What do you do for Neuropathy itch?

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

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Hi Chris @artscaping @chandyjohn1 @stobie2019 @lorirenee1 @rwinney and any other itch sufferers, I am still relatively new to Connect and have not ventured out to other discussions besides the first one I have been posting to, but read John Bishop's request for people to post their neuropathy stories, then went to the main neuropathy question page and saw your discussion about neuropathic itch. My wife Linda is the neuropathy sufferer in our family, not me. It has been localized to her feet since 2014. Around April or so of 2019 she had an attack of very severe deep itch in her feet. I remember it well as I was in the kitchen preparing our dinner when she started having trouble and in very short order was sobbing with torment from this itch that was so deep in her feet that she could not even get any relief from scratching at all. After this whole new issue began I started reading online about people suffering from itch, whether from neuropathy or fibromyalgia or whatever. I found some good forums (this is before I knew about Connect). On one post by someone they mentioned that they had used a vibrator of some sort. That got me to thinking, "do we have some sort of vibrator around the house?" Nothing came to mind. At some point it occurred to me that my Sonicare toothbrush is sort of a vibrator. I assumed it probably would not help Linda but decided to ask her if she was interested in trying to use it on her itch areas. She was also skeptical, but she was desperate enough to try it anyway. So she turned on the Sonicare toothbrush with the brush attached and held the backside of the brush (the hard plastic part not the bristles) to her foot and started to move it back and forth over an itchy area. To our shared surprise this actually stopped the itch. From then on she has kept a Sonicare toothbrush with its charge stand on the table next to where she sits in the living room. I can't begin to tell you how much she has used it since and the amount of relief it has given her. Since then she has also acquired another vibrator that has a slower deeper vibration. Sonicares vibrate at about 5000 rpm's and this other one is probably a tenth of that but it is stronger. Here is the Amazon link to that one: https://smile.amazon.com/gp/product/B018U6Q1V2/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I don't know if you Chris or anyone else would benefit from the Sonicare idea but I wanted to make sure I told you just in case it might be helpful info to you. I know there have been times when her itch has not been helped by the Sonicare but I also know that it consistently has been a big help many many times and continues to be.

Aside from the Sonicare she has also gotten relief at times from Aveeno cream (purchased at Walmart). That seems to be pretty consistently helpful. She also used to use a DMSO gel and liked it for a while but at some point it stopped helping. One thing she learned early on was NOT TO SCRATCH. She will use all of her willpower that she can muster to not scratch because that is just a losing battle and totally counterproductive she has found. This itch caught us both completely off guard and coincided with a worsening of all of her neuropathy symptoms. She has since been housebound and has not been out more than a couple of times in the last ten months. Regards, Hank

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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.

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Good evening @kyc117, I am so bummed that you have to deal with itching. You ask....maybe an early symptom? What are you thinking that itching might be indicating? The Bath and Body Works solution isn't half-cocked. I remember someone else mentioned that product several years ago.

Unfortunately, my itching seems to have a lot to do with emotional stress.......as I have begun tracking the beginning of itching incidents....they all seem to be set off by a fear, an omission, a regret, a sorrow, and sometimes a sadness. I do have some amazingly good Rx solutions. The new Sarna topical (Sensitive) was just introduced and my dermatologist let me know that I should try it because it has a special new ingredient. She was right and it does help more than the old one did.

So....we tumble along....looking for relief....trying to control what I call the "onslaught". Stay in touch, stay calm. I am here for you.

May you have comfort and ease.
Chris

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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!

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@artscaping Sarna is one thing I have not tried yet. Is it over the counter or on prescription? I have tried everything I can get my hands on but still continue to claw at my skin - night time being the worst.

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Hi, I to suffer from (4-5 years) Neuropathic itch. My main line of defense is "Guided Meditation", or ice cold shower. The meditation knocks me to sleep in a couple of minutes, the "cold water’ (not pleasant) gives me relief up to 24 hours + or -,. As far as lotions go the best OTC I’ve found is Sarna (.5% Camphor, .5% Menthol). I was prescribed Naltrexone by my dermatologist, it absolutely worked 100%. No Itching anywhere, it was actually unnerving, but sadly relief only lasted about 30 days, I tried it again, but no luck. The totality of what is known about "itching, skin disorders is only matched by what’s Not Known". Conclusion it’s a three ring circus, nerve impingement begets, itching which begets stress disorder, "they simply feed of each other.

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Ask your dr if you might qualify for free dupixent program
I started using my thigh but it hurt.
Now i pinch a area of my abdomen that is more fat than my thighs.
Its much less bothersome. Change sides each time.

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