Hot off the press... Newly Diagnosed with Wegner's

[HopeinTN]

Thanks Rose. I appreciate the info. Don't sound like a few months at a spa, but at least I'm informed.

[delorisdoe]

Thanks so much for the feedback and warm welcome. My two siblings both have Chron's and this was my disease. I still feel lucky! They both have warmed me and guided me on the Prednisone Pounds and things to look for. I drink tons of water now, so I don't think will be an issue.

For those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.

Thanks All!

I was on it for more than two years.

It made my hair thin-not fall out. My pony tail went from being as thick as a cucumber to as thin as my thumb.

It did not make me nauseous.

It did make my white blood cell count get so low that I had to have ivig treatments to bring it back up however this hapened only after being on it for 2 years so it should not be a problem for you if you do tolerate it well.

It made me tired but when I was on enough prednisone the prednisone woke me right up so that was only an issue when I began to taper the prednisone.

[RudiK]

Hello HopeinTn, I was treated with 100mg CTX, 50mg in the morning and 50 mg in the evening. I was told by my doctors that the two greatest treads/side effects were the danger of cancer of the bladder and a vastly reduced immune system. To lessen these two treads I was instructed by my doctors to stay away from large crowds, especially in confined areas, and to drink at least one gallon of water a day (at least one 16 oz bottle with each pill) to prevent a build-up toxic stuff in my bladder. I was on CTX for 5 1/2 months, I'm now on Azathioprine, the generic version of Imuran.
Rudi K.

[elephant]

Welcome to this wonderful site! We have some really knowledgeable and helpful people here who care and will help you the best they can!

[drz]

Thanks so much for the feedback and warm welcome. My two siblings both have Chron's and this was my disease. I still feel lucky! They both have warmed me and guided me on the Prednisone Pounds and things to look for. I drink tons of water now, so I don't think will be an issue.

For those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.

Thanks All!

It varies a great deal. Some lucky people seem to have no problems with it and great results. Some of us can't seem to tolerate it. I had frequent drops in WBC and had to cut dosage or stop it altogether till WBC recovered. I also had numerous bladder infections that were often very painful. It can really irritate the bladder and in some cases really scar it so looks like hamburger inside but most people who drink lots of fluids (water) and urinate often have no problems apart from reducing those nasty antibodies that are trying hard to kill you. The lower immunity does increase your risk of infections so be careful.

[Sangye]

Hi HopeinTN, welcome to the group! I'm glad you got a second opinion, too. Most important things to do when on ctx are drink a lot of water-- about 1.5 liters is good-- and pee every time you have a sensation of urine in your bladder. Don't wait for a full bladder. You have to keep the ctx diluted with all the water and keep it from sitting in the bladder.

Also, you can take ctx with food, and you can split up the dose all day. I couldn't tolerate the 150mg all at once without severe stomach pain. I had to take it 50mg 3 times a day, each time with a meal.

[aewaustin]

Also if you have a hard time taking CTX you can take pepsid with the dose. The first day I took it this go round I had a burning nasty feeling in my stomach and then remembered that pepsid helped the first time and once I took that I was fine. Pepsid is over the counter but I got my doc to give me a prescription for it so that it was less expensive.

[Al]

TFor those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.

I had pulsed CTX, not the daily oral stuff. But, by way of comparing side effects, I can say that my taste buds got damaged--perhaps permanently. On the other hand, I actually lost weight on prednisone, even with a terrifically increased appetite. (I know this is rare--the weight loss, I mean, not the appetite.)

Good luck, keep those cookies tough, and stay fighting!

Al

[Victoria]

Hello Hopein TN. Let me know if you got reply in private message.