There is an approved medicine from Japan that has been researched to help relieve symptoms of Sjogren's that is now also showing promise in the prevention/treatment of coronavirus.
To view the article where it discusses Cepharanthine's effect on Sjogren's, see:
Has anyone tried Cepharanthine for Sjogren’s Syndrome?
I have a range of specialists, including a Rheumatologist, who are treating each disease/syndrome that appear to all link back to SS. I am hoping to treat the Sjogren’s Syndrome to try and reduce its impact and progression. I understand there is no cure.
As mentioned above, I have Sjogren’s Syndrome as well as GORD, Coeliac disease, type 2 diabetes, connective tissue syndrome, multiple arthropathy, hair loss, tachycardia, heavy sweating, lack of thermoregulation control and neuropathy (burning, pins and needles, cold feet).
I am a teacher and work full-time with young people disengaged from school. I really enjoy my work but I am really struggling with my low energy levels, and trying to cope with my wide range of symptoms and severe pain associated with SS.
My rheumatologist has said that he is not aware of any association or link between Sjogren’s Syndrome and my gastric, autonomic and/or neuropathic problems. From what I have researched and information from this site, I understand that there are strong links. The autonomic and neuropathic symptoms only started in July 2019,
I was diagnosed with SS in 2014, although had symptoms for at least 10 years before this. Leading up to the diagnosis I had low B12 and iron levels, gastritis, gastric reflux, gastroparesis, severe dental decay, corneal ulcers due to dry eyes, dry mouth, mouth ulcers, bursitis (rt hip, rt shoulder, lt shoulder), muscle and joint pain and dry itchy skin.
I have tried plaquenil, methotrexate, short treatments on steroids, steroid injections, I respond well to steroid but these do not provide a long term solution. My eyes are going well with Novatears eye drops during the day and Poly Visc eye ointment at night, as well as 2 Lacritec capsules per day. I also find wearing eye glasses minimises evaporation and dryness. For stomach problems I take Nexium 40 and Motilium. For Diabetes type 2 I have 2 Gliclazide 60mg in the am, Metformin 1000mg in the pm and Trulicity 1/week injection. I had to have dental implants due to extensive teeth decay. Long process and expensive but well worth hi
I am now seeking your help to locate a:
•new rheumatologist in NSW or VIC. I live in Southern NSW, Australia.
• feedback from anyone who has tried Cepharanthine.
• treatment for issues related to autonomic and neuropathies associated with I Sjogren’s Syndrome. Symptoms include (tachycardia, heavy sweating, constipation, hair loss, burning, pins and needles, inability to control body temperature, dry and itchy skin).?
Thank you for taking the time to read this. I appreciate any advice and tips.
Hi Caz, I have not personally tried Cepharanthine yet, but if I were you, I would definitely do some research into seeing if Low Dose Naltrexone may be able to help you. You can read this article on LDNscience: ldnscience.org/resources/in...
Also be sure to look at the patient interviews that discusss Sjogren's as well.
No matter what doctors may say. I believe that my gluten intolerance/gastric issues, eczema/rash with fluid pockets and my Sjogren's Syndrome w inflammation are all related. Many organizations and doctors relate SS with eczema as our immune systems acting against a perceived toxin.
My response is to treat my symptoms to have a better life quality which centers around watching what I eat, exercising, hydrating and resting.
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