Help!! Severe itching with no relief -- not sure why!

Posted by mmiles24 @mmiles24, Mon, May 11 1:38pm

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!!!!!

@mmiles24 Welcome to connect we try to help with what we can from our problems. That itchy must be driving you crazy . Sorry you have to put up with this . Here is some things I can think of have you checked your meds out maybe a med or part of that med you are allergic to, any new detergents used or fabric softner , food allergies, any new dish detergent ? clothing ? Here is a suggestion that may help take a oatmeal bath this relieves itchyness for awhile . But look into if you have changed anything as I stated . Let us know

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@lioness

@mmiles24 Welcome to connect we try to help with what we can from our problems. That itchy must be driving you crazy . Sorry you have to put up with this . Here is some things I can think of have you checked your meds out maybe a med or part of that med you are allergic to, any new detergents used or fabric softner , food allergies, any new dish detergent ? clothing ? Here is a suggestion that may help take a oatmeal bath this relieves itchyness for awhile . But look into if you have changed anything as I stated . Let us know

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@lioness
Thanks so much for your input. Much appreciated!! It's my sister-in-law Grace that I care for having the issues. No food allergies — we just had testing done by an allergist last Thurs. We've also ruled out other skin / topical allergens from detergents, fabrics, etc.
I've heard of the oatmeal bath. Tell me more on how to do that. Use regular rolled oats, like Quaker Quick Oats, or something "specific"?

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Hi @mmiles24, I add my welcome to @lioness'. I also might suspect new or changes to her medication.

Let me bring in the "itch squad" (fellow members) to offer suggestions to soothe the itching until you get help from the medical professionals to find out what the underlying cause might be. @rosemarya @artscaping @gaybinator @2011panc @jeanne5009 @jenniferhunter and @laisseraler have all experienced itching for a variety of reasons from liver issues, neuropathic itch to brachioradial pruritus. They can tell you more about the oatmeal bath and other tips to help get relief for your sister-in-law.

Mmiles, when did the itching start? Is it a recurring symptom or is this new?

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@colleenyoung. Thanks for the welcome and your response. The itching started about 8 wks ago, and has been severe as of the past 2 wks. We are suspicious of the meds as well. Just two hours ago her rheumatologist has stopped her Kineret med and upped her prednisone from 7.5mg to 20mg/day. We were on a gradual decline, but because she's stopping the Kineret she is increasing the prednisone to keep the inflammation at bay.
Can't wait to hear from @rosemarya @artscaping @gaybinator @2011panc @jeanne5009 @jenniferhunter and @laisseraler .

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@mmiles24

@lioness
Thanks so much for your input. Much appreciated!! It's my sister-in-law Grace that I care for having the issues. No food allergies — we just had testing done by an allergist last Thurs. We've also ruled out other skin / topical allergens from detergents, fabrics, etc.
I've heard of the oatmeal bath. Tell me more on how to do that. Use regular rolled oats, like Quaker Quick Oats, or something "specific"?

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@mmiles24 I assume you have done the Calamine lotion and other meds for it . I had to give a patient this bath . You fill your tub add just regular Quaker oats not the minute or micro kind the old fashioned oats. Stir it in the water then tell you sister in law to get in and soak for awhile . It is soothing . Then just dry as usual . Maybe some others can join in here to tell you a different way but thats how I did it . Hope this will help her .

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@mmiles24 When I was going through chemo I broke out in a rash all over my body which itched really bad. I took Benadryl and received a little relief until I called my oncologist. He called me in dexamethasone which gave me much relief along with the oatmeal bath. My husband has been having stress hives and was told to take Claritin (Loratadine) and Pepcid (Famotidine) which is a histamine-2 blocker)) and it has helped to a degree. It does sound like a possible allergy to a medication or it could be possibly from the Lupus. Lupus does have a tendency to cause a rash. I sure hope your S.I.L. finds some relief soon. God bless.

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@mmiles24

@colleenyoung. Thanks for the welcome and your response. The itching started about 8 wks ago, and has been severe as of the past 2 wks. We are suspicious of the meds as well. Just two hours ago her rheumatologist has stopped her Kineret med and upped her prednisone from 7.5mg to 20mg/day. We were on a gradual decline, but because she's stopping the Kineret she is increasing the prednisone to keep the inflammation at bay.
Can't wait to hear from @rosemarya @artscaping @gaybinator @2011panc @jeanne5009 @jenniferhunter and @laisseraler .

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Good evening, @mmiles24. I am a recent recipient of a heavy-duty course of neuropathic itch. If she feels as bad as I did, then it is urgent that your SIL be given relief from this horrible sensation. Here is the link to the oatmeal bath:
https://www.webmd.com/skin-problems-and-treatments/eczema/colloidal-oatmeal-baths
And you probably already know that warm water is better than hot? I have used an Rx topical like Triamcinolone Acetonide Cream for mild cases of "the itch". My recent "itch" attack was so severe that my PCP and Dermatologist are now collaborating to find out what was different. I can tell them….."agony".

Another tip…..:
As I literally crumbled to the floor, my life partner just began rubbing me all over…….with a medium pressure. That was a big help.

The most effective treatment was a small jar of what is called Releaf Balm. It is one of the products that I also use to manage my neuropathy pain. At this point, I truly feel that the two sensations, pain, and itch…..are equally torturous.

If your SIL lives in a legal cannabis state you may elect to try the topical. I have always managed my neuropathy pain with medical cannabis so I won't know of opioid pain products.

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

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@mmiles24, I am so sorry to hear about your sister-in-laws itching. I experienced some awful itching that accompanied my liver failure. I have paced the floor, cried, and scratched. I found some comfort from an itch relief lotion named Sarna. It is an over the counter lotion. I tried others but that one worked best for me. My husband helped my to reapply it often. That was 11 years ago, and I still see it in the lotion aisle. A warm soaking bath in Aveeno Oatmeal Bath Soak felt good to me, too, If I took the bath before bed, and then applied the lotion, I sometimes could fall asleep for part of the night.
I hope that she gets some relief with the increased prednisone.

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mmiles24@rosemarya@
Oh yes…itch! Went to every Dr. to find an answer and cure. Pretty much Sarna…I remember the smell. And Aveeno gave some relief. Dermatologist gave me many different creams. I think it was exzema but it had to run its course. Lately I have started to itch so I take hydroxine..atarax which also helps me sleep.
Hang in there….

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@lieutenantasmith

@mmiles24 When I was going through chemo I broke out in a rash all over my body which itched really bad. I took Benadryl and received a little relief until I called my oncologist. He called me in dexamethasone which gave me much relief along with the oatmeal bath. My husband has been having stress hives and was told to take Claritin (Loratadine) and Pepcid (Famotidine) which is a histamine-2 blocker)) and it has helped to a degree. It does sound like a possible allergy to a medication or it could be possibly from the Lupus. Lupus does have a tendency to cause a rash. I sure hope your S.I.L. finds some relief soon. God bless.

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@lieutenantasmith Thanks for your suggestions. This is good! God bless you too!!

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@artscaping

Good evening, @mmiles24. I am a recent recipient of a heavy-duty course of neuropathic itch. If she feels as bad as I did, then it is urgent that your SIL be given relief from this horrible sensation. Here is the link to the oatmeal bath:
https://www.webmd.com/skin-problems-and-treatments/eczema/colloidal-oatmeal-baths
And you probably already know that warm water is better than hot? I have used an Rx topical like Triamcinolone Acetonide Cream for mild cases of "the itch". My recent "itch" attack was so severe that my PCP and Dermatologist are now collaborating to find out what was different. I can tell them….."agony".

Another tip…..:
As I literally crumbled to the floor, my life partner just began rubbing me all over…….with a medium pressure. That was a big help.

The most effective treatment was a small jar of what is called Releaf Balm. It is one of the products that I also use to manage my neuropathy pain. At this point, I truly feel that the two sensations, pain, and itch…..are equally torturous.

If your SIL lives in a legal cannabis state you may elect to try the topical. I have always managed my neuropathy pain with medical cannabis so I won't know of opioid pain products.

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

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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.

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@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/

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@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.

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@2011panc

@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.

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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%.

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