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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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Chris---Wow! You've been thru the ringer with itching! Thankfully, my itching has responded favorably to moisturizing, moisturizing, moisturizing.
I do take a low-dose antihistamine,10 mg Hydroxyzine (by the way, it is not a steroid) at bedtime, which helps as well. I tried a higher dose but it gave me a drug hangover effect the next morning.
I have reduced showering to once weekly, after which I thoroughly moisturize my skin. Take care and hand in there, Chris!
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1 ReactionThanks for your caring response. I think I meant antihistamine which I think doesn't get along well with gabapentin. Would you like to be my medical editor? I need someone to help me with the terminology.
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2 ReactionsChris, my goodness sakes alive! What a mess you're in. I missed how/when this began. Did it start on your arms or ankles or feet? Why are you dealing with it as neuropathy? I've had what I called neuropathy itch in my feet, arches, ankles, bottom of the feet, and the inside of the hands. Drove me nuts! I took Benadryl and used Cortizone 10 cream....what I had on hand......they .helped. I suppose, Allegra and Zyrtec were part of the antihistamine collection as well.
Then my whole body got involved, with the dryness of dry cement! My forearms looked and felt like alligator skin, truly, even wrinkled and coarse and dry and scaly. And, it kept getting worse. My legs began shedding! Tops of my feet shed after showers, as did my whole body show serious dry side effects. I tried everything w/any claims of help for dryness for whatever reason.
You know when I saw improvement for the first time? After in hospital with a multitude of symptoms including fainting, heart?, severe mood changes, tremors, etc.. The docs finally found my thyroid was out of balance. Now, with reduced thyroid meds, in just a couple months and with almost immediate changes, I have new skin all over! Most itching, not all, is gone or reduced.
My Mayo dermatologist also has me buying stock in Vaseline. Vaseline. Yep. I lather it on feet and hands and wherever I can reach, all over, and gracefully slide into bed at night. (I suppose it's a good thing I share my bed with my kitty, Samantha....only!) shower only every 2-3 days....horrors! After a lifetime of 2-3 times daily.....What a physical and mental adjustment! But, my skin is healthier, softer, doesn't itch much.....And, stop with the soap, even the better, or more expensive or hallowed shower or bath washes. She insists we don't need to scrub or soap our whole body! Blasphemy! She insists only soap under arms, private areas, areas that are truly covered with bacteria or dirt or whatever. The other 90% of our bodies needs only tepid, never hot, tepid water. I don't yet do that, but I'm working on the rest of her instructions and indeed seeing improvement. Guess when I get back to my warm, therapy pool I don't ever need to shower again!
Now, Chris, I do understand you're dealing with more than 'dry skin', that your 'itch' can come from any number of possible culprits. Inside and out. But, since doing these things, after the thyroid adjustment, my 'itch' is improved a bunch. I still need an antihistamine occasionally, especially now as we begin to see our cars turn yellow, sneeze more often, wipe our watering, itchy eyes heading into spring.
BTW: Before my current 1:1 + tincture night-time regimen, a Benadryl helped with restful sleep I will be adjusting that tincture a bit and see about getting a good blend for the daytime.
You, Jay and your dermatologist will conquer this. I am aching for you and the suffering this is causing. You will improve, the itch will lessen and you will have healing inside and outside that precious body of yours. Feel the love and hugs and good healing thoughts surrounding you this very moment. I'm sending you armloads of all that love and good thoughts right now.
Be well, be safe, and be blessed.
elizabeth
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2 Reactions@tim1028, I remember you....gave yourself a gym membership as a quality of life gift. Good for you. Enjoy.
Not trying to compete with anyone ... just saying I too am going mental with itching - all over my body as well as on my psoriatic scalp; so I can relate to you all! You name a lotion/moisturizer/shampoo, I’ve tried it. Skin still dry as an autumn leaf! I am also on Levothyroxine for my sluggish thyroid. Oh, and did I mention I have fatty liver disease and fibromyalgia too? So in addition to the itching, I am also dealing with a fibro flare up at the moment. The current Covid lockdown situation in Toronto is not helping in getting doctors appointments. Took me three days to get an appointment at a lab for a scheduled bloodwork - then an hour waiting in line to get into the lab for that bloodwork!
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1 ReactionI 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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1 Reaction@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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1 ReactionSo were you diagnosed as having scabies ? I was a year apo, then told it was caused by sleep deprivation by a dermatologist for 900.00.i bought a digital microscope for myself at Christmas but my doctor doesn't care to look at pictures or prescribe me medicine to treat dermodex.. they start in my eyelashes and spread about every 5 to 6 weeks... ivermectin and permethrin cream isn't working... horse shampoo does but it's only temporary..I need help badly...
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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2 ReactionsHi there @jlmis70 and welcome to Connect. We are all helping each other here and hoping to improve our quality of life. Early on in my pursuit of the causes of chronic neuropathic itch, I had a flare on Christmas Eve. There wasn't much available at urgent care.....only a young PA who I know felt overwhelmed by the task in front of him. Of course, as soon as I saw my dermatologist she said no to the scabies idea.
Until I know more about you, I can recommend Dermeleve. It is a new topical presented to me by my dermatologist after attending a conference. You can find it at dermeleve.com. It starts working in about 15 minutes and your relief can be up to six hours. I just received approval for Dupixent which I hope will be the final solution. I will try to stay in touch with you to let you know.
You may want to make sure you get a patch test and remove all your allergens from your daily bathing and clothes washing products. How long have you been "itching"?
May you be free of suffering and the causes of suffering.
Chris
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