Brensupri and related C Scans

Posted by blm1007blm1007 @blm1007blm1007, Apr 7 12:47pm

For those having started and taking Brinsupri.

Have you had a C Scan since being on the Brinsupri?
What did the C Scan show....?
Did the C Scan show improvement since being on the Brinsupri?
Has your PFT, Pulmonary Function Test, improved or the same since being on the Brinsupri?
In general, are the test giving you and the doctors some good reports and thoughts about the time on Brinsupri?

Did you have an MAC or other infection when you started the Brinsupri?
Were you on watchful waiting when you started the Brinsupri?
Were you on antibiotics when you started taking the Brinsupri?

What are your thoughts so far with being on Brinsupri?
Barbara

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smc17 | @smc17 | Apr 8 7:01am

Excellent questions. If you have PA psuedanomas aeruginosa , how does brinsupri help ?

maryjill | @maryjill | Apr 8 8:07am

After 3 months taking Brinsupri I ended up in the hospital with pneumonia , infections in my teeth and gums and neutropenia with a WBC of 0.8. 3 days of not taking Brinsupri and my WBC was 3.1. I had a bone marrow biopsy which didn’t show any blood cancers etc. Some drs. think it could have been caused by the Brinsupri, some don’t think so.

irenea8 | @irenea8 | Apr 8 8:54am

In reply to @smc17 "Excellent questions. If you have PA psuedanomas aeruginosa , how does brinsupri help ?" + (show)

@smc17
I think it depends on your Pseudo levels. If your Pseudo is at a lower level and you feel ok or you have it under control without active infection then the Brinsupri may help with the overall inflammation that BE produces. If your Pseudomonas is producing active or chronic infection that is more pronounced then my experience is that it does not help and you are better off treating the infection first and then try Brinsupri later on.

smc17 | @smc17 | Apr 8 9:41pm

Thank you for your thoughts. Im tired of side effects. I believe its too late to treat the PA . Aerugenosa psuedanoma. I never understood how dangerous it was . My doctors never told me anything about this bacterium. I assumed it was another slow moving one. I was wrong.

smc17 | @smc17 | Apr 9 5:45am

In reply to @maryjill "After 3 months taking Brinsupri I ended up in the hospital with pneumonia , infections in..." + (show)

@maryjill thank you for your information. I have recently fought PA with an IV medication for like 2 weeks after being told my lower pnuemonia had spread to both lungs after being on doxyclycline that didn't work. My white cell count went down below normal . My ID doctor wanted me to try brinsupri . I was not wanting to try anything new without having my white count come back within normal limits. Two many side effects I see that I dont want to experience and not know whether or what may cause those side effects. Ive opted for holding off on brinsupri at this time. Dealing with this psuedanoma aerugenosa is enough on my body. I will keep you posted on my cell counts and any other info I obtain.

maryjill | @maryjill | Apr 9 6:20am

Thank you for your reply. I think you’re wise to hold off on the Brinsupri until you get the PA under control. Has your Dr. not tried another antibiotic?

smc17 | @smc17 | Apr 11 4:38pm

I had been on cipro 7 days. Cidefner, doxycycline and one more in the prior months before my fever hit 102.8 chills shaking. Fatigued. Was not working so it had to be active PA so then the IV midline had to done for 2 week course. In the last 3 days if IV I got RSV. MY JOURNEY BEGINS AGAIN