Just be aware of heavy side effects with rituximab. If you have any sort of immune system problem, this med can worsen symptoms and make one’s immune system inneffective. You can be sick all the time…
Lots of people have no problem with rituximab. It’s a targeted medication and your doc is the best judge of how your immune system is likely to respond. No need to worry before you even try it!
Seenie
1 Like
Of course. My daughter is under my Kaiser in Hawaii. They really came through for her. Her neurologist is amazing and he goes before the board to get her what she needs. They covered her trips (2) to Minnesota, her plasmapheresis, all IVIgs and the Retuximab (except for the normal $20 co-pay each infusion).
1 Like
My daughter’s neurologist told us that if she was going to reject the Retuximab it would most likely happen immediately (during her first infustion). Therefore they administer the first infusion under a physician’s close eye. Fortunately, she accepted it well.
Please don’t misunderstand, this is not a cure all. She still suffers from plenty nerve damage and is on plenty meds but not relapsing in a over a year is something we are so thankful for. Making 2 steps forward only to take 5 steps backward every 3 months is a definite positive. Good luck. And know we are all here to send you positivity.
As I understand it, CIDP and GBS along with a lot of illness are autoimmune diseases. Therefore anyone with these diagnoses have immune system problems BIG TIME. Many of these patients are sick all the time because their immune system is almost non-existent or reacts really weird to any little thing out there. There are side effects to all drugs and treatments but I’d put my money on what the physician/neurologist recommends.
Thank you. After many many rejections for the Rituximab treatment, we had a miraculous intervention and it has been approved for my husband. What are your daughter’s symptoms as far as neuropathy?
Find a doctor to give you ketamine lozenges, I have had this crap over 20 years and went through several diagnosis, Anyway dec of 17 I had a massive attack lasted 6 weeks I lost 35 pounds nothing was working right the left side of my face went numb along with the numbness in much of my body. Long story short my 3rd er visit because my wife was flipping out I was happy to just lay there and die. so 3rd time I was kept over night given fluids. the next morning I went for a upper GI the anethesialogist sorry about spelling, came to say hi saw my leg twitch ask me whats up CIDP severe damage and it had spread to autonomic nerves much fun. She turned and asked for ketamine, The effect was so dramatic i was awake before the test was over soon as the scope was removed I sat up grabbed my feet and could feel them for the first time in 15 years. Afterwards I found the truth but will skip all the politics and big business. Others knew the truth outside the states and there was a summit in the Uk ketamine was featured as a drug to orally treat neuro pain. 90 mins later I was up and walking better then I had in months, My pain doc went to the summit because for 6 months I was raising holy hell at every doctor over this horse shit. she came back started writing scripts for hundred of people after me. With the horrible pain gone I have more control. Torso pain and vomiting can still be tough eating and just taking meds can be impossible at times and I was told oh well. then this happened now I can ride a bike 5-8 miles on a good day just stay near the house. Some people cant handle it and it is not repairing anything it just Best way I can say it is its like bad signals are diverted to cleaner routes, lessening pain for me 95%. I stopped opiates because their crap for this anyway. I cannot tell you how much better my life is after over 20 23 years really and untold problems and pain. Problems I still have but with so much less pain I kinda have a life again. Ketamine lozenges and their not all crazy controlled at least not yet. Hell my pharmacy mailed them to me lol good luck Peace. always this story is much bigger and big pharma should pay for their crimes against the people
1 Like
Excellent! It may not be the answer but it’s worth a try. Different strokes for different folks, yea? Especially in the CIDP community.
My daughter struggles with almost no fine motor skills in her hands. Buttons,
zippers, picking up coins, opening jars or bottle tops, jewelry, all are on the no-can-do list. Her penmanship is worse than a kindergarteners.
Her feet (from her ankles down) are either numb or are painful (painful if she lags on her gabapentin). She trips and falls often. She has many scars to show for this and has even been asked by employers and strangers if she’s intoxicated! That’s probably due to the fact that when she falls she tries to just make light of it and is forever putting on a happy face.
But as she sees it - it could be worse, right? She could back be back in a wheelchair, paralyzed, and needing assistance to do everything including dressing, toileting, and other things people without an autoimmune disease take for granted.
Telling you - this girl is my hero and she’s only 25.
Thanks for asking and hoping and praying good things for you and yours.
1 Like
Katie2, it sounds like your daughter is close to the same state my husband was in 18 months ago. How on earth is she still working and what does she do? I know people “enabled” my husband to work long after he should have gone out on disability. He finally went out when he could no longer pull up his own pants at work. He did continue to get worse, but after finally getting Rituxan he stopped declining. No improvement yet, but at least he still walks. He falls, like your daughter, and has zero use of one hand and very limited use of the other. My heart hurts for your daughter. My husband’s reality is horrifying at 57. At her age, I cannot even comprehend. He had a good life until this started. She hasn’t even had a chance to live yet. She must be a true miracle of inspiration.
2 Likes
Totally agree I haven’t had one side effect at all, it was really has been the best treatment so far worth trying for sure.