Living with Polyneuropathy CIDP, GBS, & CMT

Ivig how long will i need it?

been on it for 4 years every 3 weeks 2 days each infusion

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I am one the lucky ones! I stopped treatment after 1 and 1/2 years. My neurologist deemed my CIDP inactive in April. I am still doing fine. I pray to God it never comes back. I no longer have trouble keeping my balance and can walk normal and can actually type with my left hand again. I even swing my left arm when i walk. At worst point I never swung arm then as treatment was at the one year point I swung but not if i was talking. Now I swing it whenever I walk/talk. I am 67.

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Yes you are a lucky one, glad to hear you are doing so well it gives me hope. Thanks for your reply and keep well

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I have been getting treatments for 8 years and assume i will have to continue for the rest of my life, unless a new treatment is found. However, every case is different and there is no “one” answer. I finally got a port and it makes the treatment easier to handle. I have infusions every other week and receive 45 grams (250 ml). Hoping your CIDP gets better and you won’t need IVIG in the near future.

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CIDP can and does go into remission and IG can be discontinued. Your today does not equal your tomorrow. You will have have the opportunity to improve yourself again in the future when your disease turns off later. The progression will stop, the extreme weakness will subside, you might regain lost muscles like I did! Endure today as your trial! Have hope in tomorrow for a better day! You are a loved child of God!

Let your faith be stronger than your fears.

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Thank you for your kindness and words of hope. I will hope for better days ahead, and try to enjoy every day to its fullest.

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Every thing mentioned is a fact I am in the same boat. I get IVIG weekly. Have been for going into my 5 year. My fear is the IVIG shortage. I have been partial dose and sent two different facilities for treatment in the past four months. No one seems to know how long the shortage is going to last. I wish you luck and you’re in my prayers all of you With CIDP are in my prayers

Thanks to all for the words of hope and encouragement they are much appreciated prayers for all

It is good to hear that CIDP can go into remission. However, how does one tell whether it is in remission or simply the fact of the IVIG working?
I’ve been having four weekly infusions since diagnosis some five years ago. I have been told that this is pretty much the new ‘rhythm of my life’.
I have 35 gram of Privigen (previously having been on Octogam and Kiovig).

I too wonder how to know remission from IVIG working, at times I would love to be free of the treatments but fear the very bad symptoms will return.

**There are basically two separate groupings of CIDP. One group is remitting relapsing CIDP. At onset of CIDP symptoms, it’s treated with IVIG or plasmapheresis for 3 to 4 months. During that time, symptoms subside or even get better. You then stop all treatments completely and you don’t get any worse, sometimes get everything back. That “remission” state can last months to even a couple years. The other form CIDP never hits a remission where you can stop treating it. The goal in this version is to spread IVIG treatments further apart or use other options for treatment. There is only one way to stop CIDP forever. It is HSCT-Hematopietic Stem Cell Transplant. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6481566/#CD003280-bbs2-0127 ) This is FDA approved SCT protocals used for 30 plus years. https://clinicaltrials.gov/ct2/show/NCT00278629 )The word “Transplant” with Stem Cell means/requires chemotherapy protocal and stem cells must come from bone marrow or GCFS stimulated stem cells removed periferrally. This is NOT Stem Cell Treatment or Therapy that are fake, no chemo, and do nothing. True SCT for CIDP has been done in USA for 17 yrs and worldwide 21 yrs. In 12 European countries, it is “standard of care” for IVIG dependant CIDP patients. Many people incorrectly think SCT is only for CIDP patients on deaths door and extremely dangerous. This couldn’t be further from the truth. SCT for CIDP has a death rate of (0.26%) which is LOWER than IVIG’s death rate of (4%) when used 5 years or more. Over the last 20 yrs,SCT protocol for CIDP has been modified specifically for it and other autoimmune diseases(Lupus, MS, Scleraderma, Chron’s). SCT has a 92% rate of no disease progression at 5 years. That means after doing SCT, you take no meds to treat CIDP. Approx 60% of CIDP patients have improvements, not just no progression. The earlier SCT is done the better the outcome. Your CIDP can be to advanced for SCT. I know bc I almost was. For 18 yrs, I spent 7 days out of every 28 days in the hospital doing high dose IVIG just to slow my CIDP. I spent 208 days in the hospital last year due to CIDP treatments, complications from IVIG, and related infections. (IVIG was never intended to be taken for years and decades. After 5 yrs of IVIG, the death rate from complications of IVIG is 4%.) IVIG was keeping me alive and killing me at same time. If I stopped IVIG, my CIDP would take over and I would be dead in 3 to 6 months. I was in a motorized wheelchair, had no sensation or movement from midthighs down, no sensation and extremely week fingers, hands to mid forearm and partial paralysis of my diaphragm that required oxygen 18 to 20 hours daily. Then in May 2019, I did SCT. It stopped my CIDP cold. I have now been home without a hospitalization for 176 days in a row. The last time I was home more than 22 days without being in the hospital was 18 years ago. I have done no IVIG or anything else to treat the CIDP. I have had no progression and no new symptoms. I have actually had improvements. I use half as much oxygen and can actually move my thighs. My EMG/NCS actually shows improvement, including 2 nerve blocks that are gone. If I get no better, my SCT was a complete sucess- It stopped the progression, which nothing had in 18 years. Imagine if done years ago. Once a patient is IVIG dependant or nothing stops the CIDP progression, SCT should be considered- as done in most European countries. Most patients in US programs have been diagnosed for 5 years or less.