christibro40 replied: "Hi, I am a lupus Paitent. and owner of a Lupus online support group. I have not been on cell cept YET, but it is being disscused. I have been on prednison, and had horrible side effects I could not tolerate, insulan dependant diabetes, weight gain, mood changes, moon face, I won't take, others do, without the side effects I have. I just got off 6 months of IV cytoxin, which is in the same class of cell cept, but to my inderstanding a bit harsher. I did have side effects, a bit of loss of hair, weakness, fatigue etc. Lupus is difficult, we dont have many options. I go to my dr this week, and cell cept may be part of the disscussion again. From my groups file however I did pull this article regarding cell cept and Lupus. Maybe you can gain some insight into the drug. It is an immunosuppresent, which cytoxin kinda is, it was originally classified a chemotherapy, and used for cancer, but now there are stronger cancer drugs. Cell Cept is one of the great new hopes for those of us with moderate to severe Lupus.
Here is the article
New use for immunosuppressive drug offers hope,
quality of life to
patients.
A promising new treatment for lupus challenges
the way physicians
currently treat patients suffering with lupus
kidney disease,
according to researchers at the State University
of New York (SUNY)
Downstate Medical Center.
A study published in the New England Journal
of Medicine (NEJM) this
week shows promising results of the use of
mycophenolate mofetil
(MMF), an immunosuppressive drug used primarily
to combat organ
rejection in transplant patients, in induction
therapy for patients
suffering from lupus nephritis (lupus kidney disease).
Marketed as CellCept®, which is approved by the
U.S. Food and Drug
Administration (FDA) for use in kidney, heart and
liver organ
transplant patients, MMF has been shown to
play a major role in
controlling lupus nephritis. The research published
in NEJM found
that lupus patients using orally administered MMF
demonstrated better
clinical response and did not experience many
of the severe side
effects associated with the current standard-of-care,
intravenous
cyclophosphamide (IVC), a form of chemotherapy,
which has been used
to treat patients with lupus kidney disease
since the 1970s.
For patients and physicians, these landmark
findings offer a
choice. "With no FDA-approved drugs for the
treatment of lupus
nephritis for the past 30 years, we have been
limited in our options
for patients," said Ellen Ginzler, M.D.,
Professor of Medicine and
Chief of Rheumatology, SUNY Downstate, Brooklyn,
NY, and lead
investigator in the study. "For some patients,
the side effects
associated with intravenous cyclophosphamide
treatment have been
worse than the disease itself."
The side effects of IVC therapy include nausea,
vomiting, hair loss
and infertility. Some patients, discouraged
by these side effects,
choose to forego treatment, putting themselves
at risk for kidney
failure and premature death.
Significant findings of the study include:
- - Induction therapy with MMF was superior to
IVC in inducing
complete remission of lupus nephritis
- - MMF appeared to be better tolerated than
IVC, with less severe
side effects
"These findings give us renewed confidence
in treating lupus kidney
disease and helping patients maintain their
quality of life," said
Sandra Raymond, president and CEO of the Lupus
Foundation of America,
the nation's leading non-profit organization
for lupus. "This is
encouraging news for the millions around the
world who are suffering
from the devastating effects of lupus."
Study Design
The NEJM report details the results of a
24-week randomized, open-
label study of 140 patients at 19 study sites
with systemic lupus
erythematosus who had advanced stages of lupus
nephritis.
Investigators compared the effectiveness of an
oral dose of MMF as
induction therapy to that of the IVC treatment.
At the start of the
study, 71 patients received MMF and 69 patients
received IVC;
patients failing to improve in at least one key
area after 12 weeks
were converted to the other regimen. A total of
24 patients were
withdrawn from the study; nine in the MMF group
and 15 in the IVC
group. There were 16 complete remissions; that
is, the disease became
inactive, on MMF and four complete remissions
on IVC; 21 partial
remissions, or improvement in the still active
disease, were recorded
in patients on MMF and 17 in patients on IVC.
Adverse Events
There were two deaths in the IVC group during
treatment; a third
patient declined IVC therapy and died from pulmonary
hemorrhage and
renal failure. There were no deaths in the MMF
group. Infection and
gastrointestinal side effects accounted for most
of the adverse
events in both patient groups. Severe infections
(e.g., pneumonia and
lung abscess, necrotizing fasciitis, gram-negative
sepsis) occurred
only in the IVC group. Pyogenic, or pus-producing,
infections were
significantly less frequent among patients
receiving MMF.
Hospitalizations for vomiting and dehydration
occurred in five
patients receiving IVC. Diarrhea occurred more
frequently among
patients in the MMF group.
About Lupus and Lupus Nephritis
According to the Lupus Foundation of America,
it is estimated that as
many as 1.5 million Americans suffer from lupus,
a chronic autoimmune
disease that causes inflammation and tissue damage
to virtually any
organ system in the body, especially the kidneys.
Although lupus can
strike in men and women of all ages, lupus occurs
10 to 15 times more
frequently in women. Symptoms vary and the cause
of lupus is not well
understood, though researchers cite a combination
of genetics and
environment as possible factors. Lupus nephritis
is a medical term
for lupus that affects the kidneys. It is the most
common severe
complication of lupus and affects approximately
one third of lupus
patients.
For more information about lupus, please
contact the Lupus Foundation
of America at 202-349-1155 or visit the
organization's website:.
About SUNY Downstate Medical Center
SUNY Downstate Medical Center is the only academic medical center in
Brooklyn, Queens, or Staten Island, comprising a College of Medicine,
a College of Nursing, a College of Health Related Professions, a
School of Graduate Studies, and University Hospital of Brooklyn.
About the Lupus Foundation of America
The Lupus Foundation of America is the nation's leading nonprofit
voluntary health organization dedicated to lupus. The LFA has a
nationwide network of nearly 300 chapters, branches and support
groups located throughout the United States. The National Office is
located in Washington, D.C.
Jen Acer
Ketchum
ketchumcomms.co.uk
MIND YOU, CELL CEPT IS NOT ONLY USED IN LUPUS PAITENTS WITH KIDNEY INVOLVMENT. AND I KNOW OF NO ONE WHO HAS DIED WHILE ON IT.
Good Luck
If you need support come check us out the link for where the article came from in our files and our group is below.
Chris"
sistermegan replied: "I have not taken CellCept, but I have taken Prednisone, Methotrexate, Imuran and Cytoxan. I understand that CellCept is similar to Methotrexate, Imuran and Cytoxan since they are all Immunosuppressives.
Methotrexate is the least problematic of the three Immunosuppressives (to me). I still had fatigue, nausea, low blood counts and some other problems...
Prednisone made me hungry all the time (which was nice to me because usually I am nauseated and don't feel hungry at all) and it also made me feel "puffy". I was also really cranky and tired all of the time. Prednisone did make me feel better over the long run, but over the short term it was kinda a pain.
The thing is that you need to talk to your doctor about your treatment options... and don't be afraid to try out new medicines if your doctor recommends them... talk with him or her about your concerns, what side effects you don't mind and which ones you can't tolerate, and keep communication open during your entire treatment plan.
Don't be surprised if you begin taking a med and find out that you need to adjust the dose several times before you get to a good place. (You might even have to switch out meds.)
Good luck and I hope your treatment brings you health!"
Taking anabolic steroids if you have lupus? Hey everyone well heres my question I have tried every other type of protein,cretein, working out even with a trainer and nothing has really worked for me, I have lupus and am taking cellcept medidcation, I just recently got off of prendazone? I was just wondering if it is a bad idea to take (winstrol the steriod i plan on using) if I have lupus or while I am on this medication.
Black Coffee Blues replied: "I think it's a bad idea full stop mate. Steroids can really mess with your body and mind. The people that say they're ok and that 'everyone does them' aren't necessarily right. You have to weigh up the pro's and con's on your own - and even without an auto-immune disease they'd be a bad idea imo.
I'd suggest you google it and look for 'bad experiences' as they can teach you more. Like scientists seek to 'disprove' their own theory in order to check it out. You should do the same. Don't try and prove it's ok for you to do that. Try and prove that it 'isn't' ok. That's the way to get the most realistic and reliable answer that you're looking for."
Linda R replied: "Don't play with fire!!!!!! Your immune system is already screwed up because of the lupus. This is a question for your rheumatologist, but I think you already know the answer.
So, you can build this buff body using the anabolic steroids, it will look lovely in your coffin."
Is there anyone taking CellCept? If so, how long did you take it and what symptoms did you have? SERIOUS REPLIES ONLY. THANKS!
Hi, I was diagnosed with lupus almost 2 years ago after over 11 years of dealing with various symptoms and flares and kidney disease. Right now I am only taking 1/2 a 250 mg chloroquine tablet once a day but I still have pain and fatigue and my sed rate is going up slowly, which it does during seasonal changes. My doctor wants me to start chemo or steroids, which scares the crap out of me. I saw online that there is something called CellCept that may work to reduce lupus symptoms that may have more tolerable symptoms than chemo, but I don't want to jump into anything. Can someone who has lupus who has or is using CellCept tell me if it works, how long it works, if you experienced any really bad side effects and if so did you recover? And did the lupus come back? Thank you for your help.
DaBoomvang replied: "Hi
I do not have Lupus, but I do have a similar auto-immune disease. I can imagine we take the same drugs for the same reasons, because our auto-immune systems are out of controll and need to be supressed,
I have been taking methotrexate (aka chemo), and it's been absolutely horrible. The side effects of nausea and vomiting were miserable. Plus, I was sooooo tired. I would sleep for 18 hours, get up, and need a nap within 2 hours.
Just today, I am starting a new medication... Cellcept!
I am hoping for the best. I dont know what to expect. I dont know what side effects to expect either. I can let you know though!
The worst drug I've ever had to take though, was prednisone (steropids). I would recommend you do ANYTHING to avoid taking it! I gained 20 pounds in weeks on it, and it was not because of over eating! The drug makes you gain weight. AND... it redistributes your fat into your belly - so now I have a beer belly. :o( I gained 3 inches in my waistline. Dieting wont help - there is nothing you can do to avoid it.
I wish you the best as you battle your fight! I hope you fight the fight! Good luck,"
mgnysgtcappo replied: "My wife has been taking cellcept for her Lupus for the last two and a half years with little side effects. She was a little sick to her stomach at first but now it really doesn't affect her. It has done wonders for her Lupus flare ups though. She hasn't had kidney involvement since being on the drug and she is only taking 5 mg of prednisone right now. She also has antiocardiolipid syndrome and takes coumadin to thin her blood. If you have any more questions or would like some more detailed info please feel free to email me"
What if I don't remember if I took my Cellcept dose this morning? I have SLE, and take 2 500mg Lupus pills in the morning and 2 at night. (2g total each day.)
I can't remember if I took my dose this morning. Is it a better idea to take it again, even if it turns out I already did? Or not take it again and find out I didn't?
daddyrx replied: "Unless you are absolutely sure you missed a dose, skip the missed dose. You are better off losing a dose than taking an extra."
mgunnycappo replied: "Do not take the dose as it may cause you to double up which could lead to severe problems. Missing a dose isn't that big a deal as Cellcept stays in the body for about 3 days. You will be fine if you take it tomorrow morning.
Good Luck to you!"
hope1385 replied: "i would agree with the others, just take it at night, and dont double the dose."
Can you have a babies when you have lupus? Is it possible withought endengering my fiances life she was diagnosed last year she was only 16 now shes 17 and they told her she wasnt going to be able to that the baby or her can die. She is on warfarin,steroids,cellcept,diovan.
The Doc replied: "Ah, well, although some people with lupus can become pregnant, it sounds like your wife also has a hypercoagulable state (possibly APLA syndrome as well?) which can be caused by lupus. This would put both her and her fetus at risk during a pregnancy, and it's probably a bad idea. With a disease like that, it is very important to discuss any plans to become pregnant with her doctor - at the very least it would mean a change in her medications, and if they say that it's a very high risk, than you should really think of other options, sometimes the risk is just too great. Listen to her doctors, even if you don't like the answers they give, sometimes the risk of pregnancy can be very great."
LaceySue replied: "I have a similar disease.. autoimmune hepatitis. I had a liver transplant last year.. and I am on prednisone, cellcept, among other things... My doctors have always said it is possible. You just have to be very careful. And it really depends on health, not the exact perfect time emotionally. When she is healthy enough, and in a good stable place, she will more than likely be able to. It will be a high risk pregnancy, and she will probably have to do some medication juggling, but I know it can be done. Just be patient, and it will happen. I am also a nurse, and have SEEN it happen. She won't be able to breastfeed most likely, but thats one small sacrifice. Another option you can look into if you don't want to wait for a perfect healthy time is a surrogate mother. It is a beautiful idea. Good luck.. and give her my prayers."
Virginia F replied: "The doctors most likely know what they are talking about. The medications make a pregnancy difficult and dangerous, taking your fiance off the medications can endanger her. It's very upsetting when you want children, and if having your own children rather than adopting is really important to you, discuss a plan with your doctor and see if some medications can be changed around once she is stable to get pregnant. However the risk might be too great."
mgnysgtcappo replied: "Your fiance is on Warfarin, a blood thinning medication. She is on this because she has a secondary disease called Antiphospholipid Syndrome or APS. APS often piggybacks with Lupus and is also a very serious disease. It causes a coagulation problem with the blood, causing blood clots to form. If left untreated a person can have a blood clot that travels to the brain, heart or lungs which will cause death. Many women with Lupus tend to have miscarriages and many doctors now believe that the women more likely to have miscarriages are those with APS. Having a child with only Lupus can be difficult but when you add APS you're asking for trouble. There is a much higher incidence of heart attack and stroke in APS patients when delivering.
Additionally Warfarin causes birth defects as does Cellcept. Both medications would have to be discontinued if she were to become pregnant. She would have to take heprin (an injectible blood thinner) until after pregnancy. Also she would need to stop taking her Cellcept.
I understand her want and desire to have children. My wife and I have two. She has Lupus and APS as well and takes most of the same medications that your fiance takes. We adopted our children because the risks are just too high for someone with her degree of illness. Our kids are 13 and 10 now and happy and healthy. The best thing we could have ever done. You and your fiance may want to take this route.
No one can decide what's best for you. You and she will have to talk about the pros and cons and then discuss it with a high risk OB/GYN. I wish you all the best in the world.
P.S. make sure you're using birth control (i.e. condoms until you've had the talk with your doctor because if she is to become pregnant it MUST be planned and thought out). She cannot take the birth control pill because it can increase her risk for blood clots from her APS. If she is already taking the pill she needs to stop immediately as this could kill her."
are there any lupus patients who have used alternative methods to treat there lupus with good results? I have lupus and fibromaralya. I,ve had many different symptons thru the years. I had to stop taking steroids for it, because I developed osteperosis I also take plaquinall and cellcept. Any info you can give me is appreciated kitkatz
JustMe replied: "The following all natural supplements are very effective in treating Lupus.
GLA Complex: nature's steroid - VERY IMPORTANT FOR LUPUS
Vita-C: antioxidant; also anti-inflammatory
B-Complex: strengthens glandular functions; nourishes nervous system
Alfalfa Complex: anti-inflammatory; strengthens kidneys
Optiflora: for the immune system
Zinc Complex: protects skin and organs; promotes healing
Carotomax: powerful antioxidant
Garlic Complex: immune system enhancer; protects enzyme systems
Vitamin E + Selenium: helps the body use oxygen more efficiently; promotes healing
Hope this is helpful and feel free to contact me with questions
or if interested in the brand."
Is cellcept a form of chemotheapry? I have lupus and my doctor recommend cellcept
Le replied: "Cellcept is a drug used mostly in transplant patients to help them not have organ/tissue rejection. With Lupus (SLE), the body is attacking it's own cells. No one knoew why so they are still working on the cure. In transplant patients, the patients own cells don't recognize the transplanted organ and so it will try to attack it leadin to trasnplant failure. Cellcept helps by reducing the bodies ability to attack the foreing cell. So for you, cellcept reduces your owns bodies ability to attack your own cells. Hopefully, this helps."
Remo replied: "No ,it is not a chemotherapy drug.
It belongs to the group called Antiproliferative Immunosuppressants and normally is prescribed following a kidney,heart or liver transplantation to prevent rejection.
This drug should be given under specialist supervision.
It has got a awful side effects such as bone marrow suppression (you may expect a bleed and bruise ),vomiting, loose stools,abdominal pain head ache, sleeplessness, opportunistic infections like herpes, candidiasis, UTI and pneumonia,low sugars,weight gain and many other effects.
Hope,it helps."
mary s replied: "I take cellcept 250mg, 4 caps daily for anti rejection of my kidney transplant. Maybe you should check with another dr if you're not comfortable with his decision.I was accidentally overdosed on prescription med and now I make sure all 3 of my dr's agree before I comply."
billies35 replied: "Yes Cellcept is a form of chemotherapy. Some Lupus patients especially those that have Lupus attacking their kidneys actually forgo taking cellcept because of the side effects. I am including a wonderful link I have found that can answer so much more for you than I can. Also I am an owner of a Lupus website that I would be more than happy to provide that for you as well where you can gain so much more understanding and have a ton of support for anything and everything that goes on in your life with Lupus and things without Lupus.
Here are both links.
We have a ton of members who have Lupus plus some of us with other condtions, but what we all have in common is a desire to support eachother in good times and in bad times and we have compiled a ton of information in form of files and links that are easy for you to access at a moments notice.
I hopt this helps you some."
christibro40 replied: "cellcept, is not actuallywhat would be considered a viable chemotherpay agent today. Many years ago, it would have been used to treat some types of cancer with only short term success or no success. Today it is considered an immunosuppresent, like many of the drugs used to treat Lupus and many other autoimmune diseases, it is also used in paitents who have had kidney transplants, or who have Lupus Nerphritis. Last year I was on Cytoxin, another early chemotherapy agent, now called a strong imunosuppresent. Like you cellcept is being tossed around the table at my doctors office. cellcept, is a very strong immunosuppresent, and can have many side effects, some of which I will list. But belive me, when I had my major flare of Lupus brain Cebritis last year, without one of these two drugs, I may have died. So I belive that if you are this ill and CellCept is being talked about, you may be ill enough that regardless of the side efects you may really need it. Just really ask the doctor why you need it, for how long, what form; pill or IV and what results He/or she hopes to see
here are some of the side effect, just remeber, since I went through somthing very similar last year that saved my life, it is worth it. a few months of side effects are worth it and prefered to dying (at least in my case before 40).
What are the possible side effects of CellCept?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using CellCept and call your doctor at once if you have any of these serious side effects:
fever, chills, body aches, flu symptoms;
easy bruising or bleeding, unusual weakness;
coughing up blood or vomit that looks like coffee grounds;
bloody, black, or tarry stools;
painful or difficult urination; or
numbness or tingly feeling.
Continue using CellCept and talk with your doctor if you have any of these less serious side effects:
upset stomach, nausea, or vomiting;
diarrhea or constipation;
mild weakness;
tremor or dizziness;
anxiety, sleep problems (insomnia);
swelling of the feet or lower legs; or
a skin rash"
I want to ask from mgnysgtcappo lupus question.? my wife is also on cellcept since 8 months, but and having no heart problems, but suffering lupus nephritis, and creatnine is 3.2, and having pain in kidneys, just to know that for how long did wife used immunosuppressive cellcept/myfortic. and that is she get well because of Rituxan, if yes how much she has taken per day and for how long.
Rituxan= /day/ months/years?
cellcept 500mg= /day/months/years?
is she on prednisolone now, how much she is taking?
your information will help my wife treatment
Regards.
Stephanie replied: "You arent going to like this answer but it changed my life. Read a book called You Are WHat You Eat by Gillian Mc Keith so your wife can one day be healthy again. It really does work if you follow her 11 week plan. Its not about losing weight its about being healthy."
mgnysgtcappo replied: "HI Falcon,
My wife has used Cellcept (now using Myfortic...Cellcept's time released cousin) for the last 4 years. We went off Cellcept for a year. Off Cellcept her creatine has been as high as 9+. Currently her creatine is in the normal range, hovering around 0.8 to 0.9.
I truly believe that Rituxan saved her life. Cellcept is great for maintenance but when her kidney numbers spiraled out of control, nothing seemed to bring her back. We tried Cytoxan which is the old stand by for Lupus Nephritis but it didn't work...actually seemed to worsen everything because it made her weaker.
The cool thing about Rituxan is that it targets the B Cells so the side effects are much more limited, ie..no vomiting, hair loss, loss of appetite, etc.
She had four treatments and will have another in a couple of months. Rituxan is an IV chemotherapy agent 500 mg one time per week for four weeks. Another dose at one year to seal the deal.
As far as prednisone...she is now completely off it for the first time in 15 years. She had been on maintanence steroids to keep the flares down but since the Rituxan she hasn't had to take it. Unfortunately it came a little too late as she has suffered necrosis of her femur due to the prednisone.
She is on the equivalent of 2 grams (2000 mg) of Cellcept a day...Myfortic is titrated differently so she takes 1300 mg a day of Myfortic which equals 2000 mg of Cellcept.
Just as in Cellcept there are no long term studies for Rituxan. All I can give is our allegorical evidence that it works. When in dire times you have to try anything. I am so glad that we did.
Please....anything that you need...contact me. I will do my best to answer and help out. We've been battling this disease for a long time and will share all the info we have.
Good luck and take care!"
I have Lupus. My Doctor diagnosed me w/ fibromyalgia ALSO. WHY? I have had SLE (lupus) for 1 year now and have been treated with cellcept and prednisone.
At my last Dr. appt., my doctor diagnosed me with fibromyalgia.
She did no tests or anything. How does she know?
I played football for 6 years(many injuries)--I know i have a high pain tolerance.
****She said that because my joints were not swollen, I must be amplifying the pain!!***--(amplified pain is the definition of fibromyalgia-you interpret pain as being worse than a normal person)
I am really angry that my doctor would tell me that I'm just complaining--she's always telling me to tell her all my symptoms.
IS SHE CORRECT TO GIVE ME THIS NEW DIAGNOSIS ON TOP OF MY PREVIOUS DIAGNOSIS OF LUPUS???????
dukefenton replied: "They may be related. Fibromyalgia, like arthritis, is more likely to be a common result of several different processes, than a specific disease in itself. Lupus causes generalized inflammation, which could definitely cause symptoms similar to fibromyalgia."
jt replied: "Fibromyalgia simply means literally "fibrous tissue" "muscle" "pain". Fibromyalgia is diagnosed via patient-reported symptoms, usually patient complaints of pain in specific trigger points.
Fibromyalgia isn't an insulting diagnosis. It's a description of the type of pain you're having, which is pain without accompanying inflammation.
Fibromyalgia patients do interpet pain as being worse than a "normal" person would. However, (reputable) physicians feel there is an actual physiological cause for this, not a psychological one. Amplified pain isn't just a fibromyalgia definition; it can occur with other chronic diseases too.
I have fibromyalgia. Your fibromyalgia may be a result of your SLE. I know you're angry and feel like your physician is dismissing your complaints, but the word "complaint" in this case is an actual medical term, not a derogatory one. All healthcare personnel use the term "complaint" when a patient describes symptoms.
You may want to do some reading about fibromyalgia. Try"
sPIRIT replied: "i WAS DIAGNOSISED WITH lUPUS IN 1997, AND IN 2007 THEY SAID i HAVE FIBROMYALGIA, NOT LUPUS, AND NO THEY DID NOT EVEN TOUCH ME.
SO I UNDERSTAND YOU FRUSTRATION
SPIRIT"
Linda R replied: "Fibromyalgia often occurs in overlap with lupus. They are both autoimmune. Fibro is usually diagnosed by having pain on symmetrical pressure points in the body.
If you want to know how you doctor knows, ask the doctor. We don't know what your doctor was thinking or how the diagnosis was made.
If you don't trust your doctor, get one you can trust. Lupus is too serious to be treated by a doctor with whom you do not have an open and honest relationship.
We dont' know if she was right because we don't know your symptoms and we don't know what information she used to make that diagnosis."
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