Showering with Sjogren’s

This is very interesting. So, from what I’m reading, I would be one of the only Sjogrens patients whose only symptom is dry eye.

I cannot cry, either and I have very dry eyes. My mouth gets dry, too, but have not been diagnosed with Sjogren’s Syndrome. My neurologist believes I have Myasthenia Gravis. I am in the process of getting an appointment with the Maya Clinic.

Lots and lots of moisturizer!❤️

I use a natural soap from India and shower twice a week. After I don't towel dry, I directly apply baby lotion to my whole body. Less itching and skin does not look or feel dry. Hope this helps. But I do think the environment, and what you do for work would influence this. I am retired and home.

Before Nizoral did you notice your scalp being super dry and tiny white flakes (dead dry skin) everywhere ? I was diagnose but haven't been able to find a decent shampoo that doesn't dry me out even more

@moylandavis
I’m confused about your post. What is the name of the over the counter amino acid supplement? I tried the drug store and they could not find anything like that or beta alanine. Please help. Thanks

The amino acid supplement is Beta Alanine. I buy the NOW brand from Amazon. It is typically used as a pre workout supplement, so you could find it at a shop the caters to athletes. I buy the 750 mg capsules. I take 1500 mg 30 mins before showering. It works best in the evening. Not sure why but someone mentioned that caffeine might impact its effect???

@moylandavis
Thanks, but I read online that this can actually cause itching??? You say it stops itching? I don’t want to use the wrong thing. Please tell me about your results.
Thank you

@dkennedy6

Beta Alanine at High doses can cause tingling on the skin...some say itch, but it is tingling. Athletes take 2250 mg or more. It targets nerve endings...Aquagenic Pruritus itch is a neurological issue( that is why dermatologist do not know how to treat.) ...and 1500 mg BA kills the itch for me.

There are several threads on Mayo discussing Aquagenic Pruritus, please search and you will see more information. In one thread, a neurologist who has AP, discusses...I'll search and find that link for you.

Also, If you Google AP and Beta Alanine, you will find several references...NIH, and other respected medical sites...there is a paper from Stanford also...

I have been using for about 9 years, hot shower in the evenings and it works great, 80% to 100% itch relief. I also get random itch from change in temperature, I take 750 mg and it takes about 15 to 20 mins.

@dkennedy6
https://connect.mayoclinic.org/comment/1430065/
Her is the link I referred to in my reply...

Here is what AI says!
AI Overview
Beta-Alanine For PV Related Itching: A Potential Solution
Beta-alanine shows promise as a treatment for aquagenic pruritus (AP), a debilitating itch from water contact, by potentially calming overactive skin nerves, with patients reporting significant relief taking doses like 750mg-2g before water exposure, though it's an off-label use supported by case reports and patient groups, not large trials yet, and can cause harmless tingling (paresthesia).
How it works (Theory)
Nerve Pathway Desensitization: Beta-alanine is thought to activate MrgprD receptors on sensory nerves, which transmit itch signals. Sustained exposure may desensitize these pathways, preventing the intense itch from igniting.
Blocks the "Itch Attack": It may calm the skin's itch response before it fully starts with water contact, not just mask symptoms.
Evidence & Usage
Case Reports: Several case studies, including for adolescents and those with polycythemia vera (PV), report successful management of refractory AP with beta-alanine.
Patient Experience: Online support groups show many sufferers find relief, often taking 750mg to 2g before bathing/showering.
Gaining Traction: It's gaining interest in patient communities and some medical literature but needs more controlled studies.
Considerations
Side Effects: The main side effect is harmless tingling (paresthesia), which can be managed with lower or sustained-release doses.
Safety: Generally considered low risk, but clearance from a doctor is wise, especially with other conditions.
Off-Label: It's not a standard prescribed treatment yet; it's used based on emerging evidence and anecdotal success.
In summary, beta-alanine appears to be a valuable tool for AP sufferers, helping to prevent water-induced itching by acting on nerve pathways, though it's still considered an experimental treatment.