Struggling on Methotrexate

[Kailacobweb]

Having had GCA for 8 months down to 17.5 prednisolene but I had a flare up and went up to 40 mg but I was still struggling. Finally saw a rheumatologist who put me on methotrexate. Now reduced to 30 mg prednisolone but still have GCA symptoms and feel washed out. What experience's do others have on methotrexate? How long before it helps?

[Yellowbluebell]

Hi, sorry you are having problems. Our expert on Methotrexate, mrsnails will no doubt be along in the morning to help you. In the meantime you can search for her and look at her posts on the subject. Others will also be able to give you advice as wellI. I have pmr so cant really help much with gca. YBB

[GOOD_GRIEF]

MTX takes a few weeks to a few months to be effective. Hang in there.

[Rimmy]

I am wondering if this yo-yoing on inconsistent doses of Prednisone has helped you. You need enough Pred in the beginning to control the inflammation and if you read most posts regarding tapering Pred for GCA here this must be taken slowly with no return of symptoms of GCA at each step. Methotrexate is I realise used to limit the amount of Pred taken over long periods BUT 8 months is not exactly 'long' given most people have PMR & or GCA for several years and your tapering sounds too 'fast' to me on that basis. But I think you need to be certain that you are taking enough Pred to manage your level of GCA inflammation before doing anything else ....

[Willow33]

Hi, I have the exact same problem was diagnosed with Gca in October 2019, got down to 20mg pred then had a flare up which is when they put me back up to 40mg and on methotrexate, which was a month ago. Saw the rheumatologist this week and has lowered pred to 30mg for the next month. But still have symptoms and feel like rubbish. I know this doesn’t answer your question. But was just letting you know your not alone.

[Suet3942]

I’m on mx and it took about 8 weeks to kick in properly. I have just reduced to 7.5mg pred and keeping my fingers well and truly crossed. Only reduce by 0.5 mg per month though.

[PMRpro Ambassador]

I don't know there is a great deal of evidence it makes any difference in GCA. It certainly doesn't replace pred even in PMR, it MAY allow you to manage on a lower dose of pred although it is suggested in the study that it takes a year to see a significant difference in dose. The GCA experts also suggest it is most effective when started within the first month.

But if you have symptoms - you are NOT on enough pred whatever else you are on. Even Actemra does not guarantee you will get of pred entirely - for 50% of patients you may only get a significant lowering of dose and not to zero.

[rocketman42 in reply to PMRpro]

If one is able to reduce their pred. by 50% while on Actemra, must you stay on the Actemra in order to maintain that lower dose ?

[PMRpro Ambassador in reply to rocketman42]

Not sure - the long term studies are still ongoing to see how long remission lasts. I don't really know how the remission works - it stops the enzyme pathway for IL-6 I presume but I don't quite get how it works long term after you stop the Actemra. But you would think that if half of the production was got into remission, then the lower pred dose would be maintained too?????

However - the 50% figure is the proportion of patients it works for, not that they get to half the dose of pred compared to before.

[rocketman42 in reply to PMRpro]

Thanks....I misread the 50% details in your original post.

[Kailacobweb in reply to PMRpro]

If what you say is correct, why does my rheumatologist say, despite my symptoms, that I need to taper Pred. By 10mg every two weeks. I am, according to him, supposed to go down to 20 mg this Thursday! Very confused

[PMRpro Ambassador in reply to Kailacobweb]

Because he is a member of the "there is nothing worse than pred" persuasion. And he has obviously not read all the research properly and really thought it through. He has heard that methotrexate can be used as a steroid sparer and assumes it works the same for all diseases and all patients. It doesn't. Above all it doesn't replace pred - if it did they would be telling doctors to use it and not pred. They don't.

There are varying mechanisms leading to the symptoms we call PMR or GCA - there are at least 3 for GCA that have been identified. It may require more than one drug to successfully combat it - even pred isn't perfect, even Actemra/tocilizumab isn't perfect, but they reduce the effects of the disease activity enough to prevent loss of vision. Anyone who relies on a single other drug besides pred to reduce the pred dose without taking close note of the patient and their symptoms is being irresponsible.