A giant cell arteritis suffer

[BM16]

A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.

[PMRpro Ambassador]

I imagine they are few and far between - the top GCA guru in the UK until recently when he retired from the NHS, has said repeatedly he doesn't believe MTX has much of a role to play in GCA since it doesn't work on the disease itself (unlike its use in inflammatory arthritis) and only works for a small proportion of patients with PMR. When it works it tends to work well but for by no means everyone. It may smooth out flares of sympoms during tapering but the GCA will last as long as it lasts and until it goes into remission you will need some pred. So your question about how long is akin to "how long is a piece of string".

[DorsetLady PMRGCAuk volunteer]

You don’t say anywhere how long you have had GCA -that might helps us give a more meaningful reply.

Plus if you keep flaring at the same level of Pred, that indicates that dose is what your GCA actually needs.

You are not reducing come what may to zero -with or without MTX-you are tapering to find the lowest dose of Pred that manages your disease on any one day -and if at moment it’s 4mg, then it’s 4mg.

Won’t always be, but no point pushing it -you’ll just flare -as you have discovered.

[Sharitone]

I was on that combination for 8 months, for GCA. I was then allowed to stop the MTX, because it hadn't been any help, and I couldn't get below 15mg. By the time I stopped I had also had TCZ for a few months, which has helped. I was give to understand that I had to give MTX a shot before being allowed to have TCZ.

[pog165g]

i have been on that combination for 2 years now and can not get any lower than 5mg of pred without it flaring up again.

[Bfp1]

hi

I was in both drugs at the same time. Wasn’t tolerating the methotrexate so was taken off that and instead did 6 months of cyclophosphamide and then transferred to mycophenilate. Still on that - probably forever and 4 mg of preds and unlikely to go further down. I have bad days often but that’s the deli think. Keeping gca at bay. Good luck and be patient and bold. Warmest wishes B

[Myfoe]

I started at 50mg of prednisone and have been stuck at 20mg of prednisone for 3 months I first tried methotrexate tablets but my stomach couldn’t tolerate them so I switched to 25mg methotrexate injections about 12 weeks ago it took weeks before it started to help basically it just smooths out my pain and stiffness highs and lows I am taking 19mg of prednisone this week so far so good before methotrexate I would have a big flare every time I tried to reduce…

[Zampalion]

I WAS ABLE TO COME OFF OF STEROIDS COMPLETELY AFTER 6YEARS PM, the MX WAS PRESCRIBED BY SPECIALIST FOR MY ARTHRITIS, Iam still taking 10mgs every Monday

[Marijo1951]

I've been taking pred since July 2017 and MTX since December 2017. I have an appointment with a rheumy in April, the first for well over a year. I'm hoping s/he will agree to me coming off the MTX, at least experimentally.

[Balletomane]

I have GCA, been on prednisolone since October 2016 when I started at 60mg, having lost sight in one eye due to unrecognised LVV symptoms. Couldn't get below 10mg without flares, then started methotrexate and was able to continue to reduce, veeery slowly. Am now on 4mg

[GML19]

I developed GCA in April 2021 and this responded well to steroids. To enable me to come off steroids, I was prescribed Methotrexate in October 2021. I tapered very slowly and I had my last steroid dose in December 2022. Still it is very early days. I must remain on Methotrexate until October 2023, but my dose has been cut from 12.5mg to 10mg to 7.5mg in two stages because of problems with my stomach. I found the side effects of Methotrexate horrendous, but surprisingly lessened by fasting one day/week. I tolerated its side effects because I needed to come off steroids because of multiple infections. Am I out of the woods? Cautiously I can only say ‘perhaps’. I thank this forum for helping me on my way and I send you all my very best wishes.