Sticky Blood-Hughes Syndrome Support
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Must see an ENT ASAP

Hi from across the pond! I've been having trouble swallowing for past month! I thought my allergies or Sjogrens? Or combination of both! Now it's to a point I can't even swallow liquids! The food stops in my throat and sometimes if I do eat soft foods it comes bak up thru my nose! I guess I waited too long! Now it's quite crucial I go! Yesterday I took Benedryl cuz my throat was slowly closing and wheezing started! The Benedryl worked TG! The pain is excruciating and just don't go away even with strong Pain meds! If I can't get a doc appt today I must go to hospital! I read up on Sjogrens and it says this can happen along with Lymphoma! I'm sure it must be allergic reaction to a drug I've been taking all along! I had to change pharmacy due to new insurance and they gave me a different generic and am thinking it may be that! My allergy doc says I'm allergic to the tiny amount of preservatives they put in some meds! I must ask is Allergies an autoimmune thing? Just thought I'd update you! Thx for ur input as always Kerstin! The others too! I just wish anyone with Sjogrens cud put me at ease! I also looked up cancer of esophagus! I have all they symptoms! They include throat pain, can't swallow, ear pain at its maximum! I'm just very tired and if I have any major issues it'll have to be left to The Good Lord cuz I'm done with any treatments! Just a place to let loose my emotions! My troubles with swallowing started last June and now this! Why didn't they look further at that time??? I hope it's noting but some allergic reaction to some medicine I have been taking and developed an allergy to! That wud be pretty simple compared to what I'm thinking! Thx all for ur responses last post!!! Godspeed

11 Replies

Hi Deb,

I have just answered your other question so I did not read this until just now.

I wish I could come over and help you get the right Doctor. Now I can only say: "take care and hope you will find help very very soon!"

Please tell us how it goes for you!

Kerstin from over the pond


Hi Sweet Kerstin! Thx for your unabounding support! Ur the only one to answer me anymore! It's ok I'm complicated! I have an appointment tomorrow with ENT/Ear, Nose, & Throat doc! I can't swallow again and my throat swells up and can't breathe! I take Benedryl every 4 hours ! I have bad allergies and they say bad allergy season! Think it's combo of Sjogrens and allergic to something I'm doing or taking everyday! I'm in excruciating pain with my ears and throat! No pain meds help! I'm just tired of it all and wud love to be put out of my mystery! Everyday it's something else! I can't get a break at all! I'm just so tired of pain! Even tho I've had it all my life and use to it, it gets tiring! So sorry I'm just not well and real tired of fighting for everything! Have a good night Kerstin! You're a real sweatheart!!! GODSPEED

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Deb- I think I read where you are on warfarin...correct? I, too was on warafin when I was first diagnosed with LA. I had bad allergic reactions to this medicine. Well, not the active medicine in warafin but the binders that are used in that pill. I had bad bouts of IBS, shortness of breath and felt like swelling of throat. They couldn't get my INR to be consistent. I was all over the board. They had to switch me to Coumadin immediately. After that I had no issues with any of these symptoms like warafin. Generic drugs are made in many pharma companies across world. The binders are always different depending on what company they come from. Coumadin is strictly made in one or two companies and do not stray from different binders. Many med companies have been trying to get FDA to overturn ruling that serious health conditions be treated strictly with name brand drugs because of the sensitive nature and seriousness of conditions that require stable results every time. Unfortunately, this has not been approved yet. Sorry so long of answer, but this might be something to look into being you have so many conditions about you. I hope this helps and please do get well. 😊



Thought you might find this interesting...

There Situations That Require Special Consideration Before Choosing a Generic?

Some drugs -- known as NTI (narrow therapeutic index) drugs -- may need special consideration if you are thinking of using the generic version. NTI drugs have a narrow margin between the amount that is safe and effective and the amount that is toxic.

These generic drugs include:

warfarin (a blood thinner)

digoxin (treats certain heart conditions)

theophylline (treats asthma, COPD, and other lung diseases)

While the FDA has not had a policy restricting the use of NTI generics, some states have laws that do. In those states, if generics are used, precautions and additional monitoring are required.

The list of restricted NTI drugs varies from state to state. The FDA does not have a list of recognized NTI drugs. The FDA is revising its policy to identify drugs that should be included on such a list and to specify whether additional precautions are needed when generics are substituted for such drugs.

Your doctor should tell you if you are taking an NTI drug and what type of monitoring you need.


This was in a webmd article about NTI drugs and warafin is one of these drugs.



Hi Debb

I answer you too, it's just that us Admins are all volunteers and we have careers and families too and can't always get back to members as quickly as we would like.

Who is managing your APS? Are you on anticoagulation?

Best wishes.



Speculating that it could be related to medicine allergy. It is possible that you have reflux at night while sleeping and you don't know it (as a side issue). Is it painful to swallow? Hope all works out. Do let us know.


Do Let us know how things are progressing. I am trying to sort out chronology of your posts, so I'm not sure if this reply is timely, but if your throat is swelling shut it is emergency room time!

I too have multiple drug allergies which my allergist says is likely an allergy to some common stabilizer or preservative found in generic injectibles. And yes, having to constantly remind docs of this is dicey. I'm pretty sure their mental response is: " how is it that this housewife thinks she knows more about pharmaceuticals then me? She must be a nut case." So, I always reference my allergist's name, offer his phone number and recount the results of my allergy tests.

please let us know how things are going. i do hope you can drive to Nashville. I'm a Vandy grad so i know that city well - it certainly deserves its moniker as " Music City," -- though many people dont realize that all genres of music are here, Country, jazz, classical. its like everyone who lives there has the discerning ear. Make sure you drive by Centennial Park for a view of their Parthanon replica. we walked over there during a Greek history class to actually witness a fascinating Parthanon factoid. The roof when viewed from the side would appear to your eye to be bowed in the middle were it actually straight due to a compensation our brain makes. so if you get down to the level of the top step and look down the base wall which supports the horizontal columns you will see the base is actually bowed so as to appear straight. Fascinating that the Ancient Greeks knew this!

I usually only check posts from my email. i will check back through the day to see if you have any updates. You're in my prayers.


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Gina this will be our 3rd time in Nashville! We love it there! We went to centennial park and saw the Parthenon too! Amazing place! Thanks for the advice! Will keep in touch!


How you doing, Debb? Your post is pretty terrifying. I sure hope you have gotten some help by now. I wish I could be helpful, but all I can say is, poor baby! Thinking of you. Mikki


Thx Everyone for you're input! I'll update y'all in a post! Things are crazy, but I'm hoping all will b ok soon!


Yes Mikki I'm a big baby girl! I never will grow up! I love being around CHILDREN cuz they just love u for you! They never judge you! Although I lost my son and can NEVER be a grandma I have many granddaughters no grandsons all girls!!! They go crazy when they c me! It's funny Mikki how u called me baby! I'm tough and strong and have a rediculous tolerance to pain! My orthopedic doc said not good cuz u stay home till ur almost dead!!! Lol... I've done that at least 7 times in my life! Lol... He told me not to do that! My sis and I are so very different in looks and personality, but unfortunately we r genetically the same in more ways than we care to admit!!! Bleed y'all!!!


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