On Remission

[annekat]

I was deemed in remission on 6/30/10 after a 8/14/09 diagnosis. Off Prednisone on Valentine's Day in 2011 and Cytoxin in June. No maintenance drugs at all since. Still have neuropathy in lower legs and feet. Tried Imuran in March of 10 but did not agree with me that is why the longer than normal Cytoxin. Did the job. Congratulations Shimi and Gunny (thank your for your service)
Dale

Thanks for that. I knew I'd seen posts from you before about continuing Cytoxan for a year or more and then stopping. Did you taper it at all toward the end? I've seen a couple mentions of tapering Cytoxan on this forum, though I know it's not done that often. That seems to be what my doc wants to do as maintenance instead of even trying Imuran or methotrexate. He is not a Wegs specialist. I've been on Cytoxan for 7 months now and am doing very well. Just got blood done and don't know results yet. I'm not in remission but feel I could be getting close. I'm on 10 mg. pred. I mentioned the other maintenance drugs to my doc and he didn't seem to think they were necessary. I'm aware that Cytoxan is not considered effective beyond a certain lowering of dose per body weight. All along, I've been at slightly lower than the recommended dose, except for one brief period toward the beginning where I had special problems. But I have done so well on it that I feel OK about it. If I feel things are not going right, I do have recommendations about docs from other forum members in my area.

Again, congrats to those here who have recently gone into remission!

Anne

[RudiK]

Congratulations Shimi, let's hope you stay in remission. I relate very much to what Gunny said. I'm very disciplined, follow doctors orders, and kept a good attitude about it all. I was diagnosed in April, declared to be in remission in September, stayed on cytox for another four weeks, and I'm now on 150mg azathioprine and 7.5 mg preds.

[drz]

Congratulations Shimi, let's hope you stay in remission. I relate very much to what Gunny said. I'm very disciplined, follow doctors orders, and kept a good attitude about it all. I was diagnosed in April, declared to be in remission in September, stayed on cytox for another four weeks, and I'm now on 150mg azathioprine and 7.5 mg preds.

My remission is rather similar to Rudik's. Diagnosed April 2010, considered in drug induced remission in October, flared in November, back in remission in January, flared again in March and considered in remission since May of this year. The last six months is my record for being in remission and I hope to stretch it out awhile longer.

I tapered on Cytoxan last year only because of toxic reactions and they kept cutting dosage till it got so low it wasn't working at all and then they switched to azathioprine. Currently on 175 azathioprine and 5 mg pred and doing well except some joint pain in elbows recently started. This has happened before during tapering of pred but these pains usually went away in a few days. The plan is to continue current meds for another year and reassess then unless there is another flare in interim.

[annekat]

I tapered on Cytoxan last year only because of toxic reactions and they kept cutting dosage till it got so low it wasn't working at all and then they switched to azathioprine.

drz.

Do you remember how low they went on the Cytoxan before it stopped working at all? I'm asking in case my Dr. tries to make me taper that low instead of switching to a recognized maintenance drug. I realize our body weights are probably different, which would affect the answer, but I can at least have something to go on. I weigh about 140.

Anne

[drz]

drz.

Do you remember how low they went on the Cytoxan before it stopped working at all? I'm asking in case my Dr. tries to make me taper that low instead of switching to a recognized maintenance drug. I realize our body weights are probably different, which would affect the answer, but I can at least have something to go on. I weigh about 140.
Anne

I started out with a couple Cytoxan IV sessions, switched to oral Cytoxan, ramped up slowly to 200, slowly back down to 50 again with several hiatuses along the way, usually a few days to a couple weeks due to reduced WBC and some times infections. I was at 50 when they gave up on it and switched to Azathioprine. Same routine of starting at 50 with ramp up slowly to 150, bump to 200 for flare, and then back off to 175 due to elevated liver tests which is current dosage and liver enzymes still in normal range. Ask for liver enzyme test before you start Azathioprine if you can since they can ramp up dosage quicker if they know your body can metabolize it OK but you still need to monitor if your body can tolerate it well so you feel OK taking it. Not everyone can.

[annekat]

I started out with a couple Cytoxan IV sessions, switched to oral Cytoxan, ramped up slowly to 200, slowly back down to 50 again with several hiatuses along the way, usually a few days to a couple weeks due to reduced WBC and some times infections. I was at 50 when they gave up on it and switched to Azathioprine. Same routine of starting at 50 with ramp up slowly to 150, bump to 200 for flare, and then back off to 175 due to elevated liver tests which is current dosage and liver enzymes still in normal range. Ask for liver enzyme test before you start Azathioprine if you can since they can ramp up dosage quicker if they know your body can metabolize it OK but you still need to monitor if your body can tolerate it well so you feel OK taking it. Not everyone can.

Thanks for that. At my weight of 140, I ramped up to 100 of oral, which is a tad low, and then briefly up to 125 for a special problem, and then back down to 100. The slightly low dose has been due to the doc's concerns about toxicity, and because I'm "not a big person". The 100mg has actually worked well over the last 7 months to clear up my symptoms. I think he wants me to go to 75 in about a month. If he tries to taper me to 50, considering that you probably weigh more than I, I will consider that to be the bare minimum that might or might not do anything at all. My doc is not a WG specialist, but there aren't any within 700 miles of here. He knows about the other maintenance drugs, but sees this as a viable way to go. Since I'm doing well, it's hard to argue, but if that changes, believe me, I will be proactive about it. Thanks also for the advice on the Azathioprine, in case I end up doing that.

Anne