Hello fellow sufferers,
It's been quite awhile since I've posted anything real. I've been so busy just trying to keep my head above water. This time of year is so frenetic!
How many people have developed chronic pulmonary issues from their Sjogrens? I've been diagnosed with asthma but I think I've known for a long time now that it's more than that.
I've been asking my medical doc for referral to pulmonologist but she hasn't done it yet. Not sure she believes everything I'm telling her. She did order pulmonary function studies which I failed and they showed I had some kind of obstructive pulmonary issue.
It was interesting because they used albuterol during the testing which didn't improve my test results at all.
I had asked for a pulmonary CT scan but she wouldn't order it until she got the results of my PFT. I think she was surprised how off it was. If she would have just listened to me. But of course, no one takes me all that seriously. She did order a CT and I'm scheduled for Jan 16.
My Rheum retired in October and the earliest I can get into a new Rheumatologist is Feb 14! And it's Valentines Day! I hope I can get a new treatment option.
I've been coughing for what feels like months, and I feel such fatigue. This is my third round of prednisone since October. All my chest X rays just show bronchitis. I feel like it is chronic and might never go away.
I had 8 grandkids, 6 adults, and 2 dogs extra for Christmas at my house. It was successful but I felt so miserable and mentally and physically exhausted. Also I was taking 800 of ibuprofen at least twice per day for muscle/ joint pain. I know this is from my Sjogrens.
I think this is due to my Sjogrens but I'm having trouble getting my doctors attention. Maybe after the CT scan? I'm not a betting person, but I'm pretty sure it's NOT going to be normal. I just want some help.
Anybody have any advice?
Happy New Year to all. May it be a better year!
Kathy
I have breathing issues myself. When I exhert myself I'm badly out of breath. I had pulmonary tests and heart tests and they were all fine. I'm now convinced I have a muscle issue like MS or Myesthenia Gravis. Sorry I have terrible spelling. Finding a good neurologist in my community is difficult.
Sixty,
That is interesting. I feel short of breath just going up the stairs and I used to be a runner!
I'm wondering why your tests came back negative? This is such a troubling illness. It's tricky to figure out. Hope you get the help you need. I looked up previous posts on pulmonary issues and Sjogrens and found them enlightening. I think I'm pushing for the right things.
Happy New year!
Kathy
Kathy57, I do not know why your doctor is being so stubborn about referring you to pulmonology. I have had one for at least 15 years or more. I had a lot of issues at the beginning but those were taken care of as form of noninfectious TB treated for one year with 8 pills a day.
I have a lot of thick mucus much of the time but it has gotten worse and I was taken off my IVIG for Myasthenia Gravis in May of 2022. I am of opinion that some of my issues are slowly coming back but so far not as b ad as before. Time will tell.
I am of the opinion that your doctor was surprised by your poor results on breathing test so she is doing the cat scan to see if you have an infection that she could treat. If it was me I would let her treat the infection if there is one but tell her you still want a referral to pulmonary and sooner rather than later. I think she doesn't want to admit that she could have missed something and be embarrassed if the pulmonary found an infection if you went prior to cat scan. Doctors have egos that we have to deal with at times.
If this doctor continues to drag her heels I would find another of my doctors to get the referral from if possible. I would wonder why she isn't being more attentive to your needs and also wonder what kind of a doctor she is...what specialty. If she isn't doing you much good in general you might have to find someone to replace her. I say this with tongue in cheek as I moved 2 1/2 years ago and can't believe the trouble I am having finding some of my specialists. We have to tread softly and carry a big stick in order to get medical care at times...sad to say. Good luck and keep us updated. meirish
Hi Irish!!
Thanks for your good advice. The last time I saw her, she told me she would refer me to a pulmonologist.
So I'm feeling better about her, anyway
Kathy
Dear Sjogren's Angels,
My Immunologist started our appointments with a Screening in pulmonology. This was about 5 years ago. I thought I passed the testing with flying colors, but I already had Small Airway Obstruction.
Last year I had my first bout of bacterial pneumonia. They sent me home with yet another spirometer and the green pickle thing that you blow into. I didn't practice much in the beginning and even less as time went by.
Lately I've notice a change in the product of my lungs, and last week I went to the ER because I thought I had a kidney infection which turned out to be COVID! A CT Scan showed Scattered subcentimeter pulmonary nodules left greater than right. Moderate right posterior atelectasis and/or consolidation with prominent peribronchial thickening. Mild consolidation left lower lobe with adjacent
nodularity.
Now I have a chronic productive cough, due to the phlegm in my lungs.
I know I should use my devices regularly!
I've read that up to 25% of those with my form of Immune Disorder (CVID) develop lung issues. This is getting old.
But so am I.
Elaine
Kathy, so glad your doc is referring yo too pulmonary.
Caroline, Really sorry to hear that you have covid and lung issues.
Our age is not in our favor and our inability to get exercise and walk around etc., doesn't help us either. Then add any autoimmune disease or chronic illness and our lung function gets worse.
I wear a mask whenever I go our as there has been a lot of flu around the area and it has been quite bad. Actually people have been more ill with the flu than with the covid. My sone and family were on a cruise last week and their 19 year old son got ill. Taken to infirmary and they swabbed him and he had influenza A so he spent a few days in quarantine and is home and can't go back to work til tomorrow as he works in a nursing home.
Hope all is well with both of you folks otherwise. meirish