg, down from 25mg last June. I failed at 4mg in July. Going really slowly now. 4.5 alternating days with 5.0. Next I'll do 4.5/4.0 alternating days. Good luck!
Well Done on your Taper so far 👏🏼 If you are in the U.K. you can get plain 2.5mg tablets that split nicely into 1.25mg so make tapering even slower.
Good Luck 🍀
Thank you! I am in the US. I am lucky that my doctor lets me control my taper. We have 1mg tablets here so splitting is easy. I even do quarters sometimes. 
As others have mentioned, alternating such different doses of pred (15/10) is likely to be difficult for your body to process.
As far as Methotrexate goes, I didn’t resort to trying it until after I had been stuck at 9mg for almost two years, and did so with great hesitation. I’ve not had any side effects since on-boarding the MTX this past January, and I’ve had some success lowering my daily pred dose, but it is still slow going (dropping .5mg of pred every 6 weeks), and I find that I suffer from delayed onset muscle soreness more often and easily post physical activity.
I’m thinking just a better tapering plan that avoids the yo-yo dosing may achieve more positive results overall. If you are already finding it challenging to accept taking pills (pred), on-boarding an additional immunosuppressive medication could likely make you feel more uncomfortable about your treatment. Please do advocate for your health and all the best with the new rheumy.
Thanks for your advice. I thinkI’ll plod on with pred as suggested by DorsetLady and see what the new rheumatologist says in October ( two positive reviews from members on here so looking promising)
You can only be on MTX when under a consultant so you will need to wait and see ...
My consultant told me to read up on MTX (on versus arthritis website) but gave me a prescription and told me to get my liver function checked before I start!
You will also find a lot about MTX in PMR in our FAQs. PMR is NOT the same as RA and there are good reasons why it isn't the first line approach in PMR as it is in RA.
You need someone ‘in charge’ of your care when on MTX The Consultant & your GP have to sign a Shared Care Consent Form.
You need more than just your Liver a levels monitored, you need a chest X-ray before starting & baseline bloods….
You also need access to the Nurses Hotline Number for any questions or issues plus education on MTX from a Nurse…..
Sounds a little cavalier to me - l’d wait until you see your NHS Consultant.
I am under the supervision of a rheumy who prescribed MTX after I completed initial bloodwork. I did not have a chest X-ray, however I do get bloodwork every month and meet with my rheumy every 3 months. I didn’t receive much “education” prior to starting it (I did my own “research”), but my rheumy and her interns have answered my many questions throughout my experience.
This is just my personal experience here in Ontario, Canada. Sounds like protocols are different elsewhere.
I am also under the rheumatology team at Kingston. I was struggling to taper from 15mg last September and I very reluctantly agreed to try methotrexate. Fortunately I haven’t suffered with side effects and my bloods are checked every two months. I have tapered steadily every 4 weeks since then with no flares and am now on 3.5mg. There has been no pressure to reduce quickly. Appointments are only every 6/9months but the nurses helpline answer any email enquiry very promptly.
Some people even have trouble dropping 2.5 mg from 15 mg. That is, as pointed out, more than the recommended no more than 10% of dose. Not a fan of alternating dosage. In fact this is not recommended for PMR patients as we need the constant steady supply of pred to manage the symptoms from day to day. If you find the 2.5 is difficult, please don't try to tough it out. If you have access to 1 mg tablets, go by 1 mg at a time. You may be able to drop more quckly if symptoms stay at bay so it may not take any longer, or not much longer, than the doctor's instruction to drop by 2.5, and with less risk of the symptoms flaring up again. "It isn't slow if it works". At any point you can use one of the slow taper methods described in a FAQ post, and very much recommended after attaining 10 mg. Good luck!
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