The "itch".....An update about testing and treating.

On April 27, 2020, I posted my first discussion about itching after an episode that was a scary cry for help and you responded. You sent me messages of many trial and error efforts....most without long-term success. In fact, some of you had just about joined me in giving up. Quality of life was disappearing into the torture of itchy arms, legs, back, body, and even eyes. Many of you have visited dermatologists and internists......and been conscientious about following the professional's recommendations to no avail. I tried...I really did. I was still suffering at Christmas and with dry scaly arms, rashes, and inflammation, I struggled along through the Holidays.

On New Year's Eve, my MFR therapist called for help and I ended up with an internist who agreed to see me at 4:30 pm. He thought that it might be scabies and that was what he treated. No amount of washing bedding and clothes resulted in a reduction of painful and almost vulgar symptoms. One medication did work and that was hydroxyzine, 50 mg every 8 hours. However great it is in an emergency, it is an antihistamine with some contraindications for my neuropathy medications. and not the best bang for your buck over time. Makes you feel sluggish. It also fills your body with extra fluid....like 6 lbs of it.

The internist did secure the very first 2021 appointment with my dermatologist who had offered me Benadryl, Zyrtec in the Spring. She was pretty aghast at the sight of my raggedy, inflamed arms, legs, and back. We went to work on the itch. Immediately, I was given Tacrolimus, a thick steroid topical to go with the internal capsules of hydroxyzine. Other than being an overgrown slug, the symptoms dissipated enough for me to get back to the specialist for the next steps. By this time I was out of my league and reliant on her for information and decision making. Jay served as my historian and was determined necessary by the clinician. So the three of us....are now on a course to discover and treat both the internal and external causes of what I had been calling a neuropathic (SFN) problem.

The external antagonist was verified after a week of patch testing as an allergic dermatological response to the Fragrance I and II suspects. There is hope that a new medication, Dupixent, will resolve the external antagonists. And then we stopped. What about the internal allergens? Do we just start the medication and see how it goes. If it doesn't work, we won't know why and it will be back to our starting point. But can I survive three months of testing to be able to identify both culprits? The advantage will be a more thorough and reliable diagnosis, better dosing parameters and the information can be shared beneficially with others.

The downside is that I have to stay on minimum doses of the steroid & antihistamine medications, either the capsule or the topical, for 90 days. Our shared decision was to wait and stay in touch. I am compiling a daily journal that will help. I was given a 122-page packet of "Yes you can" safe external products. I am currently on page 3 trying to find safe cleaning supplies and I will be replacing products as I encounter them.

I welcome your questions and will attempt to deliver some relative feedback. Just remember that I know very little about any of this and have no medical training.....just desperation.

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

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About a year I have been itching..no one has done skin scrapings..

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@jlmis70

About a year I have been itching..no one has done skin scrapings..

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Here is a photo of the patch test.

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@artscaping

Here is a photo of the patch test.

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I think you leave it on several days. Each area has another itch suspect from your surroundings, including clothes, bedding, soaps, etc. It was very helpful. And there is no skin scraping. The clinician watches for a response on your skin. What kind of tests have you experienced?

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@artscaping

How did I ever miss this post? Wow.....you and I have gone through the same battles. I have finally been approved for Dupixent which is a new anti-itch injection. I hope it works.
In the meantime, I am using Dermeleve. It is also new and takes care of the "itch" within minutes and lasts about 6 hours. You can find it online....dermeleve.com. My dermatologist brought it back from a conference where it was introduced.

Also, be careful about reactions to chemicals like polyurethane. Just a few minutes in the same room with it and I had my worst ever flare. I use the entire line of Vanicream ......which I got at Mayo Clinic....shampoo, facial cleanser, heavy cream for legs and arms, facial moisturizer and I am sure other products that meet the no fragrance requirement.

I hope you are over the Covid spell and settled in your new abode.
Chris

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I am currently using dermaleve for brachrodial prutisis. It has been a life saver. I'm almost afraid to say it outloud!!

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They have done no testing..it is a mite issue.. but there is also something else going on... it's not scabies though..it starts in my eyelashes or eyebrows.. but also have something show up in my lip...

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@whattodo

I am new to this discussion but I have been researching fatty liver and I have learned that it can cause itching. Perhaps that might be the source of some of your symptoms?

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@whattodo - could you please pos the links on the articles you have researched on fatty liver disease?

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@artist01

@artscaping Hi Chris. We have much in common regarding Neuropathic itch. Mine is relegated either to Diabetic and/or my Giant cell Arteritis.
For many months I suffered so badly that I had to take hot showers once or twice in the middle of the night, just to get some short-lived relief. I tried every type of lotion and cream to no avail, including corticosteroid creams prescribed by my doctors.
Lately, like you are doing, I've been replacing all my personal products. In desperation, I spoke to a very knowledgeable staff member of our local Healthyway Foods.
She recommended a product line that contains none of the "bad things" - parabens, sulphates (particularly Lauryl Sulphate), fragrance, etc. I tried sourcing "natural" products online, at great expensive, and with no luck. I'm sure you're well aware of these products with all the experience you've had with this crazy-making itch.
I've now replaced all my shampoo, conditioner, deodorant, toothpaste, soap, mouthwash, everything, all with the same brand name of Curelle. (I live in Canada.) After just a week, I can see improvement. I almost can't believe it. My doctors have been unable to help me with prescriptions or over the counter suggestions, as your experience has also shown.
My worse areas for itch were my lower legs and scalp. Those two drove me mad . My doc suggested Selsun Blue (I don't have dandruff! Help!) and I've also tried many types of hair products for itchy scalp, sensitive skin, hypoallergenic, etc.
In desperation, for my legs, I've been using coconut oil for the past two months, and just lately, I'm experiencing somewhat of a miracle. No more itch there. Also, the health food store products have helped already. No more scalp itch or allergic skin reactions.
You may already have tried these suggestions, Chris, but I offer them to you and others, just in case.
Take care.
Laurie

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@artistd01 - I have been using Selsun Blue for my psoriatic, itchy scalp, coconut oil, Vaseline, lotions and potions, but still itching all over! I resort to an Extra Strength Reactine at night to get temporary relief from itching, but end up feeling very groggy in the morning, finding it difficult to get up. I take it anyway just to get some relief for the night (at least when I am asleep I am not aware of my itching, lol).

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