cytoxan help

    • Anonymous
      April 29, 2010 at 5:49 pm

      Hi Peeps!

      Who better to talk with about CIDP but youse? IVIG is ineffective on me now. I’ve been trying to get cytoxan since 2-10. Two neuros wouldn’t give it to me and I’ve been trying several angles to get it. Right now now, I’m on 50 mg. prednisone and 500 mg. cellcept 2x/day. The prednisone has helped some. I’m tapering off it now as I’ve gotten all the benefit I can from it. I’ve been on an off prednisone for 10 years and am left with osteoperosis. I don’t know if the cellcept is helping or not and I just lost my Rx coverage due to divorce so I won’t be on it next month. Maybe there’s a cheaper immunosuppresant than cellcept I can ask my doctor for?

      So, I’ve been trying to get into Hopkins for months now and finally got a consulatation set for 6-21-10. We’re going to talk about getting the Hi-Cy protocol. I hope this will put the CIDP into remission long term. While I was waiting on Hopkins, I tried other angles. I contacted a local oncologist center and found a doctor there who will consider giving me cytoxan. He probably won’t give me the Hi-Cy protocol as he’s probably not that familiar with it. He mostly deals with cancer patients but I’m looking for any help I can get. I had my records sent there and I have an appointment with them on 5-4-10.

      Now, I’m not sure what I should do. I’m thinking I should take whatever I can get from the local oncologist and try for more at Hopkins. What would you do?

    • Anonymous
      April 30, 2010 at 12:32 pm

      HI My son Ryan has been getting cytoxan since Feb 2010 and it took him a long while to convince our neuro to give it to him. Ryan had to do all of the regular protocol first IVIG, prednisone, plasma pheresis, none worked.

      Ryan fought for it and finally got it. Now dont get me wrong the only reason his neuro was nervous about giving it to him was because of all the bad side effects it can cause. But Ryan was already aware of it and talked to the neuro and made him understand that he was ok with the risk if it could make him better.

      Ryan went as far as having some sperm frozen in case he became sterile, the fact that this treatment could some how cause cancer later in life didnt bother him cuz anything can cause cancer so if it happens we will deal with it when it happens if it happens. But since no other treatments were really working for him this really was Ryans choice.

      Have the neuro’s said why they dont want to do the cytoxan? are they just not familar with this treatment for CIDP if not then maybe you need to find one who has more experience in CIDP.

      The neuro’s who are more experienced tend to be more up to date with the wide range of treatments out there. the more inexperienced neuro’s think the only treatments are IVIG plasma pheresis and prednisone. even then some are not very smart about those treatments. from what I have seen from posts made to this website there are alot of neuros who are very inexperienced. In my opinion if a neuro is going to treat a patient with a rare disease then they need to take some time to get up to speed on how to treat that patient and what treatments are out there. They make themselves look very incapable when they aren’t familiar with the different treatments. That is my opinion.

      But your the patient and you have the right to demand what treatment you want. who are they to tell you no.. if you research it and take them the info and show them you know what your getting into then they should do it. just because they cant find that treatment in a medical journal for that disease doesn’t mean they can’t do it. if you have taken them info that shows this treatment has been used and has been sucessful then why not let you do it. what are they afraid of? that you might get better!!

      Just so you know in case you haven’t seen my updates on my son, Ryan was dx in dec 2008 with CIDP he rapidly declined and in April 2009 he was paralyzed and in a wheelchair where he has been until cytoxan. he finally started Cytoxan in Feb 2010 he goes into the cancer center and he gets 2000 mg of cytoxaN by IV. evry 3 weeks for 6 months.

      Within a week or so of his first treatment he was feeling good and I mean good. he was walking with a walker all over the house then soon after the second treatment he went to using the forearm crutches and then he was using a cane. Ryan is now today walking with a cane however he can walk without a cane. He does where AFO’s which are leg braces. He just rode a bike (a 2 wheel mountain bike) for the first time on wednesday at physical therapy. I was a nervous wreck. I was so afraid he would not be able to hold him self up with a bike. but he did it and he was amazing. I even posted a video to my facebook- if you want to see it go to facebook and go to my page Rhonda Butler McCombs and you will see the video of ryan riding a bike.

      Cytoxan has been Ryan’s miracle and it is giving him his life back!! He will be done with it in JUly and then we will see if he is in remission oh how we are praying for remission..

      Just remember if you do get to do cytoxan the amount depends on your weight and height.

      Good luck and remember fight for it and demand it you are the one who has to live with CIDP not the neuro’s.

      Rhonda (ryans mom)

    • Anonymous
      April 30, 2010 at 11:33 pm

      Hi Ryan’s Mom and thanks for your reply. I’ve had CIDP for 10 years now. IVIG does not help me anymore. Prednisone (60 mgs.) gives some help. Plasmapheresis, I had 10 years ago. I don’t know if that helped or the prednisone. I was on 90 mgs. at the time.

      When I asked for cytoxan, my neuro of 10 years referred me to a different neuro. She said she wasn’t that familiar with it. The new neuro was oh so anxious to give me an EMG and NCV for &%^#@ hours. He did that the first time I saw him and documented how my condition declined in just two years. Six weeks later though, he still hadn’t given me ANY help at all! No prednisone or anything. The new neuro said that he only gives cytoxan to patients that are dying. I had many arguments with this guy. It’s my body. I have to live with this #&$% not him. He seems totally content with having me slowly slip down a decline but I’m not! I know the risks and benefits and feel as a patient I should have a right to receive treatment. Well, it’s been a fight.

      So, now I’m still fighting and hoping and praying to receive some soon. There’s so much life out there and we all have the right to go out and enjoy it.

    • Anonymous
      May 3, 2010 at 11:30 am

      Jersey Shore

      I am very saddened by this neuro. Obviously they are not up to date with the treatments. Cytoxan isn’t for people who are dying, its for people who don’t respond to other CIDP treatments.

      AS long as its administered by a knowledgeable oncologist its safe. The oncologist use cytoxan all the time to treat cancer. Its been my sons only treatment that he has had any benefit from. His legs were completely paralyzed and his arms were almost completely paralyzed. he was able to feed himself but it was hard to watch as his hands were all crippled up and his tremors were so bad that he looked like he has parkinsons. he could not write his name nor could he type. he had to purchase voice activated software to use his computer. Things were so bad and I was so scared when we first started this treatment since nothing else had made any huge differnce for him.
      But a few days after his first treatment when he called me into his room and he was sanding next to his bed I knew this was going to be the one for him. its been up hill ever since and no looking back.

      I am going to give you our neuro’s email address and phone number, you need to contact him and tell him your story. tell him that you have had CIDP for 10 yrs now and that all the reg protocal dont work any longer and now you need to find a neuro who let you do cytoxan. he can help you find a neuro who will work with you. he is a neuro in the top of the field for CIDP and he is on the board of this foundation. he also helped to name a variant of CIDP. His name is Dr Richard Lewis, he is very smart and knows his stuff.

      his office phone number is 313-745-4275 and

      his email is- [email][/email]

      Good luck I hope you can get the treatment you want


    • Anonymous
      May 4, 2010 at 6:23 pm

      While it is true that you don’t have to be dying to get this protocol, I would guess that most neuros won’t consider it unless one is in pretty bad shape. I was like Ryan for nearly 3 years before I was given this protocol. BTW my neuro is Dr. Parry from the UofMN, also on the advisory board. I haven’t seen him now since 2004 or 2005, as the cytoxan arrested my CIDP. If you ever want to chat, send me a PM & I will call you…

    • May 11, 2011 at 9:06 am

      Pam, I live in MN and am going to the U of Mn in two weeks to see a CIDP specialist. But his name is Dr. Walk. They say Dr. Parry is no longer accepting new patients. I hope this Dr. Walk is a good neurologist too. I am excited to get in at the U of MN’s neurology dept because they seem to be on the cutting edge for treatments. Wish me luck!

    • Anonymous
      May 12, 2011 at 12:39 pm

      If you are doing well on IVIG, I imagine that they will keep yuon that protocol. What works for some doesn’t necessarily work for all. If you are seeing a different neuro, no worry, as thy all are available to each other for consult on cases. But just go, or keep with, the treatment that seems to be working for you. Best of luck…

    • Anonymous
      July 29, 2011 at 1:45 am


      I am very interested in this protocol if my other treatments do not put me in remission. I have been declining for last 18 months and am now trying Solumedrol – no benefit yet. I am not going to jump to this treatment, but I want to know I can go there if I need to.

      I would be willing to pay for the treatment myself (I am sure my insurance would not cover it). Is there any place in the US where I could get the treatment if I pay myself? What about offshore? Are there any reputable places to go?



    • Anonymous
      July 29, 2011 at 4:57 am

      When I got the cytoxan protocol back in 2003, had been on IVIG ($8,500 per treatment back then,) & plasmapheresis, about the same cost. The cytoxan treatments cost my insurance $800 per month for 9 months, & it did stop the CIDP for me. I have been on no treatments or infusions of any kind since Sept of 2003.

    • August 1, 2011 at 1:44 pm

      What are the repercussions from taking Cytoxin? Are there bad side effects and does it cause your body any damage in the longterm? Just wondering because I would like to discuss this option with my Neurologist. My IVIG infusions seem to only last 2 weeks and I can’t imagine getting an infusion every 14 days for the rest of my life.