AnonymousApril 3, 2013 at 11:05 am
i was diagnosed with CIDP last summer. Toes numb, weak ankles, poor balance, etc. been receiving rituxin treatments for six months. treatments make me feel like i have the flu for a couple weeks, horrible. my symptoms have not gotten any worse but have not improved at all. Anyone else receiving rituxin treatments, and has it helped your condition.
April 4, 2013 at 12:53 am
Hi Phoenix, I felt like the rituxin was working in the beginning. I was doing only that, no ivig once i had rituxin. I had two 1000 mg doses, which the dr said should last 6-9 months. After 5 months I began feeling like I was getting worse. Still fighting with my insurance company regarding the rituxin , so another dose was not an option for me. I had to go back on ivig in Jauuary to keep from getting worse. I have applied for stem cell tranplant and will be going to chicago in May to see if i qualify.
I did not get a significant response from the rituxin and have not from ivig, plasma xc or prednisone. my dx is preety confirmed from numerous tests at mayo—dont know why nothing seems to be working for me.
AnonymousApril 4, 2013 at 8:59 am
Wow. I tried IVIG last fall and got really sick from it. Went into the hospital for a week w aseptic menengitis, sucked. I’ve been on rituxin for the last 6 months but still no improvements. It is so frustrating not having any answers, like being handcuffed. The only thing that has helped me out a lot was getting on an anti inflammitory diet. I saw huge improvements within two weeks. Have you tried to control the inflamation w diet?
April 4, 2013 at 9:19 pm
i haven’t tried the anti-inflammatory diet–is it easy to follow? Most of my damage from the cidp is my feet, ankles and calves. poor balance, drop feet and walking difficulty. yes, the process of finding a treatment that works is frustrating, mainly the long waiting period after each to see if it will work. I got excited that the rituxin was going to work, i got many sensory changes in the beginning, pain where i usually had numbness, itching, burning and cramping–i know normally these don’t sound good–but they are when they replace numbness.
I never really got any significant strength increase though. so between that and the insurance company balking at it Im now back on ivig until the next treatment is decided. If i dont get accepted for sct then i hope the new dr i just found will start me on high dose cytoxin. its one of his specialties, which is why i switched to him.
I think the downfall for rituxin is that it targets b cells, but i dont think there is any simple way to test if the cidp is from b or t cells. with the stem cell tranplant they deplete both your b and your t cells. so my hope is that wherever this crap is coming from—-as long as they are sure it is coming from my immune system, the sct should do the trick. When are you due again for another rituxin treatment? My dr told me when i was doing it that i should see effect in a few months, then i read studies on it where some didnt see improvement until after 6 months.
AnonymousApril 5, 2013 at 6:31 am
Changing diets was rough at first. I did feel a drastic change in strength and mobility in my legs. My stamina increased as well. I was able to work full weeks again. Teaching Phys ed is tough when your legs dont work right. Kind of ammusing at times. I started treatments and the diet at the same time, the docs said that the treatments would not be working that fast, must have been the diet. My nero team at dartmouth hitchcock was shocked at my improvement. Than i went back in for another Rituxin treatment and my symptoms came back very strong, became extremely weak, sore and tired for about two or three weaks. ive been getting Rituxin for six months now and have not improved because of the medicine, tough call to continue or try something new. I feel im doing myself more harm getting the treatments. My symptoms sound about the same as yours. Drop foot, ankle support, poor balance. Im very curious about the stem cell treatment, im sure you have done your research. What are the main pros and cons of the treatment?
April 5, 2013 at 8:56 pm
the pro’s for the sct (of coarse this is all my opinion from what i have read) is that once you have it done you have a whole new immune system. they deplete your b cells with rituxin and then your t cells with cytoxin. so basically your immune system is brought down to 0 and then “restarted” kind of like rebooting your computer–lol. so imo the pro would be that as long as the diagnosis is correct for cidp then it would work because you would have a whole new immune system which is no longer attacking you. the cons are its still a clinical trial, insurance coverage may be an issue, the only place doing it is northwestern in chicago–so can’t have it locally, would need to be away from home/family for 6-8 weeks. a big con for me, is work, i own a small business in the mental health field and i cant just close down as my residents require 24/7 care.
i just am taking it one step at a time, once i go out to chicago next month, if i get accepted then i will start on the insurance issue, then if i win that battle i can work out the work issue—–
there is a face book page called cidp-sct that has tons of sct info. i have not joined the site because it is an open site, which means everything you post will go all over your fb page for your entire friend list to read. i am a pretty private person, and although my family and close friends know what i am dealing with, im not ready for it to be that public.
do you have symptoms anywhere else other than what you listed? on my emg/ncv i only show damage from the knees down. I have recently noticed that when i wake from sleeping my hands sometimes feel numb, they come aroung after i move around, but it worries me, because in the beginning my feet used to do that, then come back, and now they just stay numb. i was diagnosed in june of 2009, so am going on 4 years without finding a treatment that works—frustrating.
when you say dartmouth-hitchcock hosp. are you referring to the one in VT? that isnt too far from me, 3hours, i have never been there as a patient, but have heard it is a very good place. you have me curious on the anti-inflammatory diet, i plan to check it out. i would prefer to not have any foreign medication/chemo in me either–i swear once i get this cidp fixed i plan to stay as far away from medical professionals as i can. Lori
August 12, 2014 at 7:34 am
Retuximab treatment is being used and helping so many people. I live in England and Retuximab is now individual used to treat Wegeners and having positive results.
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