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Sjogrens Topics => Living With Sjogren's => Topic started by: Sweetcheex76 on February 07, 2019, 10:35:08 AM

Title: Saliva lessening and choking on food. Any advice appreciated.
Post by: Sweetcheex76 on February 07, 2019, 10:35:08 AM
As the Sjogrens progresses, my saliva production gets less and less. If I have a flare where it effects my saliva, I notice my saliva levels never go back to pre-flare levels after the flare goes away. Lately, it's been kind of scary as food gets lodged in my throat. Dry items like crackers are a given but things like rice and lettuce stick in my throat and I can't get them down. I always have a beverage near
as it seems things won't go down unless I drink it down. One time I was driving home from the grocery store in the car, was hungry, so I opened some Chex, and ate a few not realizing I finished the drink I had with me. I pulled over as it was totally lodged in my throat and I couldn't breath. It was terrifying. I take Evoxac twice a day. I took it 3 times a day for a while but the only thing it did was make my face really sweaty.

Has anyone else gotten to the point of having so little saliva that they can't swallow food? If so, has anything helped you? I'm scared I'm going to choke to death if no one is around to help me. I also wonder if saliva production can stop completely and then what do you do? Thank you.
Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: irish on February 07, 2019, 10:01:27 PM
I am sorry that you are having such problems. The best thing you can do is to leave some foods out of your diet. It will give you less fear at meal time and provide you with less traumatic swallowing issues.

I have always had problems with lettuce cause it hides in all kinds of places and can keep me coughing for hours. Anything that is small and chewy like rice can be left out of the diet.  If you have trouble with a food don't do it again. Keep your foods limited to soft as in mashed potatoes, baked potatoes with lots of butter/sour cream, meat cut in fine pieces or even ground on your bad days. I had to do the ground meats for about 3 weeks when I had my teeth pulled as I also have myasthenia gravis and swallowing is affected off and on. The ground meats such as beef, pork, ham are very good with gravy or au jus. Also soft buns with sloppy joes is good, meat loaf, etc. It is not a hard diet to follow. Cooked Cauliflower/broccoli carrots, etc, creamed corn on potatoes, etc.

Puddings, peach sause, cold cereal softened in milk or almond milk, cooked cereal. There are a lot of casseroles that can be made that can be soft such as tator tots hot dish with ground meat  and soft vegetables. The good thing is we have so many frozen foods to choose from. Baked fish is really good also.

The other thing is learning to swallow. I had to go to swallowing rehab basically...WE also tend to eat very fast in this country and don't chew our food well enough so right off the bat the chewing is important. Also, when you drink fluids use a straw and you will find that the fluid is aimed more to the back of the throat and this helps the swallowing. The other thing that really works well is when you go to swallow turning your head a little bit so that you are looking to the side. This opens up the throat and helps the food to go down really well.

It is amazing how one can even feel the throat space open up and how the food goes down better. This trick is a must when a person has trouble swallowing pills. Also, using apple sauce if you need food with your pills when it isn't meal time. It is much less filling and fattening than puddings and doesn't keep your belly full of dairy products/milk.

If you are having more and more problems with swallowing and maybe other issues it seems like it is time for you to talk with your internist and see if he can find a way to treat you medically.. Are you taking Plaquneil??? Many people find that they have increased saliva using this med. Have you seen a neurologist to see if you are having any problems with your nerves that control swallowing or any other nerve issues. Have you had a swallowing study? You internist or family doctor could maybe order this too. People with Sjogrens can have neuropathy in many areas so if you are choking it present it could be a combination of dryness and neurological issues.

Take time to regroup and be proactive with a health issue and you won't feel so discouraged. It is common for Sjogrens to just drive us crazy with all these health issues that keep occurring. Many time with patience and knowledge and the help of doctors we can get over them or at least have better control and we'll feel better. Let us know how you come out. Good luck. irish
Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: Sweetcheex76 on February 08, 2019, 11:54:46 AM
Thanks, Irish. You've provided lots of great tips. Some I've already tried but I'm definitely going to incorporate more of your ideas into my diet.
Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: SunshineDaydream on February 08, 2019, 03:31:23 PM
Great suggestions from irish.

Another thing to try is changing saliva meds to see if a different one works better. Salagen instead of Evocax, generic instead of name brand, or name brand instead of generic.
Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: ohiolady on February 08, 2019, 08:23:27 PM
I could not swallow food until I took three Evoxac a day. I have been on this dosage for 12 years. After a few years the sweating stopped. For me, I preferred the sweating over not being able to swallow Nothing takes the place of our saliva. Irish gave excellent suggestions. Eating dry foods with something moist always help.

Hope it gets better for you.

Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: Bucky on February 10, 2019, 08:17:37 PM
I always have to have some sort of liquid to drink whenever I am eating anything - it's the only way I can swallow the food.

When I am in the grocery store and they have samples of food, I have to pass it by as I know if I ate something (with nothing to wash it down), I would be coughing and coughing.

I agree with many of the things Irish posted.  I've found since my Sjogren's dx that I have to slow down and eat smaller bites and chew my food well before swallowing.

Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: Sooki on February 17, 2019, 10:05:47 AM
Yes, I have that problem too.  I never eat limp lettuce (spring mix, etc.). I had a leaf stick just past the tonsils, scary.   Romaine seems to be okay, especially with lots of dressing!  My whole body is better with wet foods, sauces on everything. Pasta seems to be okay.   I like to have some bananas at hand.  Whenever food or pills won't go down, a chunk of banana followed by some water usually pushes it down.

Taking ubiquinol has increased my saliva in general, but it still comes and goes.
Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: warmwaters on February 19, 2019, 09:54:42 PM
My family calls me the saucy wench! Because food that include liquid are a lot easer to swallow - pastas with sauces, stews (though I need to cut the meat up before I eat it), soups... you get the idea. Also - soft foods, not hard crunchy foods. Cooked carrots, not raw. Sweet potatoes! Yum.

Title: Re: Saliva lessening and choking on food. Any advice appreciated.
Post by: SjoGirl on February 20, 2019, 09:27:27 AM
Here's a tip about Evoxac. I could not stand the sweating when taking 30 mg twice a day but was also having issues swallowing. I worked with my rheumy and a local compounding pharmacy to have the doses cut to 15 mg each. I take only one twice a day because it's all my small body can handle and it's been a life changer.

So, it may be that you are taking too much at one time and need to parse out your doses. I'm not a doc so can't say that will work for sure but it may be worth considering.

I also found that taking Imuran seemed to help because it reduces inflammation, enabling my body to work the way it should. As Joe has suggested in the past, also be sure to sip drinks, gulping dries the mouth out more.