What do you do for Neuropathy itch?

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.

hi. I know what you are going through. I find treating just like a wound to help i.e. wear a large bandage over the itchy area helps a lot. also, but check with your doc, cortisone cream helps.

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Please, please do not use topical steroids unless under the strictest application. My daughter has had eczema her whole life and multiple doctors have prescribed stronger and stronger steroids with no guidance on how to use them. When you stop taking the steroids because they don't work anymore you can go into Topical Steroid Withdrawal (TSW). This currently affects approx.12% of people using steroids inappropriately. Many times your doctor will not tell you about the danger. My daughter has been in extreme pain for the last six months and is still in so much agony with dry, cracked, oozing and bleeding skin, deep unrelating itch, extreme nerve pain, constant fatigue but unable to fall asleep. She describes herself as looking like a monster. It is utter hell. Please look up Topical Steroid Withdrawal or Red Skin Syndrome. This can affect babies too. Many doctors do not recognize TSW because they have no other treatment but if you investigate you will see for yourself and make an informed decision.

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@tanzy

Please, please do not use topical steroids unless under the strictest application. My daughter has had eczema her whole life and multiple doctors have prescribed stronger and stronger steroids with no guidance on how to use them. When you stop taking the steroids because they don't work anymore you can go into Topical Steroid Withdrawal (TSW). This currently affects approx.12% of people using steroids inappropriately. Many times your doctor will not tell you about the danger. My daughter has been in extreme pain for the last six months and is still in so much agony with dry, cracked, oozing and bleeding skin, deep unrelating itch, extreme nerve pain, constant fatigue but unable to fall asleep. She describes herself as looking like a monster. It is utter hell. Please look up Topical Steroid Withdrawal or Red Skin Syndrome. This can affect babies too. Many doctors do not recognize TSW because they have no other treatment but if you investigate you will see for yourself and make an informed decision.

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Yes, thank you that is a great and important warning. My doctor and I work closely on such things. I only use small amounts, of a low dose specially compounded prescription and only for 3 days max. If i need more than that, I’m to call him. Honestly I’ve never needed it for more than a day or two to get things back in order since the initial use

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You are very lucky to have a doctor who knows the dangers of steroids. He or she is an exception. I am happy to hear it is working for you.

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@tanzy

Please, please do not use topical steroids unless under the strictest application. My daughter has had eczema her whole life and multiple doctors have prescribed stronger and stronger steroids with no guidance on how to use them. When you stop taking the steroids because they don't work anymore you can go into Topical Steroid Withdrawal (TSW). This currently affects approx.12% of people using steroids inappropriately. Many times your doctor will not tell you about the danger. My daughter has been in extreme pain for the last six months and is still in so much agony with dry, cracked, oozing and bleeding skin, deep unrelating itch, extreme nerve pain, constant fatigue but unable to fall asleep. She describes herself as looking like a monster. It is utter hell. Please look up Topical Steroid Withdrawal or Red Skin Syndrome. This can affect babies too. Many doctors do not recognize TSW because they have no other treatment but if you investigate you will see for yourself and make an informed decision.

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@tanzy
Hi and welcome to Connect. I do not personally suffer from eczema but this sounds like very good advice. It seems that bad or insufficient information can come from any quarter, even the doctors we trust. All the more reason for forums like Mayo Connect where much can be learned from other people's personal experiences, that one might not hear anywhere else. Thank-you for chiming in! Best, Hank

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@tanzy

Please, please do not use topical steroids unless under the strictest application. My daughter has had eczema her whole life and multiple doctors have prescribed stronger and stronger steroids with no guidance on how to use them. When you stop taking the steroids because they don't work anymore you can go into Topical Steroid Withdrawal (TSW). This currently affects approx.12% of people using steroids inappropriately. Many times your doctor will not tell you about the danger. My daughter has been in extreme pain for the last six months and is still in so much agony with dry, cracked, oozing and bleeding skin, deep unrelating itch, extreme nerve pain, constant fatigue but unable to fall asleep. She describes herself as looking like a monster. It is utter hell. Please look up Topical Steroid Withdrawal or Red Skin Syndrome. This can affect babies too. Many doctors do not recognize TSW because they have no other treatment but if you investigate you will see for yourself and make an informed decision.

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Hi @tanzy, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. The link you wanted to post is not spam, so allow me to post it here.

- B.C. Woman Whose Skin Fell Off Warns About Steroid Cream Addiction https://www.huffingtonpost.ca/2015/05/15/steroid-cream-addiction_n_7236986.html

How is your daughter being supported through the withdrawal? How has she found relief?

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@colleenyoung

Hi @tanzy, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. The link you wanted to post is not spam, so allow me to post it here.

- B.C. Woman Whose Skin Fell Off Warns About Steroid Cream Addiction https://www.huffingtonpost.ca/2015/05/15/steroid-cream-addiction_n_7236986.html

How is your daughter being supported through the withdrawal? How has she found relief?

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Hello Colleen,
My daughter Sasha has been living in the Netherlands for the past two years. She has a very supportive partner who has been doing his best to take care of her. I tried to fly from the States to help but cannot get into the country because of COVID 19. It is so upsetting. There is very little relief with TSW. Sometimes a cool pack helps and bandaging the wounds. At the beginning Sasha could not take a shower for weeks because even a cool bath would feel like scalding water, the pain would last for hours and she would cry with exhaustion. The last 2 weeks she has been able to tolerate the water slightly better but the pain and constant itching is a daily uphill battle. Atarax sometimes lessons the itch and makes you sleepy bit many times it does not work. It is hard to know what to do. If you look at the link you will see the terrible steroid reaction. Thanks for your support.

Kind regards, Tanzy

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Tanzy, I have a terrible time with Itch...a few years ago, a FB group I belong to discovered an Amino Acid Supplement, Beta Alanine. I take it for my itch and IT WORKS...and thousands who suffer from Aquagenic Pruritus (itch caused by water contact) are finding significant relief...Beta Alanine is often found in preworkout supplements and has been used for years safely. PLEASE tell her about it and I would love to hear if it works. I also have Cold Pruritus and it works for that as well. IT HAS CHANGED MY LIFE!! Recently 2 Stanford Dermatologist wrote and article on its effectiveness as a patient they had.

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@moylandavis

Tanzy, I have a terrible time with Itch...a few years ago, a FB group I belong to discovered an Amino Acid Supplement, Beta Alanine. I take it for my itch and IT WORKS...and thousands who suffer from Aquagenic Pruritus (itch caused by water contact) are finding significant relief...Beta Alanine is often found in preworkout supplements and has been used for years safely. PLEASE tell her about it and I would love to hear if it works. I also have Cold Pruritus and it works for that as well. IT HAS CHANGED MY LIFE!! Recently 2 Stanford Dermatologist wrote and article on its effectiveness as a patient they had.

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Thank you I will pass your suggestion to my daughter.

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@tanzy

Hello Colleen,
My daughter Sasha has been living in the Netherlands for the past two years. She has a very supportive partner who has been doing his best to take care of her. I tried to fly from the States to help but cannot get into the country because of COVID 19. It is so upsetting. There is very little relief with TSW. Sometimes a cool pack helps and bandaging the wounds. At the beginning Sasha could not take a shower for weeks because even a cool bath would feel like scalding water, the pain would last for hours and she would cry with exhaustion. The last 2 weeks she has been able to tolerate the water slightly better but the pain and constant itching is a daily uphill battle. Atarax sometimes lessons the itch and makes you sleepy bit many times it does not work. It is hard to know what to do. If you look at the link you will see the terrible steroid reaction. Thanks for your support.

Kind regards, Tanzy

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@tanzy
Tanzy, I just read the article which Colleen posted for you. Wow, that is some terrible nightmare that woman went through and your daughter still is going through. Such good information for everyone to be aware of. Especially since steroids are one of today's "miracle" treatments that doctors turn to so readily nowadays. My grandmother's mantra was always "everything in moderation and nothing to excess" and it is absolutely true. Maybe the beta alanine treatment will help her. I hope so.

Also, I am saddened by your inability to be with your daughter due to covid. I think we all took our former freedom to do what we want and go where we want too much for granted before. I hope you can be with your daughter again soon. My prayers are with her. Best, Hank

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