Methotrexate for maintenance

Hello All!!

I am wondering what dose of Methotrexate you are on if you are in remission and using it for maintenance to prevent relaspes. How long have you been on it, or do you have to be on it if you know. How long have you been in remission? Do you take other drugs like prednisone or something else with it? Any other information regarding METHOTREXATE would be greatly appreciated. Maybe you tried Methotrexate and switched to something else?

I am trying to figure out what is best for trying to keep this puppy asleep for awhile. I see my Rhuemy on November 1st so I would appreciate your help so I ask the right questions about METHOTREXATE when I go in. I had been in remission and was on 15mg of Methotrexate but relasped within a year and I am wondering if I was on the correct dose. Also wondering if it is maybe common to relaps within the first year and then easier to keep in remission after that??

I appreciate any advice, information, any sharing!! Thank you so much!!!!

I am happy to report that I just got my ANCA test back and it is 1:20! Yay!!!!!! That is normal according th the information I have. The rest of my tests look pretty good as well. I am so excited! SShhh! Don't wake anyone up!! :) It's been a big struggle since March!!!!

I hope everyone is happy and doing good!!! Thoughts and Prayers!! Kami

Good news on the bloodwork :) 15mg seems to be the "Standard" maintenance dose from what I see. They bumped me up to 20 when I was flairing though.

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. But I have other steroids (cortef) due to the no pit issue that might be helping me keep things in check.....

Hi Sweetie, I am in remission and on 20mg of mtx 1x a week and folic acid since July 2010, my doctor informed that he will start to wean me off in feb 2012, which will make my 2yrs of all the meds i went thru (cyclophosphamide, pred., biotics), but informed me that i may have to be on mtx for the rest of my life.
Also like you, i received my ANCA test back with great news of being in the norm.:thumbsup::thumbsup:

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.

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Originally Posted by Adrina

Hi Sweetie, I am in remission and on 20mg of mtx 1x a week and folic acid since July 2010, my doctor informed that he will start to wean me off in feb 2012, which will make my 2yrs of all the meds i went thru (cyclophosphamide, pred., biotics), but informed me that i may have to be on mtx for the rest of my life.
Also like you, i received my ANCA test back with great news of being in the norm.:thumbsup::thumbsup:

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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.

I will be taking Cellcept and Cyclosporine for the rest of my left because I had a kidney transplant 21 years ago. My Wegs specialist feels I am better off taking 2000 mg Cellcept for the rest of my life, unless I get a reaction or something better comes along. I have alot too risk, that is worry since I do have a kidney transplant. I know the risks but its a risk if I get off Cellcept then Weg attacks my kidneys.

Elephant, yeah there's no way you can get off immunosuppressants with a transplant. I was only referring to people who don't have them. In your case it's a necessary risk, and the benefits (ie, staying alive) greatly outweigh the risks.

Thanks everyone for the information! It is great being able to see what other people are doing and to talk to someone about this. Outside of here I can talk and people just get that deer in the headlight look most of the time and then I realize it's time to change the subject. :)

I was on 15 mg weekly after getting the WG in check in the hospital in December of 2009 and then I flared in March of 2011 and have been on 20 mg since. I am also on 10 mg Prednisone, I would love to start tapering on this but I don't want to flare again. I go to my doctor next week so I am anxious to see what he wants to do now that my numbers look pretty good again. I am wondering if I will do more Rituxan for maintenance or not?

My ANCA numbers do seem to correlate pretty well with my symptoms but maybe that will change now that I have been on Rituxan because that doesn't neccessarily kill the anca antibodies (or something like that).

Thank you everyone!! Wishing everyone health and happiness!! Kami

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Originally Posted by Adrina

Hi Sweetie, I am in remission and on 20mg of mtx 1x a week and folic acid since July 2010, my doctor informed that he will start to wean me off in feb 2012, which will make my 2yrs of all the meds i went thru (cyclophosphamide, pred., biotics), but informed me that i may have to be on mtx for the rest of my life.
Also like you, i received my ANCA test back with great news of being in the norm.:thumbsup::thumbsup:

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That is wonderful!! That is my goal too! Yay!!!!!

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Originally Posted by ScreaminMeanie

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.

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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??

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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Originally Posted by Sangye

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.

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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.

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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Originally Posted by JanW

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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That's the perfect question!

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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Originally Posted by vdub

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......

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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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Originally Posted by Kami

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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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. :D

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Originally Posted by ScreaminMeanie

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.
:D

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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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Originally Posted by ScreaminMeanie

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.

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Hi ScreaminMeanie, do you take folate? That may help with the side effects of Methotrexate I am told. Hope you're doing ok!! Kami

Yes, I do take folic acid. Usually take a double dose on the morning after I take the mtx, which I had previously found to help a lot, but not as much lately. So far, the nausea has gotten better, but the leg pain is still present. Can't really tell if it's getting better or not at this point. At this point, it's just one day at a time. Next week (week of the 15th) I'll get blood work done again and I'll know more then.

Hope you're doing well, also!

Did you find out how long they will Keep you on MTX? I always have read in this thread that MTX cannot be used for a life time. I just met a mother whos daughter is taking MTX and said she would be on it for the rest of her life. I didn't want to say anything but it didn't sound correct.

Sorry the post above is for shannon!

My mtx dosage was making me ill for about 3 days after one massive ingestion once a week. Doc had me split dosaging into 2 times, 12 hours apart, seems to be working...haven't had any extreme fatigue or nausea since the change...nice! And, I know of a rheumatoid arthritis patient (friend) who's been on mtx for a few years...he says it does take its toll on the body, but it also helps keep him in less pain. He's finally in a tapering mode after 5 years...he says he feels fine. Best of luck.