Neuropathic Itch

Posted by huskerboy45 @huskerboy45, Feb 27 5:48pm

Hello- I noticed a strange itching, prickling sensation on my right arm a year ago. It lasted for a few months ranging from severe itching, to prickling sensation. Believe it or not, it literally moved to my left arm, same thing for months, worst is the itching that would not go away. Then it moved back to my right arm. Same thing. Prickling feeling, with bad itch in forearm, under bicep and elbow. Now I notice a strange crawling/prickling in my neck and upper shoulder blade with intermittent itching in middle of shoulder blades. My arms have been the constant ...but now I feel occasional pricks all over body. (Parathesia?) My arms are the worst, but the back is becoming more common. There is no rash. I had Shingles I think in 2006? At the time I didn't know what it was. It cleared up w no lingering symptoms. Can you get nerve damage from shingles 17 years later? No itch creams work. I know its a Neuropathic Itch but wondering if anyone has had something similar or what you did to help? Appreciate any comments.

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

My itching was cervical stenosis. I had a cervical decompression and fusion Feb. 1, 2023 @ C6-T2 and the itching is now gone.
It started in my arms.
Only left shoulder blade itched and had hyperpigmentation from scratching. Plus, choking on solid food = structure and headache stemming from back of neck. (Vagus nerve)
I’m glad you didn’t have myelomalacia, that’s for sure.
Thank you for sharing your outcome.

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@julbpat

Change doctors! You need a good care team on this journey. Remember they work for you, and you get to choose! I say this as a retired nurse and specialist who worked closely with my patients. Sometimes they needed to find someone else to work with. Don’t feel bad about leaving.

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Thank you! Yes my primary care physician seems clueless and unsympathetic

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@artscaping

Good evening @huskerboy45, @madison24, @empresskristine, and others who have expressed concern about the Neuropathic Itch. As I read your comments, concerns, and even complaints about neuropathic itch, I was taken back to August 2022. After three years of suffering, sobbing, and almost giving up, I had my first injection of Dupixent. Within an hour, the neuropathic itch completely left my body and has not returned at any time or in any way.

And why did it take so long? Why did my medicine cabinet have multiple tubes of ointments that didn't work? Perhaps it was because Dupixent (dupilumab) a relatively new injectable solution for neuropathic itch was finally becoming recognized. Perhaps my impatience was the result of all of the supportive documents, declarations, and images that my dermatologist had to prepare for the developer so that I would be approved for the product. Even my daughter spent many hours talking with the medical staff to nudge the company to fulfill the request.

And then I began to see the commercials on the evening news for Dupixent but it was being recommended for help for patients with asthma and atopic dermatitis as well as neuropathic itch. Since I am not a medical practitioner I had to learn how this medication was able to completely remove that horrible itch that can make you sick and bring you to tears. So hats off to Dr. Anderson who made it happen after learning about Dupixent's capabilities for neuropathic itch at an annual conference.

You do have to secure Dupixent from a specialty pharmacy named Theracom. And you can learn more at dupixent.com. Let me know if you need some help.....I am here for you.

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

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Thank you . I will look into this! Its been a frustrating journey. Its so difficult to put into words but others who are going through it as well give me hope

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Perhaps ask your doc to order a comprehensive metabolic profile if you haven't had one already, just to check it isn't anything that would require more in-depth assessment or monitoring. I suspect a lot of GPs don't make this leap without us prompting. I happened to have an overly zealous doc order one, and was able to identify the source of the neuropathic itch and other sensory symptoms. Be well!

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@artscaping

Good evening @huskerboy45, @madison24, @empresskristine, and others who have expressed concern about the Neuropathic Itch. As I read your comments, concerns, and even complaints about neuropathic itch, I was taken back to August 2022. After three years of suffering, sobbing, and almost giving up, I had my first injection of Dupixent. Within an hour, the neuropathic itch completely left my body and has not returned at any time or in any way.

And why did it take so long? Why did my medicine cabinet have multiple tubes of ointments that didn't work? Perhaps it was because Dupixent (dupilumab) a relatively new injectable solution for neuropathic itch was finally becoming recognized. Perhaps my impatience was the result of all of the supportive documents, declarations, and images that my dermatologist had to prepare for the developer so that I would be approved for the product. Even my daughter spent many hours talking with the medical staff to nudge the company to fulfill the request.

And then I began to see the commercials on the evening news for Dupixent but it was being recommended for help for patients with asthma and atopic dermatitis as well as neuropathic itch. Since I am not a medical practitioner I had to learn how this medication was able to completely remove that horrible itch that can make you sick and bring you to tears. So hats off to Dr. Anderson who made it happen after learning about Dupixent's capabilities for neuropathic itch at an annual conference.

You do have to secure Dupixent from a specialty pharmacy named Theracom. And you can learn more at dupixent.com. Let me know if you need some help.....I am here for you.

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

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Hi Chris. Thanks for turning us on to this option. I did a quick Google search and was unable to find anything on Dupixent for neuropathic itch. Do you know if it's off-label, and/or where we can find information on how it's used? I'd love to bring it to my hematologist.

REPLY
@empresskristine

My itching was cervical stenosis. I had a cervical decompression and fusion Feb. 1, 2023 @ C6-T2 and the itching is now gone.
It started in my arms.
Only left shoulder blade itched and had hyperpigmentation from scratching. Plus, choking on solid food = structure and headache stemming from back of neck. (Vagus nerve)
I’m glad you didn’t have myelomalacia, that’s for sure.
Thank you for sharing your outcome.

Jump to this post

I had itching in my scalp and on my face. Dermatologist gave me Ketoconazole cream. Can’t put it on my scalp because it is a cream but it works on my hairline and face. Interesting thing is it only happens in the evening! Wished you peace. Bcool123

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@huskerboy45

Thank you . I will look into this! Its been a frustrating journey. Its so difficult to put into words but others who are going through it as well give me hope

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“Notalgia paresthetica (NP) is a cutaneous sensory neuropathy that predominantly affects females, with onset at middle age or older [1,2]. Although it is common, patients underestimate their symptoms, and physicians present an inertia to consider the possibility of NP, and far fewer know about the neuropathic itch. Doubtless, many cases go largely unrecognized, underdiagnosed, or overlooked in the routine clinical practice [3,4].

Pruritus is the overwhelming clinical symptom in the majority of patients [1,5]. A left-sided and posterior location matches well with the location of NP; almost always, NP is unilateral [1]. Hyperpigmentation in the affected area often results from scratching itchy, desensate skin [1]. Along with the pruritus, patients may also experience burning, tingling, coldness, hyperesthesia, hypoesthesia, numbness, or nerve pain in the area where pruritus appeared [6].

Neuropathic itch and pain are signaling abnormalities - the causative lesion may be half a meter away from where the symptoms are felt, in a nerve, nerve root, spinal cord, or the brain. Spinal nerves and roots are vulnerable to compression as they exit the spinal cord, and they can be chronically compressed by narrowing of the bony foramina. The cause of NP may remain clouded if advances in imaging do not refine diagnosis. The features of NP in a 57-year-old woman, with x-ray-proven cervical spondylosis, are presented in this article.“

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Good evening, to members seeking a solution for Neuropathic itch and demographic itch.
Thank you @colleenyoung for continuing to help those of us contending with the difficult and discouraging symptoms of Neuropathic itch and demographic itch. Today I had an annual visit with my dermatologist during which Dupixent results were the number one item on the agenda.

As you may have read in my posts, I have been free of Neuropathic itch since the day of my first pen injection of Dupixent. My quality of life has improved considerably despite aging issues including progressive and non-curable SFN (small fiber neuropathy). She also informed me that the Prurigo Nodularis section on Dupixent.com is actually about Neuropathic itch. I just read it and found it helpful in explaining the symptoms so many of us have encountered. Two statements made a lot of sense to me as to how and why this biologic medication works.
1. Dupixent targets the root cause of your condition. 2. Dupixent is a proactive treatment that keeps you one step ahead of that unwelcome itch.

For those of you who are struggling with the cost of Dupixent, many patients have found that their medical professional has helped secure financial support through the Dupixent My Way program.

Please do not hesitate to let me know of any additional information you seek. I will do my best to find it for you. Living without the "itch" is the number one goal in my life right now.

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

REPLY
@remainanonymous

Hi Chris. Thanks for turning us on to this option. I did a quick Google search and was unable to find anything on Dupixent for neuropathic itch. Do you know if it's off-label, and/or where we can find information on how it's used? I'd love to bring it to my hematologist.

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Good morning @remainanonymous, i did some research. Just look one post up for my response. My dermatologist knew the answer to your question.

Chris

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@artscaping

Good morning @remainanonymous, i did some research. Just look one post up for my response. My dermatologist knew the answer to your question.

Chris

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So appreciate this! I'll be starting treatment for MGNS + amyloidosis shortly, which will reduce further issues. But I still want relief from the itch that's irreversable. I'll bring this in when I see my hemonc next week.

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