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…
I was on the cytoxan protocol for 8 months back in 2003, & am writing solely from what I can remember. I was hospitalized the end of Jan from Fri-Mon & given 3 loading doses of 1140 mg of cytoxan. Then I received 2 more doses in the next few weeks at our local oncology infusion center in the small town that I live in. I was given monthly doses through Sept, when my neuro decided that I had had enough; guess my white cell counts were down around zero.
I was given Zofran & also infused with solumedrol, so I never experienced any nausea. I don’t remember feeling any sicker than I had before the cytoxan, but like Ryan, I was not in the best shape physically anyways. I did lose my hair, so when it first began to fall out, we just shaved my head. I do remember my lower legs feeling like they were hard, used to describe them as “frozen turkeys” after my infusions. This treatment does not work right away, by about March or April I could tell that y CIDP was arrested. It wasn’t until the following December that I noticed a lot of increased strength in my arms & legs.
It can take up to two years to reap the full benefit of nerves healing. Even then, nerves that are damaged in the axon part might never recover. That is why this treatment is usually reserved for the cases that are refractory to IVIG, PE & steroids, & also the worst cases. Someone who gets monthly IVIG & leads a normal life probably would not choose this route. I don’t remember having to drink extra water, but then I do drink decaf coffee all day long. I do remeber the restrictions on voiding, having to be careful…
Thank you for mentioning the name of this drug; as it was actually my treatment of infusions of cytoxan that arrested my CIDP back in 2003. I had one of the 4 most severe cases that Dr. Gareth Parry had ever seen, at one point was even treated every Friday for 12 weeks with Plasmaphersis in the morning, IVIG & Solumedrol in the afternoon. This was after being treated with all 3 for 8 months previous to that. The cytoxan infusions did arrest my CIDP & a year later I was up walking & got most of the use of my hands back. I still have resiudals left from axonal damage, but do lead a pretty normal life for my age. I looked up an article on this protocol & found this:
Revimmune Uses An Approved Drug In A New Patent-Pending Method To Eliminate Autoimmunity
Also Included In: Lupus; Immune System / Vaccines; Neurology / Neuroscience
Article Date: 03 Mar 2007 – 10:00 PDT
In clinical studies for the lead indication of multiple sclerosis (MS), Revimmune improves function in most patients and stops progression in over 90% of cases refractory to standard therapies.
Accentia Biopharmaceuticals, Inc. (NASDAQ: ABPI) has acquired the exclusive worldwide rights for Revimmune™, a patent-pending pharmaceutical treatment in late-stage development for a variety of autoimmune diseases. The in-license advances the Company’s strategy of acquiring late stage drug candidates that can benefit from the 505(b)(2) regulatory pathway. Revimmune uses an ultra-high intensity, short-course of an intravenous formulation of an approved drug (cyclophosphamide), in a new patent-pending method to “reboot” a patient’s immune system, thereby eliminating the autoimmunity, whereas current therapies including oral cyclophosphamide are used chronically to try to suppress the inflammation of autoimmunity. Based on long-term follow-up showing complete remissions, there is substantial evidence that Revimmune has the potential to cure cases of severe refractory autoimmune diseases such as aplastic anemia and myasthenia gravis. Accentia’s lead indication for Revimmune is multiple sclerosis (MS).
The Principal Investigator for the ongoing MS study with Revimmune at Johns Hopkins University School of Medicine is Dr. Douglas Kerr, Associate Professor of Neurology. Dr. Kerr stated: “Based on follow-up of up to 2 years, most people have a substantial improvement and many have a complete elimination of disease activity.” The co-Principal Investigators on this study are Dr. Daniel Drachman and Dr. Robert Brodsky.
The Revimmune license covers all of the estimated 80 autoimmune diseases that are currently recognized. These include multiple sclerosis, systemic lupus, juvenile diabetes mellitus, rheumatoid arthritis, Crohn’s disease, myasthenia gravis, and scleroderma. To date, over 175 patients, mostly those with severe refractory autoimmune diseases, have been treated with Revimmune. The Company believes that Revimmune is a “platform” technology that can be used in any autoimmune disease.
Revimmune can be administered as an inpatient or outpatient infusion for 4 hours per day for 4 consecutive days. Patients can recover at home while their immune system reconstitutes itself over a 2 to 3 week period. Revimmune includes a risk management program to enhance patient safety by ensuring appropriate patient selection, supportive care, and tracking of outcomes data.
Developed by Dr. Richard Jones, Dr. Robert Brodsky, and colleagues at the Johns Hopkins University School of Medicine, Revimmune works by temporarily eliminating peripheral immune cells, including the immune cells causing the autoimmunity, while selectively sparing the stem cells in the bone marrow. Investigators at Hopkins discovered that stem cells uniquely have high levels of a particular protective enzyme that can be measured in advance of therapy, which makes them impervious to Revimmune, and allows the surviving stem cells to give rise to the new immune system over 2 to 3 weeks. The newly reconstituted peripheral immune system typically lacks the misdirected immunity to self-antigens, which is characteristic of autoimmune diseases.
I may be the only person on this forum who underwent was at the time a very experimental cytoxan protcol for CIDP. I had already tried biweekly IVIG, plasmaphersis treatments, solumedrol infusions for 8 months, & even all 3 treatments for 12 weeks (every Friday), before my neuro suggested the chemotherapy treatment. I was basically a quad, totally unable to walk, could not raise my legs up, nor my arms, & had no use of my hands. I had been in this conditon for 8 months (in spite of all the other treatments) when my neuro decided to try the cytoxan.
I received 5 loading doses in 8 days of 1140 mg of cytoxan as an inpatient, then once a month infusions at our local hospital as an oupatient for another 8 months back in 2003. By the summer of 2004 I began walking again & now walk with AFOs & take a cane when I go outside the home. I got my driver’s license back in Feb of 2005 & lead a fairly normal life for my age, I guess. I do battle fatigue & pain, mostly in my feet. For that, I take 1800 mg of gabapentin daily. I have not had any treatments since September of 2003, when I had my last cytoxan infusion & I have remained stable. I did not have any IVIG during my cytoxan infusions, but did need to stay on solumedrol until Feb of 2004 for strength issues.
Feel free to email me if you have any other questions…