Cyclophosphamide (Cytoxan)

[jmq]

I have been put on Cyclophosphamide (Cytoxan) pill to help my hearing loss after a "supposedly" ineffective Rituximab infusion (two infusions 2 weeks apart) in March/April 2021.

Drs think another Rituximab infusion would take too long to help with hearing impact since it takes 6-8 weeks to kick in and I had a sharp hearing loss on my left ear a few weeks ago.

Anyone who has been on Cytoxan who cares to share their experience with this drug. Among the possible side effects is bladder cancer so I'm a bit concerned.
I am particularly interested in answers to the following questions:

what is the treatment plan they gave you? was it the infusion or the pill? If the pill, what dose and for how long?
how do they know when to stop the Cytoxan?
do/did you take prednisone with it? If so, how much and are they tapering it?
they told me to drink lots of water. how many ounces of water are enough to flush this drug out of your system?


Thanks!
Jeannette

[Pete]

I have been put on Cyclophosphamide (Cytoxan) pill to help my hearing loss after a "supposedly" ineffective Rituximab infusion (two infusions 2 weeks apart) in March/April 2021.

Drs think another Rituximab infusion would take too long to help with hearing impact since it takes 6-8 weeks to kick in and I had a sharp hearing loss on my left ear a few weeks ago.

Anyone who has been on Cytoxan who cares to share their experience with this drug. Among the possible side effects is bladder cancer so I'm a bit concerned.
I am particularly interested in answers to the following questions:

what is the treatment plan they gave you? was it the infusion or the pill? If the pill, what dose and for how long?
how do they know when to stop the Cytoxan?
do/did you take prednisone with it? If so, how much and are they tapering it?
they told me to drink lots of water. how many ounces of water are enough to flush this drug out of your system?


Thanks!
Jeannette

I was on cytoxan for 16 months. The dosage (as I recall) is based on your weight. I took 50 mg 3x daily.

I was on 40-60 mg of pred the whole time. I regained the 15 lbs I lost at disease onset plus about 20 more.

Cytoxan is used primarily to induce remission, so you probably shouldn’t be on it more than 6 months before they change you over to methotrexate, azathioprine (immuran), cellcept, or rtx. Since you’ve been on rtx without good result, the usual protocols may not apply.

Be sure to drink lots of water (at least 64 ounces daily) and urinate when you have the urge to go. The metabolites of cytoxan are hard on the bladder. Frequent urination expels them. Also, it is wise to have a regular urinalysis so that any blood or abnormal cells are noticed quickly and addressed. While I was on cytoxan, I was getting labs (CBC, comprehensive metabolic panel, c-reactive protein, sedimentation rate, and urinalysis with microscopy) at least once every two weeks.

While I was on cytoxan, I had an episode of hematuria (blood in the urine). I had a cystoscopy to make sure nothing else was going on. Antibiotics quickly cured the infection.

Good luck!!

[jmq]

I was on cytoxan for 16 months. The dosage (as I recall) is based on your weight. I took 50 mg 3x daily.

I was on 40-60 mg of pred the whole time. I regained the 15 lbs I lost at disease onset plus about 20 more.

Cytoxan is used primarily to induce remission, so you probably shouldn’t be on it more than 6 months before they change you over to methotrexate, azathioprine (immuran), cellcept, or rtx. Since you’ve been on rtx without good result, the usual protocols may not apply.

Be sure to drink lots of water (at least 64 ounces daily) and urinate when you have the urge to go. The metabolites of cytoxan are hard on the bladder. Frequent urination expels them. Also, it is wise to have a regular urinalysis so that any blood or abnormal cells are noticed quickly and addressed. While I was on cytoxan, I was getting labs (CBC, comprehensive metabolic panel, c-reactive protein, sedimentation rate, and urinalysis with microscopy) at least once every two weeks.

While I was on cytoxan, I had an episode of hematuria (blood in the urine). I had a cystoscopy to make sure nothing else was going on. Antibiotics quickly cured the infection.

Good luck!!


Thanks for sharing that information on Cytoxan Pete! And thanks for the advice on the water intake. Thats exactly what they told me.

Yes, like you, I have to do the same labs weekly to check platelet count, etc. I wouldn't say the Rtx infusion was totally ineffective. Just did not get to the brain inflammation (inner ear included) very well. I think I needed another one but rhemy says I can't because my B-cells are zero because it could harm my bone marrow. Then Dr. Villa-Forte says it doesn't matter. i don't understand the discrepancy between the two. I tried to get them to consult with each other but, to my knowledge, it hasn't happened. My rheumy was open to doing it but they are both so busy, I am not sure those calls are at the bottom of their pile. I wonder if Dr. Villa Forte really consults with local doctors. I don't think they like to do that kind of stuff.
they should as they could learn from each other but I think doctors have big egos that get in the way.

Regarding a next Rituximab infusion, rheumy said he would give me another Rtx infusion at the end of Cytoxan treatment. We'll see.

Not sure why they are starting me on a such low dose of Cytoxan (25mg). Maybe being cautious.

I hate having to go back up on the prednisone. I was down to 12.5mg and had lost most of the weight. I don't know that I can stand being on prednisone much longer. It's been 10 months already. It messes me up my body much, I can't stand it. I will push for a taper ASAP.

[drz]

I took CTX about a year. I started with an IV and then went on oral meds. My pred was tapered down about 50 % during this time depending upon the lab results. It did finally get me into a drug induced remission and then a switch to AZA. Afterward they recommended I have my bladder scoped once a year since there is no other way to monitor for possible cancer of the bladder. The CTX does increase your risk of bladder cancer but the most people will not get it. The risk is increased the longer you take it but now they try keep the usage briefer. And it does work to reduce the GPA quicker than RTX. Starting a new med with a low dosage is good safety precaution to reduce the risk of bad adverse reaction.

[jmq]

Everyone who has responded,

Thanks for sharing. It gives me a better idea what to expect.
I'm keeping my fingers crossed that I dont have to be on Cytoxan as well as Prednisone for very long and can return to the Rtx infusions every 6 months.:unsure:

Jeannette

[J@$0N]

How was your blood work, like your CRP, ANCA, and PR3?

[jrslim]

Thanks for all the great stuff.

They are starting me on Cytoxan. I did Ritux and it helped a little, but not really. My big issue is my eye (uveitis) and the pred and rituxan did not reduce the inflammation, so Cytoxan is the next great adventure.

Did anybody here get the nausea and vomitting or any other short term side effects for that matter? Don't want to miss work if I don't have to.

Thank you again!

[Pete]

jrslim

While you’re on cytoxan, be sure to stay hydrated and urinate whenever you feel the urge. The metabolites of cytoxan are hard on the bladder. A longer-term side effect is bladder cancer. You may want your doc to give you a standing order for a urinalysis with microscopy to give you peace of mind about this.

Cytoxan is faster acting than rituximab and will get the disease under control more quickly. Once that happens, rituximab is a better choice (among others) to keep you in remission.

[jmq]

Thanks for all the great stuff.

They are starting me on Cytoxan. I did Ritux and it helped a little, but not really. My big issue is my eye (uveitis) and the pred and rituxan did not reduce the inflammation, so Cytoxan is the next great adventure.

Did anybody here get the nausea and vomitting or any other short term side effects for that matter? Don't want to miss work if I don't have to.

Thank you again!


I did not get any nausea or vomitting side effects from Cytoxan. Just lots of hair loss.
Agree with Pete, make sure you measure your water intake and take lots of water. I took Cytoxan because they had to act quickly and I didn't have the time required for RTX to work.

Hope the treatment goes well!

Jeannette

[jrslim]

Thanks Pete! You have lots of great stuff on here.

[jrslim]

Hello Everyone,

I've had 3 infusions of cyotoxan and progress on my GPA isn't what my rheumy would like to see, so she is considering putting me on the oral version. I would love to hear more about strengths and weaknesses of this approach. My rheumy says I'll take regular doses every day and while it will hit the GPA harder and more consistently then my monthly infusions, it will have more intense side effects. Would love to hear about your experiences.

More about me:
- I'm currently on 15 mg of pred daily
- My main symptom is inflamed sclera of my right eye. I go get runny noses from time to time
- The pred and the cyotoxan do a good job of controlling the symptoms, but the eye is healing very slowly
- My side effects from cyotoxan have been tiredness for 2-3 days, a bit of nausea, a slightly reduced immunity, nothing that has kept me from living my life.
- Being treated by UCLA (University of California, Los Angeles) doctors. Great job by them.

Thank you in advance. Y'all have a great day!

[Wegetarian]

Did anybody here get the nausea and vomitting or any other short term side effects for that matter? Don't want to miss work if I don't have to.


When I had CTX infusions they would give me pills for the nausea, and a couple of pill to take home for the next time. Once they forgot to give pills home, and I was feelign quite nauseous for the next day.

To my understanding they no loger give it at all in the pill form in my country. Hopefully you'll be able to swith soon to another med.

BTW, one of the nurses suggested I'd flush the toilet twice after urinating after an infusions, as she said its quite possible that some of the CTX could vaporize into the air, which wouldn't be that great as I ahd young children at home. Haven't heard that elsewhere tough, but maybe its not a bad idea anyway.