1. < Neuropathy

CIDP, While I am waiting for the tests, genetic?

Posted by SusanEllen66 @SusanEllen66, Aug 4, 2023

I’ve have neuropathy since 2016. It started as small fiber, and a short time later large, with evidence of demyelinating polyneuropathy. That was back in 2016, and the neurologist I was going to never said a word about his findings. The only reason I discovered this is because I cleaned out my medical records last weekend. It jumped out at me, and I was quite surprised!
Between 2016 an now, I’ve been on several steroid medications for Vasculitis, but I had been noticing that the PN was getting worse very slowly. Currently, I’m not taking a high dose of steroids. All of a sudden the PN is spreading and becoming more painful. My legs are especially bothersome. They feel like I’m walking on jello. I’m very wobbly, and my direction is not always accurate. I sway “off course” many times.
I’ve started using a cane.
My current neurologist is going to be doing neurology testing in 10 days. If I have CIDP, I’m going to ask to be treated with IVIG first and foremost. If I have had this for 7 years already I need to make sure I don’t fall behind.

Additionally, my father was diagnosed with CIDP at about the same age as me…

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SusanEllen66 | @SusanEllen66 | Aug 24, 2023

One thing no one has mentioned is the extreme fatigue that comes with Chronic Inflammatory Demyelinating Polyneuropathy.
How do you stay awake!

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roslyn2314 | @roslyn2314 | Aug 24, 2023

Hospital is for 5 days for initial infusion because it's a new product being put into your body and monitoring is required...
Monthly top ups are just day hospital.This is for WA Australia. USA is prob very different

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roslyn2314 | @roslyn2314 | Aug 25, 2023
In reply to @SusanEllen66 "@roslyn2314 thanks May I ask why you had to be in the hospital? Was it related..." + (show)
@SusanEllen66

@roslyn2314 thanks May I ask why you had to be in the hospital? Was it related to the C I D P?
That sounds interesting. I’m hoping for a plan of action soon…
It’s scary and annoying…

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Yes hospital for the first infusion to closely monitor side effects. After that just day visit once a month

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overeazy | @overeazy | Aug 25, 2023

Mine are at home, 2 days every 3 weeks. Privigen. The nurse comes to our home and spends several hours. The pharmacy ships me everthing needed a few days before the infusions. It is becoming a routine, next will will be my 5th treatment and I get these until further notice. Like I said, I feel much better as far as swelling and motor function. But I also have on-going reactions that steroids do suppress but that come back as the steroids wear off.

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harley22 | @harley22 | Aug 25, 2023
In reply to @overeazy "Took 12+ years to diagnose my CIDP. After three back surgeries and a neck fusion. No..." + (show)
@overeazy

Took 12+ years to diagnose my CIDP. After three back surgeries and a neck fusion. No relief. Saw all kinds of docs with no real results. Five months ago I got the diagnosis and began IVIG treatments every three weeks. I now have 4 done. Takes 2 days and they come to my home for five or six hours. The results began immediately. I was able to take more control over my walking and this lasted for a few days. After the second treatment the results were much more dramatic and I actually walked off and left my cane a couple of times! Then I developed a horrible whole body rash, sensitivity to the sun, edema in both legs and I got tired. Couldn't sleep because of the itching. Discussed this with the docs and pharmacist, they added saline solution before and after infusion plus steroids each day prior to infusion. The steroids started reversing my condition immediately although I still have very dry skin and am not sure I'm completely out of the woods. It has been a week since the last infusions and steroids. We shall see. That said, I believe Immunoglobulin is a wonder medication! You know that feeling when you have had a bad tooth for a long while and then it is removed and you suddenly put 2 and 2 together and realize how good you feel. Well, I found myself doing things I hadn't done for a couple of years and it happened before I realized it. Right now I don't even know where my cane is. Oh yes, I still am bent over and moving slowly, but that is a 1000% improvement from where I was just a short time ago when I couldn't hold much in my hands, and could not walk in a straight line or without a cane and could barely get out of a chair. Today, that is my report...have to go work in the garden now!

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I’m glad you had success with your IVIG infusions, as they did not help me at all.
I might be starting a new infusion soon, and will let you know how it works.

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overeazy | @overeazy | Aug 25, 2023

Well, right now I am looking forward to them as I have been progressively better after each infusion. Sorry they have not worked out for you. What are they going to try next?

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SusanEllen66 | @SusanEllen66 | Aug 25, 2023

Today my neurologist said he wants to treat me with only Gabapentin for now. Last time I tried that stuff it put me to sleep for a day…
I don’t know how I will manage but I will try. I start tomorrow.

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1 reply
overeazy | @overeazy | Aug 26, 2023
In reply to @SusanEllen66 "Today my neurologist said he wants to treat me with only Gabapentin for now. Last time..." + (show)
@SusanEllen66

Today my neurologist said he wants to treat me with only Gabapentin for now. Last time I tried that stuff it put me to sleep for a day…
I don’t know how I will manage but I will try. I start tomorrow.

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I've been taking lots of Gabapentin. I have backed off on it now, but I felt it helped me with stiffness and swelling. I know this because I cut myself off trying to get my supplemental coverage in place and got lazy and missed the stuff for a couple of weeks. The results were dramatic for me. I got worse and worse until I got back on it.

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 26, 2023
In reply to @overeazy "I've been taking lots of Gabapentin. I have backed off on it now, but I felt..." + (show)
@overeazy

I've been taking lots of Gabapentin. I have backed off on it now, but I felt it helped me with stiffness and swelling. I know this because I cut myself off trying to get my supplemental coverage in place and got lazy and missed the stuff for a couple of weeks. The results were dramatic for me. I got worse and worse until I got back on it.

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@overeazy I took my first dose about 45 minutes ago and now I am too tired to stay up. It was only 100mg.

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1 reply
overeazy | @overeazy | Aug 26, 2023
In reply to @SusanEllen66 "@overeazy I took my first dose about 45 minutes ago and now I am too tired..." + (show)
@SusanEllen66

@overeazy I took my first dose about 45 minutes ago and now I am too tired to stay up. It was only 100mg.

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Thanks for the report. From what I understand the drug does not stay in your system so you shouldn't have any lingering effects. (But please don't take anything I say here as medically accurate and please ask your doc to confirm.) Anyway, I never felt tired on the drug.

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