Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes

Hi, are those the eye drops made from your own serum. They draw your book, spin and use that to make your eye drops. I was desperate and tried it for 4 months and nothing changed. I’m in Georgia now from Massachusetts and they never heard of it here. It’s been around a few years now. I hope it works for you. Insurance didn’t cover mine and I paid 400 dollars.

Dry eyes I use xiidra from eye doctor
Mouth I use a medication from my dentist

I’m in Australia so mine is free. I hope it works as it really affects life when your eyes are inflamed , bloodshot and painful. Red Cross here do it all anc I get a years supply, Sorry it didn’t work for you and now I’m a bit worried .

Don’t be, it does work for many. I wanted to do it because it was my own blood and a natural thing to use in my eyes. I’ve had tubes put in and that helps some. I use so many drops for dry eyes and sometimes a steroid mix prescription because it can get so bad.
I use prescription toothpaste from my dentist and a dry mouth type mouth wash. Honestly, I’d be happy with a diagnosis. Doctors just treat the problem and don’t seem to care about why you have it first.
I have thyroid issues as well, I’m hypo. Recently I have huge bulges of water bags under my eyes so of course I go and see my eye doc. He said I think thyroid related. I call Endo doc. I also have flushed dry cheeks going on as well. She decides to check tsh and cortisol only. My tsh was elevated so med change but no concern with my symptoms. Cortisol was normal. So I guess it’s all okay.

Yes, there is a medical connection between Sjorgens and Lymphoma. I would suggest to anyone with Sjorgens ask their Dr to run a cancer panel just to be safe. I am also on Plaquenil, mouth washes, eye drops, and I always have a Stanley with me with ice water. It's a daily battle but I just try to laugh my way through it!❣️

Hi. I’m also going through the dryness and loss of taste. When I started taking Pilocarpine, I got so dizzy and fell in the bathroom. But I restarted taking them again because I am just so dry everywhere. I also decided to take it again because I found out that I had dysautonomia with vertigo and syncope. I take it 3X a day now and I am not as dry now. There is Cevelimine. It has less side effects. I also freeze fruits and just enjoy them. I keep slices of limes and lemons to take them wherever I go. They help me. In the summer, I always have ice chips.
That soft area at the bottom by your jaw is where I was told to rub softly and the area below the cheekbones. It stimulates that saliva production.
The nausea could be the reaction you have with taking so much of whatever sweeteners that are in those gums, lozenges, and mints.
I also had lost my taste and it’s been difficult. I tend to over season the food I cooked. I also have these cravings. I just eat for the nutrients and try to be as healthy as I can.
Hope you find something that helps. I just want to say that I can relate to what you’re going through. Take care.

I so appreciate your response. 💕The loss of taste and dryness, has taken a lot of joy out of my life. I hardly cook anymore, and I always enjoyed cooking and eating.
Thankful to my husband that has taken over the cooking, he is amazing! I agree that the nausea is from all the logenzers and gum. I have ordered all sugar free gum and candy. Seems to help
I am a Canadian citizen and cannot purchase cevelimine, not sold in Canada. Was not approved😕
Thank you again for sharing your story, it means a lot to mean. Have felt alone on this journey, espcially the loss of taste
Take care and keep fighting💕lorrie

Hi, Lorrie. I still cook for my daughter and family. I just get a kick out of making something good that they enjoy even though I cannot. I have to have my daughter to taste it and tell me what else the dish needs. That seems to work out.
I’m so happy to hear that I helped someone. I’m so limited in my abilities! Thank you. You made my day. Take care.

Yes, I can relate. I lost my taste/smell in December of 2022 and now it’s February 2025! It is depressing not to taste and smell, I will agree with that. I am in Mexico for the winter and had a chiropractic visit here and I had told him about my loss of taste/smell. He adjusted my neck in a way that I have never been adjusted before. It opened something up and I was draining into my throat the whole next day and I could even taste my coffee a bit the next morning and a carrot at lunch. Today, I noticed not so much of a taste of my coffee, but I’m having another adjustment on Saturday and hope he can do more for me. I’ll try just about anything at this point! Look into Stellate Ganglion Block injections. They’re suppose to help with getting taste/smell back. I’ve had 7 and it’s brought back some where I have a more salty, sweet or bitter taste on my tongue. It’s not back yet, but I think it’s coming. Try to be patient, I know it sucks!

@suetex if you don't mind me asking are you on IvIg for sjogren's only or do you have another autoimmune disorder as well?