Costochondritis and lung problems

My wife started having serious problems with her lungs about 10 years ago and she started to cough for days and she also had asthma.They tested her with prednisone and antibiotics and she would get better for a few weeks and then start all over again. She seen a pulmonologist who was finding out from blood tests that she had a rare lung disease that most doctors had never heard of it. The patients were being diagnosed with different types of lung problems from emphysema, chronic bronchitis and were not getting the treatments that would extend lives of people who were dying and in many cases could live with a fairly normal life as long as they were receiving the medication they needed. Ask your doctor to test you for Alpha -1 Antitripson disease. If you have this disease it is treated with a weekly injection that a nurse comes to your home and gives you this treatment once a week. It is covered by Medicare and Medicaid and there are drug treatment programs that will pay for the medication. If your doctor has not heard about it , we can get you the free blood test kits .
If you have not been tested for Alpha-1 Antitrypson disease. You need to get it done ASAP. Please let me know how I can help you.

Yes...Alpha 1 Anti-trypsin is a mysterious attack of the lungs that is frequently overlooked. I inherited from my Mom...she passed away at age 90, had serious oxygen and circulation issues. I am getting close to my 3 year Double Lung Transplant anniversary!
Ask your Dr and get checked!

Live in southern Utah were or who to contact for alpha-1 test i have stage four copd and 26 percent of lung

Hi all,
I thought you might be interested in these related discussions:
- Alpha-1 Antitrypsin Deficiency - just been diagnosed https://connect.mayoclinic.org/discussion/alpha-1-antitrypsin-deficiency-just-been-diagnosed/
- COPD: Is it genetic? alpha-1 antitrypsin deficiency https://connect.mayoclinic.org/discussion/copd-is-it-genetic/
- Costochondritis https://connect.mayoclinic.org/discussion/costochondritis-1/

@al4terry, I hope you'll take part in the discussions about alpha-1 antitrypsin. Your wife's experience will be valuable for other members.
@jmb73, how often are you nebulizing now?
@karenoc, congrats on the 3-year anniversary of the double-lung transplant. Wow. I recommend you also follow the Transplants group: https://connect.mayoclinic.org/group/transplants/ I bet you would have a great story to add to this discussion
- Lung Transplant Post-op? would like to hear positive stories https://connect.mayoclinic.org/discussion/lung-transplant-post-op-would-like-to-hear-positive-stories/

I will call my lung doc on Monday and see if he can test me for it. I looked up the symptoms and I have some of them. When I get a cold it always sends me to the hospital. COVID 19 has kept me away from people and I am very afraid of going to the hospital at this time. My father died of lung issues but he smoked. I have never smoked but I have mild COPD from second hand smoke. I really appreciate your information and I will let you know what the doctor says. Thank you.

I am nebulizing about 3 times a week and taking my inhaler about once a week. I am on Breo 200 which has prednisone in it. I take it first thing in the morning and usually I can breathe better by 10 or so. I have been told by the pharmacist not to take any breathing treatments for 4 hours after taking Breo 200 . I did once and I was hyper. I will check with my lung doc on Monday and see what they say. Thank you.

How did your appointment go, @jmb73? What did the doc say?

I got a telephone appointment with the PA and she said it was probably allergies and to take Allegra with my Montelukast. I reminded her that I have Sjogrens and don't want to get drier. I have been tested for allergies by an immunologist and had no reaction to the first set of injections so he immediately repeated some of them. I had an anaphalactic reaction and he never said what caused it. It was scary. He did want me on drops but I refused. I got a report and it showed some allergies but nothing severe. He did diagnose me with a low IgA and IgM and no immunity to pneumonia even though I have had both shots. He did give me another pneumonia shot. I don't know if any of this could be connected to Alpha-1. I am still having the pain and breathing problems but not every day. I have to call the PA in a month and I will keep taking both allergy drugs. I don't seem to have all the symptoms of Alpha-1- that are listed but if I will talk to her about being tested. Thank you for keeping in touch.

I have pain at the middle of my upper chest since last 2 years. I went to a lot of doctors they all told me that it's costochondritis, they prescribed me medicines, physiotherapy and some exercise as well, I have already done all my test like ECG, X-Ray, CT-Scan and several blood tests which are all fine, but the pain is the same as it was 2 years ago.

Hi @khanm
Speaking merely from experience - I suffered 3 years with Costochondral chondritis. I was seen by many healthcare providers including Physical therapist, acupuncturist, chiropractors, Reiki specialists, and pain clinics which one clinic included injections every single week for an entire year. I was seen by several surgeons. Finally ended up successfully pain free by going through the Mayo Clinic Pain Clinic and surgery where the doctors removed my sternal manubrium joint and have been completely pain free since.

Mine stemmed from an injury I sustained in a car accident where I sustained A paired over fracture through the sternum manubrium joint. Can you share alittle more about the source of pain or suspected cause?

Curious,
Dawn