Category: Drugs

Kaftrio Advice for Starting

Starting Kaftrio (Trikafta) – 7 Dos and Don’ts for an Easier Ride

Advice for Starting Kaftrio from a Patient My friend is starting Kaftrio on Monday and asked me the question “What should I expect on Kaftrio? How is it being on Kaftrio?” It’s like being asked the question “what’s it like having CF?” – as in its not going to be a quick answer! Just because I had a certain experience doesn’t mean someone else will! I have been taking Kaftrio,

Continue reading...
But You Look So Well Festival Time

Symkevi Diary – My Experience on Symkevi (Symdeko)

My 5 Day Experience on Symkevi (Symdeko) I’d been on Orkambi for three years when I was given the opportunity to switch onto Symkevi. Symkevi (or Symdeko in the States) is the second generation modulator that targets the cause of CF at the gene/protein level (for some of the CF population). The initial ride with Orkambi was troublesome, especially on the chest and it took me about 8 months before

Continue reading...
Home lung function results - home spirometry

Home IVs During Covid-19

Undertaking Home Intravenous Antibiotics During Covid-19 After two months at home and getting used to being in the swing of the normal world I started to feel unwell.  Normal world used very lightly – as in out of hospital, but still in the Covid era, so not actually that normal. I started to feel the unpleasant build-up on the back on my nose. The numb feeling which I’ve now learned

Continue reading...
Orkambi tablets

Orkambi Review – The Long Term Benefits

Orkambi – The Good, The Bad and The Ugly. Here I am giving an Orkambi Review- the good (benefits I’ve experienced as a result of Orkambi), the bad (the cost) and the ugly (the cost or more appropriately the foul things coughed up as a result of it)! Even on a quarter dose, it was tough coping with the initial side effects of Orkambi. Once I was over the worst

Continue reading...
Box of Orkambi

Starting Orkambi in the UK

For four years the CF community, particularly the CF Trust, have been campaigning for Orkambi to be prescribed on the NHS in the UK. This drug is a precision medicine which helps CF patients with two copies of the F508del mutation (approximately half the CF patients in the UK) Eventually a deal was struck between (not so) NICE and the manufacturers Vertex and CF patients now have access to these

Continue reading...
But You Look So Well - Cystic Fibrosis Blog | Blogging about my life with CF whilst I wait for my life-saving double lung transplant. © Helen Roper and But You Look So Well, 2020 copy right notice: Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Helen Roper and www.butyoulooksowell.com with appropriate and specific direction to the original content.