methotrexate

[Joseph14612]

Sunday will be my 40th week of Actemra and about 14 months of Prednisone....I was diagnosed both with PMR and GCA back around July 2022 and started on 60 mg prednisone....have been up and down but can't seem to stay below 20 mg prednisone without recurring headache and eye pain.

My rheummy suggested methotrexate and just started my first weekly dose of 10 mg today.

Those that are are methotrexate, when after first dose did you start weaning off pred ?

I am to continue with weekly Actemra as well....

[PMRCanada]

I started to taper around the 10 week mark after on-boarding MTX, but I started at a higher dose (25mg compared to your 10mg….still not sure why as most start on a lower dose and sometimes gradually increase). I’m now taking 15mg MTX.

I will say it’s seems odd that you are on all 3 at once (pred, Actemra and MTX). You mentioned you have been up and down with your pred dose. Going up and down as opposed to a slow steady taper is not ideal. Also it’s important to stay on your initial dose for long enough to mop up all the built up inflammation.

How long did you stay on 60mg of pred at the beginning? What was your tapering plan/experience? Did the Actemra help you lower your pred dose?

[Joseph14612 in reply to PMRCanada]

I was on 60 mg prednisone for about a month, then 50,40, 35,30,etc. I don’t know if Actemra made a lot of difference, but that’s just a guess. CRP and ESR are close to zero, but that’s expected from what I understand. Then rheummy was in a hurry to get me off prednisone. I have had side effects and I see his point, but I also told him I would prefer a wheelchair to permanently being blind.

I got as low as 12.5 prednisone but had severe headache and eye pain. Started working up to 15 mg and was better but still had symptoms, went to 17.5 and better still, but went all the way up to 25 before I got relief. Now back at 20mg. Doing alright and he is more understanding now. He suggested mtx, and I just did my first dose today. I’m also supposed to take 1 mg folic acid every day except the day of mtx.

He didn’t say when to start tapering prednisone again. I think he left it up to me.

[PMRpro Ambassador]

Methotrexate doesn't work immediately - it can take up to 3 months and for some people even longer.

I would be interested to know why your rheumy thinks using MTX as well will make a difference - although Actemra only works for one underlying cause of the inflammation that causes GCA inflammation, there are at least 2 others. In the clinical trials, half of patients continued to require some pred to manage the inflammation due to these other factors.

You may well need more than 1mg folic acid a day - some patients need up to 5mg per day (6x5mg) to reduce the adverse effects, esoecially the mouth ulcers.

[Sharitone]

I was on MTX for 8 months and wasn't able to reduce pred at all. It does work for some, and if you are on of the lucky ones, I think you just have to be guided by your symptoms.

[Grammy80]

It took me from August of twenty nineteen to February of 2023 to be able to get to a reasonable 15 mg of Pred and I was on Actemra all that time too. I had lost the sight in one eye back in 2019 and have been willing to ride the roller coaster, like you. 👍 I say this to you as an encouragement, you will get there. It is funny..... I told my rheumatologist the same thing youtoldyours, Just save my sight! Just this week I reduced to 2 milligrams. You will make it!💕

[Joseph14612 in reply to Grammy80]

Thank you Grammy… it’s only been a little over a year for me, hopefully it won’t be 4🙏

[Grammy80 in reply to Joseph14612]

I hope not Joseph💕

[Joseph14612 in reply to Grammy80]

Here I am complaining after 1 year, and you have been through so much and much longer....as well as others here like PMRpro.....and yet you encourage others at the same time...God bless you!🙏💗

[Grammy80 in reply to Joseph14612]

....and you will do the same! We all support each other💞