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Brinsupri experience after 3+ months
MAC & Bronchiectasis | Last Active: 9 hours ago | Replies (310)Comment receiving replies
@scoop
You have sure been an advocate for Brinsupri! Glad it is helping you. Yes as of today I stopped it. I have had 3 SEVERE Vertigo attacks accompanied by heart racing and flushed face. And a feeling of being on the verge of Vertigo much of the time which is not something I can live with. AI is not very clear but does seem to link it with possible side effect of dizziness or vertigo, heart racing. It could be some sort of a hypersensitivity reaction or allergic reaction? I cannot know for sure it is the Brinsupri but must stop in case it is. I have tried many times to contact my Pulmo without success. Additionally I have seen no benefits as of 8 weeks but not stopping because of that. I also have been very exacerbated since before Brinsupri so that is another factor which makes this hard to sort out. Brinsupri will not address the infection and my pulmo probably should have opted for attempted treatment instead of Brinsupri.
Replies to "@scoop You have sure been an advocate for Brinsupri! Glad it is helping you. Yes as..."
@irenea8 So sorry, also, to hear you say: "I have tried many times to contact my Pulmo without success." Not a calm moment or moments when you are needing a response.
Is the doctor on a MyChart system?
So far with all those I see now and on a MyChart system, I have a response.
It might be from the nurse who forwarded my message to the doctor and then heard from the doctor to reply with his thoughts or a message she was able to respond with to me.
I wonder if the ease of the MyChart system makes the difference or just a 'not in place' good system for communication with patients???
The pulmonologist's office I quit was a 'not in place' good office staff who understood their responsibility to patients and the importance of it. Such an attitude in a medical setting is so disturbing.
Barbara
@irenea8 Irene, how awful that you've had those attacks of vertigo. If your pulmonologist is unresponsive, can you discuss with your primary care doctor? Whatever the cause (and it could well be a combination of factors), dizziness and racing heart sound like they need professional attention. Let us know how you make out? Best wishes.
@irenea8 The other day I wasn't sleeping well and dizzy at times.
Due to my past experience I felt it was that I had wrongly cut back on the amount of D I was taking and was therefore not taking enough Vitamin D. I went back to my regular routine of the amount and slept better and dizzy/vertigo spell stopped.
I found, for me, that when I am on certain types of medication it affects my D level and it goes lower.
I know you do the D but thought I would tell you of my experience and findings for myself.
Barbara
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@irenea8 So sorry to hear this. Hope you reach your baseline as soon as possible.