I'd love to hear from those of you who have experience with taking Methotrexate (MTX).
My Rheumatologist has prescribed MTX for me saying "we must get you off the pred." I took it for a while reluctantly, but my hair was falling out and I was feeling quite sick. My Rheumy insists that I continue taking it but gives very little explanation about how long I will be likely to take it and tells me the side effects are minimal. I am presently on 8mgs Pred. I have read up on it fairly extensively and it sounds pretty evil, but so does Pred actually. So I'm wondering and concerned about taking 2 strong immunosuppressants. I would love to hear what others think about this and how it has helped or hindered you.
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julianne3
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Eric Matteson is a top rheumy at the Mayo and is involved in drawing up guidelines for PMR. If he thinks PMR-level pred doses are not anything to panic about - I'll accept that.
Your rheumy may consider the side effects to be minimal - if it made me feel nauseated all the time I wouldn't consider that minimal - even PMR doesn't do THAT. Hair loss is debatable - there ARE always wigs but I'd prefer my own to hang around.
And above all - why do they keep claiming that taking mtx will get you off pred faster? It does NOT replace pred, if it did they would use it first line. It doesn't, there is no evidence at all, and they don't.
At best it may allow you to manage on a slightly lower dose. But in the long run it seems to make no significant difference to pred-related side effects:
This is from a renowned top PMR expert's group in Italy.
8mgs pred is a "physiological dose" - about the same amount of corticosteroid your body would make in the form of cortisol if you weren't on pred. The side effects are due to surplus corticosteroid - ergo, they must be minimal. The local Head of Medicine here is happy when his patients (not all PMR/GCA by any means) are at or below 8mg.
Is it PMR you have? How long have you had PMR/been on pred?
I apologize for the huge time lapse there has been since I asked about MTX. All sorts of things have been happening here including my mother-in-law's very rapid decline in health and subsequent passing which has occupied much time.
Thank you for the attached information which was very helpful, as was the input from the friends below. I was diagnosed with GCA/PMR in September 2016. As I explained above, I took MTX for a couple of months but felt unhappy about it with lots of hair loss etc. I have stopped taking it now and Im feeling better than I did.
They can't prescribe it first line because it takes about 6 weeks to kick in from the day you start on it, so because it is slow acting it also takes 6 weeks to get out of your system when you stop it. I missed my appointment with the Rheumy because of the funeral and so he doesn,t know I'm not taking it. Doesn't really matter does it, most people seem to manage their meds themselves anyway. I'm taking 7mgs of Pred now and seem to be ok except for some pain here and there when I first get up in the morning so all good (relatively speaking of course).
"They can't prescribe it first line because..." - no, not because it takes 6 weeks to kick in but because it simply does not work for GCA and PMR. Corticosteroids are the first line, second line and third line - except now there is tocilizumab which does seem to kick the disorder into touch so, at worst, a far lower dose of pred is effective in GCA. Officially, it hasn't been tried in PMR and the financial hurdles will be rather a problem.
mtx is an add-on - with no guaranteed additional effect with respect to GCA/PMR doses.
Yes that definitely appears to be the case. The Rheumatologists here in Australia seem to be pushing MTX though, everyone I know with an autoimmune disorder is on it. When i saw him at my last appointment, he had recently been to a conference and he told me about a new injection for GCA, do you know what that would be?
Tocilizumab, the drug I mentioned above. Sold under the brand name of Actemra. Use the search box at the top right of the page and you'll find a load of threads/posts about it. In the UK it costs about £12K per year just for the drug itself, then there are the other costs over and above that. In the US it is about $40K per year. It isn't yet clear how long it keeps things in control - i.e. will a shortish course bring the GCA into remission so you get to a low dose of pred and can discontinue the tcz or will you have to keep taking it ongoing. It's been approved in the USA and is being used in the UK on a case by case basis. They're using it off-label for PMR in the US - can't see it getting enthusiastic approval for that in the UK at the price!
Thank you so much PMRpro, that information is so helpful. Trying to get information from doctors is like pulling teeth sometimes, it would be good if that wasn't so.
Regarding Methotrexate, I took it for about 1yr. Had a really bad dose of shingles & gave up the Methotrexate on GP’s advice. Remain on steroids, 5mg per day, my maintenance dose after 6 yrs of PMG & GCA. Consultant is OK with this. Hope this helps. Best wishes.
I’m taking MTX and I’m on 12.5 mgs pred. I think PMRpro is right. I don’t think it makes much difference to pred reduction. The MTX just makes me very tired the day I take it. On the advice of a friend whose daughter takes it for Crones and who gets very nauseous after taking it, I started taking it last thing at night. I sleep through the effects and I’m fine the next day. I had a bit of hair loss at the start but it has settled down now.
Not sure if any of this helps but it’s another experience.
I'm on 25mg MTX weekly and apart from a little nausea on the day I seem to have no major side effects. I've been on it for 2yrs now - no hair loss - and I usually get a couple of hours kip not long after taking to get over it. My pred is currently tapered down to 6mg daily and my rheumy says the MTX is used as a "steroid sparing" drug in my case. Hope that helps.
After 6 months on MTX I truly thought I was dying. Hair falling out always felt hypoglycemic and ate to ease that and gained 60 lbs.
Once I stopped it within a month I was feeling so much better. Only good thing that came from it was my hair grew back in really thick and some curl.
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