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Mentor

What do you do for Neuropathy itch?

Posted by Chris Trout, Volunteer Mentor @artscaping, Apr 27, 2020

Good morning everyone. I am desperately in need of help with what is called Neuropathy itch. I have SFN (small fiber neuropathy) and am a medical cannabis user for pain. I don't know what to use for this itching. It appears that it reaches through several skin layers. No matter how much you scratch you make it worse, not better. Once you start itching, it's over....your are stuck scratching.

Have you tried certain baths? Oatmeal? I have a steroid cream called Triamcinolone Acetonide. Not exactly a wonder drug. Is there a better one?

The itching results in a terrible level of anxiety. I try to run away from it and cannot. It reminds me of summer in Minnesota when the mosquitoes launch their attacks. I am female with "O" negative blood which they just devour.

Even if you have a solution for other than neuropathy, please share and I will happily do the research. The stress of isolated living and a form of depression that is about our global community also creeps in.

The only thing that works right now for food is gelato.......Salted caramel, if you please. I hope you are all well and blessed with good health today.
Chris

Interested in more discussions like this? Go to the Skin Health Support Group.

pkalkstein | @pkalkstein | Jan 1, 2023

My itch or tingling comes on at night. I go to the freezer and get a large cold pack. That is no cure but freezing stops the itch for the time that the pack is on, so I can sleep. Sometimes it doesn't return.

REPLY
bimshire | @bimshire | Jan 2, 2023
In reply to @stobie2019 "Hi Chris, Oh boy can I understand your pain! I had no idea that the itching..." + (show)
@stobie2019

Hi Chris, Oh boy can I understand your pain! I had no idea that the itching I was suffering from was related to my Small Fiber Neuropathy, and I was literally scratching the skin off certain parts of body. I tried all kinds of cortisone creams, nothing worked. finally in desperation I called my neurologist and she told me that is was part of my SFN. She then gave me a prescription for oxcarbazepine 150 mg 2 tabs twice a day. Well it's been a life saver!!! No more itching!! Most of my worst itching was in the warmer weather which is when the worst burning pain is also, so we're coming into the warmer months now, so we'll see how things go from here, but I got through the entire winter like a dream, and most of last summer was fairly good so I'm ever so hopeful for this one as well. I really hate this disease and I know that's a strong, word, but I've lived with it since 2006 and it's only progressed. Quite honestly my neurologist isn't much help, as she sent me all over half the state looking for a cause and in the end labeled it idiopathic. Then I read an article on SFN that said it's the end result of long standing Sjogren's Disease. I told her that I was diagnosed with mixed collagen vascular disease with Lupus and Sjogren's as the presenting diseases when I was 16ys old. That was 50 yrs ago. It would seem to me if she was worth her weight in knowledge she would have known that especially since the article was in a neurology journal that was easy to find on line. She had my entire medical history that my regular MD gave her right from the start. Anyway I hope you get some relief, it sure helped me.

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Thank you for the information provided as I would have never made the Sjogrens-Neuropathy connection. This has been very helpful and I’ll ask for a rheumatology and neurology appointment at my next visit.

This forum (I am a member of the neuropathy support group) has been very informative in the short space of time I have used it. Thank you.

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jchet | @jchet | Jan 5, 2023
In reply to @deluga "I've been taking regular ALA and would like to switch to R-ALA. What brand are you..." + (show)
@deluga

I've been taking regular ALA and would like to switch to R-ALA. What brand are you using?

Thanks very much.

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I order Immunovites, NA R-Alpha Lipoic Acid, 600 mg. from Amazon. Sometimes I take on an empty stomach which is the preferred way, but occasionally I take with food when it bothers my stomach. Hope this helps.

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deluga | @deluga | Jan 5, 2023

Thanks very much.
Helene

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saltyoldcurmudgeon | @saltyoldcurmudgeon | Jan 6, 2023

I realize your post was three years ago, but I just joined the group and thought I would reply. Hope you see this. I have neuropathy caused by a neck injury, severe arthritic changes to my vertebrae (C1 thru C7), four bulging discs in my neck with arthritic changes to the discs, etc. etc. etc. ad nauseum.
I get what I believe to be the same kind of itch, mostly in my hands and sometimes my legs and feet. Scratching only leads to blistering and abrasions/wounds. I take Zyrtec and Duloxetine (as prescribed) and it helps some. What I found that helps, if you can stand it, is plunging my hands into cold water or ice water. It seems to somewhat calm the itch. Otherwise, I drive the people in my household crazy with my constant scratching. Something else I recently discovered is putting my body lotion in the refrigerator, letting it get cold, and then using on the affected areas as much as necessary. I am hoping for a cure someday that will stop the itching and help me heal, and surgery is the last-ditch option. I live in Texas. Medical cannabis is available, but I would have to give up certain rights to use it, and all the other chronic pain meds would be discontinued. I pray that you have found a solution in the last three years. God bless!

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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jan 9, 2023
In reply to @saltyoldcurmudgeon "I realize your post was three years ago, but I just joined the group and thought..." + (show)
@saltyoldcurmudgeon

I realize your post was three years ago, but I just joined the group and thought I would reply. Hope you see this. I have neuropathy caused by a neck injury, severe arthritic changes to my vertebrae (C1 thru C7), four bulging discs in my neck with arthritic changes to the discs, etc. etc. etc. ad nauseum.
I get what I believe to be the same kind of itch, mostly in my hands and sometimes my legs and feet. Scratching only leads to blistering and abrasions/wounds. I take Zyrtec and Duloxetine (as prescribed) and it helps some. What I found that helps, if you can stand it, is plunging my hands into cold water or ice water. It seems to somewhat calm the itch. Otherwise, I drive the people in my household crazy with my constant scratching. Something else I recently discovered is putting my body lotion in the refrigerator, letting it get cold, and then using on the affected areas as much as necessary. I am hoping for a cure someday that will stop the itching and help me heal, and surgery is the last-ditch option. I live in Texas. Medical cannabis is available, but I would have to give up certain rights to use it, and all the other chronic pain meds would be discontinued. I pray that you have found a solution in the last three years. God bless!

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Good evening Mr. @saltyoldcurmudgeon and Happy New Year. Has it been three years ago? How are you doing? I do remember your code name. You are doing exactly what I did in the beginning. Same medications and several options for ice packs....for hands, feet, knees, etc. That's a good idea about the lotion cooling. What are you using for lotion?

I have found and qualified for a 100% solution and that is Dupixent. I have not had one single itch since my first dose in July. My scratched-up arms and legs have healed and I am both excited and grateful. This is the solution for "itches" that are generated internally. You self-inject 300 mg twice a month. Topical allergens, e.g. clothing and cosmetics can still be a problem so I just avoid them except for those selected by my dermatologist. She hasn't been wrong yet. And she does advise ointment thickness rather than creamy. If you want additional information, let me know. Or you can just go to the site ....dupixent.com.

May you be safe, free, and protected from inner and outer harm.
Chris

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mdelpriore95 | @mdelpriore95 | Jan 9, 2023

Our gastro doctor recommended a bile removal medication.. hasn't helped yet but its only been 2 weeks

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1 reply
registrar | @registrar | Jan 15, 2023

Hey, all. There were so many posts here I never made my way to the most recent so I guess I'll just start here. I suffer from neuropathic itch. It is MADDENING to say the least. Took a year and a half, 4 doctors and God knows how many pills, creams, ointments, baths, lotions, potions, and biopsies I had to go through before someone finally tried Doxepin. It has been a true lifesaver for me. It's the ONLY treatment that has worked. When on it, I have absolutely no problems. But if I run out and drag my feet about getting a refill, the madness returns. Someone suggested the problem is likely caused by something in the C-spine so I'm also considering accupuncture as I dislike being on medication all the time. Has anyone tried it and found success?

REPLY
registrar | @registrar | Jan 15, 2023
In reply to @bill5 "Hi, I am open to any help with neuropathic itch, it is driving me nuts!I can’t..." + (show)
@bill5

Hi, I am open to any help with neuropathic itch, it is driving me nuts!I can’t get any sleep at night, due to itching! Lidocaine bream , Tramclcinolone cream, oatmeal packs, Epsom salts, calamine lotion, skin moisturizer, tried numerous detergents, can’t stand to have socks on! Scratching my legs raw, wearing mittens on hands, now digging with feet. Raw sores on lower legs! Welcome to any suggestions! This is wrecking my life and making me a nervous wreck!

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I just posted my first comment. The ONLY thing that has worked for me is Doxepin.

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snortenbme1 | @snortenbme1 | Feb 10, 2023

Hi all.
Please share the namwmes of the specialist that you use for chronic neuropathic itch. And if anyone is suffering with scalp dysthesia please share who your Doctor is. Thabk you.

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