Brinsupri (aka Brensocatib)

I have a friend who was in the trial and she has two friends who were in the trial also, and it turned out that they were all on placebo. After the trial they have been on brensocatib given by Dr. Winthrop. After reading all the side effects about the drug, I called her. She and her two friends have been on the drug for two years now, no side effects for them.
Hope this helps.

Ling

I have heard via the Lung Matters Facebook page that some (1 or 2) people on the trial have had to have all their teeth pulled after using this drug. Just something to be aware of...as a side effect.

I must have read the same post. Someone commented (and my pulmonologist confirmed) that it may be have been due to Papillon–Lefèvre syndrome (PLS) is a very rare inherited disorder caused by mutations in the CTSC gene.

It is characterized by:
Thickened, scaly skin on the palms and soles (palmoplantar keratoderma)
Severe early-onset gum disease (periodontitis)
Premature loss of both baby and adult teeth
It usually begins in early childhood and is linked to a deficiency of the enzyme cathepsin C (DPP1).

When taking Brinsupri regular dental checks are imperative, every 3-6 months.

I have a friend who was in the trial and she has two friends who were in the trial also, and it turned out that they were all on placebo. After the trial they have been on brensocatib given by Dr. Winthrop. After reading all the side effects about the drug, I called her. She and her two friends have been on the drug for two years now, no side effects for them.
Hope this helps.

Ling

Hi Ling
Did your friends report on the benefits to them after 2 years on it?

I must have read the same post. Someone commented (and my pulmonologist confirmed) that it may be have been due to Papillon–Lefèvre syndrome (PLS) is a very rare inherited disorder caused by mutations in the CTSC gene.

It is characterized by:
Thickened, scaly skin on the palms and soles (palmoplantar keratoderma)
Severe early-onset gum disease (periodontitis)
Premature loss of both baby and adult teeth
It usually begins in early childhood and is linked to a deficiency of the enzyme cathepsin C (DPP1).

When taking Brinsupri regular dental checks are imperative, every 3-6 months.

I must have read the same post. Someone commented (and my pulmonologist confirmed) that it may be have been due to Papillon–Lefèvre syndrome (PLS) is a very rare inherited disorder caused by mutations in the CTSC gene.

It is characterized by:
Thickened, scaly skin on the palms and soles (palmoplantar keratoderma)
Severe early-onset gum disease (periodontitis)
Premature loss of both baby and adult teeth
It usually begins in early childhood and is linked to a deficiency of the enzyme cathepsin C (DPP1).

When taking Brinsupri regular dental checks are imperative, every 3-6 months.

So are you saying that this very rare genetic disorder was the cause of the one or two cases? That seems highly coincidental and unlikely. If it is a known possible side effect (gum disease) and they were in the trial it seems obvious to be caused by Brensocatib.

No, I am not saying that. In reality, there could be other contributing factors (dental health at time of trial, age, other medications, environmental factors, etc.) Rare things do happen even in clinical trials.