methotrexate

[Netball12345]

Hi there has anyone tried methotrexate for pmr I have had 4 fare ups in the last 14 months on prednisone as they’re clearly not working for me. My rheumatologist has decided to try methotrexate has anyone else tried it

[DorsetLady PMRGCAuk volunteer]

Now you have asked the question there are plenty of related posts - and a whole lot more in the FAQs-

healthunlocked.com/pmrgcauk...

It seems to be a bit of a marmite drug - for some it works, and works well… but for others it doesn’t. Really the only way is to try- and see….

But I would ask why you have flared 4 times… All at the same dose? Too fast a taper? Trying to do too much? Other health issues making it more difficult?

[Netball12345 in reply to DorsetLady]

Thanks for quick reply I was first put on 15mg which did help with my symptoms after a few days I stayed on that for 4weeks then went down to 12.5 then to 10 that’s when I had a flare up they then put me on 20mg then once again when I got down to 10 another flare up and that’s hiw it went on. The prednisone has made me put loads of weight on which has made me very depressed so I refuse to up the dose again. This is why I’ve agreed to try methotrexate.

[DorsetLady PMRGCAuk volunteer in reply to Netball12345]

Seems as if 10mg is YOUR dose for now - doesn’t mean it will always be.. just for now.

But a much slower tapering programme- say 0.5mg a time and using one of these - may help -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

As for weight, a really good way to lose it is to cut carbs drastically.

Hope to MTX helps….

[piglette]

There are quite a few people on this board who take methotrexate. It works for some and not for others, however it is not a substitute for steroids, but it can help with the reduction of the steroids though, but not always. When you say steroids are not working for you are you saying they have not relieved the pain at all or they do relieve the pain and then you get a flare? If the latter are you reducing too fast?

[Netball12345 in reply to piglette]

The steroids do help me until I get down to 10mg then all my symptoms return I’m not tapering to fast I’m doing what my rheumatologist has told me to do. I honestly don’t think they work for me

[DorsetLady PMRGCAuk volunteer in reply to Netball12345]

… I’m not tapering to fast I’m doing what my rheumatologist has told me to do

Not strictly true….as we know from many on here. …

[piglette in reply to Netball12345]

My rheumatologist told me to reduce to fast and I was in agony. I dumped the rheumatologist in the end. How fast are you reducing?

[EngineerMatthew in reply to Netball12345]

You sound like me except weight gain. I just hurt all the time off prednisone or on less than 10mg. Methyl prednisone, all pain practically goes away but Rheumy thinks I also have Rheumatoid arthritis. I am 59 year old male and had PMR for three years. I figure I got maybe 3yrs left

Grandpa at my age had the same shuffle walk I have for maybe seven years, last three he suffered extreme headaches and died of brain aneurism at age 63. He was the grouchiest person I ever knew. As a child I was scared of him. Happy he lived 1200 miles away and rarely ever had to visit him. He never went to doctors and frankly I am getting to that point

[Ann1A in reply to Netball12345]

10mg was my limit too, below that the problems that came were apparently because i developed adrenal insufficiency, although it 'should' not happen till lower, around 7.5. but the rheumy eventually decided that was the problem.

[Bringonthemusic]

Hello, I was given Methotrexate to help with the steroid reduction. Sadly, it didn't work for me. I couldn't tolerate the drug. I agree it helps some people and not others. In my case it took me a while to work out that it was making me worse and not better. I suffered a severe allergic reaction to it.

The only way to find out is to try it and see.

[Netball12345 in reply to Bringonthemusic]

Thankyou for your reply

[SnazzyD]

That reduction plan sounds quite quick so perhaps the flares were not so much that the Pred wasn’t working but more that you weren’t allowed to stay on the dose you needed at that time. This seems to be a fairly common pattern before Pred is said to be not working. Your autoimmune activity will carry on regardless of the Pred which is just saving you from the inflammation that would otherwise be running riot. I’m just saying this just in case the MTX isn’t the answer for you.

Regards weight gain, did you cut carbs quite heavily from your diet? This is usually a necessity to keep blood sugars and weight down, when on Pred because of the way it alters metabolism.

Mood can also be affected by the dose going down too fast (withdrawal) or yo-yo’ing if the body isn’t able to settle for long enough.

[PMRpro Ambassador]

"I have had 4 fare ups in the last 14 months on prednisone as they’re clearly not working for me"

That isn't quite the reality. When you start on pred it is at a higher dose than you will need longterm. Then you taper the dose slowly to find the lowest effective dose - not necessarily to zero. How you tapered was perhaps OK the first time - but when you flared up at 10mg that was your body telling you that you had arrived at your destination. FOR NOW - it doesn't mean you won't get lower, just not yet. Pred CURES nothing, it is a management approach and like all management approaches it must be applied correctly for the conditions applicable. If it relieved your symptoms at the start - it worked for you, It is very rare it doesn't work in PMR but it then must be used correctly for you.

You ARE tapering too fast for YOU - not your fault but your rheumy obviously doesn't really understand the disease process. This isn't a one-size-fits-all disorder and getting to 10mg and then below can be tricky. The same applies to methotrexate - for the small cohort of patients that it works for, it can be brilliant. But it doesn't work for everybody, it certainly is rarely a replacement for pred and it comes with its own set of sometimes very unpleasant adverse effects. All MTX did for me was emphasise adverse effects that are usually blamed on pred. I was permanently hungry and gained 1kg in a month which took ages to get rid of - a problem I'd not really had on pred alone. I had gained weight over a period of 5 years with untreated PMR as I was inactive and when I did start pred that weight rearranged itself to the typical places but I didn't gain more. I DID gain weight in the short time I was on methyl prednisolone as well as developing some other horrid side effects but when I was switched back to prednisone and went on a low carb diet I lost 35lbs over a period of 18 months. If only I had known how important carbs are when on pred sooner!

You have to try MTX to know if you are someone it works for - but it is no magic solution, it has its own problems and it takes several months to see if it is going to work for you.

But if you hate the weight aspect so much - cut your carbs drastically, Especially processed carbs, added sugar and rice, pasta and other such carbs. Limit fruit and root veg and stick to protein, fat and above ground veggies and berries. This website is very useful for knowing what to avoid and what to go for:

dietdoctor.com/low-carb

You don't need to join anything, pay anything, learn the principles and you can adapt your meal planning. We can't tell you how much to cut carbs, everyone is different and some get away with just cutting processed foods and smaller portions of carb food, others have to be practically keto. Don't try to aim for keto with testing - pred causes the liver to release random spikes of blood sugar which triggers insulin without a meal to follow it up so the insulin stores the left-over glucose as fat and it is next to impossible to get into ketosis as a result. You can't influence that, all you can do is remove the carbs in your diet you CAN control. But we promise - it does work. Weight loss may be slow but it will work if you are honest about what you eat.

[ncfaaeos in reply to PMRpro]

I'd just like to add to PMRpro's comments about the effect of cutting the carbs drastically to curb weight gain from Prednisone that it doing so has really worked for me. I can only recommend trying it.

[potterylady in reply to PMRpro]

PMRpro, thanks for the great reminder and info about diet. I was doing good, then have slipped up recently. Got to get back on the train! Good insights into Methotrexate too, as my doctor wants me to try it too. I'd really rather not!

[Charlie1boy]

For what it’s worth, I got down to 11.5mg after six months of starting pred for pmr. Then, it was a further six months to get to 9mg.

For many there are distinct sticking points in the tapering process, and around 10mg is definitely one of them. To be honest, it doesn’t really matter too much what the rheumatologist might say, because pmr has a mind of its own, and that can be different for all of us. There is no “ one size fits all”.

I think you’ve got good advice from here already. If you can, you just need to be very patient, and not hurry the taper.

I wish you good luck.

[PMRrunner]

I have been on Methotrexate for a couple of years as a steroid sparer. I think it has helped but it's not a magic bullet, I have few problems taking 10mg weekly but had issues(nausea, tiredness) taking 15mg. I still have to taper very slowly, I'm currently on 3mg having tapered over the past 8 weeks from 3.5mg.

[Myfoe]

I take 10mg prednisone & give myself 20mg methotrexate injections once a week 25mg caused to many side effects for several days after injection methotrexate really helped after4- 5 months I actually got into remission for a few weeks but major stress at work and reducing prednisone to quickly I had a big flare now methotrexate doesn’t seem to help anymore so frustrating just started Kevzara I have high hopes for it… Hang in there below 10mg prednisone is where things can go south for me I suspect for you also

[Ozziedays]

Hello, I’m one of the ones it seems to have helped.

I started on 25mg pred and had two flares at around the 6mg mark. I can’t remember exactly but I think my tapering had been 1mg per 3 weeks. Both times we increased pred by a couple of mg and slowed the taper (to 0.5mg per 3 weeks, then per 4 weeks), and the second time we added in MTX.

I started on 20mg MTX weekly. I had no more flares and got to zero pred on a 0.5mg per 4 weeks taper. About 4 months after reaching zero pred we dropped the MTX to 15mg weekly, and about 5 months later to 10mg which is where I am now. Going forward if all is well then my rheumatologist anticipates me going down to 5mg then zero next year.

I haven’t noticed any side effects from MTX, I’m feeling better than I have done in over 3 years, and keeping my fingers crossed! Hope this is of help and best wishes in your journey.

[KASHMIRI1]

I take it and it's been ok for me. I take half my dose I the morning and half twelve hours later. Also could acid two days before.

[Allotmental]

…and yes, I am also one of the people who it seems to work for. I started on 15mg weekly injections and this was upped to 20mg. I’ve got down to 2.5mg of pred in two and a half years without any major issues.

My advice with the MTX ( if you are going to have injections) is a) do the jab in the evening - that way you sleep through some of the nausea b) take folic acid - it really made a difference for me c) accept you’re going to feel a bit s**t the day after the injection and give yourself time to rest and find something to focus on.

Good luck - I hope it works for you

[Bandit01]

Hi. I have been on Methotrexate now for 18 months. For me they have worked really well. Took nearly three months to fully work but since then Jo issues at all. Started on 20mg increased to 25mg and now back to 20mg and all good.I guess I am one of the lucky ones but I get no side effects at all.

[Gimme]

Sorry I can't help on the methotrexate. What pmrpro says about tapering and being on the right dose for you in her first paragraph reminds me of something my doctor said to me. She said that I may want to stop taking pred, but that my body might have other ideas. I got stuck at 5mg. At 6mg, I am almost totally symptom free, 5mg is just about bearable, 4.5 mg is not good. Although, I can cope with 5mg, I know in my heart of hearts, 6mg is the dose that I need to keep my symptoms at bay for the time being. And that is what my doctor was getting at.

From what you say, it doesn't necessarily mean that the pred is not working for your PMR, just that you haven't found the dose that is right for you to control the level of inflammation that you have and you do seem to have yo-yo-ed a bit. The grumpy rheumatologist went mad at me when he thought I was doing that. I wasn't, actually. Don't forget as well that as you reduce the dose, not only may your PMR symptoms re-emerge, but the symptoms of any other condition that is masked by the pred could also become unmasked. That may or may not be the case for you, but I am pretty sure that is happening for me, as I do have some osteoarthritis.

[Bluesew]

I’ve also found methotrexate helpful. I took 10mg for two years and have managed to reduce to zero pred a month ago. I am now on 7.5 mtx and will reduce by 2.5 mg every two months. Fingers crossed that I am in remission now. Only side effect was tiredness the following day. Drinking plenty of water helps.

[Ann1A]

Hi, I am on MTX and have no idea if it's helping or not. I have no bad sude effectsc from taking it, but it certainly hasn't made steroid reduction any easier, even on a slow taper. I just could not get below 11mg. But as the Rheumatologist said, you don't know, you might have been even worse without it.The Rheumy has helped by putting me onto a different taper regime, which for me is working.... I take a quarter of a 1mg tablet less than my 'normal' dose on alternate days . So currently 10 10.25 10 10.25 10 and so on, for a month, then drop another .25 and repeat alternation. So next I will be 10 10 10 daily for a month, then 10 9.75 10 9.75

I usually feel OK for a week on this, then have increasingly bad fatigue for two weeks, after which I return to normal functioning fairly quickly. Before, on slow and v slow taper, I got worse and stayed there for two or three months, or until I increased the dose, and then returned to the last dose which had worked. So I got nowhere.

Good luck with MTX, think it's worth trying.

[Seablue22]

I was on Methotrexate for six weeks and in that time it caused liver damage. I was told to stop it with immediate effect. It works for some but not for me.

[WaltzG]

I am on MTX as a substitute for steriods cos can't tolerate them. Working for me though always have an unpleasant though tolerable day after take them. Wish you luck

[Frewen1]

I was on methotrexate for 2years for GCA -unlike others, I wasn’t aware of any particular difficulties, or rather I wouldn’t have known how to identify it in the mix of all the weird feelings of being on pred and having GCA. It was stopped when I had a year’s Tocilizumab. I can’t honestly say I recognised any particular reaction, but as I say it wasn’t prescribed for PMR.

[scottygirl73]

Hi i had awful problems on this,had to stop.Now on Actemra with no problems.But what is ok for 1 might not be ok for others,trial and error.Good luck.x

[Addihudson]

I have been on 15mg methotrexate once a week for almost 6 years with zero issues whatsoever. Of course my blood levels are checked every 4 months just to make sure all is good.

[doubtfully]

It worked for me but my blood didnt like it and I was only on it for q very short time. it did help me reduce bred. Good luck, all you can do is try and hope!

[Blearyeyed]

If the steroids do work at doses of 10 mg or higher they are working.It is just that at your current stage of PMR you are still needing higher doses for controlling your symptoms and you are tapering too fast. Steroids are not a "Cure" for PMR they are just the treatment that helps you to manage it.

Rheumatologists may follow a set of common guidelines but PMR doesn't have this timetable to read and even if it did it would ignore it.

MTX ,as others have said , helps some people a great deal and doesn't work for others. It is a steroid sparer, it doesn't just help you to reduce steroids more easily but it helps with the inflammation from another pathway helping to control non PMR pain that might also be present as well as helping to moderate other side effects and symptoms. It is worth giving this a trial. You will have some additional side effects for a few weeks , but if these are not from an allergy or intolerance, or very severe,you may need to try MTX for a couple of months before you get the benefits and it can also have side effects like weight gain.

One thing I would ask is , what are you also doing as Self Care?

When we have these chronic health conditions, like PMR , we need to make various changes in our activity and pace our life much slower than before to reduce the risk of causing more flares and inflammation which doing too much while we are being treated triggers.

Often , even if we think we have slowed down , and are quite frustrated about not being able to follow our " Old Normal", it may not be enough to prevent increasing flares while PMR is still active .

The steroids only treat the inflammation not the condition itself , so we have to find a " New Normal" and pace ourselves far more to reduce the additional Stress and Inflammation daily life causes.

Just about all of us on the forum have fallen into the trap of not accepting the need to change our daily activity, and we've all had trial and error finding the right balance of rest and activity , and which physical activities to avoid to reduce flares and give our body chance to cope with PMR.

The steroids don't work on their own , we have to work with them.

Acceptance of this is key to improving your recovery and ability to cope with PMR or GCA while the condition is still active.

Diet, and reducing sugar , artificial sweetener and simple "white"carbohydrates, and only eating moderate amounts of complex carbohydrates can help with the weight gain and fat distribution that occurs on steroids. You won't lose all the weight you have gained but you should be able to lose a lot of it and reduce the chance if putting on more weight.

It's also really important to keep well hydrated and have a good variety of foods high in vitamins and minerals , particularly B12 and Folates, because these can be harder to absorb on medications and also have an affect on your insulin balance and weight gain, pain and Fatigue among other things.

Hope MTX works for you and that the tips you've received in your replies will help you find the way that works for you to cope with PMR, take care , Bee

[Musiclady18]

I have been successfully on Methotrexate since February of 2020 and it seems to have stabilized my PMR. As many of the others have said Methotrexate is one of those meds that work for some and not for others. I think you have to try if that's what the rheumy suggests?

[Bramble2000]

yes, didn’t work and loads of side effects