Brinsupri follow-up

@charisscurry 10mg

@blm1007blm1007 Deep down, I know that you are right. I wish I was more comfortable to set up something like a Go Fund Me for myself in terms of the financial problem. I know this is going to sound juvenile, but I find so much embarrassment when thinking about setting something like that up for myself. However, I do know that I need to go to NJH at some point because there has still not been a single doctor that has been able to definitively tell me WHY I have this condition, just that I DO. I know this is very common for the non-cystic fibrosis bronchiectasis community, but given that I am so young, it is frustrating that they cannot even attribute it to wear and tear on my lungs as a result of aging, or some other common cause. I do know that I carry a variant of the cystic fibrosis gene (so I am a carrier, but do not have it), and I wonder if that could be a reason as to why I have presented so many respiratory problems, but even in getting those results back, they still told me it was such a rare variant and was not connected to any disease causing symptoms, that this was unlikely.

I have had several conversations with the staff at my school and they have been very accommodating and are aware of my situation. I actually did go home to see my Pulmonologist on Thursday and got a new chest CT and was assessed by him. Whatever I had must have been viral because after finishing an antibiotic and still experiencing symptoms, my chest CT did not show any abnormal bacterial growth (aside from the normal excess mucus expected in the chest CT of a bronchiectasis patient). I am getting a referral to the pulmonology center here at Northwestern so I have a more convenient place to get looked at while I am living here.

I am still taking my Brinsupri daily, and my pulmonologist does not seem to think that my sudden health disparities are necessarily correlated to the medicine, but are just happening coincidentally. I am on a steroid now for my excessive wheezing and am hoping to see a difference made in that regard soon (has anyone experienced increased or new wheezing after taking Brinsupri)? Aside from this recent illness, I have not noticed any other severe side effects (aside from occasional nausea and shakiness if I take it without food), but can not say for sure if I have noticed a positive difference either. I will continue to update this forum as my journey continues and would love to continue hearing how the medication is affecting the rest of you.

Hearing positive things about the medication is keeping me hopeful. Thank you for your, and everyone else’s, kind words. I am very happy and feel very fortunate to have found this group.

@sdugan001 Good to hear from you and good you are doing and giving thought to all you mentioned.
Regarding: "there has still not been a single doctor that has been able to definitively tell me WHY I have this condition, just that I DO." If you are speaking of the BE, Bronchiectasis, we all wish we knew why we developed Bronchiectasis. That is the 10,000,000.00 dollar question.
For me, in my case, I believe it was an accumulation of things in life that brought on the BE. As far as having the infection, I attribute it to having 3 different pneumonias in previous years, gardening (peat moss with bacteria), cleaning out bird houses and breathing in dust/bird bacteria, blowing and cleaning up dry leaves without knowing I was probably breathing in bacteria after the leaves sat there for several months and bacteria formed on them and in the soil that I was obviously too close to and not wearing a mask and multiple times of being under unrelenting stress that lasted for months and years and a depressed immune system. I was under a great deal of stress just before having the symptoms that something was going on with my system. Also I grew up breathing in second hand smoke, my Mom smoked...who knows... but it all possibly added up in my case. Another factor could be having to go back to a new school year and the classroom smelled of chemicals after a total remodel to the classroom, therefore breathing it all in. I was 79 when all this problem with inflammation and BE begun, otherwise for me, I had not had a chronic illness until then/now.
Go Funding: If that is the 'only' way to go to NJH, please don't totally put that as ....I couldn't do that. It is your health and life ahead and as long as it is a legit reason, your health, young and in school etc. etc. people will understand. So much can be learned by that also, I would imagine.
NJH: I wonder if you have had all the tests that NJH would do considering your history and what you have been told by the doctors so far. Also, hopefully you have had some of those tests that are standard at NJH or may be given to you at Northwestern.
Medications: It becomes difficult in some ways when we start taking one medication and then another to know exactly why certain changes are or are not happening. Did the doctor tell you and do you know the side affects of steroids. Just so you understand all that and are conscious of it.
Two Cents Worth: Most important as you go along now in life, get enough sleep .....and eat healthy as best you can. Make simple healthy meals and choices. It is not easy but it matters moving forward for yourself. We can't say that is hard to do...... we just have to do that for ourselves.....do it while you are young and be ahead of the game.
Brinsupri: I hope to go on it soon and for a person who has turned down medications frequently, this one, Brinsupri, I have got to try it to see if it will help me also. The inflammation is causing me dry eyes and eczema. So hopefully it does the trick they say it is suppose to do...help with inflammation.
Wanting it all to work out for you.....keep in touch with us on this site.
Barbara

Today is the beginning of my 4th week on the medication. Yesterday at work I noticed that I was having trouble focusing on my computer monitors. I brushed it off until this morning at church I noticed that my right eye is very blurry. I've been trying to dive deeper into the uncommon side effects, but beyond AI I'm having trouble finding them. I did see a blurb about Mayo reporting vision issues but I can't find any articles to back this up. I'll let my pulmonologist know tomorrow and happily take myself off of it to see if it clears up, as well as schedule an eye appt. I just saw the eye dr 3-4 months ago and got new glasses. And no, I haven't noticed any issues with the new prescription until these last few days.
Anyone else experiencing anything not listed as a common side effect?

I seem to have developed a major problem only 3 days in to my dose of 25 mg. This started Saturday afternoon (I thought the welt was an insect bite), then Sunday evening two itchy welts (thinking again midges or something) and no other symptoms. This morning I woke up with an itchy welts on my arm that rapidly developed into a whole cluster of welts some that ran together. I also woke up with vertigo which is no fun at all. I reported this to my pulmonologist and made an appt to see my PCP to rule out a UTI. Meanwhile I was told to stop which I have. I hope my symptoms have another cause but to be safe am on hold.

That's a great idea. Been on it for almost 2 months and have noted great improvement with no side effects. What is most encouraging is that my energy has improved a lot, the incessant coughing is much improved and mucous production far less. Let's keep hoping that it continues to work.

@desertdwellerjh I’m on 10mg and I woke up one morning with what I thought was a mosquito bite. The itch drove me crazy. It was on my ankle and somewhat swollen. The next morning I had another near it. I had some itch cream to put on it and tried my best not to scratch! It took about a week and a half before it cleared up. Nothing since. (I rarely get bites). Marilyn

@kpger I have noticed blurry vision issues but have had a hard time deciphering if it is related to the meds or if I just need a new glasses prescription lol. Seeing that someone else has mentioned it though will cause me to pay more attention, I will let you know if I experience any updates.

My pulmonologist didn't think it had anything to do with the medication, so I called my eye dr and was able to see them Monday afternoon. What I actually have is a macular hole. l've been referred to a retinal specialist and will schedule surgery to repair it. Keep us posted! I'll let you know if I find out anything different when I see the specialist.

@kpger
So is there any conclusion if Brinsupri could be related to the development of the hole?