Need some advise on treatment
AnonymousSeptember 1, 2011 at 10:06 pm
Was dx last jan. with cidp ,my progression has been relitivly slow but getting weaker and balance and tremors….no treatment has worked,prednizone,ivig,pp felt no better on any of them. So the doc did a nerve biopsy came back large and medium nerves significant loss, no vasculitus, which is the main reason for the biopsy and no evidence of repair from any treatment. So she said the next step is chemo, gonna try for retuxin if they won’t approve it then cytoxin. I do not really want to do this because of the side effects, i’m 41 so she said that i could have some complications later in life from the chemo….guess i’m trying to decide will the chemo do more damage than cidp since mine is so slow mabey it will level out…mabey. Very busy life 4 kids 6 to 16 and my wife is great with dealing with all this, just a big descion.
September 2, 2011 at 7:15 am
to clarify john—by last jan, do you mean just 7 months ago Jan? or a year and 7 months? My cidp is very slow progressing as well, sometimes it is even hard to determine if it is getting worse or better. I was told with the slow progession my improvement will be slow as well–and like the progression, sometimes hard to determine. I was just wondering if you gave the ivig or pe enough time if it’s been 7 months? Or if like me, because my progression was so slow it took me a while to get the drs to treat me aggressively enough to even make a difference. I was previously on ivig every 12 weeks, my nerve biopsy showed a pattern of demylination/remylination. Have got aggressive with the ivig now and hoping it does the job.
So possibly before getting into the stronger stuff maybe make sure they have been aggressive enough with the ivig?
Its a hard decision,plenty of people on here have been on the strong immune suppressants—-Im sure you will hear from them, and maybe it willl help with your decision. Lori
AnonymousSeptember 2, 2011 at 10:16 am
Since you have had no relief, from any of the conventional treatments for CIDP, I think it might be worth looking into the stem cell transplant program at Northwestern Hospital in Chicago. I’m sure if you look around on the site you will find info about it.
AnonymousSeptember 2, 2011 at 1:16 pm
I could say IVIG did not work. However, that would not be entirely accurate.
To be specific-
1. IVIG 2 days once per month did not work.
2. IVIG two times per week for 3 months did show improvement.
3. IVIG 1 time per week for three months following the 2 times per week resulted in declines.
4. IVIG 1 time every 2 weeks following 1 times per week showed more rapid decline.
5. IVIG 3 days every 3 weeks resulted in declines.
6. The initial 5 day loading dose showed improvement. However, the doctors discounted the effect because a month later I was right back where I started.
So, you see, I ‘could’ also say IVIG did not work. It did not work at the frequencies noted above.
Well, you know what they say- ‘every case is different.’
September 2, 2011 at 10:58 pm
haha yes yuehan–i would say you have been very patient with the ivig and given it plenty of opportunity t work if it was going to.
I just finished the 2x per week for 1 month and am now doing 1 x per wk for 12 weeks—-thats as long as i plan to give it before asking to try the PE.
AnonymousSeptember 3, 2011 at 3:56 pm
wow–you guys are at least able to get enough to give it a fair try. i just finished my first 5 day loading dose. dr. said it will be 3 weeks before we know if it worked or not–i don’t quite see how since in 3 weeks it will have already reached it’s half life. my symptoms have been going on for years. in 2007 i saw a neuro and had no deep tendon reflexes then but he did not do any further testing and dx chronic fatigue and fibromyalgia…. said, ” you’re a single mom, i’m sure you have a lot of stress” i didn’t even have the tender points a fibro patient has….he just didn’t want to deal with it….
AnonymousSeptember 7, 2011 at 12:07 pm
IVIG, Prednisone and Plasmapheresis showed no improvement.
I tried Cytoxin Chemo for six months. No improvement but I did not get worse (Except for foot drop)
Next step was Cyclosporine. I have been on a 100 mg/d dose for a year and am much improved. Frequent blood tests required to monitor kidney function. Minimum side effects at current dosage.
AnonymousSeptember 7, 2011 at 12:30 pm
jc10- I recomend you not focus on the IVIG half life.
Rather, perhaps what the doctor means is what the emg/ncv doctors (yes, plural) told me when I ask the how long….. question.
They said, ‘…ivig takes about one month for results to show on emg/ncv testing.’
Be patient, yet not too patient.
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