Can someone please explain how methotrexate works and what benefits might I feel from it? My rheumatologist continues to describe me as PMR+
That’s because my left knee continues to cause me problems. She still believes I don’t have RA. MTX is the next option I have in our NHS system.
Struggling currently with taper from 8 to 7.5. Slowing it down as have felt little achy and shivery. Stopped taking leflunomide last week (my own decision as don’t think it’s doing much and only way to find out is to stop) I’d need to stop it if I started mtx.
Any advice gratefully received. I’m on a mission as a new year starts and my 4 year PMR anniversary looms 🤬
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Lochy
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Hopefully MrsNails will be along shortly - she’s our expert on all things MTX. In the meantime might be worth looking at her profile and some of her posts on the subject.
Morning, had a sleep in after the Police Helicopter kept everyone awake half the night.
As Dorset Lady says I’ve had a lot of experience of Methotrexate & am back on it for the third time.....
It’s actually classed as a DMARD a disease modifying anti rheumatic drug, it is used is several branches of medicine for different conditions.
It was originally used as a Chemotherapy Drug but as often happens other uses/benefits are discovered along the way.
It is used in RA to great effect & prevents joint damage. Rheumatologist’s sometimes think of using it as a Steroid Sparer in PMR ie to make the Pred work more efficiently, l do myself have the RA Factor but no signs of RA at this time.
I note you are/were already on a DMARD - Leflunomide & that is sometimes given along with Methotrexate.
As to how it actually works l’d need to look that up or PMRpro will provide that answer later.
But in layman’s terms it is taken alongside Prednisolone to help you taper, l went from 18mg to 7.5mg the first time l was on it, until my world was turned upside down by a Breast Cancer diagnosis.
I’ll see what l can find for you on how it works, l obviously did a lot of research back in the day but l’ll have to look it up again.
I will add to this post later.
Kind Regards
MrsN
Steroid-sparing drugs
There is great impetus to develop treatment alternatives to corticosteroids. However, there is currently no alternative drug in polymyalgia rheumatica which is supported by good evidence and is affordable. Steroid-sparing drugs, such as methotrexate, are therefore not currently recommended to be started soon after diagnosis, as is the case in rheumatoid arthritis. The decision to commence a steroid-sparing drug is a personalised one based on perceived ongoing need for prednisolone. It is not possible to predict who will benefit. One approach is to consider a steroid- sparing drug in patients who flare at least twice while following the British weaning schedule15 or who develop overt inflammatory arthritis.
Methotrexate is currently recommended by both international4 and local guidelines16 as the first-line steroid-sparing drug to consider in polymyalgia rheumatica. These recommendations acknowledge that the evidence to support this advice is of poor quality. Leflunomide might have promise,22,23 and it is currently the subject of a trial in Europe, but there may be problems with individualising the dosing.24 Both of these drugs are used in rheumatoid arthritis, but there is no role for most other antirheumatic drugs in polymyalgia rheumatica.4 This emphasises the fact that polymyalgia rheumatica is not merely an extension of rheumatoid arthritis. The use of either leflunomide or methotrexate in polymyalgia rheumatica is off label so specialist oversight is recommended.
Article information
Aust Prescr. 2018 Feb; 41(1): 14–19.
Published online 2018 Feb 1. doi: 10.18773/austprescr.2018.001
PMCID: PMC5828929
PMID: 29507455
David F Liew, Rheumatologist and Clinical pharmacology fellow,1 Claire E Owen, Rheumatologist,1 and Russell R Buchanan, Director of Rheumatology1
Lochy, Methotrexate really did what it said on the tin for me, it got me successfully down from 18mg to 7.5mg, 1mg a month until 10mg then down by 0.5mg per month.
I returned to MTX about a year after l stopped taking it as l felt the PMR raising its head again so l was happy to restart again.
I eventually got to 5mg but went back to 7mg but it was more about my adrenal issues than anything else.
Skip on 12months when a Locum Consultant stopped the MTX because of raised ALT Levels.......
It’s taken 16months to get back on Methotrexate due to Moving House & there being No Rheumatologist at my local Hospital etc & l can honestly say it’s been the hardest 12months of my life.
I am now back on 15mg per week, previously on 20mg but DrD is taking it cautiously as my Liver Levels are not great but in my case the benefits outweigh the risks.
I’ve been having two weekly blood tests but l am now on monthly which is better for my poor arm as the veins are getting very hard......
If/When you start on MTX you have baseline blood tests & a Chest X-ray, start on half dose MTX then have your bloods taken two weekly for six weeks to ensure you can tolerate it.
The blood tests show markers long before you would notice side effects, that’s why it’s important to have them done in a timely manner.
Your GP should not issue a ‘Script for MTX without recent blood test results in front of him.......
You should take the Folic Acid as prescribed by your Consultant, MTX destroys Folic Acid & must be replaced on non Methotrexate days.
There can be issues of tolerance when you first take it & I have written a Post on Tips/Hints when taking MTX - have a look at my Posts in My Profile Page & I’m happy to share any information or experiences l have.
Some people do well, others not so much. I’ve experienced Chemo in the middle of my PMR Journey so MTX for Me is a bit of a ‘Walk in the Park’ by comparison.
It’s not easy to take & get used to at first but if it works then it’s very worthwhile.
I never drank Wine while l was on MTX the first time, the second time after Breast Cancer well, l kind of took the attitude ‘What The Hell’ but now this time around due to my fatty liver No Wine......
Pain, is relative & l’m not good at remembering what it was like, unless l experience it again. I’d say the pain improved while l was on MTX - we managed many holidays including a month in the Far East in a Cruise when l was on 7.5mg Pred & 20mg MTX
Currently, l can hardly walk around the Shopping Centre so l’m pretty keen for this MTX to kick in again.
You can PM me anytime or happy to share on the Open Forum.
Thanks so much Mrs N. I have followed a lot of your posts with interest and you have had a very ‘rocky’ journey. I will PM you if I need anymore help or advice. At my last rheumy appointment (November)she took bloods and updated my chest X-ray. I get bloods done monthly at GPs and am due there on Wednesday 8th so in theory I’m good to go. My rheumatologist also did a liver ultrasound which came back clear trying to reassure us all! My regularly fluctuating LFTs certainly arouse interest/concern at the GPs unless my usual doctor sees them first!
I hope you continue to improve and that the mtx gets going!
I doubt it - even the doctors don't really know how it works in some diseases except for the mechanism of action: methotrexate interferes with DNA synthesis, repair, and cellular replication. By inhibiting folate it stops the DNA replication process and cells that divide quickly die off. That is why they give folate AFTER the mtx dose to reduce the effect on other quickly dividing cells such as hair follicles.
It has a suppressant effect on the immune system so in RA it is hoped there will be less inflammation created and less damage to the joints. In PMR they don't know how it works on the disease, it doesn't for some, but there is some evidence it does potentiate the effect of the pred.
Will it work for you? The only way is to try it and see what adverse effects you experience - for me the fatigue was overwhelming and I actually felt as bad on pred plus mtx as I had with totally unmanaged PMR but MrsNails had good experiences with it. On the other hand - I have a friend with PMR who got a moderate result with mtx and an excellent result with leflunomide.
Why did you stop taking the Leflunomide, was it the side effects? I've been taking it for 9 months and it's allowed me to reduce the steroid dose down from 10mg(not possible before the Leflunomide) to 2mg. I hope to be off prednisolone in the next few months and eventually off the Leflunomide.
Oh that’s interesting. I don’t feel it’s helped me at all as I’ve not really made any progress in my tapering. I’ve only dropped a couple of mg over the year and even then it’s been hard at times because of the swelling and inflammation in my knee. My rheumatologist agrees the drugs I’m taking don’t appear to be having any impact on my knee or not enough impact but she suggests I stick with them just in case! I felt I wanted to give it a go without leflunomide for a while and see what happens. I also have regularly elevated liver functions so felt it would give my liver a rest! If I deteriorate I’ll know it was having some benefit. I’m still taking the hydroxychloroquine which has now been just over a year and again don’t feel it’s having much impact but thought dropping one at a time more prudent. Side effects of both these drugs have not been noticeable other than a more urgent need for the toilet!
Sorry to hear it hasn't been as effective for you, I certainly agree about that side effect , I've also have a reduced sense of taste and painful feet so hope I can stop taking it very soon though the attraction of stopping the steroids and alendronic acid at the moment outweighs the side effects. Good luck with reducing the steroids.
Hmm, bit of a quandary isn't it. I confess the idea scares me - especially since I have absolutely no problems with pred except being unable to reduce the dose so adding in potential adverse effects isn't appealing!!!
It is, when my rheumatologist suggested it a year ago I was wary of all the possible side effects but they certainly haven't been as bad as they could have been so I'm pleased I gave it a go
Is tingling (a feeling like ants are crawling across your skin) a sign of neuropathy? I have this around my right breast round to my shoulder blade, feels very odd and is there daily
I did mention it to my GP a while ago but he thought it was just one of these things! I’ve never remembered to mention it to my rheumatologist. Will see if it disappears once I’ve been off the leflunomide for a while.
Thanks for the detail PMRpro. If I do give it a go I’d hope it would stop the inflammation in my knee and therefore reduce the pain.
My knee is currently less swollen and the pain is more intermittent as opposed to constant but is there daily. I know you’re knee pain came and then disappeared for no apparent reason and others on here have had varying issues with knees. I’m rather hopeful mine may fade away but currently my option appears to be try MTX as recommended by my rheumatologist or put up with it! I’ve no follow up appointment yet and it’s likely to be months away when it does arrive so I’m waiting and seeing for a while. I just like to have information and an understanding of the drugs I may take.
I started on MTX 2 years ago, just after Christmas 2017, because my GCA flared twice after trying to get below 25 mg of pred per day. I haven't had any problems reducing since then. However last week I started such a bad cold and cough that I decided to skip my usual Friday night dose of MTX. As I'm still not completely free of symptoms, I'm not going to take my dose tonight either. At the same time for the last couple of days I've reduced my dose of pred from 6.5 mg to 6 mg and - so far- I've had no flare up of GCA or PMR symptoms. I'm seeing my rheumy on Wednesday and, if I still haven't had any obvious reaction to not taking the MTX, I'll try to discuss discontinuing it altogether.
I had to stop Methotrexate in August 2018 & it was November before l felt the full effects of stopping it. During September there were no issues at all then gradually during October l began to notice & by November it was very marked.
It can take up to 12weeks for the full benefits to take effect, its similar when stopped.
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