At a loss. Don’t know where to turn to now for my husband.

Posted by rcfielding2 @rcfielding2, Feb 16 11:45am

My husband had hep c and did the cure about 10 years ago. Then he started getting neuropathy in his feet. In 2019 he had open heart for an ascending aneurysm and valve replacement. He has not been the same since. Numerous problems. A couple of years ago he started getting this itching burning all over his body. He says it is not on the skin but deeper. It was manageable at that point. Although we saw his primary, a dermatologist and a neurologist. The neurologist ended up thinking it was from the hep c, then he said peripheral neuropathy . He finally said it was out of his scope. 🤦🏼‍♀️ between his doctors he has been on different creams, pregabalin, gabapentine, prednisone and now he is on duloxetine. He had surgery for melanoma a few months ago on his lower back and a lymph node under his arm. Shortly after, they started him on Katruda treatments. Since then, his itching and burning has gone beyond unbearable!! So, they stopped the treatment to see if it was the cause. It has been over a month since his last treatment. And he is miserable still. Wether it is because of the katruda or the duloxetine, he has been in and out of bed for the last week. Mostly in. He is dizzy, sick to his stomach, chills and severe itching and burning. He gets very little sleep. I actually fear for him! He is in so much pain, that he cry’s. I don’t know what to do. Can someone please help us?

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gus0557 | @gus0557 | Sep 10 10:44am

Hello,
I’m so sorry for what your husband is going through and for you trying so hard to help.
I shall speak from my own case. After multiple tests for what started February of last year, I was finally diagnosed February of this year with idiopathic peripheral neuropathy. Since February of last year and with the different doctors, among them 2 neurologists, I saw, I had tried all sorts of medications and nothing worked. Until finally April of this year my primary care physician told me to stop all medications including supplements and only stay on a non statin cholesterol medication and a blood pressure medication. And that’s exactly what I have been on since. As there is no cure for idiopathic peripheral neuropathy and if the right treatment is found to slow it down, I decided to listen to my primary physician. Moreover, I am a strong believer in the fact that using a number of medications can be quite harmful if not well controlled by doctors.
None of us should suggest anything to you about medications for your husband. We don’t know anything about his complete health history. The only thing I can suggest is for him to undergo the tests for peripheral neuropathy if they have not yet been done to either rule it in or out.
Just please keep in mind that peripheral neuropathy is a progressive condition and its symptoms and progression vary widely from one person to another.
I wish you and your husband the best moving forward.
Take care and have a serene day,
gus

thomasmichael | @thomasmichael | Sep 11 1:50pm

It looks like the docs u have been seeing haven't cracked the code. Which is a tough one to crack. In incidents like these I would consider the Mayo Clinic.

loriesco | @loriesco | Sep 12 12:20pm

If he has a body temperature, take him to the hospital. They will run ALL the tests. good luck.

kathan55 | @kathan55 | Sep 13 10:00am

I have had chemo induced peripheral neuropathy since completing chemotherapy in 2005. No doctor mentioned CIPN back then. The initial diagnosis was fibromyalgia, chronic myofascial pain, and chronic fatigue. Peripheral neuropathy is progressive, unfortunately. I’ve tried many things. But it seems like something new crops up all the time. Has he seen a rheumatologist? A couple of my tests were positive (ie- ANA, ENA) but the Rheumatologist didn’t think the levels were high enough to mean anything. It’s been very frustrating. I truly hope you find some help for him.

deborahs18 | @deborahs18 | Sep 16 12:09pm

I developed peripheral neuropathy after completing an 11 month treatment course of interferon on for hepatitis C.
My symptoms are itching and severe burning.

I have been getting good results with this product for the last few months:
https://youngnutra.com/products/mirica-advanced-high-absorption-formula-60-capsules-palmitoylethanolamide-pea-and-luteolin
It was recommended in Dr. Jacob Teitelbaum’s book “From Fatigued To Fantastic”

I still take pain meds, but was able to reduce them quite a bit.
I am now able to sleep through the night. I hope you this helpful. My heart goes out to your husband because I think I understand what he is going through. Good luck!