Author Topic: inflammation in my lungs  (Read 1590 times)


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inflammation in my lungs
« on: December 12, 2014, 03:38:45 AM »
I was just diagnosed with serious inflammation in my lungs caused be primary sjogrens.  The doctor wants to put me on 30 prednisone for 2 months then taper off depending on how the lungs are doing.  He said I would also have to be on an antibiotic to make sure I dont get pnemonia caused be higher doses of predisone.  Has anyone had this problem or treatment?  Thanks, Drygirl


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Re: inflammation in my lungs
« Reply #1 on: December 12, 2014, 07:12:36 AM »
Are you working with a pulmunologist? Hopefully someone comes along with more knowledge about the lung diseases that come with sjs!
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
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Re: inflammation in my lungs
« Reply #2 on: December 12, 2014, 01:12:58 PM »
I so hate to hear that you have pulmonary inflammation. I have been struggling with that for over 2 years. It started with exertional shortness of breath then really progressed to limiting  my everyday activities. My doc tried the steroids…the high doses did help me initially over the first year but after the taper I would get worse again. I was already on azathioprine. We changed to cellcept. That did nothing….I am now on rituxan infusions, azathioprine and low dose predinisone and finally my inflammation is under control. I can shower without feeling exhausted! yea! I can manage my day on a small scale now and very slowly. I am just thankful for a patient persistent doctor.

  I am happy to talk to you anytime and wishing you the very best. BTW There are many rare lung disease clinics now across the U.S. Sjogrens lung disease has been added to these clinics. Finally we have hope.  :)   CK


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Re: inflammation in my lungs
« Reply #3 on: December 12, 2014, 02:52:49 PM »
I have pulmonary hypertension. It just happend BAM and I've had it for 2+ mos so far. Doctors have no idea the cause of this. One thinks Sjogrens does play a part in it. They are still trying to "figure me out" and I am on a lung treatment TYVASCO 4 times a day at home.  I'm hoping these treatments take care of it.

Sjogrens sure can cause a lot of problems.  :'(