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


Sent from my iPhone using Tapatalk 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.

[kaysee]

GiGi - Sorry you are so uncomfortable. I was diagnosed in April 2014. I was put on pred and I'm still on it, but hope to be off soon. My taper is down to 5 mg every two days. I did the rtx - 4 weeks- in July and then again in Oct. They can do rtx every 4 months, but my Dr stretched that a bet because my kidneys are involved. I had bad night sweats but they went away after the second round of rtx. I've never taken ctx.

[drz]

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


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Some times the RTX doesn't work quick enough so then they will add CTX if you have serious symptoms that they need to get under control quickly. My Weg expert at Mayo recommended this for me. My hearing loss was from the Wegs and then the high amount of steroids were an unsuccessful attempt to save it or regain some of it and also necessary to stop or slow down the damage from Wegs activity. It may take a while but many of the symptoms related to high dosage of pred fade as you taper down.

[annekat]

Some times the RTX doesn't work quick enough so then they will add CTX if you have serious symptoms that they need to get under control quickly. My Weg expert at Mayo recommended this for me. My hearing loss was from the Wegs and then the high amount of steroids were an unsuccessful attempt to save it or regain some of it and also necessary to stop or slow down the damage from Wegs activity. It may take a while but many of the symptoms related to high dosage of pred fade as you taper down. Thanks, drz, I'd been wondering about that, amid all the speculations about different courses of treatment. I'd been wondering if CTX was given when RTX wasn't kicking in fast enough. I've only had CTX and MTX myself, and if I ever get a really bad flare, possibly needing RTX, I guess CTX will be out of the question because I've already had my lifetime quota. Although I know some have had way more than I.

[vdub]

The pted isn't a poison, its just an increased dosage of what is naturally produced in your body -- cortisol. You can't live without it and increased doses of do all sorts of miraculous things like keeping you alive. High doses of steroids, however, do have some undesirable side effects. However, if you are down to just 5mg per day, the side effects shouldn't be too bad. How long will you be on them? Hard to say as its a very individual thing.

I went off my pref for about a year and I won't do it again. The difference in how I feel is night and day. I'm currently on 5mg per day and I'm quite comfortable with that. I'll probably be on that dosage the rest of my life.

You, however, might be very different. Don't view it as a poison, though -- its keeping you alive.

[Pierre42]

My specialist says that 5mg of pred is "about what the body produces normally".

At that dose usually the only real problem is supposed to be "what happens when I take less, will my body pick up the slack or not?".

Also: the impact of pred varies significantly by duration. I know someone who takes 100mg of pred in a single dose as required with zero side effects other than the intended not-dying.

To my mind 100mg pred must be like licking an electric fence.

[MikeG-2012]

To my mind 100mg pred must be like licking an electric fence.

Ah Pierre, not so much like licking an electric fence, but running through every countryside in the area, looking for an electric fence to lick, and then having enough pred-energy to go find another one and repeat! LOL!