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[Psyborg]

Thank goodness you were able to get to a specialist.

[Sangye]

I'm hugely relieved you're at CC.

[elephant]

I am so gald too that your are with Dr Langford and she will take good care of you. Your going to be alright!

[alhartzler]

Well I started Cytoxan yesterday morning. I'm wondering how long before I will know if/how I'm going to tolerate this drug. So far no major problems, just some stomach upset, but not severe. Drinking tons of water. Also wondering if I'll be able to go back into a surgical/inpatient hospital environment for work while taking these drugs. Doc said would be a high risk. I just don't know how to make that decision. Wondering if anyone has any input. Anyway, so far doing ok. Any experience or input on things that I may expect with this regimen would be welcome. I've done the associated reading on general information about the drugs so far. But, it always helps to hear other people's personal experiences and opinions. Thanks for all the warm wishes.
Angela

[Hal]

Hi Angela, here were my instructions on the Cytoxan, some of which you already know I am thinking:

1) Drink 2 litres of liquids per day. I started by measuring 2 litres of water in a jug, and anytime I took a drink of water, juice, coffee, tea, soup etc deducted it from the jug. After a while I was able to judge how much I should be drinking. My general rule of thumb evolved into "pee, then refill !" Basically, do not make it a chore.

2) Virutally all my doctors told me I would be at a higher risk of infection, as the Ctx took affect and lowered the white blood cell counts. They told me that at any sign of a sniffle from a potential infection/cold, to head immediately to the doctor or the ER, as patients in this condition could potentially deteriorate quickly if an infection took hold. My family doctor told me to "stay out of circulation", which I have been doing. I would tend to heed that advice...

3) I personally had minimal side effects. Some mornings the stomach was upset for a little while, and after several months my hair got patchy, but that needs to be taken in context since I am 50 years old and it was slowly going regardless... probably hastened things a tad ... (grin).... time will tell if it now thickens up on the sides again.

I am curious what others have to say as well.... but it is a good thing overall to be taking the CTX.

Hal.

[coffeelover]

Welcome Angela,

The Mayo is a great place to get a weg/ent doctor....but it may take 3 months to get in. So try to get your doc to make that referral asap. The sooner you get help the better.
This is a good forum and remember, no questions are bad questions.
Lisa (coffeelover)

[Sangye]

I didn't feel anything for the first couple weeks, then it was like the floor fell out. I got extremely weak and weaker by the day. It continued like that for 7-8 months when I was transitioned onto mtx.

I don't agree that you should count other liquids towards the 2 liters. Particularly anything containing salt, as that will cause you to retain fluid instead of peeing it out. Nothing is as effective as water as far as clearing out the ctx. Also, I was told to pee at the first hint of anything in the bladder. You don't want ctx sitting in there at all. Hopefully you're taking all your ctx in the morning so it doesn't sit in your bladder overnight.

[alhartzler]

Well I'm glad for the responses thus far. I was told to drink lots of water, but no one mentioned 2 liters. My form just said at least 8, 8oz glasses of water per day or more. I drank 6, 16 oz bottles yesterday. I am taking the cytoxan in the morning as suggested. I'm slowly trying to come to grips with having to be out of my work/clinical setting for a couple of months. This will put me way behind my class for graduation, but I know the risk would be high with all the sick patients I would be exposed to. I guess I'm just kind of wondering if there would be any "acceptable" white count level that might allow me to be in a clinical environment??? If that doesn't sound silly. I don't think the doctor was willing to state that it would be safe under any circumstances. So, I'm just going to have to make the decision on my own really. This Wegener's has VERY BAD TIMING! Guess I'll stop whining for now. Thanks for the input everyone.

[ArlaMo]

I started on Ctx last April - initially had some nausea but that calmed down after a few weeks. I did lose quite a bit of hair - big bald patches - so I ended up shaving it pretty short and wore cute hats my mom made for awhile. Definitely tired and lots less energy than before - I have to be careful of my to-do lists getting overwhelming...and not feeling guilty when I just need a nap. I drink about a gallon of water a day to keep the ctx flushed through my system - that was the recommended amount I was given when I started (200mg ctx daily.)

As far as the exposure, I would be as careful as you can. That said, I have six children and they bring home every germ imaginable! I couldn't really stay away from them while being treated I wore a mask for awhile when going out, especially to church or the kids' schools, but that got to be a pain and I don't anymore. I've been pretty lucky as far as other illnesses go - a couple of bad ones this winter, but I decided as a mom, I couldn't live my life in a bubble and I just deal with whatever comes.

[alhartzler]

On a sidenote:
I wanted to post about my experience at the Cleveland Clinic. On my first visit, I saw 2 of Dr. Langford's fellows, who did a very thorough health history, which took an hour and a half. They went through every piece of health information that I brought with me, which included an entire packet of health records from the beginning of my diagnosis until present. (All ENT and Rheumatologist records and labs/biopsies) Then, they did a very thorough physical examination, and I gave a urine specimen. After all that, I met with Dr. Langford who also reviewed my health history, which had been input into the computer by then, and her own physical examination. She then discussed the fact that I had casts in my urine, along with protein, and wanted me to have blood tests done to show extent of kidney involvement, as well as look at the rest of my blood work/ liver function, weg's tests, etc. All the standard labs Wegener's patients normally have, with some additions. She then discussed my options and recommendations for cytoxan and rituximab. I also had a CT of my chest done, which showed some scattered small nodules. She and her fellows called me back the next morning to see her, where we discussed my labs and the drugs in detail. She then did a repeat urine test, and once again confirmed casts in the urine. We eventually settled on cytoxan due to insurance reasons, and she wrote all the necessary prescriptions, etc. I will follow up with her sometime in the future, along with my local rheumatologist and ENT. She also put me on a nasal regimen. Overall, I was very pleased with my visit to Cleveland Clinic. Everything was so efficient and very fast. (testing, labs, office wait, etc.) They were extremely thorough and informative. Thanks to everyone who recommended I be seen there. I was quite surprised by the kidney involvement, and so thankful they were able to see me quickly. I would highly recommend Cleveland Clinic to any other Wegs patient. I'm sure the other vasculitis centers are equally just as great!