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Scleroderma & Raynaud's UK (SRUK)
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Loss of taste

I have sjogrens type dryness and have totally lost senses of taste and smell

Some suggestion is that this could be throid related,l hope so in case it can return

In find it very frustrating and restricting,food is just a cardboard like texture ,going to restaurants or watching TV with food programs everywhere is torture!.

Has anyone had this sense return!

It gets quite wearing to be unable to taste at all.

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Lilajoe sooo sorry ๐Ÿ˜

๐ŸŒฟ๐ŸŒน๐ŸŒฟ๐ŸŒน๐ŸŒฟ๐ŸŒน๐ŸŒฟ๐ŸŒน

๐Ÿฆ‹๐Ÿ’—๐Ÿฆ‹๐Ÿ’—๐Ÿฆ‹๐Ÿ’—๐Ÿฆ‹๐Ÿ’—

๐Ÿค—๐Ÿค—๐Ÿ’•๐Ÿ’•๐Ÿ˜˜๐Ÿ˜˜

๐Ÿ˜Š๐ŸŒธ EvaJo

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Thank you! It is the pits and a bit surreal still, it's been getting worse for two years and is now totally gone except saltiness / sweetness.I am on a restricted diet ( Aip) to try and heal it,so still hoping!

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I have this as part of my Sjรถgrenโ€™s. Fortunately, like many other aspects of this stuff, eventually Iโ€™ve got used to my taste buds being a very blunt instrument. I can still imagine what things taste like if I could properly taste them and this seems to work for me - enough to enjoy tv cookery programmes anyway! x

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Yes,l still have the expectation of taste!

Do you have pilocarpine as well as topical things( biotene and salivix)- I've just started this and it seems to make a difference to comfort in my mouth even tho no more taste yet.

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I havenโ€™t tried Pilocarpine myself - although it was recommended to me by the Sjรถgrenโ€™s expert I saw last year.

My doctor (a Scleroderma man) put me off saying about side effects etc etc and my BP is high and I have autonomic dysfunction - apparently it can make this worse. I have friends who swear by it though. In my case my mouth isnโ€™t that dry and the loss of taste is caused by neuropathy. So I guess Pilocarpine wouldnโ€™t help?

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That's good your mouth isn't too dry, I am finding it ok at the moment,and relieves the dryness well.

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Try gelclair,it's topical not systemic,and a revelation!

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I too have sjogrens and have no taste except for some sweet and salty stuff. It started about 10 years ago and now nothing. I just try to remember what things taste like and try to enjoy my food. Iโ€™m quite sure chemotherapy did a lot of damage as well.

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Hi, I don't know if this may help but ............. my Grandma lost the majority of her taste buds "due to old age" as the GP so usefully put it! However she retained the ability to taste sweetness. So we put together recipes that built on this - like the very simple "gammon and pineapple" through to adding fruit, honey, etc to stews and salads. I think she may have also used sweet pickles.

This was a long time ago (before celebrity chefs). I think if you were to look into Middle Eastern/Arabic type cuisine you will find fruit is used in many of their meals - we always use fruit in casseroles and spiced dishes and are always being asked if we have spent time in the Middle East.

Also for a short time I was on a very restricted diet. One of the things I was allowed was pineapple and I found that I could use it as a "vegetable" by baking slices in a lightly oiled, covered dish for about 30 mins at 160-180C and serving it with meat and "chips". It also works well with rice.

I also created my own hot sweet "pickle" to eat with meat - lightly oil a small baking dish (with lid), place in it chopped or sliced onions, dried apricots, prunes, chopped pear and sultanas. It needs a little fluid (just to cover the bottom of the dish) - if you use brandy it is quite spicy. Wine or water work well. You could try fruit juice for more sweetness. Cover the dish and cook for 30-45min at 160-180C. I'm sure it would work with other fruits.

I hope this helps, N xx

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Very much,thank you ,that's a great idea I'll try

๐Ÿ˜Š

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