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

@artscaping

@colleenyoung, @lorirenee1, @rwinney, @chandyjohn1, @helennicolla, @stobie2019, @ww2valentine, @johnbishop

I have promised to keep in touch and share information as I stumble through the Neuropathic itch issues. For the last month, I have followed my dermatologist's protocol to include, Sarna cream after the shower which calms the outer skin, Doxepin,10 mg at bedtime helps with staying asleep and not scratching. I still need my medical cannabis to be comfortable during the day and night.

Here is an interesting article about the itch/scratch cycle process especially the neuropathic kind.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6502296/
My dermatologist has discovered two medications waiting for FDA approval. The first one, Seriopitant, is explained below.
https://www.dermatologyadvisor.com/home/topics/general-dermatology/serlopitant-benefits-patients-with-treatment-refractory-prurigo-nodularis/
The second one is Aprepitant. I don't see much of a connection with this one but then I am not a health practitioner and just don't understand everything. Here is the Wikipedia explanation.
https://en.wikipedia.org/wiki/Aprepitant
I hope you are all doing well. Colleen, if I left anyone out please let me know. Members, ask more questions and let's see if we can uncover the "witches' brew" for this annoying condition.

And if this sounds repetitive, this is the 3rd time I have written this. It just keeps disappearing.

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

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Hi Chris @artscaping
Both Aprepitant and Seriopitant are in the same class of drugs called NK-1 receptor antagonists. Currently, the main indication is for nausea and vomiting of chemotherapy.
I asked my neurologist if he knew of any use of these for the pain of peripheral neuropathy, particularly the burning pain associated with minor pressure, like wearing shoes or the touch of bed sheets (called allodynia). No answer yet.
Jeff

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@jeffrapp

Hi Chris @artscaping
Both Aprepitant and Seriopitant are in the same class of drugs called NK-1 receptor antagonists. Currently, the main indication is for nausea and vomiting of chemotherapy.
I asked my neurologist if he knew of any use of these for the pain of peripheral neuropathy, particularly the burning pain associated with minor pressure, like wearing shoes or the touch of bed sheets (called allodynia). No answer yet.
Jeff

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Good afternoon @jeffrapp. Thanks Jeff…..I kind of thought you might know something to add to this search. I don't know if the neuropathy itch is considered burning pain. What do you call severe internal itching that causes acute agony? I am grateful for your participation. Stay tuned, as they say.

May you be healthy and free.
Chris

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Hi again @artscaping
Here is an article I found which has some good info:
https://hms.harvard.edu/news/itch-brain#:~:text=Neuropathic%20itch%20is%20a%20different,a%20very%20common%20viral%20infection.
Most relevant is the third paragraph under "Insatiable Itch".
As explained, "internal" itching can have many causes, one of which is neuropathic. The pain of neuropathy, such as the allodynia I described, is a different sensation.
Let's hope that the brainiacs come up with a treatment for both soon.
Stay well.

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@jeffrapp

Hi again @artscaping
Here is an article I found which has some good info:
https://hms.harvard.edu/news/itch-brain#:~:text=Neuropathic%20itch%20is%20a%20different,a%20very%20common%20viral%20infection.
Most relevant is the third paragraph under "Insatiable Itch".
As explained, "internal" itching can have many causes, one of which is neuropathic. The pain of neuropathy, such as the allodynia I described, is a different sensation.
Let's hope that the brainiacs come up with a treatment for both soon.
Stay well.

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Hey there @jeffrapp, Now we're talking. Insatiable is a good description. So….my sense of it being Internal, inside the body is apparently also correct? There is no skin sensation. When you scratch…..your leg may bleed but the itch is still there.
Thanks again,
Be healthy and content.
Chris

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Hello @artscaping
I am not an expert. I eagerly read this forum to get information, as a sufferer.
As I understand it, neuropathic itch is not a skin condition, but a variant of peripheral (and perhaps other forms of) neuropathy. As such, it is "internal" (meaning not from the skin).
Furthermore, I believe that it may, or may not, be associated with a rash.
However, in your case you may have another form of "internal" itching.
As always, it is important to consult your doctor, although he/she may not have any better answers. Not everything is known.
Here is an informational article on neuropathich itch:
https://www.dermatologytimes.com/article/presentation-management-neuropathic-itch
Jeff

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I had the same problem as you, including pain. I have studied the new breakthrough informatiom, via the book pictured.Author is , now very famous, Norman Doidge MD. Title of book is " The brain that Changed Itself". This book is not , just a book to be read, but for you and me, a mandatory study. Chapter 7 is on PAIN , and as a result I was able to reduce pain, without medication, and , as you can imagine I was very pleased.But that left me with itch. I have visited many specialis skin specialists, without finding success. My itching, was constant, but at night, unbelievably bad. One desparate night, I decided to try the method I had used for pain.. Read the book , but basically the deal is to not ever, scratch the itch, whilst deliberately changing your thought patterns. The first night the itching was intense, BUT, an there's always a BUT, my itching has now almost vanished . I have not scratched an itch for several days. I still get them occasionally, I take pleasre in ignoring. Last night as an example, as I got to bed, I had an itch in the middle of my , ignored it , and had a great night's sleep.

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@user_che214927

I had the same problem as you, including pain. I have studied the new breakthrough informatiom, via the book pictured.Author is , now very famous, Norman Doidge MD. Title of book is " The brain that Changed Itself". This book is not , just a book to be read, but for you and me, a mandatory study. Chapter 7 is on PAIN , and as a result I was able to reduce pain, without medication, and , as you can imagine I was very pleased.But that left me with itch. I have visited many specialis skin specialists, without finding success. My itching, was constant, but at night, unbelievably bad. One desparate night, I decided to try the method I had used for pain.. Read the book , but basically the deal is to not ever, scratch the itch, whilst deliberately changing your thought patterns. The first night the itching was intense, BUT, an there's always a BUT, my itching has now almost vanished . I have not scratched an itch for several days. I still get them occasionally, I take pleasre in ignoring. Last night as an example, as I got to bed, I had an itch in the middle of my , ignored it , and had a great night's sleep.

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@user_che214927 Hi Barry, thank you so very much for the reference. I have heard of the book and will just order it. So far I have failed at not scratching. My sweet partner gently rubs (not scratches) my whole body until I stop agonizing. Then what? Currently, I am using Doxepin at bedtime and medical cannabis both tincture and topical to make it through the day. I am afraid not to treat even without current symptoms because I don't want to be caught in one of those vices of suffering.

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

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@lorirenee1

@artscaping Hi Chris, I am so sorry you itch. I do too, almost everyday, and some days, it is unbearable. Thank God, I can use an anti histamine, and it goes away. Benadryl seems to work best. I think I have itch from 2 sources, though. I am sure the neuropathy gives me itchy feet, and sometimes, I itch, here and there, all over. I think this may be from Kratom or Medical Marijuana, or both. They are plants, so of course, I may be a bit allergic to them. However, I must take them, or cry a lot. I do not know if you have tried an anti histamine, but it does work for me. CVS also sells an anti itch crème. It actually calls it an anti itch crème, and it works. It is not the over the counter steroid cream. That does not work at all for me. Very best of luck. Itching can really drive you nuts. Terrible. Thanks for all of your help, all of the time. Stay safe. Lori Renee

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Good Point about medical marijuana. I have also had allergic skin rashes even from very low doses and some CBD oils for anxiety. For itching, I recommend Clear Benadryl lotion, Clear Caladryl and Aveeno Eczema Oatmeal lotion really work topically. From Sam's club they carry a whipped Vit. E or Coconut lotion that has few additives and preservatives and works even on the eyelids. I take a cool shower, use a shea butter soap only and afterward use only lotion with NO preservatives. Raw shea butter comes in many forms online and is great after a hydrating wet down of the skin. Believe it or not water can be very drying to the skin, so always apply to skin when wet. Hang in there. Feeling the need to itch is exhausting!!
My dermatologist recommended methotrexate and folic acid for a few weeks, but this causes stiff tendons which can cause other problems, however it is working well. I can feel the pitch stopping from the inside which is a relief. Still have some surface itch, but manageable. So far so good.

REPLY
@user_che214927

I had the same problem as you, including pain. I have studied the new breakthrough informatiom, via the book pictured.Author is , now very famous, Norman Doidge MD. Title of book is " The brain that Changed Itself". This book is not , just a book to be read, but for you and me, a mandatory study. Chapter 7 is on PAIN , and as a result I was able to reduce pain, without medication, and , as you can imagine I was very pleased.But that left me with itch. I have visited many specialis skin specialists, without finding success. My itching, was constant, but at night, unbelievably bad. One desparate night, I decided to try the method I had used for pain.. Read the book , but basically the deal is to not ever, scratch the itch, whilst deliberately changing your thought patterns. The first night the itching was intense, BUT, an there's always a BUT, my itching has now almost vanished . I have not scratched an itch for several days. I still get them occasionally, I take pleasre in ignoring. Last night as an example, as I got to bed, I had an itch in the middle of my , ignored it , and had a great night's sleep.

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@user_che214927. Good afternoon Barry. My book came today……so will be able to catch up with you a little bit.
Like you, I have been using the Doxepin at night and it has helped. You say your itching has almost vanished. That is good news. I am needing help in learning not to scratch. At this point, I am trying to you my mindfulness techniques to help my brain decide not to scratch. Baby steps at this point, but today I concentrated on stopping my brain from acknowledging an irritant during a Zoom meeting. It was somewhat successful so perhaps it is time to give directions to the itch.
How long have you been relatively itch free at this point?

I am still reading and learning. It does appear that the research industry has spent more time and money on other facets of Small Fiber Neuropathy like pain and those needle-like tingles instead of the "itch". I will keep waving the flag for the itch. At this point, there are a few diagnostic tools. It appears that there are several types of neuropathic itch and a need to develop testing and treatment modalities that word. I will keep waving the flag for the demise of the "itch".
May you be safe and protected.
Chris

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Hi @artscaping Chris, I know you have had this discussion about itch going since April. I know you have probably tried everything by this point, including Aveeno anti itch cream. But it struck me tonight that my wife has been using that to very good effect recently. She has PN as well as fibro. In April '19 she started having severe itching. I think I told you about the sonicare toothbrush idea before. That helped her for quite a while, even up into this year. But after subsiding for a few months her itch came back in the last 2 weeks and it is very bad, what she refers to as the "deep itch" that is inside her foot not on the surface, so the sonicare is useless now. During the days she deals with the itch when it is active by doing her best to ignore it. She rarely scratches except VERY occasionally when she just can't keep from doing it at least somewhat. She only uses the Aveeno before going to bed (saving it for when it is the most important time) , and so far, this past couple weeks anyway, it has been calming the itch down so all she has to deal with in trying to get to sleep is the PN burning in her feet, but not the itch also. It has been a godsend for this alone. Just wanted to pass this on to you as it seems remarkable that this one thing seems to be working for her, at least for now. I, of course, have no idea why. Best, Hank

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@hotfooted shared some information in a private message with me that may be useful for folks that have itching with their neuropathy and are taking gabapentin and magnesium. Excerpt from following page — "Gabapentin works in the brain to prevent seizures and relieve pain for certain … If you take an antacid that contains aluminum or magnesium, wait at least 2 hours … Call your doctor right away if you have a rash, itching, trouble breathing, …"
Gabapentin (Oral Route) Precautions – Mayo Clinic: https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/precautions/drg-20064011?p=1

From @hotfooted – "just saw my old post about the itching and why I stopped taking Gabapentin and Magnesium… I recently started taking Gabapentin again and the newest directions state Not to take them within 2 hours of each other.. I had forgotten the reason why I stopped taking Gabapentin previously and my doctor didn't have that bit of information either.. Now I take them at least 2 hours apart and am having no problem so far! Thought I should get that bit of information out there in case someone else is having the same problem…"

Great tip since a lot of folks with neuropathy take gabapentin.

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@johnbishop

@hotfooted shared some information in a private message with me that may be useful for folks that have itching with their neuropathy and are taking gabapentin and magnesium. Excerpt from following page — "Gabapentin works in the brain to prevent seizures and relieve pain for certain … If you take an antacid that contains aluminum or magnesium, wait at least 2 hours … Call your doctor right away if you have a rash, itching, trouble breathing, …"
Gabapentin (Oral Route) Precautions – Mayo Clinic: https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/precautions/drg-20064011?p=1

From @hotfooted – "just saw my old post about the itching and why I stopped taking Gabapentin and Magnesium… I recently started taking Gabapentin again and the newest directions state Not to take them within 2 hours of each other.. I had forgotten the reason why I stopped taking Gabapentin previously and my doctor didn't have that bit of information either.. Now I take them at least 2 hours apart and am having no problem so far! Thought I should get that bit of information out there in case someone else is having the same problem…"

Great tip since a lot of folks with neuropathy take gabapentin.

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@johnbishop. Thank you John for the information from @hotfooted. I am struggling with the neuropathic itch. Maybe I better take a look at gabapentin. Do you have any more information about the neuropathic pruritus? Thanks……

May you be content and at ease for this lovely event coming up. Congratulations and best wishes to your family.
Chris

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