View Full Version : Life Alterations while on Cellcept, Cytoxan, etc for kidneys

04-01-2008, 10:10 AM
I am having a kidney biopsy in two weeks. Drugs like Cellcept and Cytoxan have been suggested based on the results.

How horrible is it to be on those? I guess my two main concerns are:

1) Should I go ahead and start shopping for a wig now?

2) How does it change your lifestyle?
For example, I was planning to take my kids to the pool a lot this summer. Do I need to stay out of the pool while on these medicines? We were talking about going to Dollywood; will we need to cancel because either I'll feel horrible, and/or will need to stay away from groups of people?

3) Typically, how long does one stay on a drug like that? Months? Years?

Redhead (Jenny)

04-03-2008, 09:20 AM
Hi Redhead;
Cellcept; Patients receiving immunosuppressive regimens involving combinations of drugs, including CellCept, as part of an immunosuppressive regimen are at increased risk of developing lymphomas and other malignancies, particularly of the skin. However, this risk is directly related to the the dosage and duration of immunosuppression, rather than to the use of any specific drug. As usual for Lupus patients, exposure to sunlight and UV light should be limited by wearing protective clothing and using a sunscreen with a high protection factor. I've never heard of any precautions about being in the pool. The most common side effects are (and they all do not happen to everyone): diarrhea, constipation, nausea, indigestion, headache, cough, acne, hair loss, itchy skin, dizziness, shaking, inability to sleep, anxiety or depression. Serious: signs of infection (fever, inflammation, sweating, chills or flu-like symptoms), signs of anaemia (excessive tiredness, dizziness or pale), swelling in legs, arms or face, bleeding, urinary infection, blood in urine, irregular heartbeat, chest pain, cold sores, vomiting, stomach, back muscle or other pain, skin changes, especially in moles or freckles.

Cytoxin (Cyclophosphamide) is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Cytoxan is classified as an "alkylating agent." Cytotoxic drugs, such as methotrexate, Cytoxan, and Imuran are used to treat Lupus, rheumatoid arthritis and some other rheumatic diseases. It is in the class of medications referred to as immunosuppressants medicines that can decrease the immune response in diseases such as Lupus.
Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder. If you choose Cytoxan, try to drink 3 or 4 liters of fluid a day to help prevent bladder problems. The extra fluid will dilute your urine and make you urinate frequently, thus minimizing the Cytoxan byproducts' contact with your bladder. Cytoxan may cause many side effects, but it is well tolerated by most patients. It may cause an upset stomach and its use may cause the cell count to decrease. You may have an increased risk of developing malignancies including leukemia, bladder cancer and other tumors. Cytoxan may also cause temporary or permanent sterility in both women and men, preventing them from having children. It may also cause damage to a developing fetus if a woman gets pregnant unintentionally while being treated with the drug. Cytoxan also predisposes a patient to develop shingles, which is a painful, blistering skin condition. It can cause hair loss. Cytoxan may predispose you to develop unusual infections, particularly when it is used in combination with high doses of steroids.

Immunosuppressive and cytotoxic drugs are used for two major reasons. First, they are potent drugs that help to reduce disease activity in skin or internal organs. Second, they may reduce or sometimes eliminate the need for steroids (such as prednisone). Steroids used alone to treat major involvement must sometimes be given in high doses. This increases the risk of both short-term and long-term side effects, which may sometimes be worse than the disease itself. Immunosuppressive drugs can be used either in addition to, or instead of, steroids to lower the amount of steroid needed and often spare you many of the undesirable side effects of steroid therapy.

I hope that I've answered your questions. Please let us know if you need anything further.

Peace and Blessings

sick n tired
04-03-2008, 11:47 AM
Hi Jenny,

Perhaps you will be one of those who doesn't lose the hair....but...I would look around now if it were me...

I know that you will need to stay out of the sun as much as possible. Dollywood has many trees and seems quite shaded compared to other theme parks. I love the feel of it.... You might like to go to a web site called coolibar for clothes. www.coolibar.com. These are the best for us when we are out in the sun. Also a very strong sunblock (no less than 50) hat and sunglasses....you can look like a movie star. :)

Wishing you the best,


05-20-2008, 10:11 PM
I went on cytoxan as a kid once, and did NOT lose all of my hair, although it did thin out.
I'm now on cellcept for lupus nephritis, and I have ALL of my hair.
I was scared about going on these drugs at first, but my lupus was brought under control. Don't freak out about being on these medications, they're being prescribed to you to help you out!

sick n tired
05-21-2008, 08:12 AM
Hey Jenny,

I went to Dolleywood May 10th when I was passing through Tennessee. I managed and there is some shade as opposed to other theme parks. I hope that you and the kids still go and have fun. It is a beautiful area of the USA.

Take care,


05-21-2008, 09:34 AM
I also had great success on Cellcept with minimal problems. I had to keep food in my stomach or I would get "medicine tummy" sometimes, but other than that, it worked like a charm for me!

Pretti in Pink
05-21-2008, 01:42 PM
I'm on plaquenill and cellcept and I don't seem to be having any problems from it right now. I was also on cytoxan as well and it seems I had more side effects from it.

07-03-2008, 05:58 PM
I am on cellcept becuase I have an allergy to plaquenill--yeah go figure---I have to be the one in a million--whats new??? lol

I have been on cellcept and low does of pred. for almost a year. I have most of my hair and I have not gained wait--nor have I lost any--fair is fair.............

07-30-2008, 09:13 AM
there is no need to be afraid.... some people dont lose their hair. I have had 2 seperate treatments of cytoxan that lasted over a 6 month period. The first time I didnt lose my hair. The second time i did. next month i will be going in for my last treatment but for the meantime i wear wigs. Its nuthin to really worry about because the hair does grow back, sometimes better then it was before...... as far as going to the pool, i am a 20 yr old water baby lol!!! i stay in the pool and it doesnt effect me so i dont think yiu will have a problem with taking ur kids 2 the pool this summer!

God Bless!!