relapse meds

[hybrid]

After less than a year off meds, I was borderline and then relapsed. My nephrologist says she was consider low-dose chemo for the rest of my life. Does anyone have any alternatives? I would prefer the low-dose chemo and know I won't have a relapse to no chemo and waiting for the shoe to drop.

[andrew]

Sorry I missed this one Hybrid. Hope you're doing ok.

Low dose chemo would probably take the form of Imuran/Azathioprine. I'm told that I'll be on 125mg of Imuran for the 'forseeable future' which I take to mean the rest of my life. Certainly it would help prevent a relapse but I don't think anything can totally eliminate it.

Anyone else got any ideas?

[Jack]

I used to relapse until I went on to Mycophenolate and Prednisolone. It must be 10 years or more since my last episode. My main medications have not changed for years and I just accept that I will be taking them for the rest of my life.

[Sangye]

There are non-chemo drugs like Cellcept (mycophenolate mofetil) and Rituxan. Not 100% sure about Rituxan, but Cellcept works by targeting the B cells (one type of white blood cell involved in immunity) directly. You don't get the overall toxicity like with chemo. Like with anything, people have mixed results and you can get a relapse on any drug, with any dosage.

I've been on Cellcept for about 1-1/2 years (has it already been that long? *sigh*). It's going okay-- not terrific, but no major relapses. My doc wants me to stay on it for the time being.

[Twice]

I tried coming off everything in my late teens but it didn't work. After I was back in remission I stayed on Immuran and Pred for about 10 years without any significant illness before it flared up again and I lost my kidneys. After my transplant I stopped the immuran and went on to Cellcept, Pred and Ciclosporin. After a couple of years I stopped the Cellcept and eventually the disease became active again. Back on Cellcept for 5 years now and it seems, just about, to do the job.

I like Cellcept, but it doesn't suit everybody. Immuran worked well for me for a long time, too, and I seemed to have no side effects on that at all.

[Sangye]

I'm on Cellcept only (no pred or cyclosporin). I developed increased intracranial pressure in 2007, and two of the most likely culprits were pred and its accompanying weight gain. I still have the increased pressure-- barely contained by drugs. So given that I'm not on pred and not in remission either, I guess I'm doing okay.

[hybrid]

I did not know that prednisone could do that. What is cellcept? I think I am hoping for imuran rather than low-dose chemo for rest of my life. What do you think? Hybrid

[hybrid]

I am hoping for imuran rather than low-dose chemo for rest of my life. What is cellcept? I think you are right that the body gets used to a drug and you have to change. I will have to remember that. Did you find that huge, stressful, trauma caused a relapse? Hybrid

[hybrid]

I find it hard to read the comments like I lost both my kidneys, etc. That is why I have to be "up" to go to this website. Feeling much more energetic, hoping for at least a borderline anca on Tues. Golf season is upon us and I am going to France in May. Is imuran a kind of chemo? Several people talking about cellcept. If things work out as I hope, I should be in Oz in Dec. I will let you know if I get near Canberra. Never did get there last time. Hoping to go to Perth this time. Thanks for doing all this, Andrew. I have learned to do several new things by using this website. Hybrid

[Sangye]

The increased intracranial pressure is pretty rare. (I'm so special) It's linked to pred, because it can happen if you abruptly stop it, without tapering. That wasn't the case with me-- I had been off pred for months when it happened. But once you have it, taking pred will increase it again. Don't add it to your list of worries-- it's very unlikely. I haven't found another Weggie yet with it.

Imuran is chemo. (Chemo drugs : Imuran, Cytoxan, Methotrexate). Cellcept is not chemo. It's an immune-suppressant that works by wiping out the B cells (white blood cells associated with immunity) in the bone marrow. It's the drug you'd take if you had a kidney transplant, to avoid rejecting the kidney. Doesn't do a lot of damage, like chemo.

Imuran and methotrexate are much milder than cytoxan, though.