Lupus Support Group

hi there i also get this but they havent did a swallowing test yet or they think im just making it up but i know im not crazy. i drink more fluids than i eat because the food get stuck or i really have to make a effort to swallow the food its not all the time but its enough to know i should not be going through this. ive been like this for at least 3 yrs and nobody can tell me why. i love to laugh an sometimes my jaws get really tired and start to spasms sometimes it does the same thing when im talking. i have tmj and i have 4 screws in my jaw but i never had trouble swallowing until i got sick with the ra they say overlap of lupus and other diaganosis but no one can give me a definite answer why i have trouble swallowing. if you find anything out please let me know. sometimes i have trouble with my own saliva yuck!

It is also a sign of myositis related to Lupus and that is most likely what it is. I have weakness in the chewing muscles and a little bit with the swallowing as well. Have you weaned off steroids recently? Maybe it has been becoming more noticable due to that.

Hi Melissa,

i'm sorry i don't know much about MG, but every time i flare, i feel my throat close up, and i can't eat, swallow even my face and jaw can't seem to move as much, my meds get stopped for a while cause i can't take them, and im on liquid food if that, usually i go on for days just on IV fluids and meds.....i know when i'm going to flare if my throat feels like it's closing up...

Hope this helps, hope you feel better soonxx

My experience with trouble swallowing is what led to my diagnosis. I had been having "minor" problems for a few years, but I would just gulp water and force down whatever was getting stuck. This past Feb., that stopped working. I began getting food stuck in my esophagus, and it would stay there up to 15 mins. Because I've had issues with positive ANA in the past and had recently been to a neurologist for other things that were happening, they tested my ANA. It came back 1:1260 Centromere, which is seen a lot in CREST or scleroderma. A lot of times, dysphagia is a presenting complaint that leads to diagnosis. My PCP sent me to a gastro and rheum. The rheum. did bloodwork and I had 3 positive ANA patterns with the highest of the two (both 1:680) as homogenous and speckled. I had 1:320 centromere, so he thought it was lupus ... the next visit he told me polymiositis (I'm still unsure) ... He said 25-40% of people with lupus can have swallowing issues. My gastro did an endocsope and barium swallow test. Nothing abnormal was found. I kept putting off the manometry because of how unpleasant I've heard it is, but finally had it done. I got the results yesterday. It showed that I have a motility problem called diffuse esophageal spasm, and 20% of the time, my entire esophagus paralyses. I thought it was only happening at the bottom. I am now carrying nitroglycerin that I'm supposed to use in an acute attack. The gastro says they aren't sure why that happens but it has something to do with nerve damage. I will ask more at my next rheum and PCP appts. next week. I'm sorry that this is so long but I've been in the middle of all these tests the past few months. (P.S. I've never been on steroids, but I am on Plaquenil.)

i go through spells where it feels like my throat is swollen... scares the hell out of me...

Wow...I guess I shouldnt freak out that I have Myasthenia gravis yet. Its not like food gets stuck in my throat though or it closes (which I actually experience when I get a panic attack) its like I cant actually swallow or have to force myself to swallow. Sometimes half way down I start to feel like I cant swallow.

Allison..You may be on to something. I am tapering down on the pred by .5 mg but Im only down from 10 to 9.5. It has seemed to happen now much more then before I started the tapering (again). Hmmm. Now it is happening almost every time I eat. Thanks for the info on myositis. Ill have to look into this. Just what I need...more issues...Its comforting to know though that Im not the only one who cant laugh/smile alot or eat without problems. Thanks for everyones impute...
xoxoxo

I would ask your doc maybe your not ready to wean below 10 mg right now till the Methotrexate kicks in better. It is an annoying symptom. I do have to push a little more to swallow. I have issues with the swollen throat too but it hurts more than feels weak. I have read they even start Cytoxen or other drugs similar for polymyositis if it doesn't get controlled with other meds. But first and foremost they use steroids.

I agree...the feeling that my throat is closing scares the hell out of me. I also have really bad acid reflux for days at a time. It is a pain to eat and sometimes I have no desire to eat, but on the other side know I have to with all the meds.

Well, whatever is causing it, I hope you can get some answers, because it is scary to say the least. I've been feeling very depressed this week with all the things going on with my body that I can't control. I have really felt like crap the past 2 days and am so sick and tired of "pretending" I have it all together at work. I was so excited, because I thought the Plaq was kicking in last week. I know a lot of people are much worse off than I am, but I'm having a pity party for the time being. I guess I haven't been as "accepting" as I thought I had. Thanks for letting me vent here.

Harley,
Even while on the plaquenil you can have good and bad days so try not to get discouraged. Sometimes it can just be the weather change that causes us a few down days or your period. I have been really down too that my pred. taper is not going well AGAIN..Im worried since I have APS that Im going to drop dead any day from a heart attack or stroke. I am totally stressing myself out..All triggered because Im not feeling well again. What you are feeling is normal. Thats what we are here for. to vent to. We all understand.....thank goodness we have eachother.