Experience with Methotrexate?

[PMRinAVL]

Has anyone had experience with using Methotrexate for symptoms of PMR? I am on 10 mg of Prednisone, (which is not completely controlling symptoms and my Rheumatologist wants me to get off), and Hydroxychloroquine 400 mg (which does not seem to be effective) and now she wants me to start Methotrexate in addition. I am very scared of the side effects and wonder if it is worth trying.

[DorsetLady PMRGCAuk volunteer]

Plenty of info -

Make a start with this post from FAQs - and then any related posts -

healthunlocked.com/pmrgcauk...

[PMRinAVL in reply to DorsetLady]

thank you! I am totally new to this forum and just figuring out how to navigate and what's available

[DorsetLady PMRGCAuk volunteer in reply to PMRinAVL]

Good, have a play…looking through the FAQs it’s a good start.

The first half a dozen are temporary & Covid related, after that subjects in alphabetical order….

….you can’t break anything, so just go hither and thither and have a good browse …but always ask if you can’t find something.

[ignatz]

Almost snap. Meths seemed to have no benefit for me, ditto Hydroxy- neither spared me from gradually seizing up if below 10mg Pred. Good luck.

[PMRinAVL in reply to ignatz]

thank you!

[PMRpro Ambassador]

There is a vast amount of discussion - look at related posts.

Personally, while I think it is possibly always worth trying to see how you get on, I do not believe that there is any real evidence it works reliably in either PMR or GCA. My own experience was hrrible - my hair fell out in clumps within days and after 3 weeks the fatigue was overwhelming so I could barely function. I also had what are usually said to be steroid side effects but which I have not experienced with prednisone or prednislone, only with methyl prednisolone/Medrol. Overall I felt worse than I ever did with PMR and no pred. The constant hunger meant i had gained a kilo in 4 weeks and it took a long time to lose again.

That is not to say that a lot of people are able to take it without such side effects and some people with PMR have used it and been able to reduce their pred dose. MrsNails is one. However, very few ever manage to get off pred entirely so any doctor who tries to tell you that is on shaky ground.

Prof Dasgupta has said he has had good results with leflunomide (a couple of small scale pilot studies have been published) and some effect with methotrexate but that he doesn't think MTX is of any use in GCA while my own rheumatologist says that leflunomide has never shown much effect when he has used it but he has had patients who do well on methotrexate. You pays your money and you takes your choice. If it works - great. But if it doesn't and you feel worse - you can stop them immediately unlike pred.

[PMRinAVL in reply to PMRpro]

Thank you so much for that info. This is my first time on a forum and I don't have knowledge of other people's experiences. This is so valuable! I did not realize that it is unrealistic to ever get off of Prednisone, because the way my Rheumatologist talks about it it's the most important thing to get off of and as soon as possible!

[PMRpro Ambassador in reply to PMRinAVL]

No - it isn't unrealistic to expect to get off pred, probably over 90% of patients do eventually. What is unrealistic is to expect to do it in the sort of timescale many doctors expect. And their hurry often makes the journey for their patients uncomfortable. Pred cures nothing, it is a management strategy to allow a better, less painful, journey until the underlying cause of the symptoms we call PMR, most probably an autoimmune vasculitis that affects the blood flow to the muscles and other soft tissues and causes inflammation, decides to burn out and go into remission. That can be in as little as under a year but that is for a relatively quite small group,Looking at it as an overview it appears there may be 4, possibly 5, classes or types of PMR: a group that is able to get off pred in up to a couple of years, some less than a year, some more like 2 years; a group that needs pred for 4 or 5 years; a group that needs a low dose for more than that and a group that needs higher pred for longer or a lower dose indefinitely. But you won't findmany doctors who will admit that to you!

PMR lasts as long as it lasts - nothing you or he can do will speed up the process unless possibly using a biologic drug called tocilizumab but it isn't approved for PMR so only small numbers of patients, mostly in the USA get to try it. It is approved for GCA but only gets half of them off pred altogether - and half of those patients relapse within a couple of years. They take a lot less steroid in that time - but at quite high financial cost and the biologics are very heavy duty drugs with their own downsides. Only one class of them appears to work in PMR/GCA.

One study found the mean duration of pred management for PMR was just under 6 years, another claims a much shorter time. But I have been on PMRGCA forums for over 12 years and I would say the first study I mentioned is much more realistic than the second in terms of the duration of PMR and I have come across thousands of patientsin that time. I would say 4 to 5 years to get off pred is very common - but there are a lot of people who require a low dose of pred for much longer than that - and that is according to my rheumatologist who is a world name in the field. There is also a small group of us who have been on higher doses (often above 10mg) for years - with a history of PMR symptoms for well over 10 years and absolutely no sign of the usual suspects as alternatives such as an inflammatory arthritis.

There really does seem to be a version that relapses easily - patients manage to reduce their pred fairly well and then it all comes racing back. There is nothing that can predict which you will be so the trick is to start well and then taper the dose slowly to find the lowest dose that manages the symptoms. It is also called titration - a process used with other things though usually you start low and creep up the dose to find the lowest dose that works, That approach seems not to work with PMR and pred so you start high and taper down slowly, Unfortunately, many doctors won;t believe it and want to try everything available whether there is any evidence or not. Hydroxychloroquine is claimed in one publication to be a wonder approach - I have come across one patient it seems to work for. It is often used in lupus - so are these successes patients who were misdiagnosed? No way of knowing - and I think that is where the problem really arises,

[PMRinAVL in reply to PMRpro]

thank you so much for that wealth of information! I so appreciate you taking the time to answer in such detail.

[PMRpro Ambassador in reply to PMRinAVL]

It's all there in the FAQs somewhere but would take you a while to find

[ignatz in reply to PMRpro]

Brilliant summation. I do hope this is pinned permanently on this website; this healthunlocked community; and in every rheumatologists office/ surgery worldwide.

[Avadip12 in reply to PMRpro]

That was an interesting post. I have also had methotrexate, which effected my red blood cells. Then lefluamde which put my BP through the root 210 / 160 with dizziness. But what I was wondering in the facts and figures you gave us. How many people keep relapsing year after year like me without positive blood results. Making them suggest that I may now be having fibromyalgia. Thanks

[PMRpro Ambassador in reply to Avadip12]

No idea to be honest. But everyone I know who has both fibro and PMR says they are very different.

[Sharitone]

Doesn't seem to have done much for me in 8 months, and my hair also started falling out in clumps, so if that happens to you, make sure you get folic acid prescribed or increased. Apart from fatigue, which I had anyway, I had a couple of short bouts of gastroenteritis which could have been due to the MTX, but nothing else. I really hope it works for you!

[Maisie1958]

Hello, I’ve been on low dosages of Pred for almost seven years, diagnosed with PMR and now seronegative inflammatory arthritis. I was very resistant to starting MTX six months ago but I’m really glad I did - again on 1 or half mg of Pred daily and no aches or stiffness. Initially had some episodes of nausea and tender gums but increasing folic acid helped. Also took it with stodgy food and drank plenty of water on the day. Some hair loss which has now stopped. I’m actually feeling very well atm, no fatigue. Jury is out if it actually helps in pure PMR or GCA but if doesn’t suit you then at least you can stop taking it immediately. Worth a try? All good wishes.

[bakingD in reply to Maisie1958]

Hi Maisie 1958Just wondered how the doctors knew you had seronegative arthritis as opposed to PMR?

Are the aches and pains different?

[Maisie1958 in reply to bakingD]

Hi bakingD , bit of drawn out story but started in 2015 with classic PMR symptoms, responding really well to Pred but could never get off it. A few years ago developed achey wrists and ankles then last year got proper bilateral stiffness and pain in knees and briefly both hips, no response to paracetamol etc only quite big (for me) doses of Pred. Disinterested GP said wear and tear and to stop Pred completely- didn’t go well! Saw a lovely rheumatologist privately, lots of tests done but importantly actually took a detailed history and listened to me - bloods and scans not exciting, ESR only got to 27 when I could barely move - my usual is around 4. Transferred to her NHS list and started on MTX and pleasantly surprised. Only thing different I could say- hadn’t had proper joint pain or long lasting stiffness so equally in hips or knees initially( or wrist and ankle aches) . Xrays and scans didn’t show osteoarthritis- didn’t show any signs of rheumatoid erosions either fortunately. Had a weird few months of incredibly stiff hands and wrists about 25 years ago - l now presume my then young daughter had given me “parvo” after she got over “slapped cheek disease” The same GP also told me it was just wear and tear due to my age back then! I was 39! PS missed 2 doses of MTX around Covid booster and wrists started to ache again so quickly restarted.

I must admit I wasn’t convinced of the inflammatory arthritis diagnosis but felt I had to at least try MTX -which is appearing to work.

I have read your profile tonight,I hope things settle for you. Dr Hughes has a brilliant reputation, l considered him last Spring but a little far away with the Covid restrictions then. I did strike lucky with the rheumatologist I did see thankfully. Best wishes.

[Geordieland in reply to Maisie1958]

Hi Maisie 1958 ☺️ Just a quick question - how long did it take before the mtx started to make a difference ? Many thanks

[Maisie1958 in reply to Geordieland]

Morning Geordieland , hard to say, thought for a while it wasn’t doing much. I decided to miss a couple of doses around the time of my Covid booster - about 10/12 weeks in (didn’t clear it with the rheumatology dept) and certainly my ankles really started to ache pretty quickly with wrists joining in and thigh muscle stiffness. A few days after resuming MTX all was good again. I was amazed. I know it’s very early days - I might just be going through a good patch anyway.

[Geordieland in reply to Maisie1958]

Thanks that’s good to know - I’m 7 weeks in with MTX and just wondered how long it takes to feel a benefit 👍

[MrsNails in reply to Geordieland]

It takes up to 12weeks to be fully effective & it’s a gradual process until you suddenly ‘notice’ there is a difference……I started my taper after 1month & steadily tapered to 10mg & then from there l went down in 0.5mg drops to 7.5mg - from there however it’s another Story….

[Geordieland in reply to MrsNails]

Hi ! I’m on 5mgs of pred at the moment( diagnosed with PMR March 2020 started on 20mgs of pred ) But the rheumatologist put me on mtx for rheumatoid arthritis and has said to carry on with my 5mgs of pred for the first 12 weeks - I’m having regular blood tests and will see him again after 3 months 👍 I did have a bit of diarrhoea the first two weeks the day after taking mtx but that’s settled down now ( will take my 8th dose after dinner this evening ) I’m happy to carry on now that I know it can take a while to help all the aches and pains ☺️ as always - so good to have such a valuable bank of expertise to tap into - many thanks x

[MrsNails in reply to Geordieland]

Good Luck 🍀

[dancersize2]

Eighteen months after diagnosis with PMR I had been stuck on 6mg pred. for six months, Rheumy started me on MTX and that enabled me to reduce the pred to 2.5mg in a year. Three more years of very slow tapering and I'm finally off pred (fingers still crossed) and have reduced the MTX to 10mg a week Rheumy wants me to stay there for six months.Did have fatigue and some lightheadedness while on the 20mg a week. Taking folic acid tablets on the days I don't take MTX.

[bakingD]

Thanks so much for your detailed reply v kind!!hope all goes well for you too - I might be put on MTX who knows !!!

[Pawscat11]

I have recently tried Methotrexate as consultant wanted to reduce my pred but after 5 weeks of constant nausea and exhaustion we have decided its not for me at all trying both pills and injection. I still work so having 5 days a week unable to function was no use at all.I have upped the pred dose instead and feel so much better.

[Firesun]

Although I have no experience with methotrexate, your comment that being on '10 mg of prednisone has not controlled your symptoms' interested me. Even my initial dose of 15mg did not completely take away the pain. I tapered eventually to 6.5mg - but that was as far as I got. My rheumatologist recently switched me to methylprednisolone (this form of prednisone does not need to be metabolized by the liver first) the difference was amazing in terms of a decrease in pain. Pain free for the first time since diagnosed. Now I will begin to taper slowly again. Perhaps ask your doctor about methylprednisolone vs prednisone. Hang in there!

[PMRpro Ambassador in reply to Firesun]

On the other hand - I had exactly the opposite experience with methyl pred. Having had no problems at all with prednisolone in the UK, it wasn't available in this part of Italy and I was switched to methyl pred. I had awful adverse effects and needed a much higher dose to get any effect. When I was switched to prednisone I imediately was able to go to a lower dose and the adverse effects all faded away.

[PMRCanada]

I’m only on week 5 of MTX, but so far so good. Slight occasional light-headed feeling the first week, slight hair shedding, but overall no significant side effects. I started a 6-week taper this week which will hopefully take me down from 9mg to 8mg. Time will tell.

I do have monthly bloodwork and I’ve noted small changes, but nothing out of range (yet). One thing I did notice with my last results was that my CRP was the lowest it’s been throughout my PMR journey (0.6). Usually it’s 2-4. Assuming it’s the MTX lowering my inflammation (or wishful thinking).

While on pred and MTX I’ve plowed through some stressful times and been running around after my twin grandsons (aged 1.5 years), a couple times a week. I’ve also started deep water exercises again after 5 weeks of closure due to COVID. So definitely no fatigue (mind you I didn’t have it while just on pred).

For me, it was a very scary decision to onboard another medication…I had a lot of fear. But I also had some hope as I had been at 9mg of pred for over 2 years, and each time I tried to very slowly taper down to 8.5mg, I flared about halfway through the process.

I take comfort in knowing that I can stop the MTX at any time if need be, as I function quite well on just pred alone. My GP did mention that thus far I tolerate these medications well (few side effects, bloodwork good). Fingers crossed it continues. The new rheumy wants me off pred…very typical.

[Musiclady18]

Well this is my second run of trying the methotrexate. I was off Prednisone July 2021 and started Methotrexate in July 2021.......by October 2021 noticed a persistent cough, forgot to stop taking Methotrexate when feeling unwell, realized it stopped the Methotrexate and voila the cough stopped. Forgot to go back onto the Methotrexate but January 2022 cold weather and all I felt like I was back to the beginning of my PMR 3 years ago. So the Rheumy put me back on Prednisone 20 mg for 4 days, then 15 mgs for 4 days, 10 mgs for 4 days, 5 mgs for 4 days during that time I went back onto the Methotrexate 15 mgs for 2 weeks and now I am on 20 mgs of Methotrexate. Last week and all of last week I had a constant headache and difficulty with eye, Rheumy not sure what is happening, referred to Vascular Specialist but no appt yet????? I am still working, teaching online, trying to minimize screen time these days. Weekend feeling okay and today okay too! Not sure that helps but hope it does ! Good luck with your journey, you've found a great place with good people who are here to help!

[PMRinAVL]

Thanks to everyone for sharing your knowledge and experiences! Very much appreciated!