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    Question about RA and taste and smell issues??
    singingbear posted:
    Right around the same time that I started experiencing my first joint stiffness and swelling I also started noticing that my sense of taste and smell was out of wack. As it was June I didn't give it too much thought at first. I chalked it up to summer allergies and expected it to go away in a few days. Here I am over six months later and there are still many things that just don't smell or taste right to me. Some of my favorite foods are no longer desirable to me. Strawberries have been a lifelong favorite of mine and now I shy away because I know they just don't taste good anymore. I have mentioned it to the first doctor I saw reguarding my knee pain. He checked my nose thoat and ears and said everything looked good. I also mentioned it at my first Rheumy appt and that was the end of that discussion. I go back to the Rheumy on Thursday and plan to bring it up again as it has greatly effected my ability to enjoy my meals (probably not the worse thing for me but.....). I just find it odd that this all started around the same time. I have not had any problems with dry mouth or eyes, however, I always seem to have a crust in my nose instead of it running. (Yuck, but if you can't share that info here where can you share it). Nothing seems to help it. I have also started getting short lived sinus headaches. It is like a sharp pain around my nose and eyes that only last a few minutes. I was just wondering if anyone else has experienced these same problems and what helped?
    acer455 responded:
    Hi singingbear just want to know if you got your smell and taste back im having the same issues and its fustrating!
    xperky responded:
    Hi. I was wondering if you are running a slight fever, as can happen with RA. A fever can really affect taste and smell. It also has given me a crusty nose in the past. Yucky, yes! Have you tried saline nasal mist?

    It's interesting that you brought this up. For a couple years I've had a very sensitive sense of smell along with frequently thinking I smell something a little like smoke, but not really, just weird...
    singingbear replied to xperky's response:
    No, I have not gotten my sense of taste back completely. There are still a hand full of foods that have an off taste (oranges, banana, cheese, chicken among a few). I have started eating some of the foods I was staying away from and it is either not as bad or I have become use to the different taste. Cottage cheese is still a big NO!
    My problems with crusty nose and sinus headaches seems to have passed for now. I have mentioned it to various doctors and they never seem concerned about it. I plan to see a new PCP soon. Maybe he can tell me something.
    I was running a very slight fever most of last winter before I had an actual RA diagnosis but have not been since starting medications. I did try saline nasal mist but noticed little difference.
    singingbear replied to xperky's response:
    I am now wondering if my issues with taste are from the RA in a round about way. I have also started getting tonsil stones in the last year since my RA symptoms started. I wonder if the RA could be causing swelling of the tonsils which in turn causes the tonsil stones and results in a distorted sense of taste. Hmmm something to ask the doc about.
    xperky replied to singingbear's response:
    Is it possible to get rheumatoid nodules in the tonsils?
    mike201 responded:
    Hi Singingbear

    I have severe RA and since it started two years ago my taste sense is also out of whack. I just live with it. I know Pednisone will do this but also RA. If you can get off Prednisone things may improve a lot. Mike
    singingbear replied to mike201's response:
    Thanks Mike201 for your response. Sadly the Pred connection doesn't work for me. Taste problems started before I was ever put on Pred and have now been off it since August. Wish that was the answer. I guess you could say I am learning to live with it since I don't notice it as much anymore. I just avoid the foods that really taste bad to me and the others I have learned to tolerate. Doesn't make it any less frustrating though.
    singingbear replied to xperky's response:
    That is a good question. I have seen where RA can cause swelling of lymph nodes but I have not seen anything yet about nodules. I will have to do some futher research on that.
    CynBunny replied to singingbear's response:
    Oh my gosh! I can't believe I found this post, I am so glad!

    I have had lupus and fibromyalgia for about 15 years and seemed to mostly be maintaining the same level of symptoms... until 2 years ago this summer. Then all hell seemed to break loose. I became even more fatigued than usual, my mouth and eyes and skin became so dry. It was awful, in the mornings when I woke up I literally had to peel my tongue off the roof of my mouth because of the desert dryness in my mouth. Then I got weird swelling at the base of my neck and in my armpits and the sides of my face (parotid glands) and my tongue became so swollen that it has teeth marks on it all the time because it presses against them. My voice is hoarse all the time. Then I got weird nodules between the joints of my fingers, then my toes. So, go to Rheumatologist. I go to family doc. I go to endocrinologist. New diagnosis' galore. Hashimoto's, Raynaud's, Rheumatoid Arthritis. Sjogren's.
    Now, fast forward two years... my mouth is always dry, but now it actually burns in there like a neuropathy type burning pain. My tongue is so swollen that I have not been able to see my throat for over two years. I have almost no sense of taste now, I can taste sweet and salty, and anything with pepper, even black pepper, just burns my mouth so much. I brush my teeth all the time, and rinse with non alcohol mouthwash but I have a terrible taste in my mouth, sometimes it is almost metallic tasting. So, a few weeks ago I cough up this ... this... THING. Nasty little ball that smelled like rotten eggs that rolled in death. I immediately think I must have some weird poop throat cancer, but thanks to the internet I soon found out it was a tonsil stone. I had never heard of tonsil stones before. I tried to look at my throat and so did my husband but we can't see it. I have no idea if there are more so I just keep gargling and trying to feel back there with my finger. I have gotten several more out, even from the roof of my mouth above the tonsils, and under the tongue in the throat.
    I am thoroughly disgusted. I'm on methotrexate, and steroids, and plaquenil and nothing is putting me in remission or lowering the swelling. These tonsil stones are the last straw. It's bad enough that I am so sick, at least I shouldn't have to stink. : (
    Does RA cause burning mouth syndrome? Have you found a solution to your taste symptoms? Are the tonsil stones caused by the RA? Thank you so much for your post.

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