Hi I'm new to the group. I was diagnosed with Sjogren's almost 3 months ago. Though once I learned more about it I think I may have had it for 3-5 years. One of the symtoms that is really bothering me, besides fatigue, is I have a terrible metallic taste. I read that zinc can get rid of the taste. I see my doctor about it next week. Has anyone else had the terrible metallic taste and if so have you tried zinc?
Welcome to the group, but sorry that we all have to “meet” because of Sjögren’s.
I have never experienced a metallic taste in my mouth. It often feels as if I can’t taste at all. My tongue gets rough and painful instead - unable to tolerate anything acidic or spicy.
Good luck with the doctor and let us know how you make out.
Thanks for the welcome Liz!
The doc says the mettalic taste can happen from dry mouth and I'm taking ceveline which is working on keeping my mouth not dry, but I still have the metallic taste.
Well I'll let everyone know when I find out if the zinc works.
I get that from time to time. It comes out of nowhere but thankfully it goes away before long. No idea what triggers it.
I have suspected SS and I have lost pretty much all sense of taste and smell
I also have issues with dry mouth. My dentist said it is the cause of most of my cavities and advised me to use Biotene. I tried it and it was wonderful. But, it contains Xylitol and I found out the hard way I can't do any type of sugar sugar substitute due to having Intercystial Cystitis. It's a thinning of the lining of the bladder and it allows acid in and it's very painful. It's like a cross between cramps from a stomach virus and being punched in the gut at the same time. When I explained that to my previous MD along with the fact I had to urinate 13 times in a 12 hour period, she knew what it was and advised a wonderful OTC drug called Prelief to take before eating to reduce acid. My gynecologist gave me a list of foods that I should avoid and then add back one at a time to figure out which ones cause the flare. Thankfully, it is one condition I can control thru diet and 6 less pills a day. I just started a diet that I thought was going to be wonderful because it's organic and no processed foods, but by the end of day 3 I had a horrible migraine and was vomiting..TMI,sorry. So today I had to miss work, but I stumbled across post about SS and migraines and it sounded so much like my current issue I almost cried. I'm not alone or crazy. I got off track...back to the diet. I stopped it and went back to my usual diet. I took 2 Excedrin Migraine, ate a Snickers bar and drank a Coke...it sounds odd, but it's the combination that does the trick..most of the time. I'm still going to try to eat more organic foods and fewer processed foods, but still allow some junk. Not the best diet, I know, but so many "healthy" foods cause problems. I can't eat soy, no fake sugar, and I have to limit the foods like beans, sweet potatoes, broccoli, mustard, milk, there's a bunch for the IC. But this post is about dry mouth....I basically don't leave home without a bottle of water. I avoid sodas..except for nausea or a migraine. I do drink k a lot of coffee and some tea, but I've always got water handy. They also say chew gum, but I have TMJ and gum isn't always an option and with dry mouth a mint can be painful. Yep, it's fun fun all the time. But honestly, I can't complain, I'm basically healthy, it could be worse. Most the time I don't think about the pain or being tired, it's normal. I'm also not a perky smiley person and I get a lot of flack for it. I'm not always in a bad mood, I'm not always angry or mean. I actually have a good sense of humor, I do tend to be sarcastic and I'm very tender hearted. And I got off on another tangent...sorry.
We are all so different with SS, one diet definitely does not fit all. I've said it a million times but my rheumy was the first to say avoid the "Big Three" of inflammation but beyond that, its trial and error to figure out what works for you.
And, this is the perfect place to rant! We all get it.
What are the BIG Three of inflammation? Thanks!
They are sugar, wheat and dairy. That's not to say you should go gluten free if you don't have issues that call for that. It mostly means to stay away from heavily processed foods. Different diets work differently for people so I don't suggest anything beyond that without talking it over with your doc, but to a large extent these three are well known to contribute to inflammation.