how do i get cytoxan?

    • Anonymous
      February 23, 2010 at 8:19 pm

      Hi peoples!

      I’m in relapse going downhill. 10 years of on and off prednisone has left me with osteoperosis so neuro don’t wanna give me prednisone anymore. Last year the IVIG treatments didn’t work. I asked him for cytoxan and he doesn’t want to give it to me. He says it’s for patients who are dying. I have another appointment with him on friday. He’s leaning toward me trying IVIG again. My quality of life is becoming crap and I want to try it. I don’t want to dwindle to nothing and then try it. I want to try it now.

      I also called Hopkins in Baltimore to try and get revimmune (or Hi-Cy). I’ve heard wonderful reports about cytoxan for CIDP. So far, Hopkins hasn’t responded. I left messages in the neuro department 2 days in a row now.

      How can I get a neuro to give me cytoxan? How can I get Hopkins to help me? Do I have to try ramdom neuros to find one who’ll give me cytoxan? I need help!

    • Anonymous
      February 23, 2010 at 8:55 pm

      [FONT=”Microsoft Sans Serif”]i cannot answer all your questions, but i can tell you that it sounds like your neurologist airs on the conservative side of things. simply, cytoxan is not only for those who are dying– it is also for those who have no success with standard treatments as well as those who have particularly aggressive cidp…

      there are some on the forum who have done cytoxan and have had excellent results. pam h. for example, was cured by a high dose regimen of cytoxan 8 years ago– i hope she spots your post and offers you some words of wisdom as she knows a tremendous amount about cidp first hand.

      there are others too– hopefully they will be able to respond to you.

      in my case, i had cytoxan but within a stem cell transplant protocol. please feel free to look over previous posts if you want to know more about that. and yes, i was able to kiss cidp bye bye after my treatment, no meds, nothing– i’m actually able to jog again.

      i would recommend that you insist to your neurologist what treatment you want– and if he or she is unwilling, ask for a referral to someone who will. essentially, you have to find a neurologist willing to work with an oncologist and try cytoxan. perhaps someone on the forum knows of a neuro in your area– is that jersey??

      hope some of this helps–
      best of luck.

    • Anonymous
      February 24, 2010 at 8:54 pm

      [SIZE=”5″]Stay away from Hopskins!!!! They dam near killed me !!!! I came out worse than when I went in. I had the CIDP take over my body & became paralized in front of 3 docs & 4 students. They had no idea what to do. My poor mother was begging them to do something but they froze. They stopped my prednisone cold turkey . I was able to say prednisone before I went out & 1 doc heard me. They gave 50 mgs. & I was up in 3 hours. They were clueless. They made a diabetic with a treatment. Never warned of effects. 4 months later, I’m still fighting the sugar. Then they put me Immuran, I got 14 of the 18 severe side effects. I stopped it 3 months ago after I collaped. I’m considering a law suit against them.
      I’m now with a doctor in Neptune. He’s also the head of the stroke dept. at Jersey Shore M.C. I’m very happy with him.He’s very familar with CIDP. His name is Dr. Steven Martino.
      I haven’t been here because I got so bad, I didn’t want to bring everyone down. The CIDP is underv control, its the effects from the meds I’m recovering from. I’m back in therapy. Out of the wheelchair & back in a walker. I’m recovering faster than this time.[/SIZE]

    • Anonymous
      February 25, 2010 at 12:14 am

      Cytoxan is not for those who are dying, more so for those who are refractory to IVIG, Plasmapheresis, & solumedrol (steroids.) I would give IVIG another try if you only tried it the one time; if you have the relapsing/remitting type of CIDP it should help you out. If you have the slow or rapid progressive form it probably won’t do much, I had the latter.

      The idea behind any cytoxan protocol is to virtually wipe out the immune system by giving large doses of cytoxan infusions, enough to get the white blood cell count to near zero. Then the infusions are halted & time is given to allow the immune system to “reboot”, this time without all of the bad antibodies that are attacking your nerves. I was in very bad condition when I got it, & now have not needed any treatment since 2003. I was on it for 9 months, infusions once a month after a loading dose in the beginning. I did lose my hair, but was given Zofran & solumedrol that avoided nausea. It did take some months for my nerves to heal to the point I am at now, but I would do it all over again in a heartbeat…

    • Anonymous
      February 25, 2010 at 10:19 am

      Cytoxan is not just for someone who is dying. My 21 year old son isn’t dying he just has an aggressive form of CIDP. He did IVIG for 8 months and only continued to go down hill and then he did 6 months of Plasmapheresis and high doses of prednisone. that treatment gave him strength but once they started weaning him off the prednisone he lost most of his strength and began going downhill again. so he is now on his 2 dose of cytoxan and it seems to be working.
      Now Cytoxan does have alot of side effects that you need to be aware of so please google cytoxan and read alot to be sure its what you want. Ryan reasearch it and read lots of threads on this forum before pursuing the neuro. our neuro was a little hesitant because of Ryan’s age as this treatment can cause sterility but Ryan took care of that by having some of his guys frozen prior to the treatment.
      print as much info as you can and really talk to your neuro tell him why you want to do this treatment. be informed so you can inform him. if he still says no then start looking for a new neuro. it just amazes me that some of these neuros who treat CIDP only want to stick to IVIG and plaSMA PHERESIS and prednisone. they don’t stay current with other treatment protocols.
      Best of luck to you and please keep us posted on weather or not you are able to get the treatment.

    • Anonymous
      March 4, 2010 at 4:21 pm

      Hi peoples!

      Thanks for your replies. It took some time but my neuros at UMDNJ are sending my medical records and test results to Hopkins. They didn’t wanna give me anything but IVIG which has been ineffective. Now that they know I’m going to be seeing a different doctor, they are talking about giving me Imuran and maybe low dose prednisone. I figure I’ll take the Imuran for now until I get into Hopkins because I need help.

    • Anonymous
      March 4, 2010 at 6:08 pm

      [SIZE=”4″] They gave me Immuran. That’s what almost killed me. Its mainly used as a anti-rejection drug used by people who have just had a transplant. Of 18 servere side effects, I had 14. They inclued muscle loss, weakness, trouble breathing, muscle mass loss, balance, dizziness,hair loss etc. Everything I fought for to regain from the CIDP for the last 6 years, was gone in a month & a half. My legs & my trunk muscles took the biggest hit. I still can’t go to my home. I don’t have the strength to climb stairs or even walk. I just got of the wheelcahir & into a walker about 2 weeks ago. That’s only for a couple hours a day. I still have to use the wheelchair for about half a day.
      I collapsed on Dec.20th. I was totally paralized again because of this pill(150 mgs. a day). I stopped the pill cold turkey, on the spot. Within 2 hours, I started to come back to life, but the damage was already. I have been improving ever since. They wanted me to stay on the pill, no matter what. I’m didn’t want to be a part of their experiment any longer.
      While at Hopkins, they stopped my prednisone. They didn’t ween me off as is protocal.When I became totally limp & slipping into a coma while these great doctors were in the room, no one knew why or what to do. My poor Mother is watching this & is telling to do something. Before I wnt totally out, I was able to wisper Prednisone, & one of the doctors heard me. It took 4 hours to take effect, but I was able to sit up. No help from them.
      You do what you want, but this is a first hand account of what I went thru. All I can say is good luck. You can Google Immuran to see if I’m lieing about the side effects & what its used for. When I brought to the doctor’s attention, he said he didn’t know of the side effects.
      These are comments & accounts are what happened to me. I’m not saying it will happen to you. These were my terrible 16 day experence at this hospital.

      FYI, The 3000mgs. of a different steroid they gave me over the 1st 3 days I was there, made me a diabetic. I was never told of that this was a possibility. I’m still fighting the sugar. its coming down, finally. But its been 5 months of misery. Food was the only thing I had to look forward to, & they took that away from me also.I just pray every night that I recover from this horrible experence.[/SIZE]