Author Topic: Sjogrens and throat swelling?  (Read 3029 times)

KellyG999

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Sjogrens and throat swelling?
« on: May 15, 2011, 07:22:02 PM »
Hi all. I am new to this board. I have been struggling for a year with daily attacks of extremely dry throat (like sand in there) plus swelling of my throat and back of tongue. When this happens I try not to panic but it is very hard. I don't have the blood results showing Sjogrens but nobody knows what else it can be. I also have all over contant aching and pain. I have seen ENT's, allergists, GI and am on my second rheumatologist. They think it is likely sjogren's and i take Salagen. Tried plaquenil but no help after three months. I am strating to think I am crazy and afraid I'll lose my job from going home and calling in sick so often.

I usually hear dryness of mouth and eyes with SS but never swelling and can't swallow or talk. Does this sound familiar to anyone? Thanks, from someone losing hope every day.
42 year old Female: Salagen, Lexapro, pain meds, Restasis,  B-12, Vit D, Omega 3's, Protonix, Allegra, NuMoisyn lozenges, various probiotics
Worst symptom - dry swollen throat episodes - scary!

Jellyb

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Re: Sjogrens and throat swelling?
« Reply #1 on: May 15, 2011, 07:34:54 PM »
Hi Kelly! Welcome!
I am not an expert, and there are a lot of very informed people here that can give you great information.
That being said, i struggled with random throat swelling for years. It turned out it was my parotid glands that were swelling due to the sjogrens but my triggers were certain foods. Artificial sweeteners were particularly bad also.

Since my diagnosis on feb. This year, I have been gluten free and have been on plaquinel and I have not had the throat/ tongue swelling to speak of.
Maybe you are having some reaction to something or things you are eating.

Keep a food diary, that might help. And hopefully someone here can be more helpful. :-)

PS. My labs have always been negative. For everything!
Primary sjogrens, Raynauds.
Magnesium, vitamin C, tumeric, low dose estrogen.

Multiple chemical and food allergies
Gluten free

Joe S.

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Re: Sjogrens and throat swelling?
« Reply #2 on: May 15, 2011, 07:51:11 PM »
Welcome KellyG999. There is a lot of information that you will find on this forum. Does this dryness come on over night or through the day?
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KellyG999

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Re: Sjogrens and throat swelling?
« Reply #3 on: May 15, 2011, 07:54:06 PM »
Thanks for the welcome!

It comes and goes throughout the day, gets worse after eating and when I have to talk at work. Sometimes severe at night before bed...
42 year old Female: Salagen, Lexapro, pain meds, Restasis,  B-12, Vit D, Omega 3's, Protonix, Allegra, NuMoisyn lozenges, various probiotics
Worst symptom - dry swollen throat episodes - scary!

irish

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Re: Sjogrens and throat swelling?
« Reply #4 on: May 16, 2011, 12:14:34 AM »
kelly, Welcome to this site. You need to do a search on salivary glands. There are some in front of and slightly below the ears called the Parotid, one on each side under the chin called the submaxillary and 2 others called the submandibular that are under the chin also. Do a search using "images" in the sentence and you should find some good pictures.

These glands will swell up from time to time. Some people have terrible swelling and others much less. The parotid glands are the ones that get the mumps and they can cause misery for sure. Make sure to suck on lemon drops to help keep the saliva moving. You need saliva to help keep the salivary ducts from plugging up with thick mucus.

Also, use warm packs on the face and neck/throat area and massage these areas gently. This also helps to stimulate the glands to move some saliva through the ducts. These ducts can plug up and get infected and little stones can also form from the chemicals in the saliva.

There is also lymphoid tissue in the throat, base of tongue areas, etc and when a person is having a flare or the sjogrens is being very active many of the white blood cells will migrate to this lymphoid tissue. Our body is trying to kill us off and these white cells think they are helping us but they are really making things worse for us.

You should read a lot of the posts including the older ones on this site and also do a lot of searches on the web. Just know that you can't always believe what you read. Try to search university sites on sjogrens, etc. Good luck. Irish ;D

deeindiana

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Re: Sjogrens and throat swelling?
« Reply #5 on: May 16, 2011, 09:03:37 AM »
Hi Kelly. I'm sorry to welcome you to the SjS club. It sucks...  But this is a great community for information and support.

I was diagnosed with SjS a year ago and have the same problem with mouth dryness, feel like my throat swells, can't swallow, talking is painful. I also get tiny, painful pin-prick bumps on my lips.  It all comes and goes, and it's confusing. Some people talk about flares that last for months and then they get a break as it goes into remission for months. Mine seems to change weekly, or even daily!

A note about Plaquinil: It takes 3-4 months before it even kicks in. And even then it doesn't always feel like it's doing something. It's also a preventative medication that helps suppress inflammation now (and you don't feel it working) that could cause damage in the future. Your rheummy could explain more about it.

Good luck! And welcome!
Deb
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Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
Medications: Atenolol, Dexilant, Zoloft, Zocor, Flaxseed oil, Vit D, Nasonex, Plaquenil
I am my own worst enemy...

KellyG999

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Re: Sjogrens and throat swelling?
« Reply #6 on: May 16, 2011, 05:47:39 PM »
Wow - what great people there are on this site. I truly appreciate the responses to my post. I have felt 100% alone up to this point. Not that I am glad others are suffering - by no means! But to have someone, anyone understand is really comforting. Thank you.
42 year old Female: Salagen, Lexapro, pain meds, Restasis,  B-12, Vit D, Omega 3's, Protonix, Allegra, NuMoisyn lozenges, various probiotics
Worst symptom - dry swollen throat episodes - scary!

Rachel F.

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Re: Sjogrens and throat swelling?
« Reply #7 on: May 18, 2011, 05:05:26 AM »
Just wanted to ask you for an update when you have the time. Keep us informed with how things progress.
Rachel F.
(no dx for me)
Esonophilic esophagitus, sicca syndrome, plaquinel, prednisone, small fiber neuropathy, diagnosed via "hypocomplementemia" in bloodwork. All else negative.