Methotrexate

[Gladys911]

Following unexpected inflammatory markers I was put back on 40 pred. now down to 20. Hospital appointment last week resulted in me also being prescribed methotrexate and the usual follow up tests. I have to say it seems quite scary but I do trust my rheumatologist. Do I take it for the whole time I am on pred? My main side effect so far is feeling dizzy, does this go away? Does it work? Sorry if this sounds disjointed ...

[DorsetLady PMRGCAuk volunteer]

It works for some, but not all…and it is does take a few months to know. It is used primarily as a steroid sparer for GCA & PMR ie.it should help you reduce Pred a bit quicker…whether it does or not seems to depend on user.

If it does help, or doesn’t suit you you can stop it… but it’s a case of try it and see.

I do wonder it is really necessary.

Most of us would say your flare was solely down to tapering much too quickly - 40mg to 2mg within a year is extremely rapid. No wonder you flared and raised inflammation markers totally expected to be honest

Personally I’d prefer to try tapering more slowly this time around without it… but that’s just my opinion.

[Gladys911 in reply to DorsetLady]

Many thanks DL - I'll stick with it for the time being unless I get major side effects.

[Moaningxcat]

I’m on 30 mg of prednisone and 15 mg weekly methotrexate for GCA. My inflammation markers have been good, but I am having difficulty getting below 30 mg of prednisone even with the methotrexate. I do feel a bit woozy but I’m not sure if that’s the prednisone or the methotrexate. I can’t really say if methotrexate is working for me or not. I’m just following rheumatologist instructions…sorry I can’t be more definitive. I’m having difficulty getting below 30 mg of prednisone.

[Gladys911 in reply to Moaningxcat]

Many thanks for this - it does help to know other people's experience. I hope you manage to make progress soon - GCA does drag us down, doesn't it?

[Moaningxcat in reply to Gladys911]

It certainly does! Keep us posted on how you are managing your taper.

[PMRpro Ambassador]

Now you have posted you will see a list of Related Posts which will have lots of discussion on them which you might find interesting.

It works brilliantly for a small cohort of patients - but I'd say that for a majority it either makes them unwell or does zilch. I was one of the ones it made ill - I lasted a month before I said no more. The fatigue was unbearable, couldn't put one foot in front of the other! My hair fell out in little clumps, I was ravenously hungry and gained weight (MTX can make ANY side effects of pred worse and in my case I had so-called pred effects I'd never had before.

The trouble is, you have to try it to find out which group you belong to. If it works and the side effects are bearable - great. If not - just say not. You can just stop it, no tapering required.

[Gladys911 in reply to PMRpro]

Yes - I guess this is one of the (many) problems, we each react differently. My concern was that the inflammation markers indicate there may be vasculitis elsewhere which seems to be why I have been put on MTX. Just hoping I don't have to be on it for too long. Again thank you for your advice.

[PMRpro Ambassador in reply to Gladys911]

Even if there is vasculitis elsewhere, the pred will act on it. No guarantee the MTX will. And there ARE imaging options that would show where the inflammation is.

[Gladys911 in reply to PMRpro]

I'm waiting for a hospital appointment for xrays so that may help.

[PMRpro Ambassador in reply to Gladys911]

Plain x-rays won't diagnose inflammation - they might show structural damage to joints. Inflammation needs MRI or PET-CT - not sure off the top of my head if anything else does.

[Gladys911 in reply to PMRpro]

Sorry to take up so much time - I am not sure what they have in mind but there was some reference to my heart being affected so I imagine it isn't just xrays. I guess we all come out of these appointments wishing we'd asked more questions!

[PMRpro Ambassador in reply to Gladys911]

Never apologise - it always helps to talk about it with someone who has some idea of what it is all about. I hope they find an answer.

[DorsetLady PMRGCAuk volunteer in reply to Gladys911]

If you’ve gone too low on Pred then it’s not controlling the inflammation caused by the underlying disease (in your case GCA). That’s all Pred does, taking it doesn’t mean your GCA has gone away, just that the inflammation is under control.

Raised markers don’t necessary mean you have something else -but may prove what you do have (GCA) isn’t being controlled.

[Blearyeyed in reply to Gladys911]

MTX is used as a steroid sparer ( or way to manage the condition on lower dosage) in many auto inflammatory conditions , including eczema, rheumatoid arthritis and psoriasis. It is an immunosuppressant so will work anywhere in the body that is affected by inflammation by dampening down the auto inflammatory response and regulating the reaction of immune cells. So , wherever you require inflammatory control in the body if you are finding it hard to reduce inflammation with steroids and self care MTX should be able to help manage the inflammation.

You do need to taper up though , in some cases over a number of months whilst not tapering the steroids as you test out the MTX, or you are more likely to have negative side effects.

You definitely need to take the folic acid and B12 would probably be advisable too because often the side effects , which can be severe, are those relating to folic acid or B vitamin insufficiency ( personally, I'd say if they are considering putting people on MTX they shouldn't rush as they do and allow patients are couple of weeks on the supplements and a diet rich in B vitamins to give them a better chance of reducing the side effects they could have on MTX).

I've not taken it myself but know many people of various ages whom take it, long term , for everything from eczema to psoriasis. They mostly seem to have no issue with it for years at a time , some take maximum doses for their conditions between 25-30mg. Some get injections instead of oral tablets. All of them began MTX because they were not controlling their conditions with higher doses of steroids , or because their liver markers on steroids or other medications had begun to be affected by the high doses they needed.

One person I know didn't respond well to MTX but they were one of the people whom had also been having liver function issues on other medications as well.

I wonder , after looking into it , whether it's the initial dose choice and the speed that they seem to increase dosage with PMR/ GCA ( whilst also getting people to taper the steroids quickly at the same time ) which could be the cause of more side effects in people with PMR rather than the medication on its own.

With Eczema, psoriasis, OA and RA the starting dose can be 5-7.5mg for weeks slowly rising up to 10 mg - 30 mg it can take months and monitoring. But when I look at the initial dose for PMR most seemed to jump right in at 10-15 mg. It's not surprising that the body is giving a scream in response in many cases.

Good luck with it , just take it slow and make sure you pace your activity each day carefully and don't have a busy month whilst you start. As neither the steroids or MTX will have chance to do the job if you put your body under more stress whilst it's still trying to cope with the inflammation.

[Gladys911 in reply to Blearyeyed]

Thank you so much for this - it is very clear and helpful. I think it explains why I have been put on it, as they do not know where the inflammation emanates from. The advice on vitamin B is good.

[Noni71]

I was put on Methotrexate after it was discovered by PET CT scan that I had LVV in my aorta and other arteries in my chest. I couldn’t tolerate the drug as it played havoc with my liver function. Tried for months by lowering the dose but to no avail. I was also taking Tocilizumab and that was fine. My year of Tocilizumab has now finished and I have started on Leflunomide. So far so good! I did feel better when I stopped the Methotrexate but everyone is different.

[Bothan]

Have a new Rheumatologist and had a flare up. Was back on 30 mg of pred, down to 10 now. She started on methotrexate last week. Like you feel dizzy after taking it. Was told it could take 3 months to make a difference. I have much more confidence in this person so 🤞

[PMRpro Ambassador in reply to Bothan]

"Was told it could take 3 months to make a difference" - if it ever does. That must also be borne in mind.

I'm sure our flare protocol and accepting the dose you are at for a while is just as good!!!

[GCAsurprise]

I was put on Prednisone 40 mg daily and Methotrexate 20 mg 1/wk at the same time and have been taking both since Feb 2024 for GCA. I am currently tapering Prednisone 1mg/month and am at 4 mg. I am feeling okay on the combination. I have not had any significant reaction to the oral dose of Methotrexate after taking it. Good luck with your journey.

[Gladys911 in reply to GCAsurprise]

And you - good to know it isn't horrible for everybody. Just have to hope I'm the same!

[Spittal9]

Hi there, I’ve been on 15mg methotrexate for nearly two years now, in an attempt by my Rheumatologist to help me reduce my prednisolone . I don’t think it’s made any difference to me at all. I also have had no side effects from it. I was on 14 mg when I saw him. I had previously managed to get down to 8mg without it and I got stuck there until I had a flare and increased my dose. I’m back down at 8mg again but I reckon I could have got there as I had done before without the methotrexate.

I suggested to the Rheumatologist, after just over a year, that I stop it as I didn’t think it made a difference. He said he wanted me to continue with it. I get regular blood tests to check all’s okay with me taking it, so far so good.