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Myositis Support Group

1st flare up. Rheumatologist put me on methotrexate

#1

Had my first signs of dermomyositis/polymyositis in July 2015. By the end of august was on 40 mm of prednisone. Dec was down to 5. Around Christmas pain and muscle weakness got worse fast. Rheumatologist has now put me back on 40 mm of prednisone and .5 mil of methotrexate. Has anyone used this drug and what was your experience.

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#2

I’ve been on Methtrexate for about 2 years now, injectable and now pills. Depending on the dose I can get pretty nauseous. I take 10ml a week and that affects me the next day. If I take 3 pills instead of 4, it seems to help side effects, but of course I have to take the prescribed dose :slight_smile:

It seems like your doc weened you down from prednisone very quick…I think it’s usually a lot slower.

I wish you luck!

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#3

I had a lot of success using MTX for my Polymyositis! I was diagnosed in 1998, and had a remission a few years later due in part to MTX. I started off with injections, but later was able to use low dose oral pills. It did take several months to become effective. Although I later had to discontinue it because my liver function tests were slightly increased, I still consider it a wonder drug. I had very occasional nausea when I first started, but on the whole I found it remarkably side effect free. Good luck!

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#4

Thanks for the reply. Why did you go to pills, Dr said pills makes nauseous more severe. Are you still on prednisone, too? Hind sight I think I went down too fast, too. Live and learn. All my levels were normal for about 3 months, they went down fast but then they came back fast. I guess it takes time to find how I react to this disease.

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#5

Thanks 98er I hope to get off prednisone as soon as I can but now I am very cautious. Glad to hear the tnx worked for you.

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#6

I have been on MTX for two years now. I take 25mg by injection weekly (that is the equivalent of 10 pills). I tolerate it very well. Might be a little tired the day after my injections but all in all I do fine with it. I have been able to get off of the prednisone completely. I will take MTX all day long if it will keep me off the dreaded Prednisone. I was on 60mg daily...horrible stuff, now I have osteoporosis from the prednisone :-(

The MTX is a good drug and relatively safe as far as those type of meds go.

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#7

I know you weren't asking me about pills, but I'll interject anyway, only because my doc said different which makes me wonder! :-)

I was initially on pills but would vomit them up after getting nausea....then he switched me to injections which seemed to make the nausea worse (He said it does). So now I'm on a lower, more tolerable dose of pills.

I wonder if it's different for everybody, or if my doc was just talking out of his.....

Have a good day, glad to see replies!!!

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#8

I got super sick taking all 10 pills at once, but after developing [essentially] a phobia of giving myself the injection, I now split the pills in 1/2 - taking 5 before bedtime and the other 5 in the morning - works perfectly!

M

Nichole Smith said:

I know you weren't asking me about pills, but I'll interject anyway, only because my doc said different which makes me wonder! :-)

I was initially on pills but would vomit them up after getting nausea....then he switched me to injections which seemed to make the nausea worse (He said it does). So now I'm on a lower, more tolerable dose of pills.

I wonder if it's different for everybody, or if my doc was just talking out of his.....

Have a good day, glad to see replies!!!

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#9

I went on pills because we were going on a long trip. I knew I wouldn't be able to get injections, and in those days they did not have the self injector method. And no, I'm off all myositis drugs at the moment. I'm hoping I stay in remission. Don't let anyone ever tell you that once on prednisone you can't get off! I tapered down very slowly over months, ending at 1mg daily and finally was able to get off. I have now been off since October.

Talkamotta said:

Thanks for the reply. Why did you go to pills, Dr said pills makes nauseous more severe. Are you still on prednisone, too? Hind sight I think I went down too fast, too. Live and learn. All my levels were normal for about 3 months, they went down fast but then they came back fast. I guess it takes time to find how I react to this disease.

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#10

Yes I am on methotrexate. I makes me vomit and my hair has fallen out, but it works. I wasn't walking and couldn't even roll over in bed. I have been on it a bit over a year and now I have returned to work. and my hair is growing back. I am on 15mg weekly and I am on prednisone still. I have always been on the pill form. I also get 8g of IVIG every 3-4 weeks. Don't forget to wear your face mask and not go were large crowds

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#11

I have been on MTX since 2003, my doc says it is the reason I have done well with Polymyositis Just be careful with immune system, like colds! My chest cold turned into pneumonia!

Hope this helps!

Steve

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#12

Hello! :) I was on the oral form of methotrexate for the past several months, but it was not agreeing with my stomach at all and caused me to lose a ton of weight and it was not staying in my system long enough to be effective so about three weeks ago I started my self injections of the drugs. I will be happy to let you know the further results with this! How are you feeling so far?

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#13

My last dr. appt my counts went down. Not normal range but closer. I'm still taking 30m prednisone down from 40, but dr will be decreasing to 20 next visit. Still to early to see the effects of methotrexate but if it gets me off prednisone will be happy. I'm trying to work on muscles a little. I'm so weak and hurt all the time. I don't know how some of you deal with this. You are very strong people.

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#14

Hello everyone

We’ve got a new member who I’m sure would love to be welcomed: I think he has a lot in common with you at the moment!

His name is Peder, and his introduction is here.

Drop by and say hello! We miss you.

Seenie

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