Lupus Support - CellCept and Plaquinil

Author

CellCept and Plaquinil

Gretchen

2005-11-29, 10:59 am

I searched the archives and found several folks who have tried
CellCept. It looked like most had to stop beause of GI problems, or
developed shingles and were miserable for several months. My doctor
wants me to think about trying it, as Plaquinil, Quinacrine and Imuran
175mg a day isn't quite doing it and I've been taking 10 mg of
Prednisone to make it through the day. Here's the rub, though. I've
been blessed not to have any major organ involvement (although I am
currently wondering about my lungs), and the list of possible side
effects and complications is pretty scary. Do those of you who have
tried CellCept have organ involvement? Anyone still taking it?

Next question - starting to have a few vision changes and am scheduled
for a RA (retinal arteriogram, I think) on Wednesday. They think
Plaquinil may be the culprit (I've been on it for 5.5 years). I have
seen posts about the possibility, but don't recall anyone actually
having damage. Anyone else gone through this?

Gretchen

Nancy F

2005-11-29, 10:59 am

Yes Gretchen,
I have, just last year. I had a Plaq load of about 6 years of 200 mg. X 2
times a day. My optho doc wasn't impressed but my rheumy said, OK. Decision
time. Do you want to continue taking the PLAQ and take the risk of your eye
sight? Well, No, I didn't. I'm now taking an older NSAID (Disalsid,
salsalate) that doesn't tear up my stomach and it helps with body pain,
joint pain in a low scale way. It wouldn't help much in a major flare, for
instance. I guess my Rheumy would give me Pred. shots if I got a big
Sjogren's flare.
N Farrell, SoCal

"Gretchen" <DGMats@earthlink.net> wrote in message
news:1133256554.283543.260330@o13g2000cwo.googlegroups.com...
>I searched the archives and found several folks who have tried
> CellCept. It looked like most had to stop beause of GI problems, or
> developed shingles and were miserable for several months. My doctor
> wants me to think about trying it, as Plaquinil, Quinacrine and Imuran
> 175mg a day isn't quite doing it and I've been taking 10 mg of
> Prednisone to make it through the day. Here's the rub, though. I've
> been blessed not to have any major organ involvement (although I am
> currently wondering about my lungs), and the list of possible side
> effects and complications is pretty scary. Do those of you who have
> tried CellCept have organ involvement? Anyone still taking it?
>
> Next question - starting to have a few vision changes and am scheduled
> for a RA (retinal arteriogram, I think) on Wednesday. They think
> Plaquinil may be the culprit (I've been on it for 5.5 years). I have
> seen posts about the possibility, but don't recall anyone actually
> having damage. Anyone else gone through this?
>
> Gretchen
>

Ruth Tay

2005-11-30, 1:02 am

In article <1133256554.283543.260330@o13g2000cwo.googlegroups.com>,
"Gretchen" <DGMats@earthlink.net> wrote:

> I searched the archives and found several folks who have tried
> CellCept. It looked like most had to stop beause of GI problems, or
> developed shingles and were miserable for several months. My doctor
> wants me to think about trying it, as Plaquinil, Quinacrine and Imuran
> 175mg a day isn't quite doing it and I've been taking 10 mg of
> Prednisone to make it through the day. Here's the rub, though. I've
> been blessed not to have any major organ involvement (although I am
> currently wondering about my lungs), and the list of possible side
> effects and complications is pretty scary. Do those of you who have
> tried CellCept have organ involvement? Anyone still taking it?
>
> Next question - starting to have a few vision changes and am scheduled
> for a RA (retinal arteriogram, I think) on Wednesday. They think
> Plaquinil may be the culprit (I've been on it for 5.5 years). I have
> seen posts about the possibility, but don't recall anyone actually
> having damage. Anyone else gone through this?
>
> Gretchen

Have been taking

Plaquinil for over 20 years and have had no problems
with my eyes. Have a field of vision and a total eye exam done
every six months. Do have a major organ [heart] involvement and an
aortic valve failing. The eye man insisted that the Rheumy stop giving
me plaquinil but all of his tests have proved there is nothing
wrong with my eyes. Good luck in your search ruth

jo ann and Jim t

2005-12-03, 11:16 am

THAT PREDNISONE MAYBE SPELLED WRONG IS A SERIOUS DRUG ON YOUR HEALTH
TOO, I HAVE A LOT OF HEALTH PROBLEMS FROM MANY TIMES OF TAKING IT.

Jenn L

2005-12-03, 11:16 am

I have been taking Cellcept for two months now..the Plaquinil halted
but did not really improve my skin involvement...I know that Cellcept
has shown a lot of progress with kidney involment with a good number
going
into remission....The thing about
Cellcept that bugs me is that you take it an hour b4 meals 2to3 after
and I always
get the timing wrong then forget a dose.
I have a lot of faith in this one...it's just a wait a see kinda
thing.Good luck to you.

Jenn