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Scleroderma & Raynaud's UK (SRUK)

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Does anyone suffer from Sjogren's and have problems with taste?

MInerva profile image
4 Replies

The worst time is first thing in the morning, when I can't taste anything. It gradually improves during the day but is still not that good. I really regret not being able to appreciate the taste of the strawberries from our allotment!

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MInerva profile image
MInerva
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4 Replies
Davros profile image
Davros

The taste thing is quite usual with Sjrogens. Saliva is essential in digestion and as we don't produce much it prevents the flavours from breaking down so the taste buds can appreciate it. Additionally, part of the autonomic reflex in eating is that when we see something we like with salivate and this then kicks of other digestive processes also. When we don't salivate much we miss out on this, end up with increased tooth decay and miss out on the initial digestioin of meat proteins which makes eating some food harder. All great fun! I tend to have lots of nutritionally balanced smoothies to offset the problems I have with eating because one time I dropped to 7 stone due to this - at 5'7 that is not a good look.

Jessie122 profile image
Jessie122

Hello Minerva, sorry to hear you are having this problem. I have dry eyes and a very dry mouth with all the problems that go with it. It certainly does take away taste. I also have difficulty with swallowing. I use Biotene Gel and Biotene Mouthwash. They do not help with taste or increase my saliva. However I find that it helps stop the build up of plaque on my teeth and hopefully will help prevent tooth decay.

Linda71 profile image
Linda71

I'm not sure if this will help with taste, but I have begun taking a prescription called Evoxac 30mg for dry mouth and it works great. It is quite expensive, so I only take it twice a day instead of 3 times a day as it was prescribed. It is so nice to be able to carry on a conversation without stopping to wet my mouth. Hope this helps.

LilaJoe profile image
LilaJoe

I also have sjogrens secondary to SS ( fearing it may be the diffuse but don't yet know), and the burning sensations in my mouth plus the dry eyes are an additional difficulty on top of the SS related digestion and skin etc problems

It is weird to have lost all sense of taste in a few months, and it makes eating a very functional experience

Starting with the SS issues of gerd ,on top of an already dry throat ,is also troubling

Do others with both these conditions find pilocarpine helps? I've even heard it brings back taste for some lucky people...and stops that maddening constant thirst in the mouth.

I'm waiting to discuss it with my GP

Anyone else feel horribly rare( the proverbial zebra) having both?!?

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