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.