My husband received CIDP diagnosis last September after he lost control of his hands, which was a “new” thing after the initial GBS diagnosis 6 months prior. By the end of October he could no longer move any of his fingers. He has other symptoms but the lack of ability to use his hands is by far the most disabling. He has had IV steroids, IViG and started Rituximab because nothing has helped to this point, not at all. Has anyone else had this experience and did anything help you?
My 22 year old daughter also lost the use of both hands and arms from CIDP. She was diagnosed two years ago and has monthly IVIG, is on steroids, and started Imuran about 9 months ago. She feels she is gaining some mobility again in one of her arms especially, and will see her Doctor Team next week for a full examination again, and until now, she has not regressed or improved since her diagnosis. I’m not sure if it will keep going, but our fingers are crossed - even for a minor change! Otherwise, like all other sufferers, it is challenging and frustrating to continue treatment and see no change.
Bingo familyfive! Lots of treatments,not much help. I’ve been on Ivig for 7 years, had a 6 month series of cytocin (chemo off label) which did no good but caused permanent harm. I have declined steroids until someone can tell me that they wb more than a temporary help. Similarly, I have so far resisted Rituxin for the same reason. I nearly fall with every step. Can’t walk without a cane or a rollator. Rituxin is the only option left. Not sure what I’ll do yet.
My heart hurts for both of you. I assume both patients are disabled and have full time caregivers? As the primary caregiver I am still struggling with how to manage all of those details and would be interested to hear more about both of your journeys. The inability to use one’s hands pretty much requires a full time caregiver in our experience, and I don’t know you manage that requirement.
Prayerful for you. I saw significant physical improvement when my CIDP went into remission. There is a possibility of improvement so work hard toward it! Do everything you can to reclaim your health and if it doesn’t work, try again. I know this is hard! That’s what will make the accomplishment, even minuscule, all the richer. Don’t quit on you. I’m proof of recovery from CIDP. Love to All! Bill
My daughter has become quite inventive and asks for support only having trying some things on her own first. As for remission, we pray for it and try to make the best of a bad situation. As in anything, some times are worse than others, but you just have to keep rolling along. On my end, I’m a super proud mom. She has continued in University and is even working in the summer months. She has a boss that understands that there are many things she can do and is accommodating her needs. Very fortunate!
Thank you for your encouragement Bill. Much appreciated. I’m going to see what I can find out whether any folks on the forum have had any positive effects from Rituxin.
I Had three years of I G and one year of steroids. I would no longer recommend steroids to anyone. I had full fledged Roig rage and couldn’t control myself today so I quit.
Yes, those are among the reasons I declined using them. Did the steroids provide a lasting benefit for you?
It’s possible the year on roids might have been a remission trigger? I’ll never know what caused remission but it’s possible roids had something to do with it. Other than that roids provided no long term benefit that I know of. It did keep my tailor happy as I gained over 40 lbs in a year and temporarily increased energy to go around and piss people off.
LOL. Good answer. Glad if they helped you. I’ll keep on punchin’.
Maybe the inventiveness comes with time. Second dose of Rituximab is next week, and hoping the coming months will bring improvement. Sounds like even when CIDP does go into remission nobody really knows why. That is discouraging. Thanks for the insights, all.
No we don’t know why Cidp goes in remission, only thankful for healing and regeneration. Shifting our lives from decline to improvement is amazing, slowed down by the damage done. My son wants me to change my diet to help my disease. Can diet change reduce nerve pain from demyelination and remyelinating?
Does anyone believe diet change can reduce nerve pain?
The scientist part of my brain doesn’t believe diet can help nerve pain. But I am sure there are those who think it does, and at this point what do you have to lose?
The thing I stand to lose or miss the most is a good bowl of ice cream! If I thought it would make a bit of difference I would eat earthworms, but I don’t see how a food is going to interrupt the pain signals given out by damaged nerves.
Well I don’t either, but the timing is good for an experiment. Why don’t you give it until Memorial Day? If you can’t tell any difference at all have that bowl of ice cream once a week and consider it a a step-down from total avoidance for another month. Then if you can’t tell any difference by the 4th of July, I say eat your ice cream the rest of the summer! And if you can tell a difference maybe it will inspire the rest of us to give it a shot.
Williamtscott, did you change your diet and give up your ice cream? If so, how ya feeling?!
I didn’t give up the ice cream right away, but I did stop eating the delicious food product 2 weeks ago. My overall pain level is good the past few days. I also started taking daily doses of CBD orally.
My pain management Doctor told me that dietary changes have NOT proven to make changes to this disease. Thank you for your interests in my care.
Hi…my fingers are intermittent…sometimes worse …but in rehab…i got a pen that circles and grips and locks in if i have to write…( not always easy ) and possibly look at the foam insulation for pipes to put around everyday stuff to en large the objects you are holding…i feel it makes it more bearable to hold on to things
Amazon sells a variety pack of different circumferences of foam stuff that can be cut to size. I got those and cut as needed for my husband’s silverware. It worked for pens for a while, but he has lost so much ability he just can’t write at all anymore. There are also plastic doorknob covers that work really well - otherwise he would be unable to open doors. These slide over the knob and the knob can be turned with an elbow with that cover on it. If you need that, here is the name of them: Able Life EZ Doorknob Grips - Arthritis & Senior Living Aids, Open Doors Easily, Set of 2