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Sjogren and bronchiectasis.
Pulmonologist claims Sjogren just causes dry mouth. He keeps treating me with rigorous clearance routine that doesn't work. Claims I am medically non-compliant. Anyone have the same experience?
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If you are unhappy with what you are being told get a second opinion.
I have sjogren and it is more than dry mouth.
Wish you the best.
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1 ReactionI have bronchiectasis that my pulmonologist says is directly related to my Sjogren's. I would suggest that you find a more up-to-date rheumatologist.
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2 ReactionsI have been debating but the specialist are scarce in my area. How is your pulmonologist treating your bronchiectasis?
Second that. Get an up-to-date rheummy.
4 nebulizer treatments a day followed by a flutter valve. That is it. I never cough anything up with or without the flutter.
I have bronchiectasis along with Sjogren’s Disease and also have interstitial lung disease. I have 2 inhalers, one is a steroid.
My rheumatologist recommends an annual lung CT without contrast and breathing tests. I didn’t know I had Sjogren’s so my problems escalated before treatment. It’s better to get ahead of it, so maybe your PCP can order the scan and breathing tests.
Smart Patients is a site that deals mostly with Sjogren’s and everyone’s very helpful and full of information.
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1 ReactionMine is still fairly mild. Initially, I was on a bronchodilator for a week, then no longer needed it. I use my asthma inhaler if I cough a lot. Also, low dose Prednisone. My rheumatologist doesn't treat my bronchiectasis, my pulmonologist does. I misspoke about that. I wish you the best with your health.
I don't have lung envolvement w/ my Sjogen's but I do take IvIg every 3 weeks at an infusion center. It is pretty expensive but Medicare does cover it. (I don't know your age.) At the moment, that is all there is for Sjogren's and it does take awhile. I lost my rheumatologist because of an insurance change so my neurologist is acting as my rheummy. (He has a family member diagnosed w/ Sjogren's so he has a reason to learn.) So I watch the news for any new drug that shows possibilities. The infusion center seems to take any doc who will write a script for IvIg.
What does the infusion do for you? I am on Medicare advantage. so maybe it would cover. I am leery about infusions. I took Plaquenil and was highly allergic, then Methotrexate and stayed sick all the time. Thank you for the response.