Cytoxan…

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.

Cytoxan…

Anonymous
May 14, 2011 at 12:28 am

When you say you were on cytoxan, I was just wondering how much you were infused each month. I was on 1800 mg a month for 8 months after a 3 time loading dose of 1140 mg each time.

Cytoxan…

Anonymous
February 10, 2011 at 11:58 pm

Yes, the cytoxan prevents the bad antibodies from further attacks on the nerves (if it works for one.) Like SCT when the nerves are no longer being attacked, then the myelin sheath has a chance to rejuvenate, or in some cases actually resprout, which allows the nerves to again send signals to the muscles. CIDP attacks the nerves, not the muscles. The muscles atrophy because they are no longer getting the signal as to what to do, thus they don’t work either. My hands were very atrophied from not being used for 2 1/2 years; but now they look normal again (at least to me they do,) so I believe that we can get some of the muscles working again & reverse at least some of the atrophy.

Cytoxan…

Anonymous
February 8, 2011 at 12:46 pm

You are correct about the cytoxan regimen, as I went through this procedure of high ose monthly infusions for 9 months. Although it arrested my CIDP & I was able to get a lot of function back, it could not reverse the axonal damage I had sustained in my feet, lower legs, hands, etc.

As to the SCT, it is basically the same regime in that it uses high doses of cytoxan to arrest the CIDP, only in a controlled environment. I don’t believe, however, that even SCT can bring back the use of nerves that have axonal damage. Someone please correct me if I am wrong about this.

Cytoxan?

Anonymous
December 16, 2010 at 11:42 pm

The chemo I received back in 2003 was the high dose cytoxan regime, is that what you are getting? I received 1800 mg per month after 5 loading doses in 10 days. I had 9 months of chemo before we decided it had been enough to arrest the CIDP. I began the infusions in Jan & could tell by May that the CIDP had stopped, arms & legs both felt stronger. It can take up to 2 years to see all of the results after that though, as nerves can take that long to heal.

Cytoxan…

Anonymous
October 11, 2010 at 3:48 pm

If you read my longer post above on this thread, you will see that for 8 months, I did try weekly IVIG, plasma exchange & weekly solumedrol of 1,000 mg. Cytoxan was brought in when I wasn’t getting any better. It did arrest my CIDP & finally allow my nerves to heal, at least those not damged with axonal damage. I did take a very long walk today with my husband & the chocolate lab, the only difference is that I did take my powerchair. I can get up & walk through the leaves, but not for long distances. I think you should get IVIG every 4 weeks, the every 12 was ridiculous as a treatment. I remember all too well thos steroid moments, my family knew to stay far away from me on Tuesdays, LOL!

Cytoxan…

Anonymous
October 7, 2010 at 12:12 am

Before my cytoxan infusions, which were 1800 mg a month, I was first given my solumedrol infusions & then some Zofran in my IV. The only time I experienced nausea was when my solumedrol infusion wasn’t given for some reason. Have you tried getting them at the same time?

Cytoxan…

Anonymous
October 4, 2010 at 8:26 am

I was a very severe case & had been that way for 9 months when I began the cyoxan infusions. Hadn’t walked at all, virtually no use of my hands, couldn’t raise my arms or legs off of the bed, etc… After the cyoxan, & some time to wait healing, I can walk now with AFOs, I got about 70% of the use of my hands back, I can drive again & I feel like I lead a pretty good life. I still have the fatigue issues, but have been stable since the summer of 2004. The biggest thing is I haven’t needed any treatments since my last cytoxan infusion in Sept. of 2003. But you need to be very patient, this is a very slow process, nerves can take up to 2 years to heal & any axonal damage will not come back. My permanent damage is mostly in my feet, although all 4 limbs are definitely weaker than they were before CIDP.

Cytoxan…

Anonymous
September 22, 2010 at 11:48 am

While I was at my worst I had cytoxan infusions once a month for 9 months. I was also having solumedrol infusions every week & IVIG in the beginning. The cytoxan arrested my CIDP somewhere around the 5th month & then the healing began. But it is a slow process to heal, allow up to two years, as that is how long nerves can heal after they have been damaged. If you have any axonal damage, those nerves most likely won’t heal. I have been off of all treatments now since 2003, when I had my last cytoxan treatment.

Cytoxan…

Anonymous
August 31, 2010 at 12:00 am

I received 5 loading doses of cytoxan of 1140 mg in 10 days, & then 1800 mg for the next 8 months. I did lose my hair, but thanks to Zofran (anti-nausea med), & solumedrol infusions, I never got any nausea. I don’t remember any specific side effects, but then I was very ill back then anyways. If you don’t get sick in the first few days, why would you get sick in between? I don’t understand that? I would go back & do it all over again, for me it was so worth it…

BTW we just got back from 5 glorious days at our summer cabin; in the middle of nowhere, an isolated island with no electricity, gas lights, gas stove, an outhouse, etc. We’ve made 5 trips up there so far this summer. We have also had 2 lovely vacations in the Brainerd Lakes area for 4 & 5 days. Now we are busy planning a 2 week road trip out to Colorado (we live in MN.) We already have our winter trip planned & booked to Cape Coral, FL & Naples, FL. For 3 years there was a time I believed that I would always be a helpless person in a powerchair. Cytoxan gave me back a life!

Cytoxan…

Anonymous
August 30, 2010 at 11:50 pm

As you know I came down with CIDP in March of 2002 & my case was very similar to Ryan’s. I had the cytoxan Jan-Sept in 2003 & it put me in remission; I have been in remission for 7 years now this September. The even better news is that Ryan will most likely continue to see improvements for up to 2 years from now. I am so happy to hear that he is back in college. I know how you must worry, I remember when my son in a wheelchair (spina bifida) went away to college back in the fall of 2002. Duluth, MN is not exactly ideal college conditions for a wheelchair student (wintery climate.) But he managed & graduated with honors, even though 6 months after he left home his mother became very ill with CIDP. It will all work out just fine…

Cytoxan…

Anonymous
August 19, 2010 at 1:06 am

I was put on monthly cytoxan infusions from Jan 2003-Sept 2003 & it did arrest my CIDP. The next two years were filled with a lot of healing & getting things back, as IVIG, Solumedrol & PE didn’t work for me. I did manage to get out of the powerchair & back to walking (after 2 1/2 years), got most of the use of my hands back, but I never got everything back. I still walk with AFOs & have some numbness in my hands & feet. I did lose my hair, but tolerated the cytoxan very well other than that. But as you can tell, I was a very severe case & had been that way since onset. It saved my life & I wouldn’t hesitate to make the same decision again. Just remember, if you have any axonal damage, but that probably won’t heal, but it should get you off of IVIG infusions.

Cytoxan…

Anonymous
May 7, 2010 at 11:01 am

My CIDP was both sensory & motor, a very severe case. The cytoxan infusions helped with both issues.

Cytoxan…

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…
Pam

Cytoxan

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)

Cytoxan…

Anonymous
February 9, 2010 at 12:02 am

Please keep us posted on a regular basis, as I am so hoping this treatment will arrest his CIDP. How often will he be getting the infusions? After getting 5 infusions in 10 days, I then had it once a month for 8 more months. I began the end of January & within a few weeks I had my beautician & next door neighbor come & shave my head. Since I had literally no use of my hands, it really made things easier for my husband at the time. But Ryan is luckier, as shaved heads are so in right now.

Cytoxan…

Anonymous
January 31, 2010 at 6:50 pm

Just remind Ryan that it takes time to get the feeling back & also for the nerves to heal. I know it’s hard to be patient, but the drug will work. I will say a prayer for him that he tolerates the drug as well as I did.
Blessings, Pam

Cytoxan…

Anonymous
January 28, 2010 at 9:15 pm

I will say a prayer for Ryan, can’t see why it wouldn’t work. Neuros know lots about T-cells & B-cells; can’t imagine they would even try it if it weren’t the right treatments for him. Please keep us posted, OK?

Cytoxan…

Anonymous
March 26, 2009 at 11:41 pm

I received massive infusions of cytoxan for 9 months. I was so weak & ill at the time anyway, that I don’t remember any specific ill side effects from it; but I was infused with solumedrol at the same time & also given Zofran. I did lose all of my hair from the chemo. I have to say it was well worth it for me though, as I did get a lot of function back permanently & have not had any treatments at all for my CIDP since Sept of 2003; it really did arrest my severe case of this illness.
Pam

Cytoxan…

Anonymous
May 12, 2008 at 11:52 pm

About the weather, I think you should be living here in NE Minnesota, where we have had 3 blizzards in April (one totalling 32″ of snow at once), woke up Mother’s Day to 2″ of snow, & just saw on the news where they are predicting snow again for next weekend. I wish I could post the picture from our local paper yesterday; Saturday was our fishing opener & it showed the boats trying to navigate around the ice still on the lakes. Today’s HIGH was around 44 degrees! Do you want to trade house, LOL?

My doctor’s original plan was for 12 months of cytoxan infusions, at 1800 mg a month. But when my white blood cell count reached nearly zero after 9 mo, he ended the treatments. That was over 5 years ago & I haven’t relapsed yet. I am so sorry your autonamic nervous system has been affected as well, as I never had to deal with that. About the smoking, I took it up about 3 years ago as well (had smoked years ago), as I had also enjoyed it & felt I had just lost so much of my old life. Don’t beat yourself up about it, we have enough battles to face as it is. For me, it really helped with my foot pain, probably by cutting off the circulation to my feet even more? Best of luck…
Pam

Cytoxan…

Anonymous
January 5, 2008 at 11:07 am

I am probably one of the few on this forum to undergo the full cytoxan protocol; to the point where it permanently arrested my CIDP. After the first 5 loading doses, I then underwent monthly infusions of 1800 mg for the next 8 months. I had no problems tolerating the cytoxan, but was so sick anyways at that time, that I probably wouldn’t even have known. I did lose my hair, but had no nausea thanks to also getting solumedrol infusions first. If you want to know more just send me an email. But I was in a very severe condition before they resorted to chemo & IVIG & PP had done virtually nothing for me. Solumedrol weekly kept me out of a nursing home…
Pam

cytoxan

Anonymous
November 1, 2006 at 7:55 pm

jethro. i do recall hearing something about t cells. don’t remember though. my first dose was 500 mg., second dose was 750 mg. the next 10 doses were one gram every 4 weeks with i.v.i.g. in between. i had great insurance at the time and was able to be treated at home with an i.v. nurse. we used to have chemo./pizza parties during my treatments. as long as i took my zofran in enough time, i was able to eat pizza and be infused at the same time.
now i’m just trying to deal with the autoimmune hepatitis i was left with. i’m up to 12 pills of cell cept per day now. just bought some sun block 50 to cover up while parasailing. cell cept can increase the risk of skin cancer. (lymphoma) too. so i’ll just cover up and have fun.
thanks for all the info.
deb

Cytoxan…

Anonymous
November 1, 2006 at 7:45 pm

Dear Deb,

Thanks for the reply. Were you on a high/low dosage, or just one dosage of cytoxan? Has your doctor concluded that your attack is from T cells, because cytoxan is for “T” cells. There are others that have B cell attacks, and for those, Rituxan should be the medication.

Question your doctor – and do not feel out of line about it. See what he has to say…and if he can’t say, then test need to be run.

Best regards.

Jethro

Cytoxan

Anonymous
September 16, 2006 at 5:57 pm

[QUOTE=DavidBod]Nancy, Cytoxan (cyclophosphamide) is a cytotoxic (cell poison) used to damage DNA and prevent its replication in some types of lymphoma, leukaemia and some solid tumours.
It has a place in the treatment of the more resistant types of CIDP after IVIG , steroids and plasmapheresis have failed. I used it at that stage. Like other cytotoxic drugs it may cause nausea and vomiting so anti-emetics are often prescribed with it.
Pregnancy should be completely avoided whilst on the drug.
Periodic kidney and liver function tests should be done.
It is contra-indicated in Porphyia (King George IIIrd’s illness)

I suggest you ask your doctor for a copy of the manufacturer’s product literature on it. DocDavid[/QUOTE]
DocDavid
Thanks for your response. How helpful was the cytoxan treatment for you. Did it stop the activity of the disease, how long were you on it, have you had any relapses since? I am very curious because the CIDP in me seems to be more and more “resistant” to treatment.
I know the manufacturer’s warnings for cytoxan- if it doesn;t kill you, it’ll cure you. Seriously, i am aware of the dangers to the kidney, liver, heart, lung, bone marrow, and of course immune function. And that it is a teratogenic, will absolutely cause birth defects. I am already blessed with three children.
My neurologist maintains the most imminent danger is the damage to the liver and consequently the cytoxan can only be given 75 times. I have not read anything about that.

If i am not being too nosy, what caused your kidney failure?

Cytoxan

Anonymous
September 16, 2006 at 10:32 am

Nancy, Cytoxan (cyclophosphamide) is a cytotoxic (cell poison) used to damage DNA and prevent its replication in some types of lymphoma, leukaemia and some solid tumours.
It has a place in the treatment of the more resistant types of CIDP after IVIG , steroids and plasmapheresis have failed. I used it at that stage. Like other cytotoxic drugs it may cause nausea and vomiting so anti-emetics are often prescribed with it.
Pregnancy should be completely avoided whilst on the drug.
Periodic kidney and liver function tests should be done.
It is contra-indicated in Porphyia (King George IIIrd’s illness)

I suggest you ask your doctor for a copy of the manufacturer’s product literature on it. DocDavid

Cytoxan…

Anonymous
May 11, 2006 at 3:15 pm

Blu,
Cytoxan is a chemotherapy drug, in fact it is the one most commonly used for breast cancer. It is relatively cheap, my infusions were around $800 a month. After having had PP, IVIG & solumedrol infusions every Friday for 12 weeks (yes, on the same day) I am sure my insurance company was thrilled not to have to pay for those any more.

As for the side effects, I was a little tired, but had no nausea at all. It was only a few hours a month at our local hospital. I was told that I would have a 5% chance of leukemia 20 years down the road. I am so glad I took that small risk. It was worth it to get a life back.
Pam