decreasing meds

[keegan55]

does this sound right?I told my Rheumatologist the findings of the UNC doctors.Doctor Julie McGregor feels that my kidneys do not like the MTX and it is causing problems with the kidneys and She wants me on a different drug. She recommends Rituxin or imuran. I have limited GPA the kidney biopsy showed no involvement. I told my Rheumatologist about her findings I have only been on and MTX for 6 months. His response was to decrease the MTX to 7.5 a week from 15 A week. I still have A node in the left lung. he says the MTX cannot cause kidney problems. Who do I believe and does anybody think that that's the right move reducing the medication Rather then changing it

[Dirty Don]

Doc's wrong, mtx can and does cause kidney issues. That's why the docs have monitored mine so closely, but the mtx worked on me w/no issues. On some it doesn't, mostly because of the kidneys, so rtx & immuran are possibilities. Rtx is the most likely to be used. Best to you.

[im so blessed]

I take 12.5 of mtx and 100 of imuran. my kidneys were only involved at my onset 13 yrs ago. no involvement since. mine is mostly arthritic and i had a stenosis. my doc would never recommend anything cold turkey. what about tapering the mtx as you add immuran in...everyones body is different and responds different too.

[MaxD]

I was diagnosed with limited GPA - no kidney involvement, nodes in lung, and previous episode of Bell's palsy. Had 4 infusions of Rituxan - 6 months later, the lungs are totally clear. I'll be done with prednisone in a couple of weeks. After that, 1 infusion of Rituxan every 6 months for 2 years. No other meds, and after that we wait and watch.

Btw, there was a French study out recently which concluded that Rituxan (1 infusion every 6 months for 2 years) reduces the chances of relapse within 2 years down from 60-70% down to 3-5%. Admittedly, maintenance therapy is still an art, and there aren't any long-term studies of side-effects of Rituxan on the body - BUT, in the short term I haven't noticed any, so this is a no-brainer.

[kaysee]

I have kidney involvment and my dr prescribed 60 mg pred and rituxan when I was first diagnosed. He calls rituxan the "big gun". I was on pred and had the rituxan treatments as soon as they were approved by insurance. I have had two rounds of rituxan over a 4 month period and the plan is not to do another unless I have a flare. We are tapering pred to get off that entirely and then will do imuran. My dr, also, will not give me mtx because of the kidney involvement. I have also read somewhere not to take mtx because it will damage kidneys.

[Wegetarian]

My nephrologist wants to put me on Aza after my CTX infusions, as I have kidney involvement. Used to be on MTX, but maybe it didn't work for me since I was still on 25mg/week when I flared up. Guess Aza and RTX are some of the few drugs that should be used if your kidneys are involved, although I thought they monitor the liver values more closely with MTX.

[Ruotsi1]

I was told by my Pulmonologist and Nephrologist that MTX wasn't a good option for me because of my lung involvement. I did ctx for 6 months and just finished 2 rounds of RTX.

[Dirty Don]

My lungs and sinuses were badly affected (lungs looked like broken glass) and I was given mtx because my kidneys were fine and that's what the docs worried about, not the lungs. Best to you.

[Pierre42]

UCSF says MTX may damage your kidneys.

FAQ: Methotrexate | Patient Education | UCSF Medical Center

So Does chemocare.com

Methotrexate Sodium - Chemotherapy Drugs - Chemocare

So Does the FDA

Methotrexate - FDA prescribing information, side effects and uses

If your doc says flat out you don't need to worry about your kidneys when on MTX you should be concerned about his competence.

Sadly, There are far too many well intended highly opinionated medical practitioners out there who are out of touch with the basic medical facts. (it's a really big field, nobody can know everything, a lot of it is changing rapidly)

Disclaimer: this year my specialist changed me to IMURAN instead of METHOTREXATE , not because I had any issues with MTX but just "generally less long-term toxicity, and equally as effective" (left me with the impression that the medical community as a whole is generally moving in that direction, preferring IMURAN over MTX).

Apparently I am one of the lucky ones, at least so far, no adverse reactions to any of the many-and-various potions-and/or-pills I've been pumped full of, not even when tapering.

Dunno how long that will last , but I'll count the WINs whenever I can!

[Pete]

I have been on mtx for 18 months. My rheumy closely monitors my renal function with my monthly labs. So far, I have had only one episode of kidney involvement (Aug-Sep 2013) that was knocked out with two infusions of rtx last October. I currently take my mtx on Wednesday and split the dose (3 pills AM, 3 pills PM). I cannot take imuran. My treatment goals for the coming year are to 1) taper off prednisone entirely, 2) get off mtx entirely, and 3) see what my rheumy says about coming off bactrim (more about risk management than anything else). Accomplishing all this will put me in full remission. I've been fortunate on this journey having only one major flare since disease onset followed by nearly two years of keeping the wegs dog asleep.

I'm like Pierre - I count my wins whenever I can...