Cystic Fibrosis sufferer finds big health improvement weeks into trial of a new, drug Orkambi

Source: Warrington Guardian
Date: Monday, 27 February 2017
Written by: Adam Everett

Peter Trengove has found a noticeable improvement in his health weeks into the trial of a new drug called Orkambi.

A Cystic Fibrosis sufferer says he has seen a noticeable improvement in his health weeks into a trial of a new breakthrough drug.

Woolston resident Peter Trengove nearly died at three days old because of Cystic Fibrosis, which makes it difficult for sufferers to breathe and digest food.

His older brother Paul died at the age of six due to the life-limiting condition.

But 37-year-old Peter has seen noticeable effects after three weeks of a four-month trial into a new drug called Orkambi.

Peter had earlier trialled a drug called QBW251, which was hoped to be close to a cure for the disease but proved to be not effective as predicted.

However, Orkambi, which sees two tablets taken twice a day at mealtimes, has given him fresh hope.

He said: “Although the outcome of the QBW251 drug trial concluded with the drug not being as effective as predicted in lab tests, there have been other similar medicines that have made it onto the market and used by people who meet criteria due to high costs for the drug.

Orkambi is on the market in America but is yet to come on the market in the UK due to high costs whereby for one person costs mount up to £100,000 per year.

However, all is not lost.

There have been continual drug trials happening over the last couple of years to find a drug that either works in the same way as Orkambi or will work alongside it to make Orkambi more effective.

I am currently doing a drug trial whereby I have to take Orkambi, which is being tested alongside a trial drug that’s inhaled to see the effects these combined drugs have on Cystic Fibrosis.”

Peter has noticed fewer breathing difficulties, a ‘dramatic’ reduction in coughing and greater lung function.

He added: “I’ve been able to breath better and when I cough, the feeling I have in my lungs is as though nothing is there.

My coughing that occurs in the morning after a night’s sleep has reduced dramatically to being almost non-existent.

When I’m at the gym I am able to work that little bit harder on the exercise bike.

When I wasn’t well last year my lung function dropped right down to 31%, which is a dangerous level in Cystic Fibrosis and can result in being placed on the transplant list.

Since then my lung function has lingered around 40%, which although is better, it isn’t where I’d like it to be.

As a result of being on Orkambi for three weeks and one day, my lung function has increased to 49% – and this is just Orkambi.

I am yet to be placed back on Hypertonic Saline and this new trial drug which will compliment Orkambi.

My reckoning is once I’m on them my lung function will increase even more.”

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