Sjogren and bronchiectasis.

Posted by vickied @vickied, Aug 31 4:39am

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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I get IV Ig infusions every 3 weeks. For me it’s mainly for neuropathy and balance problems. It’s helping keep them under control. I have Medicare and Blue Shield.
Sjogren’s affects so many parts of the body, and I seem to have many of them! Really important to get on medication and get tested early to prevent further damage, especially to lungs in your case.

REPLY
Profile picture for vickied @vickied

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.

Jump to this post

My husband says I seem "stablized". I have a lot going on with me and could have a lot more pain than I do. It is hard to give the IvIg credit for all that but it is the only thing I am taking. (Except for Tomoxofen for breast cancer.) I also have blood cancer but are just watching it. I too have Medicare Advantage so I would at least explore it.

REPLY
Profile picture for marina88 @marina88

I get IV Ig infusions every 3 weeks. For me it’s mainly for neuropathy and balance problems. It’s helping keep them under control. I have Medicare and Blue Shield.
Sjogren’s affects so many parts of the body, and I seem to have many of them! Really important to get on medication and get tested early to prevent further damage, especially to lungs in your case.

Jump to this post

Me too. I am very grateful to be under their "watchful eye". And I am determined to ride my horse.

REPLY
Profile picture for suetex @suetex

My husband says I seem "stablized". I have a lot going on with me and could have a lot more pain than I do. It is hard to give the IvIg credit for all that but it is the only thing I am taking. (Except for Tomoxofen for breast cancer.) I also have blood cancer but are just watching it. I too have Medicare Advantage so I would at least explore it.

Jump to this post

Thank you for sharing. You seem to have more than your share of health concerns. I'm so sorry. I pray you find healing.

REPLY
Profile picture for vickied @vickied

Thank you for sharing. You seem to have more than your share of health concerns. I'm so sorry. I pray you find healing.

Jump to this post

Thank you and you as well.

REPLY

I recommend The Sjögren’s Book, edited by Daniel J. Wallace, MD. There are 51 chapters written by a variety of doctors. Sjögren’s can effect so much of your body you will be amazed. There are medications out there to help with dry mouth, too. Good luck!

REPLY
Profile picture for minnesota10 @minnesota10

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.

Jump to this post

Hello What do you mean?

REPLY
Profile picture for lisav22 @lisav22

I recommend The Sjögren’s Book, edited by Daniel J. Wallace, MD. There are 51 chapters written by a variety of doctors. Sjögren’s can effect so much of your body you will be amazed. There are medications out there to help with dry mouth, too. Good luck!

Jump to this post

thank you

REPLY
Profile picture for abuamir @abuamir

Hello What do you mean?

Jump to this post

Hello, and welcome to Mayo Connect, this particular discussion was started by members who have a lung condition called Bronchiectasis and an additional diagnosis of Sjogrens - autoimmune disorders aften exist alongside our lung disease.
If you have a new diagnosis of Sjogrens, but not bronchiectasis, you may want to join this discussion:
https://connect.mayoclinic.org/discussion/sjogrens/
If you are interested in learning more about the condition, you can start here:
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Do you have other autoimmune conditionas as well?

REPLY
Profile picture for abuamir @abuamir

Hello What do you mean?

Jump to this post

See a different doctor Talk with your family doctor, friend and see who they are going with. Tell your doctor you don’t feel like this person is giving you the best care, and tell them why. You might need to go a different clinic.
Research.. check out different clinic on line. Like Mayo, Cleveland clinic and so on. Also google/Scholar, do your homework. The more you know the more you will feel better about what is going on.
My family doctor is great. He has helped me a lot.
Wish you the best.

REPLY
Please sign in or register to post a reply.