Methotrexate vs Imuran?

Hello,

I am currently taking Prednisone and Plaquinil for to keep my Wegener's symptoms in check. However, I have been trying to ween down off of Prednisone (pre-diabetes and just over all Prednisone ick) - but can't seem to get all the way off due to pretty bad joint pain. Also showing some decreased kidney function. Doc wants me to consider Methotrexate or Imuran. I have not had experience with either of these drugs, and would love to hear from those of you who have. What should I expect as far as side effects, etc.

Hi Rachel, your pred experience is pretty common. It's not easy for many people to wean off pred. Took me a couple of long efforts to make it. As your 'other' choice of meds kicks in, the pred will be needed less. I was on Methotrexate the entire time. Took about 3-4 years to get rid of that too! Side effects of MTX are mild for the most part...doc had me split dosage times to help avoid some of the effects. My worst one was hair loss...lol...extra folic acid took care of that. Best to you, follow your protocols!!!

I had taken them seperately, and then together for 10 years. I prefer imuran as far as side effects. I was a stable slightly more tired, where with the methotrexate i got kicked pretty hard the day after i took it every week. Thats my 10 cents, but you won't really know how your own body will respond until you do it, unfortunately.

I'm worried about the hair loss. I had terrible hair loss with cytoxan - to the point I had to just shave it - and have alopecia problems already. Thanks for the input!

Thanks - Ill keep that in mind. I have pretty bad fatigue problems as is.

Wow Rachel, I see in your profile you have had wegs quite awhile!!! Can you share your story of how you got dxed? I wonder, if the cytoxen was administered differently back then, and thats why the hair loss? But maybe you have had it more recently. I was dxed at 16, and i'm 33 now. I only had cytoxen for 4 months.

I was 16 when diagnosed as well. I had suffered from bad sinus infections for awhile, but then started getting random joint pain and an elevated SED rate. While waiting to see a Rheumatologist I started coughing up blood - and that really sped up the whole process. I ended up having kidney, lung and sinus involvement, and I wound up spending some time in the hospital on IV prednisone treatment. Thats when they started me on the cytoxan. I can't remember the dosage, but it was just an oral pill. They didn't expect me to lose my hair or anything, but I had bad hair loss and it sent me into early menopause. I also ended up staying on the cytoxan for way too long. Because of insurance changes, I had to stop seeing my diagnosing doc and the new doc kept me on the cytoxan for 2-3 years. I ended up with neutropenic fever because of it. The hair loss happened pretty quickly after starting the treatment though - so that's why that worries me with these other meds.
You're one of the few people I've encountered that was diagnosed at a young age as well. How have you gotten along over the years? Any big flares?

I have only taken MTX as my primary maintenance drug, so can't compare with Imuran. I do know that MTX is generally well tolerated and I have not had any big problems with it. I did experience some hair thinning and slower than normal hair growth after haircuts for a while. That still seems sort of variable and maybe is influenced by other factors too, like time of year and amount of sunlight. (I live in Alaska.) But, it's never been noticeable to anyone but myself and the person who cuts my hair. Anyway, I believe many docs consider it to be one of the least toxic maintenance meds. I have had some occasional mild nausea, some elevation of liver enzymes on labs, but nothing alarming.

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Originally Posted by Rachel_Elise

Hello,

I am currently taking Prednisone and Plaquinil for to keep my Wegener's symptoms in check. However, I have been trying to ween down off of Prednisone (pre-diabetes and just over all Prednisone ick) - but can't seem to get all the way off due to pretty bad joint pain. Also showing some decreased kidney function. Doc wants me to consider Methotrexate or Imuran. I have not had experience with either of these drugs, and would love to hear from those of you who have. What should I expect as far as side effects, etc.

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Originally Posted by Rachel_Elise

Hello,

I am currently taking Prednisone and Plaquinil for to keep my Wegener's symptoms in check. However, I have been trying to ween down off of Prednisone (pre-diabetes and just over all Prednisone ick) - but can't seem to get all the way off due to pretty bad joint pain. Also showing some decreased kidney function. Doc wants me to consider Methotrexate or Imuran. I have not had experience with either of these drugs, and would love to hear from those of you who have. What should I expect as far as side effects, etc.

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Rachel, I have taken Imuran since going off cytoxin. I lost most of my hair when on cytoxin, but have had no hair loss with Imuran. I have been on it about 8 years now with no significant side effects and I have not had a flare. I have tried to cut down the amount twice, with my doctor's approval, but both times symptoms came back. I'm thinking about trying it again, though. I have not been on any prednisone since I was weaned off. So far so good! ☺

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I have been on Imuran about 3 mos. with predisone . I don't believe Imuran is helping. I have no side affects from it so that is a plus. However I just had a big flare while taking Imuran and weaning down from predisone. took methotrexate years ago but don't remember if there was any side affects.

I'm going to start cytoxin infusions next week. My hair loss is already bad from the predisone or Imuran I don't know which. I'm really not looking forward to cytoxin

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Originally Posted by PattyL

I'm going to start cytoxin infusions next week. My hair loss is already bad from the predisone or Imuran I don't know which. I'm really not looking forward to cytoxin

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While you’re on cytoxan, stay hydrated and urinate whenever you need to. Don’t hold it in very long. Cytoxan is hard on the bladder. A longer term side effect can be bladder cancer. I was on cytoxan for 16 months ending in July 2012. No problems so far. I get a urinalysis every other month just see if anything is getting abnormal.

You may want to try taking folic acid to combat hair loss. I took it (1 mg/day) when I was on methotrexate. I didn’t lose any hair, but it did get coarser.

Thank you. I'm going to try the folic acid. I have kidney involvement as well so I just hope the folic acid will be ok for me i'll check with dr. Did you have many side affects from the cytoxyn?

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Originally Posted by PattyL

Thank you. I'm going to try the folic acid. I have kidney involvement as well so I just hope the folic acid will be ok for me i'll check with dr. Did you have many side affects from the cytoxyn?

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The only wegs med I had a major problem with was immuran. They didn’t do the enzyme test to see if I could metabolize it. I had a major flare that nearly killed me. Fortunately, I’ve recovered fully.