Tagged: newly diagnosed with CIDP
November 8, 2019 at 1:39 pm #117252LynnersParticipant
I was diagnosed with CIDP in June, 2019. I am currently undergoing IVIg treatments. I am to receive my 4th regimen next week. I was treated for triple negative Breast Cancer (Stage2) in 2016. I had 14 rounds of chemotherapy and 30 radiation treatments. I was doing fine until the first fall in Jan. 2018. I had a mild case of Lupus which is now non-existent. It appears to have turned into CIDP. Has anyone here ever heard of a connection between chemo and CIDP?
My question is, on average, how long does it take to know if the IVIg is working? I am unable to walk at present without the assistance of a walker. Also, have you found anything that helps combat the fatigue?
Thanks. I am grateful to have this forum in which to share our ideas, research & experiences with!
November 8, 2019 at 2:53 pm #117253Ron BrunelleParticipant
Hey! I’m Ron.
I am so sorry you’re going through such a tough time. I’m not sure if I can give you much insight, but maybe I can shed some light on CIDP as I understand it, and in turn give you some pertinent information. I was diagnosed with CIDP about two years ago. Before that I battled with Lyme disease for years. I suspect anything that sets off your immune system will create the right conditions for CIDP to take hold. That, the antibiotics for the Lyme, the oxycodone for the neuropathy pain. All these conditions and medications alter your immune system and metabolism.
I am not a doctor but I’ve given more thought and done more research into my condition than my doctors have.
With doctors, most I’ve found, will proscribe the longest taking therapy, if they even agree to try and treat you at all. I don’t want to seem cynical, but most really don’t want to try very hard. Unfortunately doctors are in business to make money. They don’t go through med school because they want to help people.
There! I had to get it off my chest! Ok, let’s move on.
My experience with IVIG, Gamunex, the neuropathy, the numbness, the pain never subsided. In that aspect, it didn’t work for me. But the weakness, that one symptom, the IVIG did keep the weakness away. That symptom went away shortly after the first infusion.
I’ve begun my second treatment of Gamunex, after taking a break for 8 months. The weakness has gotten so bad I can barely stand. This second sets of treatments don’t seem to be as effective and fast acting as the first treatments.
A relation between chemo and CIDP I’ve not heard. I actually heard of a therapy for CIDP using chemo.
I hope you find the answers to your questions, I feel your frustration, believe me.
My best advice, do your research. You are your best advocate. If you need someone to talk to, you know where to find me.:-) Ron
November 8, 2019 at 3:35 pm #117254LynnersParticipant
Thanks for your reply and information, Ron. I am there with you as far as we are our own best advocates. No doubt.
I have been doing much research on this disease. I stumbled across Onno Faber through a Ted talk. He, too, is suffering from a rare autoimmune disease. His website is http://www.rdmd.com. It is for rare diseases, CIDP, being one of them. I now have all my Doctor records, tests, notes, etc. in one place. I am also kept informed as to clinical trials. One of his goals is to run all the data points for a person through a computer program to determin DNA in hopes to find a match to a drug already out there that will help the condition. I see a day in the future where this will be standard protocol.
Ron, I read a success story from a person who has received much relief via PE. Have you looked into that?
I am doing PT twice a day, riding a stationary bike as much as I can. Some days it is easier to do than others. I also bought a Vissiq neuromuscular trainer which has made it much easier to take walks. Ordinary walkers don’t let you stand up straight! Vizziq is brand new to the market. It’s developer is a lady who has MS. She is a physical therapist. Her name is Katherine Haig. I believe she has a couple videos on YouTube. You can google Vizziq if you are interested.
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