New to the group - Questions about Cellcept

[Guest guest]

I'm 36 and I was diagnosed with a connective tissue disorder about 4

years ago which has been somewhat mild until this past year. It's

now fully diagnosed as Lupus and I've tried just about ever anti-

inflamitory on the market and last Feb (2007) my doctor put me on

Plaquenil and steroids. The joints in my hands were so swollen and

painful that I could not even hold a pen to write. I was on the

steroids for about 4 months (and 30lbs later)and the Plaquenil for

about 8 months. I was still getting flare ups ( so after talking

wiht my doctor about it, I stopped taking the Plaquenil. Things did

eventually better and the flare ups (which are usually severe joint

pains in my knees, hips, or hands) went into remission and I've been

doing okay from last fall 2007 until January 2008 when my hands

started swelling and hurting again.

My doctor told me that it was really time to go on the Cellcept

because the anti inflamitory meds were not treating the underlying

issue. She has been recommending it to me for about 2 years now, but

I've been fooling myself that maybe I'll just start feeling better.

From what I've read on Cellcept, quite frankly I'm petrified totake

it. I did fill the script, yesterday, and there the bottle sits on

the kitchen table. I've read some scarey things about it and I

don't know what I want to do. I'm pretty upset about how things are

going right now. Just typing this post is agony. My hands are

throbbing and on fire and two fingers on each hand are swollen to

twice their normal size. I feel crippled. I don't want to take the

meds but I also don't want to deal with this pain anymore. It's

really getting to me. I can't sleep the entire night because the

pain wakes me up and it's becoming an issue trying to make it

through the day (and keep up appearances so I don't look like a

wreck at work even though that's what I feel like on the inside).

It's not only physically draining but emotionally draining as well.

I'm tired of being in pain all the time and tired of having to hide

it so I can cope in daily life. It's not like I can cry at work and

I have to work so I just bury my pain and deal with it.

I've never joined a group like this as I've always felt that I could

manage on my own, but I realize now that I can't. My boyfriend is

supportive and loving as is the rest of my family, but I know that

the don't fully understand the depth of the pain and the fear I have

about having to take a medication that increases your risk of

infection and worse, cancer of the skin and lymphoma. How do you

explain that to someone?

Anyhow, what I was hoping to gain from all of this was some insight

from people who have been on Cellcept. What has it been like for

you and how are you dealing with it. Is there anything I should

avoid or be aware of going into this treatment? Have you had to

deal with different side effects? I know that everyone reacts

differently to medication, but at this point I just want to be able

to talk with someone else who has had to deal with this.

Thanks,

Terese

[Guest guest]

Welcome to the group, Terese.

I'm very sorry about your diagnosis and that you are in so much pain.

If you were prescribed CellCept (mycophenolate mofetil), I'm assuming that

you have lupus nephritis. Is that correct?

Since most of our discussions here are related to rheumatoid arthritis and

I've only heard CellCept mentioned rarely, I'm not sure how many responses

you can expect about personal experience with the drug. Have you also joined

groups that deal primarily with lupus? This is a very active group with a

lot of members: LUPIES

Is the physician who prescribed the CellCept a rheumatologist? Have you

consulted with a nephrologist?

Not an MD

> [ ] New to the group - Questions about Cellcept

>

> I'm 36 and I was diagnosed with a connective tissue disorder about 4

> years ago which has been somewhat mild until this past year. It's

> now fully diagnosed as Lupus and I've tried just about ever anti-

> inflamitory on the market and last Feb (2007) my doctor put me on

> Plaquenil and steroids. The joints in my hands were so swollen and

> painful that I could not even hold a pen to write. I was on the

> steroids for about 4 months (and 30lbs later)and the Plaquenil for

> about 8 months. I was still getting flare ups ( so after talking

> wiht my doctor about it, I stopped taking the Plaquenil. Things did

> eventually better and the flare ups (which are usually severe joint

> pains in my knees, hips, or hands) went into remission and I've been

> doing okay from last fall 2007 until January 2008 when my hands

> started swelling and hurting again.

>

> My doctor told me that it was really time to go on the Cellcept

> because the anti inflamitory meds were not treating the underlying

> issue. She has been recommending it to me for about 2 years now, but

> I've been fooling myself that maybe I'll just start feeling better.

> From what I've read on Cellcept, quite frankly I'm petrified totake

> it. I did fill the script, yesterday, and there the bottle sits on

> the kitchen table. I've read some scarey things about it and I

> don't know what I want to do. I'm pretty upset about how things are

> going right now. Just typing this post is agony. My hands are

> throbbing and on fire and two fingers on each hand are swollen to

> twice their normal size. I feel crippled. I don't want to take the

> meds but I also don't want to deal with this pain anymore. It's

> really getting to me. I can't sleep the entire night because the

> pain wakes me up and it's becoming an issue trying to make it

> through the day (and keep up appearances so I don't look like a

> wreck at work even though that's what I feel like on the inside).

> It's not only physically draining but emotionally draining as well.

> I'm tired of being in pain all the time and tired of having to hide

> it so I can cope in daily life. It's not like I can cry at work and

> I have to work so I just bury my pain and deal with it.

>

> I've never joined a group like this as I've always felt that I could

> manage on my own, but I realize now that I can't. My boyfriend is

> supportive and loving as is the rest of my family, but I know that

> the don't fully understand the depth of the pain and the fear I have

> about having to take a medication that increases your risk of

> infection and worse, cancer of the skin and lymphoma. How do you

> explain that to someone?

>

> Anyhow, what I was hoping to gain from all of this was some insight

> from people who have been on Cellcept. What has it been like for

> you and how are you dealing with it. Is there anything I should

> avoid or be aware of going into this treatment? Have you had to

> deal with different side effects? I know that everyone reacts

> differently to medication, but at this point I just want to be able

> to talk with someone else who has had to deal with this.

>

> Thanks,

> Terese

[Guest guest]

Hi ,

I'll check out that other group too. I don't have lupus nephritis as my

lupus issues don't deal with the kidneys, rather just sever joint pains

and sun sensitivity (rash from too much exposure) so most of the symptoms

I have are similar to RA. They initially thought that's what I had but I

tested negative three times but came back positive with SLE instead. And

over the years other symptoms like Irisitis and Raynauds have surfaced. I

do get bloodwork done every 3 months so they can keep an eye on the rest

of me too. Thanks for your thoughts and I'll also check out that other

group to see if I can find the advice I need.

Terese

--- <Matsumura_Clan@...> wrote:

> Welcome to the group, Terese.

>

> I'm very sorry about your diagnosis and that you are in so much pain.

>

> If you were prescribed CellCept (mycophenolate mofetil), I'm assuming

> that

> you have lupus nephritis. Is that correct?

>

> Since most of our discussions here are related to rheumatoid arthritis

> and

> I've only heard CellCept mentioned rarely, I'm not sure how many

> responses

> you can expect about personal experience with the drug. Have you also

> joined

> groups that deal primarily with lupus? This is a very active group with

> a

> lot of members: LUPIES

>

> Is the physician who prescribed the CellCept a rheumatologist? Have you

> consulted with a nephrologist?

>

>

>

> Not an MD

>

>

> > [ ] New to the group - Questions about Cellcept

> >

> > I'm 36 and I was diagnosed with a connective tissue disorder about 4

> > years ago which has been somewhat mild until this past year. It's

> > now fully diagnosed as Lupus and I've tried just about ever anti-

> > inflamitory on the market and last Feb (2007) my doctor put me on

> > Plaquenil and steroids. The joints in my hands were so swollen and

> > painful that I could not even hold a pen to write. I was on the

> > steroids for about 4 months (and 30lbs later)and the Plaquenil for

> > about 8 months. I was still getting flare ups ( so after talking

> > wiht my doctor about it, I stopped taking the Plaquenil. Things did

> > eventually better and the flare ups (which are usually severe joint

> > pains in my knees, hips, or hands) went into remission and I've been

> > doing okay from last fall 2007 until January 2008 when my hands

> > started swelling and hurting again.

> >

> > My doctor told me that it was really time to go on the Cellcept

> > because the anti inflamitory meds were not treating the underlying

> > issue. She has been recommending it to me for about 2 years now, but

> > I've been fooling myself that maybe I'll just start feeling better.

> > From what I've read on Cellcept, quite frankly I'm petrified totake

> > it. I did fill the script, yesterday, and there the bottle sits on

> > the kitchen table. I've read some scarey things about it and I

> > don't know what I want to do. I'm pretty upset about how things are

> > going right now. Just typing this post is agony. My hands are

> > throbbing and on fire and two fingers on each hand are swollen to

> > twice their normal size. I feel crippled. I don't want to take the

> > meds but I also don't want to deal with this pain anymore. It's

> > really getting to me. I can't sleep the entire night because the

> > pain wakes me up and it's becoming an issue trying to make it

> > through the day (and keep up appearances so I don't look like a

> > wreck at work even though that's what I feel like on the inside).

> > It's not only physically draining but emotionally draining as well.

> > I'm tired of being in pain all the time and tired of having to hide

> > it so I can cope in daily life. It's not like I can cry at work and

> > I have to work so I just bury my pain and deal with it.

> >

> > I've never joined a group like this as I've always felt that I could

> > manage on my own, but I realize now that I can't. My boyfriend is

> > supportive and loving as is the rest of my family, but I know that

> > the don't fully understand the depth of the pain and the fear I have

> > about having to take a medication that increases your risk of

> > infection and worse, cancer of the skin and lymphoma. How do you

> > explain that to someone?

> >

> > Anyhow, what I was hoping to gain from all of this was some insight

> > from people who have been on Cellcept. What has it been like for

> > you and how are you dealing with it. Is there anything I should

> > avoid or be aware of going into this treatment? Have you had to

> > deal with different side effects? I know that everyone reacts

> > differently to medication, but at this point I just want to be able

> > to talk with someone else who has had to deal with this.

> >

> > Thanks,

> > Terese

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Terese,

Are you seeing a rheumatologist?

Please do check out Lupies (or other lupus groups) for personal reports

about CellCept.

I'll post some articles about it here, too.

Not an MD

> [ ] New to the group - Questions about Cellcept

> > >

> > > I'm 36 and I was diagnosed with a connective tissue disorder about 4

> > > years ago which has been somewhat mild until this past year. It's

> > > now fully diagnosed as Lupus and I've tried just about ever anti-

> > > inflamitory on the market and last Feb (2007) my doctor put me on

> > > Plaquenil and steroids. The joints in my hands were so swollen and

> > > painful that I could not even hold a pen to write. I was on the

> > > steroids for about 4 months (and 30lbs later)and the Plaquenil for

> > > about 8 months. I was still getting flare ups ( so after talking

> > > wiht my doctor about it, I stopped taking the Plaquenil. Things did

> > > eventually better and the flare ups (which are usually severe joint

> > > pains in my knees, hips, or hands) went into remission and I've been

> > > doing okay from last fall 2007 until January 2008 when my hands

> > > started swelling and hurting again.

> > >

> > > My doctor told me that it was really time to go on the Cellcept

> > > because the anti inflamitory meds were not treating the underlying

> > > issue. She has been recommending it to me for about 2 years now, but

> > > I've been fooling myself that maybe I'll just start feeling better.

> > > From what I've read on Cellcept, quite frankly I'm petrified totake

> > > it. I did fill the script, yesterday, and there the bottle sits on

> > > the kitchen table. I've read some scarey things about it and I

> > > don't know what I want to do. I'm pretty upset about how things are

> > > going right now. Just typing this post is agony. My hands are

> > > throbbing and on fire and two fingers on each hand are swollen to

> > > twice their normal size. I feel crippled. I don't want to take the

> > > meds but I also don't want to deal with this pain anymore. It's

> > > really getting to me. I can't sleep the entire night because the

> > > pain wakes me up and it's becoming an issue trying to make it

> > > through the day (and keep up appearances so I don't look like a

> > > wreck at work even though that's what I feel like on the inside).

> > > It's not only physically draining but emotionally draining as well.

> > > I'm tired of being in pain all the time and tired of having to hide

> > > it so I can cope in daily life. It's not like I can cry at work and

> > > I have to work so I just bury my pain and deal with it.

> > >

> > > I've never joined a group like this as I've always felt that I could

> > > manage on my own, but I realize now that I can't. My boyfriend is

> > > supportive and loving as is the rest of my family, but I know that

> > > the don't fully understand the depth of the pain and the fear I have

> > > about having to take a medication that increases your risk of

> > > infection and worse, cancer of the skin and lymphoma. How do you

> > > explain that to someone?

> > >

> > > Anyhow, what I was hoping to gain from all of this was some insight

> > > from people who have been on Cellcept. What has it been like for

> > > you and how are you dealing with it. Is there anything I should

> > > avoid or be aware of going into this treatment? Have you had to

> > > deal with different side effects? I know that everyone reacts

> > > differently to medication, but at this point I just want to be able

> > > to talk with someone else who has had to deal with this.

> > >

> > > Thanks,

> > > Terese

> >

> >

>

>

>

>

> ____________________________________________________________________

> ________________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

> ------------------------------------

>

>

[Guest guest]

Terese, I don't know anything about Cellcept but I do know about your

pain and your fears of side effects of these crazy drugs. I've had RA

for 26 years and am quite debilitated now. Living with pain is no

picnic and you are never sure if the drugs are worse than the disease.

I nearly died while taking Enbrel a few years ago. I sure wish we had

more answers. Hang in there, friend. You have good support here.

Suz