WG -predisone - when does it end?

[gigi.palumboshatz]

I was dx may 2014, when am I going to end my cx and pred? I'm sick of putting these poisons in my body! I lost my hearing partially in my left ear and I'm not sure if it's due to meds or its lost due to all the meds. I also have many night sweats, I'm so sick of this rollercoaster! Ughh!


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[Pete]

Hi Gigi,

Sorry you're still dealing with active disease. Night sweats are the pits. Your hearing loss is most likely because of the disease, not the meds.

Since you still have symptoms, it looks like you'll be taking meds for the foreseeable future. How much ctx and Pred are you taking?

Hope you feel better soon!

[mrtmeo]

Hi gigi,
Why didn't your dr change your drug when you were not responding by the 6th month?
I am assuming that you have been on ctx since May?
Have you considered Rituximab?

[gigi.palumboshatz]

Hi gigi,
Why didn't your dr change your drug when you were not responding by the 6th month?
I am assuming that you have been on ctx since May?
Have you considered Rituximab?

I did rx four IV treatments, now I'm on cx and pred is this right?


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[mrtmeo]

Hi gigi,
usually it is ctx first, then rtx, but I think drz did rtx, then ctx.
Why did u switch to ctx instead of another round of rtx?

[gigi.palumboshatz]

Nope, rtx 4 round then the ctx and pred I thought it was
Protocol. Crap crap crap


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[renidrag]

Any other meds?

[gigi.palumboshatz]

Any other meds?

Zarelto due to a PE and vitamins


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[mrtmeo]

Are you in remission?
How long have you been on ctx?

[annekat]

Nope, rtx 4 round then the ctx and pred I thought it was
Protocol. Crap crap crap


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There isn't any one protocol. Everyone's case is a little different. I wouldn't see anything wrong with RTX and then CTX, depending on the severity of involvement. Do you have kidney and/or lung involvement as well as the hearing loss? CTX is usually only used in pretty severe cases, and 8 months is a little long to be on it. I would think it and the RTX together would have given you some improvement by now. If so, maybe the CTX could be replaced by a milder maintenance med. If not, maybe you need another round of RTX infusions, and I don't know why the CTX wouldn't have worked better. RTX is more variable in how well it works for people or how many repeats it may take. As for pred, that is usually hard to get off of, even if in remission, but depending on your situation, maybe you could be on a lower amount and try to taper off it. I guess we need to know more about how you are doing overall.

The night sweats are present mainly during active disease or flares, but I've heard of some who continue to have them even when things are a lot better. That would be miserable. But, by chance, are you around the age of menopause, or approaching it? The night sweats of menopause are not a lot different from the ones with Wegs. For me, I think they were worse. Just an idea.