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Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes
I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?
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@lgreg Insurance finally approved the Miebo eye drops and with a discount card I will get them for $0 Definitely a Blessing for me
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1 ReactionI have not by diagnosed with this but I drink water throughout the day for my dry mouth. For my dry eyes I use Systane Hydration PF eye drops, I have hypothyroidism, PBC/cirrhosis which are autoimmune diseases.
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1 ReactionI was diagnosed with Sjorgens syndrome 14 yrs ago. I was also diagnosed with St4 NH Lymphoma 5 yrs ago. Thankfully, my chemo and immunotherapy worked and I have been in remission for 3 yrs now. My son is a Dr of Internal Medicine. He said there is now a medical correlation between Sjorgens and Lymphoma. When it's diagnosed now, he orders a cancer screening. I'm sharing this with others that have Sjorgens syndrome. I probably had cancer for many years and didn't know it. Please have yourselves checked for cancer. ❣️
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1 ReactionDoes this work for you? I've been using over the counter drops, gels and ointments.
I was diagnosed with Sjorgens syndrome 14 yrs ago. I was also diagnosed with St4 NH Lymphoma 5 years ago. Thankfully I am blessed to be in remission for 3 yrs now. My son is a Dr. of Internal Medicine. He told me there is now a medical connection between Sjorgens and Lymphoma. Now, when diagnosed with Sjorgens he orders a cancer panel also. I am sharing this because for me to be St 4 I had Lymphoma for many years. Please talk to your Drs and have a cancer panel done if you have Sjorgens syndrome.❤️
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3 ReactionsI have had Sjögren’s syndrome for at least 20 years. How did you know you had lymphoma? Did you have symptoms ??
Thank you for sharing, great information! I have always been concerned of lymphoma. What are your symptoms of lymphoma? How do you deal with dry mouth.
Have you had problems with taste
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I started having night sweats and my lymph nodes started swelling in my neck and groin. At the. Same time My GP was looking at my chest X-rays and thought he saw something in my lung. He sent me in for a PET scan. Lungs were clear but my lymph nodes lit up like a Christmas tree. Luckily, it hadn't gotten to my organs yet. 2 yrs of chemo and immunotherapy and I'm all clear for 3 yrs now. I highly recommend talking to your Dr. To reach St4 I had it a long time with no symptoms.
I was shocked when my son shared this with me! To reach St4
Cancer meant that I had for many years with no symptoms. I started having night sweats and my lymph nodes started swelling in my neck and groin. At the same time my GP was flipping through my chest X-rays and thought he saw something in my lung. He sent me in for a PET scan. My lung was clear but my lymph nodes lit up like a Christmas tree. I highly recommend you speak to your Dr. I fight dry mouth all the time. I tried rxs with no luck. I always have ice water and gum and mints. Chewing soft ice really helps me. I had taste issues but they were due to chemo. I wish you good health and I hope this helps❤️
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2 Reactionsyes char8972 it's an oily drop so it seems to lubricate better for me