Anyone with Sensory Predominant CIDP?

This topic contains 16 replies, has 5 voices, and was last updated by  PikNik77 1 week ago.

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  • #113847

    PikNik77
    Participant

    Hi! I was recently diagnosed with a rare form of CIDP called Sensory predominate. Basically, my main symptoms are numbness and a complete loss of feeling in my feet, lower legs and fingers. I don’t experience pain or tingling or discomfort. My motor functions are fine, no weakness, no fatigue, no loss of muscle tone or function. My neurologist said this is incredibly rare. I started going numb about 13 years ago starting in the tips of my toes and moving slowly up both legs equally until I started losing feeling in my fingertips 2 years ago. I was always told by numerous doctors that it was idiopathic and I’d have to just live with it. But I started seeing 2 neurologists this past year and finally received a plausible diagnosis. I am starting IVIG therapy next week with an infusion 2 days in a row and then every 3 weeks. My questions are, 1. Does anyone else have this form of CIDP? 2. What therapies have you tried and what were the outcomes? 3. Will I regain any function or will this just stop it in its tracks? Thank you!

    #113848

    Twiggy
    Participant

    Hi,

    Yes I have CIDP (chronic inflammatory sensory demyelinating polyradiculoneuropathy) It is very rare (one case in 1m). I have had IVIg (borderline response) twice, been on steroids (no luck) and now I have plasma exchange every three weeks, originally over 5 days several times, then over 4 (just the one time) and then over three days it three wasn’t enough so I am going back up to 4 days when i’m next in hospital. We’re trying to get funding for Rituximab (not easy) and if we don’t have luck there I will have a Portacath inserted and I think the plan is every three weeks of two days of PE. I get a lot of pain, sharp, cutting in pain, stinging sore feet, pain and prickles in the hands (feet and hands also go purple (autonomic neuropathy), burning, prickles, crawling, tightness and pain in my nose, forehead, head, shooting pains in my head, cutting in pain in my neck etc, tightness, pulling etc around my gums too. I hope this helps. People who respond to PE generally respond to Rituximab which in some cases pushes the condition into remission. It’s a long road! I work.

    O.

    #113849

    PikNik77
    Participant

    So do you feel like you’re getting anywhere with the plasma therapy? My neurologist told me I could regain full function but it may take years. I can’t do the steroid therapy because I take several medications that react because with Prednisone. Why did you only do too IVIG treatments? Did you have bad side effects?

    Thank you so much for responding. 😀

    #113852

    Twiggy
    Participant

    I made a mistake in my reply, i meant to say that I have PE every six weeks. The plan is to have PE every three weekends over two days if I don’t get Rituximab and if contractually my consultant can’t administer it to me if I have paid for the drug (we need to check NHS rules). PE is a big help and has reduced my many symptoms but six weeks is not often enough. Week 1 say is my treatment week and then weeks three and four I will notice a big improvement. Symptoms then start creeping back week 5. I had numbness in my feet and hands when the condition started 18 months ago and I don’t suffer with numbness any more but where my hands and feet were going numb at the start my sensation in my finger tips and toes isn’t quite as sharp as it is further up the fingers and feet. I’m aware of that when the pin prick test is done. After the first IVIg I had improvement for two weeks but after the second treatment I had improvement for only one week and nerve conduction studies showed only boarderline improvement. That’s when I was taken off the IVIg and put on Prednisoline. That caused a flare up in symptoms plus a bone scan showed I have osteopenia so I was taken off the steroids. I’m in the UK by the way but am having difficulty getting funding for Rituximab in circumstances where PE costs £1,000 per day and Rituximab £2,500 and if it works I may only need it every 10-12 months or never again. If it works it would clearly save £1,000s of pounds. My CIDP started in July 2016 with a whole host of bizarre symptoms and I started IVIg in the December. I started PE in June last year and nerve conduction studies after only theee weeks showed between 50 and 100% improvement. I hope this helps. You have had it a long time. How have you been coping? I would be interested to hear how you get on. Cyclophosphamide is very immunosuppressant but my consultant won’t give it to me on safety grounds. I really hope we both push this horrible thing into remission.

    Regards O

    #113853

    PikNik77
    Participant

    Wow! Sounds like it’s been quite a roller coaster for you. I’m looking forward to trying the IVIG because I think it will be the most minimally invasive on my system with the other medications I take (bi-polar and anxiety). From the very onset, 13 years ago, I never had pain. For the first couple years I had what I called “nerve jolts”. I would get a sort of jolting sensation in my lower legs and feet, but only at night when I was laying still. After that I never had any other pain. I just slowly went numb. The numbness in my feet is so pronounced that last year I accidentally kicked the corner of a wooden box and broke my pinky toe and did not even realize I had broke it until I saw blood on the floor from the skin between those two toes being torn because my pinky toe broke outward. After the day went by I felt some deep dull pain when I walked on it but that was pretty much it. I have to be super careful and check my feet often for cuts. I’ve never had muscle weakness or pain or balance issues either. Just loss of sensation. Losing the feeling in my hands has been far worse than my feet though. I drop things all the time, can’t open containers anymore or use a keyboard. It’s awful.

    #113854

    Twiggy
    Participant

    Hi
    Yes I imagine you can’t wait for the IVIg and I imagine you will get some improvement. Presumably you are in the States? Does your insurance pay? After that you need to find out how often you need it. PE apart from having a line inserted in your groin each time is pretty harmless. It drains away your plasma and you see it filling up in a bag and it’s dark yellow. Clotting Levels become an issue but it’s all monitored. I have my next PE the week of 26th February but I go into hospital on the Sunday. I wish you all the very best and please stay in touch because I have never come across anyone with CISP and we may be able to pass on useful information to one another. Do you have any idea why you might have got this? I always blame it on chronic stress that I went through. The problem with CISP my consultant has told me is that because it’s so rare no drug company will pay for trials and so it’s trial and error for the patient and clinician. Once you have tried the three frontline treatments (steroids (I know you and I can’t have these), IVIg and PE) you can then look at immunosuppressants but they come with an obvious risk. Do let me know how you get on with IVIg and similarly I will let you know about the Rituximab.

    Regards O

    #113861

    cer100
    Participant

    PE apart from having a line inserted in your groin each time is pretty harmless. It drains away your plasma and you see it filling up in a bag and it’s dark yellow. Clotting Levels become an issue but it’s all monitored.

    In my case the line has been inserted in my neck but still no issues other than one treatment my BP dropped. I have had the clotting factor issue a few times requiring a tranfusion the day after PE.

    #113867

    Twiggy
    Participant

    Has anyone been “cured” with immmune suppression?

    #113868

    dsfritz1
    Participant

    Pik,

    I don’t have the same CIDP as you but I have sensory type and no weakness so far. I do get burning in feet and reduced feelings in hands/feet. I had trouble with balance and ploped my feet when I walked. I started IVIG in November and after the first 2-day treatment my balance got better and I stopped ploping my feet. I get infusion every three weeks of 80G Gamunex. I am 65 so I have Medicare (original) and a supplimental plan which pays for my treatments. I had to have doctor switch from original prescription for home infusion becasue that would fall under Medicare D Prescription plan which would have been very expensive for me. I still have burning in feet and when someting cold is placed on foot it still feels warm. My left hand usage has improved but is still reduced. I see my nurologist in April to review my progress and treatment plan. I have moderate fatique which is worse for a week after each infusion. I drink lots of /coffee/caffeine each morning but it doesn’t help the fatigue. I am able to still work but it is challenging at times. I hope and pray IVIG will help you as it has for me. Let us know how it goes.

    #113870

    PikNik77
    Participant

    I am in the US, and thankfully have fantastic insurance. I won’t pay a dime for anything. It’s not even subject to my deductible. I finally got the first two treatments lined up for next Thursday and Friday. Because I’m a big woman, I was told my treatments can take up to 8 hours depending on how I tolerate it. YIKES! That’s a long time to hang out with a stranger in my home. Lol. I will definitely keep you posted and you let me know how things continue for you. I can’t tell you how much I appreciate you responding to my post.

    #113871

    PikNik77
    Participant

    Thank you for responding. And thank you for your prayers! 😊 How long do your treatments take? Has the fatigue been worth the process? Are there any tricks you’ve learned to dealing with the side effects?

    #113872

    dsfritz1
    Participant

    I get 2 bottles of infusion each of the two day treatment every 3 weeks. I’m there usually for 4 hours each day. I guess becasue i had never gotten IVIG before and my age, my doctor’s orders state not to excede 150ml drip. At the infusion center the nurses told me their normal full rate is 200ml. They infusion always starts slowly [50ml] then increases to max. This is to reduce the chance of side effects. The doctor’s orders also state to give benedryl and acetaminophen. Some patients get headache or rash/itching. THe only side effects I’ve expierenced is the increased fatigue and if i’m given the infusion at wrist or on hand i will bruise. Bruise doesn’t show until arround day 5 and last 2-3 days…no big deal. As I said, the only other side effect is the increased fatigue. I haven’t talked to my doctor about it. I’ll wait until my next visit since i read about CIDP fatigue and gather one has to learn to live with it and adjust accordingly. Fortunately my work understands and my job is such that I can schudule my workload to not do anything physically strenuous for several days after each treatment. The positive effects of the treatment do outweigh the negative. Research indicates that left untreated CIDP will continue to degrade a person’s quality of life. About 1/3 of untreated end up wheelchair bound.

    #113873

    Twiggy
    Participant

    I wish you all the best. I think when I was having IVIg improvement started pretty quickly. With plasma exchange I feel improvement weeks three and four. My consultant says 40% of cases go into spontaneous remission but I have given up on that! What is a big help if you aren’t one of the 40% is knowing that you aren’t alone. I’d never heard of CIDP/CISP and no-one I spoke to had either so it took a while to get my head round it. What is also a comfort is that there is treatment out there although finding the right one and frequency can be a lengthy and frustrating process because everyone is different. There is even potential remission through immunosuppressants. That’s what I’m hoping for one day but if i’m not that lucky I just have to resign myself. Let us know how you get on.

    Regards O

    #113874

    Hi PikNIk
    why did it take so long to diagnose? did you ever have a nerve biopsy?
    (I myself am undiagnosed but similar loss of sensation hands feet…)

    #113875

    PikNik77
    Participant

    When I first started noticing the numbness, I went to a podiatrist. She did a NCS and determined that I had a pinched nerve in my lower back and that losing weight coupled with chiropractics and acupuncture should keep it from getting worse. It did not. Every chiropractor I went to (we’ve had several moves since) assured me that they could fix it. They could not. Every general doctor I went to said there was nothing they could do, and because I wasn’t B12 deficient or diabetic, it must be idiopathic. Finally, when my fingers started going numb my current GP sent me to a neurologist. She checked Sensory and motor function, gait, balance, reflexes and I had 23 blood tests done and another NCS. She was convinced I was b12 deficient because I didn’t fit in with the typical CIDP because of the lack of muscle issues. I was not b12 deficient. So she sent me to a more specialized neurologist. 13 more blood tests, another NCS and an electromyography and he decided I probably have a really rare form of CIDP called Sensory Predominant. But unlike most people with SP I don’t have the herpes virus… So who really knows. I just hope that the IVIG works and that at the very least, the feeling in my hands will return. I have not had a never biopsy yet.

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