Cytoxan, the complete details with it, and it helped me somewhat

Hey dude,
There are 5% of the people with CIDP, that the normal protocol of treatments do not work. I am in that 5%.
I went through the PE, (Plasma Exchange, or Plasmaphereses), for over a year, with no help whatsoever, and the CIDP continued to progress, (I had already tried IVIG, steroids, and an immunosuppressant). Actually, it was progressing with some speed. The CIDP had hit my autonomic system, and was hitting the different organs/systems, making them not work properly anymore. I am able to walk a few steps within the house, using the walls and furniture for support. But I sit/lay 99% of the day. I also have an electric wheelchair to go out in. I am now on oxygen 24/7, and was told by two of my doctors, that a trach & respirator is not too far off in my future. And have a foley catheter. I am now choking more, and was told by one of my doctors, that a feeding tube in not too far off in my future. I take a handful of pills 3 times a day, as the CIDP has hit the different autonomic organs/systems. And I was told be two of my doctors, 3 summers ago, that I had about 2 years left to live.
This past June marked the two year mark of being on Cytoxan. The Cytoxan, I feel, slowed down the progression of the CIDP, but did not stop it. This past April, my neuro told me he feels the Cytoxan added about another 2 years of life. So, yes, the Cytoxan has been a benefit.

My neuro has a different doctor, a Rheumatologist, in charge of my chemo, (the Cytoxan). I like both doctors–they are both very good. But my Rheum. told me he is nervous that I have been on it for so long. But my neuro told me there is nothing else to try. My neuro is watching the stem cell transplant for CIDP patients program, but so far, he is not pleased with the results so far. This past October to March, my Rheum. had me stop it, to give my bone marrow a break. And I started back up in April. He told me that most people get Cytoxan for 6months to a year, and then stop it. But, being that I am his, (the Rheum.), first CIDP patient, he is letting me continue on the Cytoxan, but has gone over with me the side effects of long use. He also required me in April, when I went back on it, to have my Advance Directive completed and turned into the Medical Center, (in some states they call it a living will). He knows what is in my future, and he is the third doctor on my team of 7 doctors, to go over with me the process of dieing, and what the probable things that will happen to me as I go along.

Randy-the thing you didn’t mention, was if your CIDP hit your autonomic system. If you are unsure about that, then you should ask your neuro to perform a skin biopsy on you. It is a very simple procedure done in your doctor’s office. They numb a small area on your thigh, then use what looks like a syringe with a thicker needle, in and out quickly, and that’s it.
If the result shows small fibre atrophy, then most likely you will have autonomic neuropathy, and the CIDP hits the nerves controlling the different organs/systems of the autonomic system. Post back here, if you want me to tell you what and where it hits, and what happens.

But, as you know, treatments work differently with different people. Perhaps being on Cytoxan for you, might put you into remission. Perhaps it definitely worth a try, since you said the PE wasn’t working.

Getting Cytoxan:
They admit you into the hospital, on the Oncology Floor, for one day, (and they stick with the same day every month, unless it falls on a weekend–with me, it is the 20th day of every month). The treatment starts about 10am, and ends around 630pm-7pm. All treatment is via IV, they first load in fluids, (D5 ½ NS) for about 2 hours. Next comes Decadron 6mg, (a steroid). Cytoxan is very harsh on the kidneys and bladder, so then they give you Mesna 1000mg, (a drug to used to reduce the harmful effects to the kidney and bladder). Then comes Zofran 32mg, (a drug used to reduce nausea, especially during chemotherapy).

Then comes the Cytoxan. I receive the maximum dose of 2000mg.
However, that gets adjusted by what your blood test shows, mainly be what your white blood count shows. EXACTLY 10 days after you get the Cytoxan, you must get a blood test for a CBC, CMP, and my doctor also includes a Sed Rate and CRP. If your white blood count is still above 3.8, I can receive the maximum dose of 2000mg. If it dips below 3.8, (of which that just happened again last week—my is 3. THIS is what they watch out for—if your white blood count goes too low. This happened a few months ago, and when it went below 3.8, I got shingles. So, I already talked with the Rheum., and he told me he was going to lower the Cytoxan dose to 1800mg this month.

Then they give you another dose of Mesna 1000mg. Then end the treatment with about 2 more hours of fluids, (D5 ½ NS). The whole treatment takes all day.

It is important to have more fluids than usual over the next 3 days after getting the Cytoxan. Since it is a toxic chemical, over the 3 days after you get the Cytoxan, first wipe the rim of the toilet bowl after you pee, and flush the toilet twice. (I don’t have to worry about that, since I have a foley catheter.) But, before I had my catheter, the nurses told me that because it is a toxic chemical, you don’t want anyone touching you pee, since it will contain the remnants of the Cytoxan, (like you don’t want your family member, whoever cleans the toilet, to get the chemical on their hands. If anyone or you, gets it on their hands, immediately wash your hands with soap and water.

I have good months and bad months, dealing with the side effects…you just never know.
But the heat of summer doesn’t help, as I usually have bad months during the summer.
I have multiple scripts/drugs on hand, for the nausea. (I am allergic to the group of drugs called Phenothiazines, which include Compazine and Phenergan.)
So, I have Tigan 300mg both in pill form, and when I am VERY nauseous and can’t swallow, I have it in suppository form as well. I also have Zofran 8mg. And I also have Marinol 2.5mg, (the pill form of Marijuana, THC), which helps greatly, since you feel like **** when you are very nauseous, and the Marinol takes the nausea away, and MAKES YOU FEEL GOOD…LOL…

So, Randy, I hope this helps. Sorry for it being long, but I wanted to prepare you for what the treatment was like. Back when I was on Plasmaphereses, I had a venal cath.
For the Cytoxan treatment, they put in a port, as I am a poor stick. Since you will get the Cytoxan for a while, it is good to have a port put in, of which you should mention to your doc., of which he will probably agree.

I wish you much luck with this. As you can see by Jan’s post, it worked well for her.
Hopefully, the Cytoxan will put you into remission. If it doesn’t, then hopefully it will at least slow the progression, like it did for me.

All the best,
KEDASO
(Ken)