Jun 20, 2024 • 9:43 PM
In reply to DonThomasMD's comment
Dr Thomas,
Recently xylitol was in the news and they stated it could cause heart attacks and strokes. Have you heard anything about this and what amount would you have to ingest? Thank you!
Jun 20, 2024 • 10:53 PM
In reply to kmilb68's comment
I also have dysautonomia and Sjogrens fibro neuropathy. Lupus. As vigilant as Iam to stay hydrated. Having gut issues also. Not on treatment. I think having both does affect our gi. Haven’t met a lot like me. Hope to find answers. So many of us are asking to help ourselves daily to no avail. I have always advocated for myself but it gets expensive and frustrating to not be explained.
1 ReactionsJun 21, 2024 • 12:41 AM
As a Sjogren’s patient, I often find it difficult to find treatment for the most basic conditions because specialists blame Sjogren’s and continue to tell me, “You may want to consider treating your Sjogren’s.” (I am already taking Plaquenil and my pro-inflammatory markers are normal. I lead a healthy lifestyle -diet, exercise, yoga, mindfulness, meditation etc.)
I do not sweat much, and am dried out everywhere. That gets blamed on Sjogren’s but it also causes problems getting treatment for conditions such as menopause and chronic sinus issues that cause earaches and headaches.
Since I do not sweat much (doctors blame the Sjogren’s on this, along with my reduced sweat gland fibers that are consistent with small fiber neuropathy), I will never be able to have the “right” vasomotor symptoms of menopause. In fact, I was denied hormones by gynecology. It took two years past menopause to finally find help from an anesthesiologist who understood the Sjogren’s connection.
Just recently, I had another issue with sinus congestion that caused an earache and headache. It was not a bacterial infection, and I had already tried every over the counter measure possible. In the past, I was given a corticosteroid, which helped. However, the clinician was too afraid of prescribing medication because she felt Sjogren’s was involved. She said to see my rheumatologist.
My rheumatologist is neither a gynecologist nor a PCP. She does not treat these issues, even if Sjogren’s may be related. (Fortunately, my anesthesiologist stepped in and prescribed a short course of a corticosteroids, which worked.)
Again, my doctors keep blaming just about everything on Sjogren’s and continue to refer me back to rheumatology to “treat” the Sjogren’s.
So, if my pro-inflammatory markers are normal, and I am already taking Plaquenil, how would a rheumatologist do anything else different to address and/or prevent these secondary symptoms? Are there any other treatments rheumatology can offer? If not, what are Sjogren’s patients supposed to do to find appropriate care and treatment, particularly when so many doctors outside of rheumatology don’t understand Sjogren’s?
Jun 21, 2024 • 9:13 AM
In reply to jazz_n's comment
I am so sad that you were denied hormones by gynecology. There is a known hormone connection with Sjogren's. There are plenty of journal articles that discuss this and you can find them with targeted searches. I can't share all the ones I have found here but this is just one example: https://pubmed.ncbi.nlm.nih.gov/14677186/
3 ReactionsJun 21, 2024 • 2:30 PM
In reply to olliesaunt's comment
Thanks for the article. I won’t be returning to gynecology anymore due to the negative experiences I encountered.
I wish medical professionals would stop blaming everything on Sjogren’s and stop sending me back to rheumatology to “treat the Sjogren’s,” as if there were some magical medication rheumatologists could prescribe to fix everything.
Jun 21, 2024 • 2:45 PM
I have on/off episodes where my head around my ears feels full..similar to being on an airplane descending rapidly. Makes wearing hearing aids uncomfortable. Is this part of a Sjogren symptom?
Pat Jones
Jun 21, 2024 • 6:38 PM
In reply to 1947pjones's comment
Hello 1947pjones,
Thank you for participating in our Ask the Expert event! Unfortunately, your question is outside the scope of the topic Treatment Options for Sjögren’s Disease. We have asked Dr. Thomas to focus on answering the main topic questions for this session so that we can be sure those all get answered in the limited amount of time. However, we do have future Ask the Experts sessions coming soon to this community and encourage you to stay engaged and consider asking your questions in the future!
You may also want to consider clicking on “create a post” to start a new discussion post with your question and see if your fellow Inspire members have some thoughts or ideas to share with you! You can also search to see if there are other posts from Inspire members on this topic and check out the Sjögren’s Foundation website for resources and information.
We hope these suggestions help. If you need further assistance, please reach out to TeamInspire by sending us an email at team@inspire.com.
Thank you!
TeamInspire
Jun 21, 2024 • 7:43 PM
Good afternoon Dr. Thomas,
Thank you for your support. In 2016, at 50 years old, I was diagnosed by lip biopsy and UV light with Sjogren's Syndrome. I have also been diagnosed with Osteoporosis and Osteopenia. I also was diagnosed with Celiac Disease. I frequently have mouth sores which are light in color in my cheek and tongue. Dentists and physicians have offered no diagnosis or course of treatment. They are very painful and I don't know what triggers them. Would you have any advice. Best, Kathleen Horne
Jun 21, 2024 • 9:06 PM
Being checked for crohns .. celiac panel comes back negative but IgA is always flagged as low. Would this have any relation to gut health ???already have Sjogrens pots lupus
0 ReactionsJun 21, 2024 • 9:11 PM
In reply to DonThomasMD's comment
In agreement. I have had to speak with insurance about the damage that can be done from Sjogrens. Honestly, from my experience. They need to be more educated about the disease.
0 ReactionsJun 21, 2024 • 9:15 PM
In reply to jazz_n's comment
I am at the same crossroads. I have been fighting so hard with all of this. Do they really get the extent of Sjogrens ??
0 ReactionsJun 21, 2024 • 9:40 PM
Hi Dr. Thomas -
I've chewed gum all day and used Xylimelts at night 24 hours a day for 6 years to help with my severe dry mouth. No medicine helped me. Several months ago when studies showed aspartame linked to cancer, I switched to gum made with Xylitol. Now Xylitol is linked to heart disease. My parents had cancer and heart disease, so I'd love not to use these products. Is there anything you recommend? Are there any items made without an artificial sweetener?
Thanks so very much!!!
Caren
Jun 21, 2024 • 10:02 PM
In reply to GingerMusselwhiteNew_9180's comment
I also have chronic sinusitis and I juggle between dry sinuses/dry nasal passages to thick mucus and post-nasal drip. The only thing that helps me is using the xlear products that contain saline and xylitol (I use the nasal spray). I also use the Navage irrigation system and make my own sinus rinse by mixing a saline packet with xylitol then use the Navage to rinse out my sinuses. It is the only thing that sucks out the mucus. I've heard other Sjogren's patients complain of a constant runny nose. I don't know why it happens unless you have seasonal allergies and allergens inflame the nasal passages. Sinus rinses can also help with allergies.
1 ReactionsJun 21, 2024 • 10:03 PM
In reply to JenniferTaber's comment
Hello JenniferTaber,
Thank you for participating in our Ask the Expert event! Unfortunately, your question is outside the scope of the topic Treatment Options for Sjögren’s Disease. We have asked Dr. Thomas to focus on answering the main topic questions for this session so that we can be sure those all get answered in the limited amount of time. However, we do have future Ask the Experts sessions coming soon to this community, and we encourage you to stay engaged and consider asking your questions in the future!
You may also want to consider clicking “Create a post” to start a new discussion post with your question and see if your fellow Inspire members have some thoughts or ideas to share with you! You can also search to see if there are other posts from Inspire members on this topic and check out the Sjögren’s Foundation website for resources and information.
We hope these suggestions help. If you need further assistance, please reach out to TeamInspire by sending us an email at team@inspire.com.
Thank you!
TeamInspire
Jun 21, 2024 • 10:08 PM
In reply to smithdj158c's comment
Yes, Sjogren's can cause lung issues. I highly recommend reading the Pulmonary Clinical Guidelines on the Sjogren's Foundation website. It's very comprehensive. There are baseline guidelines in there that were really helpful to me. Every patient, even if you are asymptomatic, should have baseline testing per the PCGs.
1 Reactions