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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP flare up

#1

Hi all, I was diagnosed with CIDP IN 2015 and it has been pretty well managed since then. My infusions were changed from 4 weeks to two weeks and also since i am severely obese about 1 year ago a new Dr switched me from Azathioprine to Cell Cept and i was fully weaned off the prednisone. I did not experience any issues but I am currently in a flare where i am very fatigued my legs weaken so i cant stand very long or walk very far. My Dr doesnt seem to know whst to do to help. Do you all have to wait out flare ups or is there somerhing thst czn be done. I would think they could add a steroid but instead im left helpless

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#2

I don’t get the infusions I only had a few and didn’t seem to help me, I take nothing. At times my legs and hips don’t want to go. I just keep on truckin. I go to a chiropractor every 3 weeks to line up my hip.

#3

I was diagnosed in October of 2009. In the beginning my infusions were 2 weeks apart. Now they are 8 weeks apart with the goal being to stop them and the cell cept. My dose of cell cept has been cut in half. For me what has helped me the most is diet. I followed the paleo diet for along time. Then I went to an alternative doctor and he tweaked it some and now I am doing great. I had an infusion on Thursday, but I am not sure I needed it. If I stray from my diet my symptoms will return. Please don’t make any drastic changes in your diet without talking to your doctor. One neurologist told me that a study currently underway (2013) was showing that in some people gluten can make symptoms worse. I know for me it is a huge trigger, along with sugar. Just something to consider.

#4

I have had flares and my Dr. gave me 5 Gammagard infusion orders and continued weelly for about six months once a week. I am now taking an infusion every 14 days and haven’t had a problem in 3 years. I have been taking gammagard for 8 years. It seemed to work for me better than others. Good luck.

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#5

I am on Privigen every three weeks but mine went from GBS to CIDP! I’m doing okay on this infusion, it may go into remission, I hope and pray. I’ve been sick since 2011, I’m tired!

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#6

My daughter was diagnosed in January 2014 with GBS. About 2 years later Mayo Clinic in Minnesota told us she had CIDP. She relapsed constantly until her neurologist suggested an infusion of Rituximab. Given daily over 4-5 days just like an IVIg. It’s normally used in cancer patients but it worked so well for my daughter she hasn’t relapsed in over a year! Of course still struggles with nerve damage but no relapses in more than a year is amazing. Might be something you want to look into.

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#7

I was diagnosed with CIDP in January 2018. I cannot hardly walk and I suffer with nerve pain. I have been on and off of prednisone for a year. I have been having Privigen IVIG infusion every other week since I have been diagnosed. I will continue to fight this horrible disease and I pray that I can get some mobility back. My body and my mind is tied.

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#8

I have had CIDP for about 10 years. I’ve been on IVIG for at least 7. My Dr wants me to try cell cept but I am a bit fearful about what it could so to my immune system. I took a holiday from ivig 8 months ago and seemed to go into remission. I’ve been in South America since December. A month ago my symptoms returned worse than ever. I am going back to the USA in two weeks and my Dr will order 5 days of intensive IVIG. I’m discouraged. Have others had good results or bad from cell cept? Best to all of you. David

#9

Katie2, would you be willing to share what insurance you have? My husband has CIDP, has been through every other treatment and continued to deteriorate. His doctor recommends Rituximab and our insurance is refusing to pay for it because it is “experimental”.

#10

Doll - don’t wait. Every bit of mobility you lose may be permanent. That has been my husband’s experience. He has regained nothing he has lost over the last 2 years. All we hope for is to stop the deterioration at some point. Don’t wait - insist on someone doing something!

#11

Please consider talking to a professional,
Clergy, Stephen minister to help you! You are so new to living with a chronic condition and your life is completely changed and everything is hard and painful now.
You can become physically better than the depths you have fallen. Hope! You should have hope that you can get better because I did! Nurse your mind and health! Become better able to handle the tribulations. What distressed you now can be made more manageable. Get around a chronic pain support group. Get a separate pain management doctor and do not rely on your neurologist to help you be comfortable.
You must get pain level down! You can not survive in terrible pain it is too hard. Get some help being comfortable, your neurologist won’t go where you might need to be.
Where you are now is not where you are destined to be. Seek help and in person support and reach out here too! You are a dearly loved child and I’m sorry for your struggles. Tomorrow might be better!

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#12

I have had recurrence of symptoms too but there does not seemed to be spreading or growing in the area it once did before remission . Before remission the effected area was spreading up the lower legs into left thigh,. Since remission even with renewal of heightened pain the area effected isn’t changing. A short duration steroid pack seems to help lessen the pain too.

#13

Please push yourself to keep walking into the pain! Try whatever you can do to lose weight. Do not succumb to the pain and discomfort! Reclaim and hold onto all of your physical self that you can!

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#14

I have found the only way to manage flare ups or illness for me which is being treated with 5 IVIG infusion treatments every 4 weeks, is to increase you neurotin dose which manages the nerve responses and associated pain. Just watch the neurotin dose when and driving. Be sure to take your vitamins for muscle strength. I take citrical calcium, omega 3s, vitamins B and C high doses of both, and bromelain. Good luck. Anne

#15

Thank you so much! Thia helps. David

#16

Thanks William. I feel less alone today. I plan to return to the pool tomorrow. IVIG is 3 weeks from today. Best to you too. David

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#17

Thanks for this William. I will.

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#18

PS. The higher doses of neurotin not only manage the nerve pain, swelling, but does indeed support much higher levels of functionality and energy. Do not miss the Omega 3s, vitamins B, C, and Bromelain 2 times daily. You must also add good mix of rest while awake, physical activity or physical therapy, and sleep until you awake. If you dont get your sleep, everything gets really bad. Its the mix thats key as you build strength, but up your dose of neurotin. Ok, Anne

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#19

Hi Katie I’d recommend Rituxamab as well this will be my 4th dose and it has helped a lot.

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#20

Thank you so much. My Dr incressed my Cell Cept already but no change. I wonder why she hasnt changed the IVIG. Ive been on Gamunex C since I was diagnosed in 2015. The only change to that has been to move it from every 4 weeks to 3 weeks. My flare has been the same for two months now since before my last appt with this Dr. Now she wants to see me tomorrow to run more tests and the office has made me feel like she doesnt know what course to take. I appreciate all the advice. It sure helps to be able to share with people who have been here themselves or with a loved one.

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