Has anyone experienced an exacerbation after stopping Brinsupri?

Posted by kpger @kpger, Jun 21 9:47pm

I'm wondering if anyone has reported unusual side effects to the FDA. I submitted a report at the end of last week after having a severe BE flare.
I've been on Brinsupri since October. I had a lapse of about 4 weeks without it during the month of May because of an insurance SNFU and Amber wasn't able to fill it until it was resolved. About 2 1/2 weeks after the last dose I had a severe BE flare that lasted about 2 weeks. During that time I had coughing spells that lasted hours with out relief, more mucus production than I've had since the onset of the disease, pleurisy, fever and body aches. I had 2 chest xrays and one CT, all inconclusive as there was no sign of worsening from previous imaging and no sign of acute infection. I haven't felt that bad in years and it was scary.
My point is, I'm concerned about the possibility that there could be a connection between the stopping the medication and the onset of the flare. I'm interested to know if anyone else has had a similar situation or any other unexplained reaction that isn't listed as a known side effect. And, if so, did you report it? I don't think clinical trial participants are monitored after a trial has ended and the drug becomes FDA approved. I'd love some feedback on this.

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@kpger Insmed is still monitoring side effects. Please reach out through your prescriber to report this. Have things settled down now? What is your dosage?

REPLY

I also was without my Brinsupri for several weeks in January due to the BIG snow storm in Texas. My RX comes from a specialty pharmacy in Dallas. The airport was closed and it was a very slow process cleaning up. I was informed that UPS was the last terminal that was plowed out and my Rx was sitting in a plane there.
I was concerned and called the pharmacy. The pharmacist was great. He explained to me that this drug's half life is quite long. So once you stop it it stays in your system for weeks!
This put me at ease until my Rx arrived.
Could it be possible that you caught something and it just happened to be around the same time ?
I had an extensive infection after aspirating and was put on 875 mg of augmenten for lung, throat sinus and eye infections from it, while still on Brinsupri.

REPLY
Profile picture for camilleups @camilleups

I also was without my Brinsupri for several weeks in January due to the BIG snow storm in Texas. My RX comes from a specialty pharmacy in Dallas. The airport was closed and it was a very slow process cleaning up. I was informed that UPS was the last terminal that was plowed out and my Rx was sitting in a plane there.
I was concerned and called the pharmacy. The pharmacist was great. He explained to me that this drug's half life is quite long. So once you stop it it stays in your system for weeks!
This put me at ease until my Rx arrived.
Could it be possible that you caught something and it just happened to be around the same time ?
I had an extensive infection after aspirating and was put on 875 mg of augmenten for lung, throat sinus and eye infections from it, while still on Brinsupri.

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@camilleups
That's good info to know. It also makes sense when you think about the fact that it can take a full year from starting it to seeing full effects.

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