cellcept and Lupus

[julie]

I have a 14 year old daughter with Lupus.
She was diagnosed at the age of 7 and had pericardis at 5. So she is told she probably had it since then.
She was on major steroids and in the last 3 years has been on Cellcept. She takes 750mg daily and is on 200mgs Plaquenil. She is always feeling sick to her stomach and has been given Zofran to stop the nausea. Wondering how long she can continue like this and if anyone else has the same issues?? Has Cellcept been a relief to anyone and does anyone know what new health issues could come from her taking this for so long???

[Adriana]

I have had sle lupus for about 4yrs.I am currently taking Plaquenil and Cellcept.I also had pericarditis.I'm so sorry to hear that your daughter had to deal with percarditis,it was very painful to me and extremily scary as I thought I was having a heart attack.When I was on steroids I was always sick with nausea also.Currently I'm not on steroids and the cellcept and plaquenil is working out great for me.I don't yet know of any new issues that could arise from long term use of cellcept.I think your daughter will be fine.

[Adriana]

I also wanted to add that If your daughter is on plaquenil,steriods,and especially cellcept it sounds like her lupus is very active,if that's the case well then it's more beneficial for her to be on cellcept and remain on it her she's in remission and possibly beyond.It's better to be on cellcept than not because if her lupus is active her organs could be attacked and she nor you may not even be aware that it is happening.Cellcept and Plaquenil together slows down the lupus disease activity and it keeps it at bay and from attacking the organs.

[Krc]

I am also on Plaquenil & Plavix (thins the blood) as I thought I was having a heart attack as well. When I found out that I had lupus, and it was hard to breathe, my dr. put me on steroids, plaquenil & plavix. Very rarely do I have problems breathing and I live in TX.(allergies)
Cell Cept is another one of my meds and I have had no side effects.
Good Luck & God bless

[Whozitsdad]

I applaud all of you. Lupus is definitely a debilitaing disease which can be a nightmare to treat. My wife was DX 11 years ago. She went through the chemo for two years (Cytoxan), the prednisone, plaquenil, Imuran, and the rest I forget. After the chemo, she decided enough was enough and went off all meds.

For a few years, all was pretty darn well. Up until a year ago and it has been down hill.

400mg plaquenil
200mg topomax
15mg prednisone
500mg cellcept
10mg lexapro
200mg folic acid

She's doing well but the methotrexate hasn't been effective.

Good luck to everyone.
Terry

[Melanie]

I have had lupus for almost 5 years, along with rheumatoid arthritis and insulin diabetes. I had pericarditis and have had a mild stroke. For three years I suffered nightmare pain, to which high prednisone, methatrexate and a few immuno-suppresent drugs did nothing.My doctor said I lived in flares and occasionally had an occasional few "better" days. My rheumatologist said he had only seen two other cases that were as severe as mine in 18 years of practice. I only say that to say this: When finally put on CellCept, my world turned around. I still have various aches and pains from other conditions, but CellCept proved to be the miracle for which I prayed. I could move and not cry, moan, or yell. My husband no longer had to dress me and feed me, and I actually felt I came back from the dead. I understand it does not have that affect on everyone, but if you are desperate, at least try it. With the torture that I had lived through, if I had any of the small side effects, I certainly didn't know or care!

[priyanka]

i have had SLE for 2 years and i also have pericarditis, i started taking cellcept 10 months ago and it has helped proteins and blood clear from my urine as kidney was involved before its use and my kidney is perfectly fine now, i used to take big dose of cortiosteroids then now its been tapered to 3mg, and plaquenil taking it regularly. so i say cellcept is very helpful and i do not see any side effets until now.

[LupusHubbyBo]

My wife's had sle lupus for 9+yrs. She began taking cellcept 6 months ago. She has upset stomach since starting and constant headache. I hope your daughter is doing better julie.
Cellcept 750
Plaq 400
synthroid
several rounds of steroids
Good luck & good health

[Jiangbei]

My daughter has lupus for about 5 years, she is taking Cellcept for 2 years, now she found many swollen lymph nodes on her neck. Is it because Cellcept?

[sittingherewonde ring]

Jiangbei wrote:

My daughter has lupus for about 5 years, she is taking Cellcept for 2 years, now she found many swollen lymph nodes on her neck. Is it because Cellcept?

My husband was being treated for an unknown skin condition with cellcept... he started to have fevers swelling in legs and swollen lymphnodes... his doctor did a skin biopsy and he was diagnosed with lymphoma... if your daughter has lyphnodes i would take her and ask her doctor about them...

PSST My husband also had to sign a letter that states he will not sue the doctor when he was prescribed Cell cept becuase it does cause cancer... he was only on it for two months....

[looking for advice]

My husband was diagnosed with Lupus 2 yrs ago, his body hasn't reacted to any of the normal treatments that his dr. generally uses for his other lupus pt.'s he wants to put him on Cellcept, however I'm finding this is a fairly expensive rx, and we dont have rx coverage. We tried calling Rouch Assistance and made too much money last year to approve....does anyone have ANY advice on what to do because I've been reading and it sounds like it could really help him.

[Sue]

I was having so many episodes of Lupus and than my doctor put me on cellcept along with the predisone and plaquenil things have settled down enough to let me get back to work after a year of so I am happy with cellcept. I wish the many other people on here all the best as I know how hard it can be to cope

[nancy]

do check out Lapazol (order online ). No side effects and it works !!!
Let me know how it works for Julie.
nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know how it works for Adriana.
Nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know how it works for Adriana.
Nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know if Lapazol works for you.
Nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know if Lapazol works for you.
Nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know if Lapazol works for you.
Nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know if Lapazol works for your wife.
Nancy
[e-mail]

[nancy]

Do check out "Lapazol" . It works !!! Non-toxic, no apparent side effects.
You can order online.
Let me know if Lapazol works for your daughter.
Nancy
[e-mail]