Help!! Severe itching with no relief -- not sure why!
My sister-in-law (SIL) is severely suffering from itching over her entire body, with concentrated areas being her chest, breast & nipples, upper back, and buttocks. She's been diagnosed with Stills Disease (with eczema), hypothyroidism, and most recently lupus (May 8, 2020). She takes Kineret (anakinra), a low dose of prednisone for the Stills Disease; Synthroid for her thyroid condition, and nothing yet for lupus since the diagnosis is so recent. She started Kineret in Jan/Feb 2020. Her prednisone was just dropped to 7.5mg/day on May 7, 2020. We see her rheumatologist at least 2x per month. We visited an allergist last week and tests came back normal for food allergies. We are trying to figure out what will give her relief from her itching -- Benadryl, and Allegra 180mg gives very minimal relief. She is NOT sleeping, which is only intensifying her issues. We desperately need help. Her itching is beyond severe because she is in tears! Help!!!!!
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Good evening @artscaping , thanks for your input! I just joined this online support group today and everyone has given the best input.
@mmiles24 Welcome. Itching is the low end of the pain threshold and it can be caused by a nerve compression or skin irritation that in turn can be caused by a condition that stores waste products in the body. Also if someone is engaging in massage or myofascial release, those practices release waste products and toxins from tissues.
In my experience with MFR with my physical therapist, I had a lot of skin itching. What relieved the itching was talking Epsom salt baths. I would soak in the jetted tub about an hour and when there was a lot of stuff stored up in my skin, it would leave a dark bathtub ring, and when I had removed a lot of it after a few weeks of a weekly soaking bath, I did not leave a dark bathtub ring. I took a shower first, so I was clean when I went into the Epsom salt bath. My skin also clears up from the Epsom salt baths.
I have also had a lot of itching on my back around my shoulder blades and that was related to a spine problem. I had cervical spinal stenosis and I am a Mayo spine surgery patient. After my recovery and rehab, the itching has stopped. Something that may help is topical Arnica gel because it is a pain reliever. I used to put it on my neck to calm down my pain before I had spine surgery, and it did help.
There is one more possibility I'll mention. If there is an immune response to something in the body such as foreign materials in dental work or surgical implants, that can cause inflammation and itching. I recently experienced a problem like this too because of dental work with old silver amalgam fillings from my childhood and old root canals because of breaking my teeth as a kid. Those root canals were failing now many years later, and recently, I made the decision to remove those teeth and replace them with bio-compatible zerconia ceramic implants. When I had those bad teeth extracted a couple months ago, my asthma got better and I no longer had the constant breathing difficulties due to extra phlegm. I do have allergies that affect my asthma and cause phlegm, but I get it under control much sooner. When I had my spine surgery, I chose not to have hardware placed on my spine and I stayed in a neck brace until my spine fused. I had to give up wearing pierced earrings because I reacted to every metal I tried. I also know someone who's wife had titanium dental implants put in and for 9 months, had an immune reaction that was not controlled even with being on prednisone for months. She had the titanium implants removed and replaced with safer ceramic ones which solved that problem. Titanium is often mixed with other metals and is not pure. I had different metals and titanium in the crowns in my mouth on the teeth that were just removed. I also have a thyroid condition, Hashimotos that according to my doctor was caused by the old silver dental filings. I had those removed a few years back, and my thyroid condition improved. At first, they could not measure the level of antibodies against the thyroid. It was off the charts. After the removal of the fillings, the levels could be read by a blood test and they are low now and I have reduced my need for thyroid meds. I take desiccated pig thyroid. Some patients cannot convert the synthetic thyroid meds to the right components, and the natural hormones work better in those patients like me because all the components are there.
Her symptoms do seem to be an immune issue from your description. As others have suggested, there can be reactions to drugs that cause these symptoms too, but if she needs these drugs it becomes a problem. She may want to consult a functional medicine doctor or the environmental allergy specialty because they look for the functional cause of the disease and try to prevent it with understanding of the biochemistry process that is leading up to it rather than relying on drugs to treat symptoms. You can look for integrative medicine or environmental medicine doctors on this site. https://www.aaemonline.org/ I hope this gives you some ideas to think about or questions you should ask, but you need to be at the right doctor for those questions because doctors tend to think about things in terms of their specialty. When I found the root causes of my issues, my need for other drugs and treatment stopped. At one time, I saw a rheumatologist who told me I had incurable arthritis and prescribed drugs that have since been removed from the market. Because of my own detective work, including figuring out my food and environmental allergies, and a functional medicine doctor helping me, I have resolved all these issues and I take no prescriptions except for an asthma inhaler on occasion, and the thyroid medicine. I feel a lot better too.
This author has experience in overcoming autoimmune problems
https://donnajacksonnakazawa.com/autoimmune-epidemic/
This is from the environmental health center in Dallas.
http://www.ehcd.com/implant-syndrome/
Myofascial release also helps clear waste products from muscle and fascia
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
@mmiles24 I do not know the cause of my itching, but have been informed that it is common among transplant patients. I had a pancreas transplant in 2011 and the itching began with a vengeance several years later. Like everyone else I tried multiple treatments.
This is what works best for me:
1. Drink plenty of fluids. I take in a minimum of 80 ounces daily in a mixture of (up to) 8 ounces of coffee and water. I occasionally have a soda, but rarely drink anything else.
2. Wash with an exfoliating towel to remove all dead skin cells from all over your body.
3. Wash with a highly moisturizing body wash like Dove Extra Moisture.
4. Find a moisturizing lotion that you like. My best options are Avon's Skin So Soft (lotion or oil), Menthol Lotion (Gold Bond and Walmart brands), and spray on Aquaphor. The sprays were in hopes of reaching that area between my shoulder blades, but did not work for me. I just cannot reach that area by myself, even with an applicator.
5. Cut showering to twice per week if possible.
I hope you find relief. The constant itching is miserable.
My husband developed severe itching on his back. The skin looked normal and was not dry.
The cream that gave him instant relief was a prescription for Triamcinolone 0.1%.