Sjogrens Syndrome and sinus drainage

Posted by sbtheplumber1 @sbtheplumber1, Dec 13 12:32pm

I’ve had Sjögren’s for years. Dry eyes, nose, mouth! I’m trying to find out if anyone else has had issues with non stop drainage in the throat. I have bulging neck disc as well. I can’t wear a cpap which I need badly. I sleep in a recliner thanks to a failed lumbar fusion April 2023 . Setting up I still choke on the drainage they say it’s not the deviated septum , I’m starting allergy shots next week but taking sinus meds doesn’t help it. Now I can be walking and look down and it’s like a bucket dumped in my throat and I start choking. I also have an Arachnoid cyst on my brain but I was told it has no effect on it causing this.

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Profile picture for animallover25 @animallover25

Yes, I am the same as you. I have CVID, Common Variable Immune Deficiency, so I see an immunologist. I do infusions to myself weekly (subcutaneous injections). Basically, my antibodies are on a permanent vacay! I am putting other people's antibodies into my body with the infusions/protection against the flu, covid, pneumonia, etc.. in the medicine for the infusion.

Have you seen an ENT Dr. yet? They should order a CT scan and see what your sinuses look like? I have been numerous times to the ENT Dr. Only certain ENT Dr's do surgery, not all ENT Dr's do surgery or want to do surgery on you. I had recent surgery in 2023- sinus surgery-outpatient, basically I had blockages in my sinus cavities, so they went in and cleared it all out. There's also a "balloon" type procedure that is in office and I had that done too. It helped tremendously, I feel so much better after both procedures. If you haven't seen one, I would encourage you to go see one and request for a CT scan to be done, if you haven't had one done on your sinuses lately.
Do you do the netti pot or Navage? I do this daily and it helps a lot. I get numerous sinus infections, ear infections and upper respiratory infections, that is the CVID. I use to get anywhere from 6-8 in 1 year. I was sick most of the time, on antibiotics or steroids, going to the Dr's. I was miserable. Use saline solution to help with your dry nose, I use that. I also use flonase too. I have found I am allergic to many different things outside, grass, trees, mold, pollen, dust, etc... It helps me to wear a mask when I am outdoors and in big places with lots of people I wear it inside as well too. I take Zyrtec every night and have for many years.
I have dry eyes, dry mouth and I thought I might have Sjorjen's. Went to Rheumatoid Dr and she tested me and she said no, I don't have that. I also have shortness of breath, asthma, 2 lung nodules (tiny), bronchiestasis-scarring on the lungs, coughing asthma, sore throat, difficulty swallowing, drainage.
I have done allergy shots- 3 different rounds- when I was young, when I was in my 20's, when I was in my 40's. I never really noticed a huge difference with allergy shots, my allergies have always been bad to deal with. I hope you have better luck that I did. They are expensive, so I gave up on allergy shots. I have moved on to a Functional Medicine Dr., I have some fatigue that I don't understand why I have it. The lady I go to is wonderful, she did extensive testing on me- with blood work. She is finding I am lacking in B vitamins and need additional supplements. I have memory issues as well, so she is giving me a supplement for my brain issues. Seeing a Functional Medicine Dr is more costly, however I am seeing a lot of benefit from it. It may be something you might want to explore in the future. Sometimes insurance will pay some on it and other times they won't pay on it, depends on what it is, I have found with insurance. Do you use a netti pot or Navage? If you don't, I would highly recommend getting one of these and using it, it does really help you feel better. Hope you feel better- I am on my 2nd steroid and 2nd antibiotic, as I am not feeling well right now. Saw the ENT Dr. today and she ordered a CT scan and she is doing testing on my phlegm to make sure nothing else is going on.

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@animallover25 Thank you for the info ! I do have an ENT I’ve had the ballon done, I use a netti pot ( not used as often as I should). I’ve had so many X-rays, CT’s and MRI’s I should have one of my sinuses . I get an MRI of my brain cyst every few years. I just went thru allergy testing and was supposed to start the shots Wednesday but missed the memo that I thought was only for the test that I had to stop the metoprolol for my high blood pressure to find out I have to be off of it for 3-5 years while doing the injections. So I’m waiting to see if my heart doctor will allow me to stop.

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Profile picture for animallover25 @animallover25

Yes, I am the same as you. I have CVID, Common Variable Immune Deficiency, so I see an immunologist. I do infusions to myself weekly (subcutaneous injections). Basically, my antibodies are on a permanent vacay! I am putting other people's antibodies into my body with the infusions/protection against the flu, covid, pneumonia, etc.. in the medicine for the infusion.

Have you seen an ENT Dr. yet? They should order a CT scan and see what your sinuses look like? I have been numerous times to the ENT Dr. Only certain ENT Dr's do surgery, not all ENT Dr's do surgery or want to do surgery on you. I had recent surgery in 2023- sinus surgery-outpatient, basically I had blockages in my sinus cavities, so they went in and cleared it all out. There's also a "balloon" type procedure that is in office and I had that done too. It helped tremendously, I feel so much better after both procedures. If you haven't seen one, I would encourage you to go see one and request for a CT scan to be done, if you haven't had one done on your sinuses lately.
Do you do the netti pot or Navage? I do this daily and it helps a lot. I get numerous sinus infections, ear infections and upper respiratory infections, that is the CVID. I use to get anywhere from 6-8 in 1 year. I was sick most of the time, on antibiotics or steroids, going to the Dr's. I was miserable. Use saline solution to help with your dry nose, I use that. I also use flonase too. I have found I am allergic to many different things outside, grass, trees, mold, pollen, dust, etc... It helps me to wear a mask when I am outdoors and in big places with lots of people I wear it inside as well too. I take Zyrtec every night and have for many years.
I have dry eyes, dry mouth and I thought I might have Sjorjen's. Went to Rheumatoid Dr and she tested me and she said no, I don't have that. I also have shortness of breath, asthma, 2 lung nodules (tiny), bronchiestasis-scarring on the lungs, coughing asthma, sore throat, difficulty swallowing, drainage.
I have done allergy shots- 3 different rounds- when I was young, when I was in my 20's, when I was in my 40's. I never really noticed a huge difference with allergy shots, my allergies have always been bad to deal with. I hope you have better luck that I did. They are expensive, so I gave up on allergy shots. I have moved on to a Functional Medicine Dr., I have some fatigue that I don't understand why I have it. The lady I go to is wonderful, she did extensive testing on me- with blood work. She is finding I am lacking in B vitamins and need additional supplements. I have memory issues as well, so she is giving me a supplement for my brain issues. Seeing a Functional Medicine Dr is more costly, however I am seeing a lot of benefit from it. It may be something you might want to explore in the future. Sometimes insurance will pay some on it and other times they won't pay on it, depends on what it is, I have found with insurance. Do you use a netti pot or Navage? If you don't, I would highly recommend getting one of these and using it, it does really help you feel better. Hope you feel better- I am on my 2nd steroid and 2nd antibiotic, as I am not feeling well right now. Saw the ENT Dr. today and she ordered a CT scan and she is doing testing on my phlegm to make sure nothing else is going on.

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@animallover25
Thank you for your post. I think you had some great input for sbtheplumber1.
I could relate to so much that you said. I got sick after chemotherapy 20 years ago and was eventually diagnosed with CIPN. Chemo Induced Peripheral Neuropathy. It’s been a whirlwind since then and lots of doctors. I was also diagnosed with CVID. However, now my levels are just borderline low.
My main problem is moderate to severe chronic pain since the chemo and other symptoms from peripheral neuropathy. I’m on pain management. But with multiple diagnoses, as I’m sure you know, things can get pretty crazy. Thank you again for your post.

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Profile picture for kathan55 @kathan55

I haven’t been diagnosed with Sjogren’s, but a positive SSA indicates it. I do have dry eye. I also have a lot of postnasal drip and trouble swallowing. The area under my jaw is swollen. I was told my G.I. would be the best person to see and have an endoscopy done. I couldn’t tolerate CPAP so I had an Inspire device implanted. My specialist said he thinks the swelling under my jaw is scar tissue from the inspire implant. The procedure was surgical and was a lot more complicated than I thought. But now that I have the hang of it and know that the doctors office can program it, it’s a lot easier to deal with. I would suggest, however, asking your doctor a lot of questions if you decide to try Inspire. I’ll be praying for you.

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@kathan55
Thank you for your feedback. And best of luck to you. I wrote a comment in response to animallover25’s post because I thought there was a lot of good info there. It certainly helped me a lot!

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