blready's Status Updates

"Just when you think it’s OK
So a couple of weeks ago I had a CT scan of my lungs. Then came two months of crazy tests. Trying to get my doctor my rheumatologist and my pulmonologist all on the same page.
I was told that I have COPD OK that makes sense I used to smoke. But wait it gets better...I was then told I had something called bronchiectasis. Which has taken me two months to even be able to pronounce the word let alone figure out just what all that entails.
Oh and let’s not forget the most scary part there’s a white spot on my right upper right lung. Which is most likely an RA Nodule. They are going to scan it again in August and likely biopsy it.
Then last but not least I might have something called Alpha 1 lung disease.
So of course not getting any real definitive answers from my doctors- just more tests and waiting for results. i began an exhaustive research on all of these newly diagnosed problems. Something that I have learned to do since being diagnosed in 2007 with rheumatoid arthritis. I am pretty sure I have researched every dissertation, paper, reference. clinical trials & medical website.
Interestingly enough I’ve discovered that sometimes people with Bronchiectasis develop rheumatoid arthritis or other immune problems In their 60s. I on the other hand am part of the 3% who get this disease after having been diagnosed with RA. There is a 10 year study on people such as myself all 68 now 69 of us. Those who were given Rituxan and another drug along with steroids have seen some positive results. There are 24people who quit using these drugs and either dropped out of the trials with complications or died. The remaining 44 Have increased the mortality and are managing the bronchiectasis.
Lung nodules are common with with rheumatoid arthritis. As long as they don’t grow they are just there. They will probably be taking CT scans every six months and watching the growth or the size of the nodule. I knew this about RA - one of my vital organs would begin to experience the never ending attack from RA nodules.
Alpha 1 Is a genetic lung make up. It is handed down from generation to generation it requires two abnormal genes one from each parent. Very little is known about this disease just in the past 15 years has Research begun. You can find out if you have it with a blood test. If you are positive you will want to have your children and grandchildren tested.
I know this is a lot of information and quite frankly boggles my mind. Last Friday my rheumatologist called and said that I needed to stop taking my Humira that TNF blockers were detrimental to the Bronchiectasis. He then suggested Orencia - (which I pointed out I had already used for several years both via injection and IV.)
So now he has suggested Rituxan. I was put on Arava last year,
Which he said we will continue because it is good for shrinking nodules.
I have no idea when I’m going to begin the Rituxan. I am still waiting for the results from the breathing tests six times in total. I did find out that I tested negative for Alpha 1-which was a great relief.
I told the nurse today on the phone that I was going to get on my motorcycle and leave town. Until all 3 of my doctors could get on the same page. She replied that would probably be OK as long as she could get a hold of me by phone.
After year and a half dealing with Covid and now two months of wondering how long I have left to live I have decided that I am going to take a break -and take what quite possibly might be my last long solo trip on my motorcycle. My son is going to meet me Fourth of July. I should be in Washington State by then and we will ride home together to Texas. Hopefully by then I will begin Rituxan, get another CT scan and a biopsy of that nodule.
I welcome any and all information that any of you have regarding Rituxan Bronchiectasis and lung nodules. I’m leaving tomorrow and look forward to all your comments on my journey thank you everyone for sharing in mine.

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