cellcept and Lupus

Hello everyone,
Thank you for your post and sharing your thoughts.
I have had lupus for 25 years and I was diagnosed when I was 24. They did not have cell cept back then and I was treated with high doses of intravenous steroid (Solumedrol) with Cytoxan because I immediately developed Lupus Nephritis. I was also given high doses of steroids for many years to try and keep me in remission.
These drugs are highly potent and toxic to your immune system because they also kill good cells. The drugs caused me to have premature ovarian failure and I went into premenopause at age 30 and later developed asteopenia of the spine and hip as a result of all the toxic drugs. Since I was diagnosed with lupus, I’ve had 4 kidney biopsies and the last one in 2008, my nephrologists perforated my gall bladder and they could not determined what happened for 4 days while bile was poisoning my inside. This was a doctor who treated me for 7 years and he treated me like a daughter but this was my first biopsy with him. My former nephrologists moved to Florida. This 2nd doctor was formerly chief surgeon at a very prestigious hospital. He was extremely sorry and said this never happened in his 40 years of practice.
I just came back from the hospital today from another lupus attack and I nearly lost my kidneys. Prior to this attack I had 30% use of my kidneys. My new neurologist did not think it would be beneficial at this stage to have a 5th biopsy given what happened in 2008 and that I have over 50% of scar tissues in my kidneys. So a team of doctors recommended I also add cell cept to my regimen in addition to all the other medications I'm taking because I can’t continue to live a life of lupus roller coasters with fewer and fewer remissions. A few years ago my Rheumatologist suggested cell cept during one of my bad lupus flares but I decided against it after researching the sides’ effects. Given my lupus history and that I’ve had so much steroids, cytoxan and hormone replacement therapy (HRT) over these years, my risks of cancer have increased tremendously so the thought of cell cept scares me to death.
In addition to fatigue, soar throat, arthritis, achy bones and muscles that I suffer from my lupus all the times, my lupus also blessed me with skin and facial rash, periocarditis, hashimoto, vasculitis, episcleritis, Osteopenia of the spine and hip. For the past two years I've also been suffering from reoccurring lip soars every other day, periodic stomache inflammation and I developed lymph nodes throughout my body. Doctors took cat scans and confirmed that the nodes are benign and that it’s common among lupus patients.
So now I am on line reading about cell cept again and trying to determine if I made the right decision to try this medication that I'm deathly afraid of. I would greatly appreciate if anyone out there whom has used cell cept for a long time could share their experience and any information their doctors have shared with them.
I wish you all a blessed life and that God give you the strength to manage and cope with your lupus.
Warmest regards,
Another Lupus Patient
NY

Ashleigh wrote:

Hi Im Ashleigh. Im a 19 year old female in a 7-yr med program whos lost most of her drive to do much of anything.
I was diagnosed with lupus nephritis only 3 months ago, and living with it is scary. I thank you all for making these postings--reading them kinda gives me a glimmer of hope. Im here only to share in hopes that my words can also help someone else living with lupus...
Im currently taking cellcelpt 1000mg daily with plaquenil and prednisone 15mg along with a coctail of about 8 other pills.
Lupus nephritis is painful...and debilitating. Especially for a young person like myself.
I just wanted to comment and say that with taking cellcept,yes, pains do go away temporarily...but if i miss a dose by only a few hours, im struck with a severe headache. When I do take the meds though, I get a severe stomach ache.
Its a lose-lose situation in my eyes. I would not reccommend cellcept in such high doses to anyone. It could possibly just be my body chemistry making me feel like an addict in withdrawl when im a few hours late taking the cellcept, but i think its the medication itself.
good luck to everyone.

Hi Ashleigh,

I hope you are feeling better by now and are pursuing your medical career. Thank you for posting and sharing your experience.

I am new to this forum and I just posted my first message. If you still visit this site, I would love to hear how you are doing and if you are still taking 1000 mg of cell cept since you posted this message.

If you read my post, you'll see that I’ve had lupus nephritis for 25 years but I was treated with intravenous solumedrol with cytoxan back then because cell cept was not available. I have stage 4 kidney disease and I'm also a long time user of prednisone, HRT and many other toxic drugs for related lupus conditions. All these medications caused me other illnesses. Please read my post for details. So now I'm considering cell cept again after declining its use a few years ago because I’m deathly afraid and concerned about risks of cancer. I used cytoxan, steroids, and HRT for many years and I’m still on HRT and they all increase my chances of getting cancer. I would greatly appreciate it if you could give us an update to your post and share your latest experience and let us know how you are doing if you are still taking cell cept. Many thanks and best wishes.

Warmest regards,
Another Lupus Patient

Hello,

I am still pursuing my medical career, although things have gotten very difficult to juggle. My lupus is no longer affecting my kidneys. My nephrologist said it went into remission about one year ago.
I am no longer on cellcept because I was diagnosed with interstitial lung disease a few months ago. it started with a complaint I made to my nephrologist about difficulty breathing when walking. He ordered a chest xray. It came back abnormal and I was referred to another specialist. I underwent two chest ct's and was told to start iv cytoxan treatments once monthly.
Recently, I have been having bouts of severe abdominal pain and have been hospitalized on 4 different occasions for the same complaint. Since all the tests done came back normal, my GI specialist attributes it to non motility in my intestines. I am on senna and reglan to help with this.
My skin has also been changing rapidly over the past months. My dermatologist diagnosed me with Morphea; And more recently vitiligo on my face. I use topical steroids for this and it seems to be regressing. I am not sure what is causing all of these problems to happen to me all at once, life is hard, and I just hope things will get better soon.

Overall, I don't experience much lupus related pain in the joints like I used to. Right now I'm trying to cope with the fatigue, abdominal pain, and obvious changes in my physical appearance. The changes in my looks worry me most because now it is noticeable and I get more and more questions/stares from classmates and even strangers. I am also worried about fertility since I am only 21 now and getting chemotherapy (cytoxan).

Hi lia,

I looked up dr furman and called his medical office. They do not accept Any insurance and charge $580 for a 60 minute appointment. My family cannot afford such costs with my other medical expenses rising each week.

I was wondering if you went to his office or just bought things on his website. If so, which items? Are you still using his method? if so, have your doctors noticed a difference health-wise? And how do you feel now physically?

I'm so sorry your daughter has to fight this disease so young. I read in your notes that she is/ or was on steriods. If still on prednisone so young, that's not ok, it damages the bones. Hopefully I read that wrong, but if not contact your doctor right away so she can start getting off of it.

You are both in my prayers, Terri

I've had Lupus for most of my life, along with Sjogrens. I've been on Cellcept for over 10 years without a problem! If you have Blue Cross/Blue Shield you can use their mail order service and it only costs $80.00 for a 90 day supply.

I tried cellcept, but I got severe stomach and intestinal cramping and could not continue. I went on cytoxan IV for 2 1/2 yrs, 10 mons. each yr. and it helped me decrease prednisone from 40mg a day to 20. this was 15yrs ago, I have been dx'd for almost 20. The best advise I want to give is make sure your doctor is watching your bones. Mine are so thin I have spontaneous fractures. My hip broke in my sleep last Nov. 2yrs before my pelvis broke. most vertibrae and ribs have fractures, and the list goes on. It is important to check blood levels of calcium and vit.D. or bone does not regenerate. I will be going on a med that is injected and will help build bone. Please get bone density tests and the blood tests and watch your bones. I finally retired from nursing, disabled and I feel much better. It takes a lot to be kind to ourselves. God bless you all. Terri

Been on Cellcept and plaquenil for over 5 years-feel great and no side effects-diagnosed 25 years ago with systemic lupus and went the prednisone route initially-Cellcept and plaquenil combo is the best thing that I ever did for the disease.

Long time lupus sufferer wrote:

Hello everyone,
Thank you for your post and sharing your thoughts.
I have had lupus for 25 years and I was diagnosed when I was 24. They did not have cell cept back then and I was treated with high doses of intravenous steroid (Solumedrol) with Cytoxan because I immediately developed Lupus Nephritis. I was also given high doses of steroids for many years to try and keep me in remission.
These drugs are highly potent and toxic to your immune system because they also kill good cells. The drugs caused me to have premature ovarian failure and I went into premenopause at age 30 and later developed asteopenia of the spine and hip as a result of all the toxic drugs. Since I was diagnosed with lupus, I’ve had 4 kidney biopsies and the last one in 2008, my nephrologists perforated my gall bladder and they could not determined what happened for 4 days while bile was poisoning my inside. This was a doctor who treated me for 7 years and he treated me like a daughter but this was my first biopsy with him. My former nephrologists moved to Florida. This 2nd doctor was formerly chief surgeon at a very prestigious hospital. He was extremely sorry and said this never happened in his 40 years of practice.
I just came back from the hospital today from another lupus attack and I nearly lost my kidneys. Prior to this attack I had 30% use of my kidneys. My new neurologist did not think it would be beneficial at this stage to have a 5th biopsy given what happened in 2008 and that I have over 50% of scar tissues in my kidneys. So a team of doctors recommended I also add cell cept to my regimen in addition to all the other medications I'm taking because I can’t continue to live a life of lupus roller coasters with fewer and fewer remissions. A few years ago my Rheumatologist suggested cell cept during one of my bad lupus flares but I decided against it after researching the sides’ effects. Given my lupus history and that I’ve had so much steroids, cytoxan and hormone replacement therapy (HRT) over these years, my risks of cancer have increased tremendously so the thought of cell cept scares me to death.
In addition to fatigue, soar throat, arthritis, achy bones and muscles that I suffer from my lupus all the times, my lupus also blessed me with skin and facial rash, periocarditis, hashimoto, vasculitis, episcleritis, Osteopenia of the spine and hip. For the past two years I've also been suffering from reoccurring lip soars every other day, periodic stomache inflammation and I developed lymph nodes throughout my body. Doctors took cat scans and confirmed that the nodes are benign and that it’s common among lupus patients.
So now I am on line reading about cell cept again and trying to determine if I made the right decision to try this medication that I'm deathly afraid of. I would greatly appreciate if anyone out there whom has used cell cept for a long time could share their experience and any information their doctors have shared with them.
I wish you all a blessed life and that God give you the strength to manage and cope with your lupus.
Warmest regards,
Another Lupus Patient
NY

I have a problem with a non-medical person telling a mother what her child should and should not be on. I know she has knowledge, but mom needs to know that getting opinions and prescription advise are two very different things. I would suggest she ask her doctor questions based on previous knowledge all of us have collected. What does and does not work, what caused harm and what helped.
We all want to save eachother from suffering, especially a child. Mom, gather questions from all you hear and take them to your daughter's doctor. It may help him or her listen in a different way and come up with a better plan. Prayers to your daughter and to you. I have had lupus for 20yrs. We teach eachother how to live.
terri

I have been on Cellcept for 1 year- 3,000 mg a day. It has been very effective in controlling my Lupus and my Lupus Nephritis, which was at a very advanced stage. Unfortunately, it has lowered my immune system to the point where I am almost always sick. I get a virus, infection, flu, or cold every single month. Does anyone have any suggestions for fighting infection while on Cellcept?

If you want to learn more about cellcept and Lupus
How to use
Drug Class and Mechanism
Missed Dose
Storage
Warnings/Precautions
Possible Side Effects
Drug Prices
Get 10% discount pharmacy coupon! Coupon code: newyear
http://cpcctoday.com/cellcept and Lupus
We thank you for visiting!!!

For the nausea for your little one, I highly recommend Ginger tea.
The ine that doe swonders to me is called Ginger Aid by Traditional madicines.

They sell it at amazon for cheaper than grocery stores. It mght be strong for the first 2 minutes
but stops the nause within 30 minutes , She can take 3 cups a day.