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Posted By : Lj119864 - 8/14/2014 4:58 PM

I am a cf patient and I have been on Kalydeco for about two and a half years now excluding the 9 months I was pregnant with my son. I am wondering if anyone eles has bin on Kalydeco and if they have had any type of negative side effects. I'm only 22 and I am skeptical of this newer medication, especially when I'm supposed to take it for the rest of my life.

Posted By : BnotAfraid - 11/28/2014 12:53 PM
Welcome to the forum.

So sorry no one has answered your post from August. HW has been working on a moderater for this forum.

By now you most likely have found your answer.

However, for the future, when you pick up your medication, the pharmacy gives you a paper, explaining the medication, interactions and side effects.

Theses side effects do not happen to MOST people, so do not get over anxious about them. Take the medication and see what happens.

If you feel bad on it or an obvious reaction occurrs, call the doc immeadiately, leave a message if you have to.

Alot of us are on medication for the rest of our lives, it is scarey and overwhelming at first. Like anything else, you learn and will be comfortble with it soon.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Posted By : Gemsi - 11/28/2014 6:15 PM
Hi there,

Kalydeco is a very new drug still and I would guess not all side effects have been discovered as like many medications this takes years to find out and many different patients.

I do know Kalydeco is supposed to be like a wonder drug and I have heard many good things about it flying around on the net. In the UK it only treats 5% of those with cf, that's quite a small number really and it gives less testing data. Vertex have just submitted the new Df508 version for fast FDA approval. I belive the df508 version will be the g551d version plus something new they've been researching. This should mean more test data will be available for the current version of kalydeco.

It is another med to take long term and if like many with cf 60 pills a day and nebulisers and physio already feels like far too much especially when you have a little boy to run after.

It is supposed to be a good thing though and help reduce lung damage meaning hopefully less other treatments are needed. If it antibiotics can b cut down it would solve many problems with other organs like kidneys and liver.

I hope you have found what's best for you and that it's working.

All the best
Gem
Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm from the UK so tell me if I say something you don't understand. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy.

Post Edited (Gemsi) : 11/28/2014 5:18:30 PM (GMT-7)


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