Azathioprine (Immuran): Do you take it? Would like to get off, but doc says no!

[Middlesista]

My insurance company was not going to pay for Rituxin which was started when I was in hospital - they wanted me to have the CTX. They could care less about what is the less problematic med. What is best for the individual should be the focus and let's not talk about the ridiculous cost of some medications....

[Erin2014]

Hi David,
I was diagnosed in Oct 2014. I had kidney, lung, sinus and hearing involvement. After my initial treatment of cyclophosphamide (125mg) and prednisone (60mg) daily, I stopped the cyclo and switched to azathioprene (150mg) in Jan 2015 and tapered off of pred by May 2015. I'm still taking the same dose of azathioprene and my kidney specialist told me I'd probably be taking this drug for 3-4 yrs. Since October my bloodwork has been very good, I've had no symptoms and now see my kidney specialist only every six months and do bloodwork every 6 wks. My lungs/sinuses have complete returned to normal and my hearing has stabilized. No relapses since my diag.
I'm also concerned with side effects but the alternative of becoming sick again usually keeps these fears at bay. I will probably feel like you after 3 more years... I often wonder what would happen if my dose of azathioprene was reduced, but haven't broached the subject with my docs. 25 mg is so low, you're lucky! I would keep the discussion going with your doc. I'm in Ottawa, Canada and I don't have a rheumatologist but my kidney specialist has many Wegs patients and I also have an excellent lung specialist with a lot of experience with Wegs. They work as a team with my GP and I feel very supported in this bizarre journey! Stay healthy and enjoy life! Erin

[TOBEY32]

Erin, yours sounds much like mine: kidney, lung, sinus, hearing (also pn in my feet). Out of the things that have been affected, if you could have only one, which do you wish was better/healed? Just curious. Sometimes, for me, it's my feet, sometimes hearing, etc. Do you ever hold your nose closed to unblock your ears a little? Maybe you don't need to do that. Yeah, all I have is my kidney doc and no others. He was the one who was assigned to me when initially diagnosed, and I asked if he would take me on as a patient (having no insurance). Very nice guy.

[Erin2014]

Hi Tobey,
I had pn in my feet too! Now I only have slight pn in my right ft. I used to drive me crazy but now I don't really notice it. I remember when it was at its worst - taking a shower has hell when the water hit my feet it was agony! The worst is my kidneys - I have about 50% function, but all the other symptoms are gone so I feel pretty good. My lungs were full of gunk for about 4-5 months before the meds really kicked in. I hated being out of breath, using nasty puffer and so tired... My hearing loss really scared me, before I was diagnosed, I was in a mtg with about 12 people and one of the participants turn her head to say something and I didn't hear a word of it. Freaked me out! I went to the ER that night, but the ENT on call just dismissed me and told me it was probably my age and gave me an antibiotic!! I thought of tracking him down after my diagnosis to tell him the next time someone comes to the ER and presents with my symptoms perhaps he shouldn't blow them off! I used to hold my nose closed too to unblock my ears, but luckily I haven't needed to do that in a while. Glad you have a great kidney doc! Mine is great too! She is big on people educating themselves and really listens to my concerns. I took several months off work and she was very supportive. Do you wonder what your medical care would be like if you lived in Cleveland or Minnesota? Not sure how insurance works in the U.S., but why no ins??

[Randy]

I have been taking azathioprine for 6 years (100mg a day) My Rheumatologist says I'll be on it forever. I get urine tests done once a month and a urine cytology once a year. ( not sure what the difference is.I think the cytology is a more in depth look at kidney function). So far so good, no kidney problems. I worried about all the warnings that come with azathioprine too. My doctors tell me the chances of cancer or anything else are slim and If I stop taking it the chances of Wegner's coming back are much greater so I keep taking it.

[alicia_b]

I have been on Imuran for a while now. My dr's have me holding at 100mg. They are afraid to decrease it to fast because of possible flares. When I ask about how long, they say, I will slowly go down to 25mg, aprox 2 years for each 25mg step down. Then I will remain on 25mg permanently. There is simply not enough research on the WG to know how to treat WG.

[TOBEY32]

SO sorry to just be getting back with you. When you don't have the Internet at home it can take longer.
You say you don't have PN is bad? What do you attribute the better PN too? For the most part I've only had numbness - which (for the most part) I'm used to, and is not the problem. But I have a small area on the top of my left foot that can flare. And because nerve-endings are involved it's just really painful to the touch, with shoes, etc. like you say. I pray it doesn't get any larger an area/worse. Kidneys: what symptoms were you experiencing? I've not experienced any symptoms from kidney disease that I'm aware of. My doc says my kidneys are at about 33% function. It's hard to believe that. Again, I pray it will never change (to the lesser) from that. Your ears: Was it your estuation tubes that were affected? That's what I've been told was my problem. I didn't know they could better themselves/heal. Maybe a possible something to look forward to if so.
I'm sure there are people still in Cleveland & Minnesota who don't have proper medical care just because some good hospitals reside there. There are often clinics in cities across the U.S. that offer cheaper/free medical attention, but even then not everywhere. Where do you live, Erin?