Hello from beautiful Greece . I am 24 years old suffering from dry mouth 2 years now and it affects my life more than you know it (i reached a point where i had no clue what's going on and though i am HIV positive (did the test i am not) , i lost so much confidence because of it . Running out of saliva is so so so frustrating .
I did blood tests for AI including sjorgens and they all came back negative. My ETN now what's me to do a LIP biopsy but i am really scared about it and i am not sure .I feel like it will come back negative.
Except my dry mouth another symptom i seem to have is bloated stomach right after every meal , i am not sure if that's because there is not enough saliva or if it's connected at all but i visited a gastroenterologist and he said i am in perfect health.
Do you guys think the lip biopsy is a must ? What i mean is if i am SJ positive will i need to take medication to prevent future symptoms ?
Other than that i want to ask about Ubiquinol ,xylimelts ,Evening Primrose and the saliwell device !
I read a lot of people that got helped with Ubiquinol . My dry mouth except in the morning (desert like mornings) is tolerated but it's just frustrating and annoying specially in long talks, drinks or coffee (remember i am 24 ) .
Do you need to speak with a doctor about Ubiquinol or you can just take it ? I saw you guys take 100mg twice a day . How long does it take to see if there is a increase in saliva production or not ?
About Evening Primrose ,did it help someone ? How long did it took and in what doses?
About Xymimelts, is there any other name around this i can't seem to find it in my country :( . Would love to try it.
About the saliwell device, i read some posts back from 2016 and people had positive reviews. Does any of you still use it ? Is it working ?
Thanks everyone who took the time to read my thread, i will appreciate every reply more than you know it !
WELCOME, Franky!
I know just how awful dry mouth is! I take pilocarpine (RX) and it makes some saliva, which is great.
Negative results for Sjogren's is very common. At this point it may be wiser to treat the symptoms, regardless of the diagnosis.
I haven't had a lip biopsy, but others have and will comment, I'm sure.
Those of us with Immune Disorders often have problems with their gastrointestinal system, like the bloating that you are experiencing.
In the US Ubiquinol is what we call Over the Counter, we can buy it without a prescription.
I have taken it for quite a while. It is effective for several conditions and parts of the body, and it can't hurt.
Most important you need an RX for pilocarpine. My rheumatologist prescribes it.
Welcome, again, Franky!
Regards, Elaine
Hello and welcome. I can't answer all your questions, however just to say I haven't yet had the lip biopsy though I'm prettty sure I've got Sjogrens. Rheumatologist didn't think I had it, and blood work was negative, however I have numerous symptoms. I am putting off the biopsy because I am not keen on taking the sort of medication that will be prescribed if I have a positive result. However I may get desperate and change my mind - the fatigue is my worst symptom and has had quite a big impact on my life.
Re. Xylimelts, you can get them online. Don't know about the other things you ask about. I always have chewing gum in my mouth, that helps a lot, you don't need to be chewing it all the time (in fact someone here said that chewing too much could give you problems with your jaw). Saline spray (such as Ayr spray) helps with dry nose at night.
You will find lots of help on this forum, people are very kind. :)