Brinsupri experience after 3+ months

@kathyjjb My experience is similar to yours. I have been on Brinsupri seven months. I noticed improvement at 1-2 months, then the next “shift” at 3-4, then another at six months. I’ve read both here and another forum that improvement can continue beyond six months up to a year, since it’s slow acting. I still don’t quite have the gusto I did a year ago this time. I’m hopeful with more patience to get it all back. Jeanne

@heidi0974 Hi Jeanne, yes, definitely similar. I'm getting very close to where I was 2 years ago, but I also take herbal supplements. I went to the Eastern Medicine Clinic in Scottsdale and had an herbal consult for my low energy and got on supplements. I now only take the Sol Nutrition GOGO and it has really helped. Now I take 3 in the morning and another 1 just before noon, and it maintains my energy. If I miss a day, I feel it. Thank you for your response, the 3–4-month shift has been nice! Maybe in 6 months, I can quit the supplements or at least just take 1-2/day. Happy 4th of July! Kathy

@kathyjjb Kathy, very interesting information. I’ve decided to give it a full year and assess then. I’ve been gauging my improvement in percentages. I’m 75% from where I was last summer when I was high energy and felt great. I was diagnosed in October and started Brinsupri in early December.So I am hoping for one more “burst”! I tire more easily than I used to but can easily do my daily routine. I’m an otherwise healthy 75 year old. Maybe I’m expecting too much?😉Wishing you much good luck.Jeanne

Hi Heidi, and Kathy, your posts have been very helpful. I’m curious are you both on the 25 mg? I’ve just started my journey. It’s been about 2 1/2 months. I started at 25 mg now I’m going to 10 mg to see if the few side effects I'm having will get a little better. The lack of energy you both speak of is really hard to deal with..
I definitely have a hard time with lack of energy.
Thank you for your post
Thank you for your post

@atkins10001 Yes, I'm on the 25 mg. Last year, I was on daily inhaled steroids and had severe chronic fatigue. Every day, I felt hollow as if the wind could blow me away. A deep fatigue right down to the bones. That's when I went to this Chinese clinic. The owner has an MD and PhD in western/Chinese medicine. I saw her partner and he instructed me to take 4 capsules (SOL Nutrition GOGO) in early morning and 4 before noon (11:45 am). Can't have food/drink other than water 30 minutes before and after. It took a while for them to start working, but now my dose is only 4 per day. I know it's the supplements giving me energy since every time I stop, I can feel the fatigue creep in. They are truly amazing. Feeling very good. The GOGO got my energy back and the Montelukast/Brinsupri got me off of steroid inhalants and I believe is also contributing to eliminating the fatigue. I hope the 10 mg helps and eliminates the side effects. Good luck! Kathy

@atkins10001 I’ve been on the 25 mg Brinsupri. Other than more dry skin, specifically on my legs, I’ve no side effects.And that is manageable with lotion daily or cortisone cream occasionally. I’m ok to stay on the 25 mg,and see if anything else occurs by my follow up next fall.Everyone has to do what’s best for them.And yes that fatigue is what prompted me to address this with my PCP to begin with in September!That and a dry cough that was worsening. She got the ball rolling as I usually have no complaints at my routine annual exam.I am eternally grateful to her for taking it so seriously.The fatigue isn’t totally resolved, but I realize it may never be . I’m just adjusting and adapting to a “ new normal” and still enjoying my family, friends and life.Jeanne

@kathyjjb I want to say upfront that the brinsupri 25mg. has almost completely changed my ability to socialize without coughing or having to cough up mucus in public. During the last 10 months though, I have had at least 3 viruses (probably caught from my grandkids), that led to exacerbations and the need to go on 10 days of antibiotics . I would feel just as sick as I used to prior to brinsupri with less mucus. but would recover quicker with the antibiotics. My ct scan has stayed the same(no improvement), but I did have it taken in the middle of an exacerbation. Still doing airway clearance but have added The Vest (thumper) this summer to see if it can improve my ct scans. April17 th was my last round of antibiotics. So this is the longest I have gone without an exacerbation or Upper respiratory infection. I’m having a hard time getting a sputum sample for monthly lab. Still coming up with candidiasis regularly, I’m going to ask my pulmonologist is I can do anything about this. All in all , life seems better.

@crepass That's good news that you now have gone the longest without infection. My last exasperation which led to an infection was over 4 months ago. I did have a mild flare last month, but I increased my nebulizing to 3/day and I was better in a week-which was shocking. So, knock on wood-so far so good. I hope it continues.