Methotrexate for GCA: Does anyone take methotrexate... - PMRGCAuk

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Methotrexate for GCA

bonnielm1 profile image
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Does anyone take methotrexate for GCA? I was on prednisone for 2 1/2 years. My new Dr. wanted me off of it so I took methotrexate along with the prednisone. I am off of the prednisone for 8 weeks now. I was going to start actemra but decided against it after reading it could cause holes in the stomach and intestine. I do have intestinal issues diverticulitis sometimes so I guess it scared me. So now I am on methotrexate .7 ml. The methotrexate pill was making me sick and losing my hair so I was changed to the injection .7 ml once a week with 4mg folic acid. Is .7ml a high dose? I am not sure if I did the right thing. Maybe I should have tried the actemra.

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bonnielm1
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PMRpro profile image
PMRproAmbassador

If you have got off the pred without a return of symptoms then it seems pointless at the moment to even think about Actemra. Its purpose is to speed up the reduction in the pred dose by making the disease go into remission more quickly. It would appear you are in remission. If, on the other hand, the GCA were to flare up again in the future then it might make sense to consider it. Methotrexate doesn't replace pred in GCA/PMR - although for some people it makes the reduction process more straightforward it seems. You will also taper off the methotrexate I assume.

And don't be misled - I doubt Actemra is any worse in terms of side effects than methotrexate. Neither of them are sweeties!

bonnielm1 profile image
bonnielm1 in reply toPMRpro

I am off of prednisone however the blood tests Friday were elevated so the dr. raised the methotrexate from .5ml to .7ml. and the folic acid from 2mg to 4mg. I don't know if the actemra would have been a better choice. I just wonder if the methotrexate is going to make my hair fall out more and if the increase will help the readings.

PMRpro profile image
PMRproAmbassador in reply tobonnielm1

Methotrexate will not manage the GCA inflammation on its own. If it did - they would use it. They don't. Some work has suggested that if it it started within the first month of treatment it may help lower the dose of pred but not when it is introduced later. I I had had a GCA diagnosis I wouldn't want to be reliant on mtx.

SheffieldJane profile image
SheffieldJane

What I would have wanted is to carry on reducing Pred at a pace that suited me. What dose are you on?

bonnielm1 profile image
bonnielm1 in reply toSheffieldJane

I am off of prednisone completely. I went on methotrexate in August while I was on prednisone. I was taking the pill form. That made me really sick. My doctor tried something else and put me back on methotrexate but the injection. I kept reducing the prednisone and have been off now since December. I have an injection of prednisone weekly but had to go from .5 to .7ml this past Friday.

Gaijin profile image
Gaijin in reply tobonnielm1

7mgs of mtx must be a very low dose. Most people with GCA take at least 15.. up to 25mgs..to me, it didn't do much except a whole lot of side effects including hair loss

bonnielm1 profile image
bonnielm1 in reply toGaijin

I am on .7 ML an injection which I think is about the same as taking 17.5mg in pill form. What did you take after it did not work? My hair is really falling out. My stomach aches, shoulders aches, but my head and eyes seem to be ok. Thank goodness. I do not want to lose my vision.

Gaijin profile image
Gaijin in reply tobonnielm1

I don't take anything but the prednisone for the time being. I felt no different while on mtx, gave it time to kick in, but saw no improvement with tapering so I thought it was defeating the purpose as it gave me terrible side effects. The hair grows back, but on it's own, it does nothing for PMR/ GCA, anyway.

I know it's hard to tell a doctor that you believe what is said on a forum instead of him, I get really annoyed when I realize I am being treated wrong, that I know better from what I learn on here.

cornishjan profile image
cornishjan

I am on Metoject for GCA, now identified as being in my chest arteries. I am on 25mg, and it does keep the inflammation down, even when off Pred, as I am at present. Unfortunately, when I last stopped the MTX, about two years ago, the inflammation shot up again, obviously the underlying condition was still there. As it is getting on for 5 1/2 years since I was first diagnosed I am hoping soon to reduce the Metoject to zero with no return of inflammation.

SheffieldJane profile image
SheffieldJane

I am not familiar with Metoject at all. I do wish you well. I find the chest almost more scary than the head. I went through some anxious weeks about that, but apparently it is ok.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

It is just a pre-prepared injection of methotrexate.

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