My treatment program was back in Jan-Sept of 2003, but I will post what I think it was. First I got 3 loading dses at the Uof MN Hopsital to see how I tolerated the cytoxan; I believe these were 1140 mg each. Then 3 more when I got home. This was all in about a 2 week time frame. Then I had monthly cytoxan infusions of 1800 mg for 8 more months. Alice & I have concurred that it was the cytoxan that arrested the CIDP, not the stem cell regime. The main difference between the two is that I was with a very compromised immune system for a much longer time frame. But after getting CIDP, I never had a cold or any sickness until Sept. of 2010 while on a grueling 15day road trip out west, so I believe my immune system booted back rather quickly & seems to be normal.
First, let me say I agree with Laurel regarding the quality of your find. I’d love to learn how you found it. I am guessing that a podcast is linked to Ipods because the description at the end of the podcast, as did your previous link, mentioned apple.
As for my protocol, here it is:
In the beginning, in the fall of ’08, prior to Mayo, I also was treated with 5 one day doses, in the hospital, followed by 2 days, in a row, once a month at home. That treatment was halted as “too dangerous and ineffective…” It took me several months to be accepted at Mayo. I was self-referred, I did not have a Dr.’s referral.
At Mayo in ’09 they stated, ‘..you likely did not receive enough IVIG often enough…’
The plan (protocol) was for IVIG .4g/kg 2 times per week for three months followed by 1 times per week for three months with a return to Mayo to be evaluated.
The evaluation, which consisted of EMG/NCV and in-office muscle testing, was positive and the taper, or titration, continued at 1 time per week for three months shifting to 1 time in two weeks to return in one year from the evaluation.
In addition, Imuran (azathioprine) was added at 50mg day for a month, then 100mg/day for a month and then 150mg/day for a month. It has taken the azathioprine about 8 months to begin to ‘knock down’ my immune system.
However, I became weaker on the 1 time IVIG in two weeks. I reported this, by mail. Ultimately, my follow-up appointment was moved up several months.
By circumstance of fate I traveled both to Chicago NWU and to University of Calif San Diego (UCSD). I had one bi-weekly treatment at Chicago and then- I couldn’t get my next treatment on time.
However, after about 3.5 weeks at UCSD I did receive a new 5 day dose of .4g/kg each day followed by an evaluation after three weeks. The evaluation, strictly in-office, showed considerable strength improvement in the muscle groups not affected by atrophy. Following the 5 day dose the UCSD specialist recommended .4g/kg 3 days per week every 3 weeks for “several cycles.”
Happy New Year, Best of treatment results, and Hope you can get into Mayo quickly.
That web site the chart is on seems pretty informative to the layperson.
How ofter do you suppose the doc’s follow this treatment protocol?
There seems to be too many variables that add lots of gray area to the situation.
Its a bummer that if just one of the diagnostic criteria don’t fit, it seems to
throw the doctors for a loop. Then you get into the possible and probable arena.
The B-12 being out certainly adds alarm to the situation but I wouldn’t hang my hat
on that finding with your symptoms. One would think they would think past that and wonder
what if and get working on that asap. As uncomfortable as the Lumbar puncture is, I would
really push for that. It takes a good 4-5 days for the cultures and results. Your primary
care doctor can order that.
Just wondering, your thoughts here. thanks. tim