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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.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 10, 2023
In reply to @snortenbme1 "Hi all. Please share the namwmes of the specialist that you use for chronic neuropathic itch...." + (show)
@snortenbme1

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.

Jump to this post

Welcome @snortenbme1, While you wait for members with experience to share information with you, I thought I would share an interesting study I found with you.

-- Treatment of scalp dysesthesia utilising simple exercises and stretches: A pilot study:
https://pubmed.ncbi.nlm.nih.gov/29577244/.
The article didn't mention the specific exercise but I found another site that mentions the specific exercises and refers back to the study. The site has videos of the exercises which might be something to try or discuss with your doctor.
-- Scalp Exercises For Patients with Scalp Dysesthesias: https://donovanmedical.com/hair-blog/scalp-dysesthesias-laidler-study.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 10, 2023
In reply to @dave130 "I’ve had neuropathy for about 2 years now. Just recently though, the itching started. It’s all..." + (show)
@dave130

I’ve had neuropathy for about 2 years now. Just recently though, the itching started. It’s all over my body except in my face. My neuropathy is caused by a lesion on my spinal cord from compression. I had decompression and fusion surgery at C4 and C5 but was left with the SCI.

So far I’ve had some help from Benadryl. But that makes me very tired. I have a scheduled visit to the pain clinic this week and am going to ask about that Dupixent.

I’ll also be looking into a spinal cord stimulator this time which my neurosurgeon recommended. I’m about at the end of my rope looking for ways to deal with my chronic neuropathic pain. SCS is about the only thing I haven’t tried. The only thing that really helps are warm gloves with finger holes I wear all the time, which help mute the pain in my hands and wrists to some degree, good for reducing pain about 2 points on the pain scale.

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Good evening @dave130. I am just checking in to see if you have been able to ask about Dupixent for the neuropathic itch situation. I was able to have the financial situation renewed for 2023 and now receive 3 months of Dupixent 4 times a year.

I am still free of all itching and have been so since my first injection in August. I so don't want anyone to suffer from that annoying itch when there is now something that works 100 percent without any side effects.

May you be free of suffering from the "itch".
Chris

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 11, 2023
In reply to @snortenbme1 "Hi all. Please share the namwmes of the specialist that you use for chronic neuropathic itch...." + (show)
@snortenbme1

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.

Jump to this post

Welcome @snortenbme1, you have a neuropathic itch I assume. What are your symptoms like? Have you found any topical medications that work for you or do you rely on injections and pills?

It would be helpful to know more about your neuropathic symptoms other than the "itch". Have you received a diagnosis?

I see your request for names of neuropathic itch clinicians. I have been working with my dermatologist. She has been helping me for several years. Just recently she hung right in there with me to make sure I was approved for Dupixent. After watching my skin deteriorate for a couple of years......I was happy that she left no stone unturned, so to speak.

Have you found a dermatologist to be helpful with the "neuropathic itch"?

May you be free of suffering and the causes of suffering.
Chris

REPLY
1 reply
hawkssr | @hawkssr | Feb 11, 2023
In reply to @artscaping "Good evening @dave130. I am just checking in to see if you have been able to..." + (show)
@artscaping

Good evening @dave130. I am just checking in to see if you have been able to ask about Dupixent for the neuropathic itch situation. I was able to have the financial situation renewed for 2023 and now receive 3 months of Dupixent 4 times a year.

I am still free of all itching and have been so since my first injection in August. I so don't want anyone to suffer from that annoying itch when there is now something that works 100 percent without any side effects.

May you be free of suffering from the "itch".
Chris

Jump to this post

I’m trying Dupixent, my derm gave me injections from their samples and I go back in two weeks. My concern is the cost even with my Medicare BCBS advantage as I see it’s tier 5 so right now I have no idea what I may have to pay. Did your insurance cover all of it? Also I was not prepared for the huge sting that came with the injections in my thighs, is this normal, my leg was shaking so bad during the last injection I’m not sure I could have done it myself. Thank you!

REPLY
2 replies
snortenbme1 | @snortenbme1 | Feb 11, 2023

Hi I have chronic itch, burn,tsting, and throbbing pain of the scalp. My scalp is normal on appearance on examination. I am seeing a neurologist who says I am his first neuropathic itch patient( with scalp dysthesia (hope I spelled thar right) so far pills aren't helping. Topical no help, I tried a steroid foam. I am looking for Doctors that may be able to help. Who is your Doctor?

REPLY
snortenbme1 | @snortenbme1 | Feb 11, 2023
In reply to @artscaping "Welcome @snortenbme1, you have a neuropathic itch I assume. What are your symptoms like? Have you..." + (show)
@artscaping

Welcome @snortenbme1, you have a neuropathic itch I assume. What are your symptoms like? Have you found any topical medications that work for you or do you rely on injections and pills?

It would be helpful to know more about your neuropathic symptoms other than the "itch". Have you received a diagnosis?

I see your request for names of neuropathic itch clinicians. I have been working with my dermatologist. She has been helping me for several years. Just recently she hung right in there with me to make sure I was approved for Dupixent. After watching my skin deteriorate for a couple of years......I was happy that she left no stone unturned, so to speak.

Have you found a dermatologist to be helpful with the "neuropathic itch"?

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Who is your Doctor?

REPLY
snortenbme1 | @snortenbme1 | Feb 11, 2023
In reply to @hawkssr "I’m trying Dupixent, my derm gave me injections from their samples and I go back in..." + (show)
@hawkssr

I’m trying Dupixent, my derm gave me injections from their samples and I go back in two weeks. My concern is the cost even with my Medicare BCBS advantage as I see it’s tier 5 so right now I have no idea what I may have to pay. Did your insurance cover all of it? Also I was not prepared for the huge sting that came with the injections in my thighs, is this normal, my leg was shaking so bad during the last injection I’m not sure I could have done it myself. Thank you!

Jump to this post

Who is your Dermatologist.

REPLY
2 replies
hawkssr | @hawkssr | Feb 11, 2023
In reply to @snortenbme1 "Who is your Dermatologist." + (show)
@snortenbme1

Who is your Dermatologist.

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He’s in San Tan Valley, AZ

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1 reply
snortenbme1 | @snortenbme1 | Feb 11, 2023
In reply to @hawkssr "He’s in San Tan Valley, AZ" + (show)
@hawkssr

He’s in San Tan Valley, AZ

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Please provide nane thank you.

REPLY
ztiggie | @ztiggie | Feb 11, 2023
In reply to @snortenbme1 "Hi all. Please share the namwmes of the specialist that you use for chronic neuropathic itch...." + (show)
@snortenbme1

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.

Jump to this post

CT b/c
I

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