Hi all
I'm 20 months into my PMR journey taking pred since Oct 18 my rheumatologist has suggested I change to methatraxate. My pain is bearable although stiff most of the day. I am having injections on my shoulders next week which takes the pain away for 6 weeks. I just worried what changing to methatraxate will mean to me. Value your opinions
Icu
Are you on just injections or Pred as well? If so, what dosing have been doing since you were on 8mg 5 months ago?
Now on 6mg of pred. I worry if I will have to shield if I go on methatraxate.
Have you ever been pain free?
Was going to ask same question as SnazzyD - sounds to me as if you’ve haven’t had your PMR under control for some time.
So I would hazard a guess that you have reduced too quickly - presumably following Rheumy’s orders.
Maybe before agreeing to Mtx it might be worth actually increasing your Pred to 10mg for a trial period of 7-10 days to see if that helps.
If it doesn’t then you can drop back down to current level - nothing lost.
If it does help, then you’ve proved you need more Pred. Then reduce more slowly - 0,5mg per month - and no need to add in another drug.
Methotrexate is a drug that can be stopped without tapering ( if it doesn’t suit you) which is its main plus for me. My own Rheumatologist ( prominent in our field) is keen on it for enabling patients who are stuck on Pred to taper down. It is not a substitute though and not designed for PMR. She also said “ ask any Rheumatologist, they would much rather be on Methotrexate than Prednisalone. To me the side effects seem considerable and the positive evidence for it scanty. My mind is open though. After 4 years of Pred I can feel it taking its toll. Maybe a “ steroid sparer “ would help?
It’s really helped me. When I stopped a couple of years ago I was ok for 4 weeks and then wham all the pain came back.
Why did you stop? Just wondering ...
Hi ICU1
Rheumatologist don’t usually change you from Prednisolone to Methotrexate as you can’t just stop Prednisolone, they usually recommend it as a Steroid Sparer to help reduce the dose of Pred you are taking.
MrsN
Sounds like they want to wean pred and take over with methatraxate.
Yes, that’s probably The Plan, what dose of Pred are you on now?
6mg at the moment. Started at 20 then tapered down to 5mg then back to 10 and weaning down again
Do you feel as if the PMR is under control at this dose? I was on 20mg when l was referred; down to 18mg when l started Methotrexate but unfortunately got ‘interrupted’ when l reached 7.5mg
I’m back on MTX now but only at 15mg & 12mg Pred but it’s not holding my symptoms at bay......
I’m writing to my Consultant/Rheumy Nurse & hoping to email or post it on Monday in advance of my next appointment as l really am in need of tweak at the very least!
Have you ever had shoulders injected I was amazed that the pain disappeared for 6 weeks it was fab
I did for a Shoulder Issue unrelated to PMR but it was like a Miracle & never had a problem since.......
Hi
I am very interested in these injections as I have only been free of pain in my left shoulder for 6 weeks after a decompression op. And now have a small tear in it,
I have been prednisolone for 20 months and had two big flares. Both after excessive exercise. So I am back up to 7mg no more jogging.
I have never been offered a different medication.
My rheumatologist has seen me twice on my request, I think as I am 51 and all my pains started at 45 he thinks I Can’t be that bad.
I have had cortisone injections directly into my shoulders while I was on Pred, they helped. I was having some impingement issues and they sorted it
The first injection was magic for almost 6 months. The second one was magic for close to three months. The third lasted about six weeks. The last one maybe two weeks and consequently I determined, for me, injections are not an answer.
Does he think you don't have PMR then? Because methotrexate doesn't REPLACE pred in PMR, it might let you get to a lower dose or reduce the number of flares you have when they try to get you to reduce faster than you should.
No they deffinatly think I have PMR the methotrexate is instead of pred, but I have to wean off pred.
Why?
You’ve not been on Pred that long - another unenlightened doctor that thinks PMR lasts only 2 years - it might for some, but not for all.
MTX is usually introduced if you have been on Pred for a long time and are having trouble reducing.....I would say the trouble you are having us because you are being rushed when your PMR is still active!
The answer to that then is a firm NO. They can't force you. If they do - find better doctors.
Methotrexate does NOT replace pred. Nor is there any good reason to put a patient onto mtx when they have already achieved what is called a physiological dose - a similar amount of corticosteroid to what the body requires to function day to day and the body produces in the form of cortisol. As you reduce the pred dose, the body must produce cortisol again to top the pred up to the level required (it stops while you are at more than the equivalent dose of pred).
PMR does not just last 2 years, half of patients require pred for management for up to 6 years. As shown in this study:
medpagetoday.org/rheumatolo...
The link to the original work is at the end. At the low doses required in PMR they found the incidence of so-called adverse effects was similar to that found in an age-matched population not on pred. I can testify that many of them are found in unmanaged PMR.
mtx comes with its own set of adverse effects - and believe me, for me they were far far worse than anything I have experienced in 11 years of pred. And I had no nausea - must have been the only one I didn't! I admit some people do OK with mtx - but in the case of PMR not mtx alone.
This is a link to the most recent recommendations for the management of PMR:
rheumatology.org/Portals/0/...
mtx is mentioned in Rec 7. But being on 6mg of pred after 20 months doesn't suggest that it will be particularly prolonged - the median time to 5mg is 18 months. You are not far off that.
So relieved to find this site !!! I’m in Australia, and my Rheumatologist wants to put me on a plan, reducing my prednisolone quickly, 1mg a month, (diagnosed by a wonderful new GP 5/10/19 after 5 months of terrible pain) I’ve had PMR for a year now, at 56 years of age.
Rheumatologist wants me to go onto Mtx... not doing it and thinking of only seeing my GP, who sadly is 70 and may retire soon.
Have had to stay on 5mg and endure the stiffness for the last month.
It is so wonderful to access your advice. Thank you it’s made a big difference for me.
Why on earath do we suddenly have a flush of doctors who totally misunderstand the current role of mtx in PMR? Try it as a steroid-sparer if you must - but don't try to tell patients that it replaces pred entirely. For half of patients not even tocilizumab does that.
As the others say Methotrexate is NOT a substitute for pred. In some people it helps them reduce more quickly and smoothly but not all. If your doctor really thinks that MTX is a substitute I would be somewhat concerned. You need to get back to a pred dose that gets you pain free again and then slowly decrease.
I was diagnosed with PMR in July 2017. After twelve months down to 6.5mg pred and stuck there for six months. My rheumy then suggested adding the MTX and I was able to reduce the pred to 2.5 in the next twelve months (.5mg per month on very slow taper.) Have had some tiredness and occasional lightheaded feeling but mostly OK. I take folic acid with the pred on the six days I don't take MTX, By June this year I've got down to 1 mg pred . Rheumy recommended staying on 20mg weekly dose of MTX until I get the pred down to zero.
Seems like different people have different experiences with MTX. I'm in Australia with a rheumy from UK I now only see each six months with a blood test each three months. Thought a positive experience might be useful to hear.
True - but at 6.5mg I don't quite see the logic of adding more potential adverse effects with something that is isn't guaranteed to work. Most patients would manage that sort of reduction over that time if they went about it slowly. 6.5mg is a physiological dose - about the same as the body produces as cortisol and the reduction is as much to get adrenal function back as to avoid waking the PMR. It is another thing to add it for someone stuck well above 10mg.
On 6,5mg for six months - was that because you couldn’t get lower or Rheumy suggested it?
If former, I would say that’s because that’s what your illness needed - 12 months in, sounds about right.
As for your next year’s reduction 6,5mg to 2.5mg that doesn’t sound much quicker than those not on MTX - but if you’re happy with it, good.
Your tiredness and lightheadedness may well be due to adrenals - so keep your eye on that - and if they don’t improve might be worth asking for a Synacthen test to check they are capable of working.
My rheumatologist told me to wean of pred which I did he then put me on methotrexate I had 8months of misery didn’t do anything at all for my pmr and wouldn’t listen when I told him it wasn’t any good for me in the end went back to my go and practically begged him for pred he gave me 15 mg a day for a week what a relief when I had my next rheumy app told him what had happened he took me off methotrexate put back on pred and said he didn’t need to see me as the dr could prescribe the pred needless to say he was no good and didn’t know what pmr is all about but that was my experience of it
MTX is not a substitute for Pred, it’s only a steroid sparer as Katiemills says.
As you say - better to stick with GP.
When my rheumy suggested methotrexate it was as a sparer to the prednisone, definitely not a substitute. However , I was struggling a bit at 20 mg , and stat
Oops sorry , pressed send 🙄
I started methotrexate when I was at 15 mg . I remember my rheumy saying it was the lesser of the two evils, but I’m pretty sure he wouldn’t have suggested it if I’d managed to get as low as you have on my own . I’m now down to 8 mg prednisone but he’s never suggested stopping the prednisone.
Did you know you can edit your own posts? Use the More box for the menu
Thank you!
You can amend a reply - don’t have to start a new one. Just tap the “More” box under your reply - gives you options to edit or delete.
Thank you !
Hi ICU1. I have been on a weekly dose of methotrexate as a steroid sparing medication for about 3 weeks now. I have GCA. I started at 7.5 mg once a week and from last week increased to 10 mg once weekly. It is early days for me and my understanding is that it takes a while to see any real results.
Methotrexate is used a lot for treatment of rheumatoid arthritis. It is always scary changing medication. I would suggest voicing your concerns to your medical professionals. Once you have all the information, you can then make an informed decision. It sounds like your current medication is controlling your symptoms but perhaps your rheumatologist thinks the methotrexate would get rid of the stiffness.
Let me know how it goes.
On pred. for about 18mths for PMR. Was diagnosed with inflammatory arthritis in right knee about 6mths after the PMR diagnosis. Began getting unusual PMR blood tests (e.g., sed rate normal CRP abnormal or both normal). Went to Mayo Clinic for further diagnosis. At Mayo was diagnosed having seronegative RA and started on Methotrexate while tapering off Prednisone. Been on Methotrexate for about 1 mth and am on 10mg/wk (take once/wk) combined with 4.5mg/day of Pred and tapering the Pred about .5mg/10 days. Results (stiffness only no pain), so far, are about the same as using Pred. only.
But that is different - that is most likely to be RA, an inflammatory arthritis, with a polymyalgic presentation. The first line treatment for RA is methotrexate although pred will also provide relief in the shorter term.
So if the Pred works for RA as well as PMR how come so many people say that good response to Pred confirms it is PMR? Is it possible then that a lot of people diagnosed with PMR have actually got RA? Confused dot com here. Just when I thought I'd got my head round it all. Is there also such a thing as infectious arthritis that presents as PMR? There seem to be a helluva lot of young people on Facebook groups, diagnosed with PMR but over it very quickly, like within 6 months so telling everybody else they will too! One man (yes I know men get through it more quickly anyway) was diagnosed with PMR even though only had problems with one shoulder and one knee! Came off the Pred after 2 months and reckons he's cured. Also can you have RA even with a negative rheumatoid factor blood test?
Because that is just part of the story - the speed of response and low dose, 15mg, were also included as crucial. Give someone enough pred and most inflammation will resolve! However - it is actually a bit of an urban myth. It isn't confirmatory - it is just another brick in the wall of diagnostic factors. Just like you will hear doctors say "the blood results confirm it is PMR" - no they don't, they just add to the balance of suspicion.
The youngsters on FB are part of the reason rheumies would like to see all ?PMR patients on a fast-track without having had any pred - the other part is that is the only way they can get enough patients to enter clinical trials. There is quite a high proportion of so-called PMR diagnoses that aren't and I have always maintained there is a reactive form, just as there is a reactive form of inflammatory arthritis. There are criteria for a PMR diagnosis without PET-CT imaging: the symptoms must have been present for 6+ weeks, they must be bilateral etc. IF the patient fits the criteria and responds well to moderate dose pred, 15-20mg, OK, that possibly is PMR. But anyone outside that needs to be seen by a specialist.
RF is a rather wishy test - you can be RF+ve and perfectly healthy or RF-ve and have raging RA. However, there is a theory that someone who is RF+ve will probably at some point in the future develop and inflammatory arthritis.
anti-CCP is a game changer though
arthritis-research.biomedce...
Thanks so much for the explanation and adding to my knowledge! There is so much misinformation out there at all levels, patients, doctors and rheumatologists. There also seems to be an influx of young people being diagnosed with PMR after some kind of virus - of course people are assuming they had Covid. And various posts also saying PMR is now being 'cured' by anti-virals. Then you've got us oldies saying that doesn't sound like PMR and then youngsters being adamant they've been told by their doctors it is or isn't PMR and everyone else saying if you respond to Pred it must be PMR. But even if people are referred to rheumies there's no guarantee they'll get it right as some of them don't even believe you can get PMR in your 50s let alone 40s! I think we've hi-jacked a thread here, shall we start a new post on this topic and move everything there?
PMRPro, Dadcue, Visionatsea as this is a tangent off the original post which was about MTX I'm going to start a new question thread called is it PMR or something else, then please could you copy and paste your fantastic replies to my questions as I think others woud be interested in this. TY x
RE: Your last question. Yes you can. It's called seronegative RA.
Wow thank you so much, that has filled in a big gap in my knowledge
I was diagnosed with PMR on 6/19/2019, Hospitalist started me at 80mg/d. Rheumy started tapering me. Had a flare in November while at 9mg/d and another in February this year at 6mg/d, both flares because I dropped too fast. I’m now holding at 7 mg, been 2 weeks, not going to attempt starting taper to 6.5mg/d until next Sunday.
My Rheumy has been pushing at me to consider Mtx since about September. Indicated it is known that Pred causes has several side effects in everyone, and that Mtx risk of side effects is 5% and could “possibly” allow me to get to a lower Pred dose sooner. Also told me that it takes “2-3 months” before seeing any potential benefit! Additionally, as said above, can stop taking it at anytime, no taper required.
I’ve refused. At each consult he reminds me of the option. I don’t feel I’m at a standstill, just went too fast a couple of times and flared.
5%? So why do 30% of patients on it discontinue it?
mdedge.com/rheumatology/art...
Interesting figure for fatigue there - 86% but it was suggested to me it wasn't common ...
Good question!😂 I didn’t check up on it because didn’t care to take it. Just goes to show how well versed this Rheumy is.
Thank you for the article, I saved it as a pdf that’ll keep with me for office visits for the next time he mentions adding Mtx.😁
It’s prescribed to my wife (has mild COPD) when gets a lower respiratory infection and develops a cough. Has to take 30mg daily until she has gone 24 hrs with no cough, then tapers off it.
When I was having my hands tingling, feeling swollen and numb. My Rheumy indicated it could be a PMR flare or CTS, no matter he stated, due to inflammation and Pred would manage it. Bump up your dose...that is what I consider a flare in February. Wonder drug!😂
I am gca suffer, had pred regularly, dropping steadily, but two flares even though slow reduction. I was put on MTX when down to 20mg/d of pred and seems to have helped reduce pred steadily. Now on 1mg/d pred and 15mg/wk MTX. Gca seems under control, though still very weak and have little stamina. Worse though is that as I reduced pred, I seem to be totally whacked on MTX day and day after - like I sleep for 36-48hrs! This is meant to be a minor side effect but on this basis - for me - it is full on and difficult to avoid. OH not impressed!
So whilst MTX aided reduction I think, MTX has unwanted side effect. Don't know what the answer is, but be very careful starting on road of MTX if pred journey isn't settled.
Good luck.
At least it was "only" 2 days for you! I think the fatigue might be acceptable for patients with an inflammatory arthritis where it is the main medication. But for most of us, whether PMR or GCA patients, it is only a hopeful attempt to reduce the pred dose by a few mg at best. It almost never replaces pred entirely.
I was put on MTX as a steroid sparer. It is another 'thug drug' though, with some unpleasant side effects if you happen to be one of the minority who gets them. It also requires regular blood tests to monitor its effects. I found it did help me to reduce the steroid (all my steriod was with Depo-Medrone, the jab form of Pred, and administered into my often inflamed glutes!!) I did find it gave me more movement in my limbs, but had to be able to stand some pain to get there (with no bad effects in the long-run).
I would say as others have, that you need to get your PMR stabilised on the current drug first. Your Medic sounds like one of the ones who wants you off Pred ASAP, whether you are ready or not, which is not helpful. But if you are found to have osteoporosis, for instance, the MTX should help you to reduce Pred further so that you lessen the bone loss. If you do go onto it and have side effects, I do know of an alternative Folic Acid you could try - but please PM me to discuss.
I changed to this and nearly all my hair fell out!! Aldo got a rash had to stop taking it.But I didn't feel sick or any other side effects.Think I was probably unlucky so give it a try it's better for you than steroids which I'm still on for GCA and PMR. after 18mnths.
All change
Change in Diagnosis?
3 years and still no change
Flare caused by dosage change?
