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sdeuber
07-31-2013, 10:47 AM
Hi all
I have been taking Kalydeco for almost 5 months now. My liver test have been going downhill since. From normal range to an ALT level of over 250.
Any words of wisdom?
I have not spoken to the doc yet, but I am soooo worried. I don't want to stop Kalydeco - it is such a life changer.

Aboveallislove
07-31-2013, 11:33 AM
I'm so sorry. That must be so scarey. I don't know how high those levels are but I know with a younger child they cut the dose. Also, I thought others had mentioned some sort of liver med as a possibility. What about calling the Vertex # (on the package insert) and saying you are going to be discussing with your doctor and wanted to know various options they recommend? Or the pharamacy and having pharamcist call Vertex?

LittleLab4CF
07-31-2013, 03:47 PM
In the short term consider taking a liver detox agent. A maximum dose of milk thistle, an OTC in the vitamin section locally or a specialty store will not harm you. (Maximum dosage according to their labeling). The only obvious toxin from Kalydeco is aspartic acid. I haven't even considered toxins or potential interaction with the liver but indeed Vertex has. Toxins, metabolites and about anything historically experienced are exhaustively tested. It's unlikely anything untoward is rapidly happening so chill down if you are able.

Another guess and it is just that, but getting well generally involves some release of toxins. Antibiotics have the side effect of temporarily overloading our liver and kidneys as the dead stuff from the infection, both bacterial and human turn toxic or release toxins. If you are repairing cells with Kalydeco, there may be some toxicity as this improves your health. All your infections and inflamed tissue may be losing ground and flooding your systems. If cutting the dose eliminated high ALTs healing could just be too fast. This isn't like any class of drug in the world.

Don't waste time getting an answer,

LL

Aboveallislove
08-01-2013, 06:39 AM
I read this on a facebook post fwiw: "Interesting discussion with our specialist today re Kalydeco. He said that there was one person who had high liver enzyme levels, but rather than taking him off the drugy, they prescribed some 'glorified antibiot' he called it and they were able to drop Kaly down from 2 a day to 2 a week. The antibiotic caused Kaly to stay longer in the system without loosing its benefits but protecting the liver." Vertex might know about this if you call the number on package insert.

sdeuber
08-01-2013, 02:05 PM
thanks to you all - great feedback. Good news is that Kalydeco really has a positive impact on the sweat test results - the lab just called and the sweat tests results are at a "normal" level :-) so now I will deal with the liver - was just worn out yesterday and panicked (plus my son just had come ut of oral surgery ... one of these days - today the sun is shining again :-)

Aboveallislove
08-01-2013, 02:35 PM
WOW! I had chills. That is so awesome. There is more info on that I saw since I first posted, but Vertex must have this I'd think: One said "some patients in UK only took 2x a week while on a particular antibiotic. She mentioned possibly clarithomycin as possibly the name. someone mentioned voraconazel. not sure if this helps, but wanted to.