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Thread: Methotrexate for maintenance

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    Quote Originally Posted by ScreaminMeanie View Post
    I've been on 25 mg (injectable) since February of this year. Did rtx in May (4 doses), got completely off pred as of a month ago, and my doc's been telling me we would taper my mtx down to 15 mg as a maintenance dose for probably no less than a year. Since my blood work was spot on this week, I would imagine this will start next week (got an appt with her on Thursday). I would so love to get it off it completely, but hopefully cutting it back to 15 will do away with the side effects that have popped up lately.
    That is good news!! We did the Rituxan at about the same time. I am so happy it worked well for you!! What side effects do you have from the mtx??

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    I have been on a 15 mg. maintenance dose of MTX for about two years now with Folic Acid and Bactim DS 3x a week. It seems to be working well for but I have decided to find out just how long my doctor is planning on leaving me on this drug. I mean at some point I should come off it, right? I was diagnosed in Jan. 2005 and have been on it more than I have been off of it. I wonder if my body is starting to rebel because my hair is starting to thin out. Has that happened with anyone else? I decreased my dose on my own and it seems to have helped. My WG doctor told me to just double my intake of Folic Acid and the hair loss will stop but 2000 mcg. a day seems like a bit much to me. So now I'm taking 5 pills a week, so far so good.

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    Quote Originally Posted by Sangye View Post
    Adrina, if your doctor is talking to you about lifetime mtx, it's time to get a Wegs specialist involved. That is outdated thinking. They know now that staying on "maintenance" drugs indefinitely does not guarantee that you'll avoid flares, and it does guarantee that you'll be taking serious drugs for years on end. Those drugs have consequences which often outweigh the possibility of an occasional flare.

    Also, I'm not sure if you know it, but your doctor should not be using ANCA to measure disease progress. It's useful for diagnosis, but in most cases is not an accurate indicator of disease activity. It's best to rely on signs/ symptoms and diagnostic tests.
    Thanks Sangye for the info. sometimes when i go to my appointments i forget some of the information that is given to me (which is not good), my memory nowadays is very slim, i usually hear "blood test is good, but you need to start taking iron pills, you will be weaned off in feb. 2012 from mtx, oh, and don't get pregnant". i do need to visit a Wegs specialist, due to the doctors in the country where i live are not specialist on this particular condition, i'm actually the 3rd person to be diagnosed with it in the hospital here.

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    Agreeing with Sangye that docs should have a plan to try to reduce dosage as much as possible while trying to keep disease activity at bay. It's a little tricky as to whether or not these drugs prevent a flare (many suspect not), and, even if the do, is the threat of a flare (which could be relatively minor and easily treated) is worth it to stay on a drug that has its own downsides for the rest of your life. It's an informed decision that patient and doc must come to together.

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    Quote Originally Posted by JanW View Post
    Agreeing with Sangye that docs should have a plan to try to reduce dosage as much as possible while trying to keep disease activity at bay. It's a little tricky as to whether or not these drugs prevent a flare (many suspect not), and, even if the do, is the threat of a flare (which could be relatively minor and easily treated) is worth it to stay on a drug that has its own downsides for the rest of your life. It's an informed decision that patient and doc must come to together.
    That's the perfect question!

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    Kami--this is great news. And no, you do not want a relapse! I think the doctor is right to be concerned about the methotrexate. it is a standard drug for many forms of autoimmune disease, but it is decidedly not kidney friendly. Cellcept, for all its faults, is considered a better choice in these cases.

    Al

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    Quote Originally Posted by vdub View Post
    I was on mtx for abou 17 months. My rhuemy tapered me off 25mg by one pill per week until totally off. My last pill was 2 months ago. So far, so good, and I'm feeling great......
    That is awesome! I hope to get off of it one day too. My doctor constantly monitors my lungs and my numbers but I would like to get off of it. Praying that you stay feeling so great!! Thanks for responding.

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    Quote Originally Posted by Kami View Post
    That is good news!! We did the Rituxan at about the same time. I am so happy it worked well for you!! What side effects do you have from the mtx??
    Sorry to take so long to respond, Kami. The forum has been hit or miss for me lately - about half the time I get an error message.

    To answer your question, the side effects are nausea, diarrhea, headaches, and dizziness. I just cut my dose back this week from 25mg to 20mg. Hoping this will help. Already feel a bit better today than I usually do the day after.

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    Quote Originally Posted by ScreaminMeanie View Post
    Sorry to take so long to respond, Kami. The forum has been hit or miss for me lately - about half the time I get an error message.
    That's ok. I am trying to keep up better with the forum now but hit and miss for me too. I get error messages when I try to switch pages but I think it's just my poor internet service out here in the country.

    Thanks for the information. I see my doctor on Tuesday and can't wait to see what he says. My numbers looked pretty good and then this morning I woke up and my left eye was all red. I am getting sick of all these little things. One day it's one thing and the next day it's something else. Although it's not bad it seems to me that it's not completely asleep. Take care!

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    Quote Originally Posted by ScreaminMeanie View Post
    I've been on 25 mg (injectable) since February of this year. Did rtx in May (4 doses), got completely off pred as of a month ago, and my doc's been telling me we would taper my mtx down to 15 mg as a maintenance dose for probably no less than a year. Since my blood work was spot on this week, I would imagine this will start next week (got an appt with her on Thursday). I would so love to get it off it completely, but hopefully cutting it back to 15 will do away with the side effects that have popped up lately.
    Hi ScreaminMeanie, do you take folate? That may help with the side effects of Methotrexate I am told. Hope you're doing ok!! Kami

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