Methotrexate for maintenance

[Kami]

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

[Psyborg]

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.

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

[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.

[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.

[Sangye]

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.

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.

[elephant]

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.

[Sangye]

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.

[Kami]

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

[Kami]

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.

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