Sjögren’s Syndrome Symptom Management with Heather Sorensen
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- Опубликовано: 9 июл 2024
- Sjögren’s Syndrome is an autoimmune disease that affects areas of the body responsible for moisture. Learn about the future of Sjögren’s management and how symptoms such as dry skin, mouth and eyes, can be treated.
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Mean age at diagnosis is more accurate! Mean age at onset is inaccurate. I now know that I have had Sjogren's (undiagnosed) for over 45 years and all my issues were attributed to fibromyalgia and/or IBS-D, both of which I was finally diagnosed with at 19. Like many women, my symptoms were ignored, not listened to, and all attributed to fibromyalgia or bring female or poor genetics.
I have also realized, along with my Rheumatologist and my PCP, that my almost 87 year old mother has suffered from undiagnosed Sjogren's most of her life (no need to tell her now). All of her symptoms were attributed to being female, poor genetics, etc.
It is time for doctors and those in the medical field to listen to women and their symptoms, rather than say "it is all in your head," or "you are just depressed," or "avoid stress," or "you have bad genes," or "it's because you are female."
And, one suggestion, for the presenter...please repeat the question asked prior to answering!
The gaslighting is REAL! 😡
It's time to get rid of the current medical system. Why people still trust doctors bought by big Pharma is beyond me.
I started low dose naltrexone 2 weeks ago and my dryness is already improving so much that I cried for three days-normally if I get upset I cannot cry. In the shower I use coconut oil to wash, except for using some white dove soap in some areas. I washed my eyes with baby shampoo but I also use eye scrubs and lip scrubs After a shower I use castor oil to lock it all in. But it hasn't resolved my fatigue. Although I am not a key and have not been on pain meds for 3 weeks now, after 23 years. I'm going to ask for plaquenil when I go back to add to the LDN. I am 60 years old and I've had it most of my life although only diagnosed a few years ago I've been treating symptoms for a long time.
Hi . How do you use Naltrexone as how much mg ? is it a drop shape? I hope you can answer. Thank you Greetings from the Netherlands
@@Atheist-Pinar generally they’ll start you on .5mg, then 1mg, 2mg up to 4.5mg. A dr has to call it in to a Compounded Pharmacy. It’s not a script from the pharmacy.
Placqunel didn't work for me.
I've had two cancers one in 2013 and the other in 2018 of Lymphona to my salivary gland on both sides of my paratid gland. Just wonderful. I hate it.
I am on low dose Naltrexone for my Sjogren's and other autoimmune diseases, which is helping the symptoms immensely.
But I just learned that when I had my right salivary gland with three nodes removed in 1978, erythema nodosum/Stevens Johnson's disease in 1984, and meningitis in 1988, that they were all due to Sjogren's! I have been medicating the symptoms for years but was only diagnosed a few months ago. Now I have learned that there are heart and lung problems with Sjogren's but no one has really talked about it.
If anyone knows of a video that talks about the heart problems in-depth please let me know.
Natrexone...help u with saliva glands??
Naltrexone is for alcoholism. If they put that in your chart. They will label you a alcoholic. Doctors get lots of money prescribing drug/alcoholic medications. Especially now that the government has received so much money for drug and alcohol treatments.
Thank you! Very informative and useful presentation for self management of Sjogren's symptoms.
Informative video for those just diagnosed....me!!! Thank you
This was a very good informative video...
thank you thank you thank you !!!!!
Thank you for all the Great information‼️😍
Does anyone have non stop sticky fluid from top eye lid?
I used to use Bioteen, but I found out I'm allergic to the mint flavoring--which is in almost all oral products. I even had to find an unflavored toothpaste.
I had a female doctor treat me terribly over this illness. She wouldn't prescribe me Prendisone. But prescribed fungus cream. But the instructions said, do not put near your eyes. She told me to spread it on my eyelids. Dangerous advice. Then she gave me 30 days to find another doctor. My dentist wanted to give me xrays every time I came for a visit. I had to stop him. Too many xrays are Dangerous. I went in for a MRI a few years ago. For a adenoma. The tech asked me if I had alot of radiation. Because my MRI showed damage from radiation. No cancer. Just good, helpful professional doctors looking out for me. So much so, that they allow so many scans and xrays to fry my brain.
Time for functional medicine.
Thank you heather,lovely video,a very well thought primer,me a family physician learned,more for patient and public education,thank you,and keep it up
I have dry eyes because of my Sjögren's syndrome and now they're very blurry. My moms been putting eye drops in my eyes twice a day and her daughter thinks I have pink eye because of how red they are. What should I do?
Go see your primary care doctor or the rheumatologist that diagnosed you with Sjögren’s because the doctor prescribed medication for you to take and also either prescribed eye drops for you or told your to get over the counter type along with mouthwash like ACT or Biotene. Pink eye (conjunctivitis) has symptoms like thick yellow crust that sticks your eyelids together when you open them after sleeping almost like they’re glued shut. From now on, wash your hands VERY thoroughly with hot water and soap after you use the bathroom because pink eye is the result of you getting fecal matter in your eye. What medications are you on for Sjögrens? Also I know your post was 4 months ago, but i hope I was able to help in some way!
I got embarrassed around my friends having sjorens but I came across an herbal doctor on RUclips dr udoka who healed me totally.
I was given some eye drops and a prednisone eye drop as well...Punctal plugs are amazing as well...I have wanted to roll my eyes in a cup of water they were so gritty for so long. So much better
No choice about taking Zyrtec. Being alive makes me itch and congested/watery eyes, nasal drip. Unavoidable.
Does there have to be a positive ss-a/ss-b to be diagnosed? I have all the symptoms including dryness symptoms, I have positive anti ccp and rheumatoid factor
I got embarrassed around my friends having sjorens but I came across an herbal doctor on RUclips dr udoka who healed me totally.
@seaglassmomma I’ve heard some patients are negative by blood, but positive lip biopsy or Schirmer’s tear eye test.
I read an article saying that you can have negative ss a/ ssb but have autonomic nervous system involvement. It can affect peristalsis in the oesophagus. You can have manometry of the oesophagus to measure this.
@@jilljones4566 well actually it seems as if I have Stiff Person Syndrome. My symptoms only got worse and then I started having total core and limb spasms. It’s been a fun past couple of years. I got to start Olumiant thought and it has helped with all my autoimmune issues.
Can I take estradiol or does that make it worse?
Made it worse for me. Women need testosterone. But good luck getting a doctor to prescribe it.
So maybe it wasn’t my imagination that this has mostly been a problem since I started my job in 2022 and then got covid three months later.
I have Sjogren and rhumitoid arthritis and my rumatoligest gave me plaquinel and told me I have to see a eye doctor every 6 months if I take plaqwinel so I’m scared to take it I don’t want it to effect my eyes it the only part of my body that works good 👍
My eye doctor saw me once and gave me Systane drops. He doesn't feel that he can do anything else for me. He said I need a Rheumatologist. But I can't get in. Six month wait.
Xylimelts work amazing for me. Inexpensive available on Amazon. I totally recommend. Thank you for the recommendation on ACT ..I really don't like the Biotene.
Cant use Biotene also,its terrible
Hai .what is ACT ?
@@Atheist-Pinar it’s a mouthwash for dry mouth
U are an angel .... J thought I was on there you might be my twin .. lmao .... Thanks
What about covid? My eyes have been swollen and red since I had covid. The ophthalmologist and allergist keep telling me its an allergy.
pain treat with tylanol LMAO
everything of serious important is skimmed over at the last of this God for saken boring, common sense video
lame
Sjogren is pronounced Shergrens
Please update content. Sjogren's is now called Sjogren's Disease instead of Syndrome. Primary and secondary is no longer designated. There is often overlap with other autoimmune diseases. Refer to the Sjogren's Foundation: www.sjogrens.org.