Switch From Kalydeco to Symdeko

[stephen]

Has anyone switched from Kalydeco to Symdeko? I’m about to makethe change and am wondering what others have experienced.

During a recent CF Centervisit my doctor mentioned there may be some benefits of switching, one of which could be an increase in FEV-1. She was recommending that all their patients who were currently taking Kalydeco, and had a mutation approved for Symdeko, give it a try.

It’s been four years now that I’m taking Kalydeco (three of them off-label), and right from the beginning it’s been a real life changer. Symdeko contains the same amount of ivacaftor as Kalydeco. In fact one of the two daily doses of Symdeko appears to just be a Kalydeco tablet. The feeling is that switching should have no adverse affects.

My Symdeko is scheduled to arrive tomorrow. In preparation for the change I just had a baseline PFT. Withan FEV-1 of 41%, an improvement would be very timely.

In three weeks I expect to be walking the hills of Jerusalem, G-d willing. Anyone who has been there canattest that the hills are plentiful and steep! Each time I visit they seem to be getting even steeper. It could just be age, but maybe the Symdeko will “smooth them out” a bit.

I know that various individuals have responded quite differently to Kalydeco. That will probably be true for Symdeko too. However, it would be great to hear from anyone who has already made the switch.

Thanks, and I’ll try to keepyou informed.

 

[kenna2]

I'm in the process of being switched over from Orkambi to Symdeko and am curious/ anxious to see what differences there are symptom wise. Please keep us updated! I hope it works out well for you!

 

[4hats]

I’ve been on Symdeko for almost 4 weeks now. I’ve had no side effects from it. All is well on it. Previous to that I was on Kalydeco for about 9 months. I’ve not seen any notable difference after I’ve made the change to Symdeko. My PFTs went up a few points initially on Kalydeco then went down just about the same. The important thing is that I’ve generally felt well with no exacerbations on these meds.

 

[Ratatosk]

I'm curious as well about those who've gone from Orkambi to Symdeko. DS has done fine with Orkambi -- gained weight and grown taller, his sinuses seem clearer (breathes quieter while sleeping) and for the most part, cultures have come back with normal flora. He was asked by his doctor if he wanted to switch and at this point he's decided to stay the course. They did mention Symdeko for women with birth control issues and for those who experienced tightening of the chest with Orkambi.

 

[Aboveallislove]

We just had DS appointment a couple weeks past and his CF doctor was VERY high on Symdeko where she hadn't been on Orkambi. In fact, she recommended against starting DS on Orkambi, but seems ready to have him on Symdeko when he is old enough. As she said: It is more effective and has better tolerability. The CF doctor is very cautious so for her to speak positively about Symdeko was huge to me.

 

[Thelevyeffect]

Please post your results here. I am interested in reading about the changes. I am taking Kalydeco and have a few reactions to the pill. (Like low blood sugars) If Symdeko has the same effect as Kalydeco without the side effects it has my attention. I pray your trip to Jerusalem is a good one. One day I would like to go there myself.

God Bless,
Michael Levy

 

[stephen]

My advice for now is to definitely go for Symdeko if you are eligible.

With this weekend’s holidays for most of us fast approaching (Passover and Easter) I’m keeping this brief for now.

After taking the first dose of Symdeko last Monday morning, I thought I detected a SIGNIFICANT improvement in my breathing that evening. The next morning I measured my FEV-1 and the improvement was confirmed.

Using my home spirometer, I had measured it Friday afternoon after returning from a CF center visit. It was 1.05 liters. (They had measured it at 0.99 liters, or 41 %.) On Tuesday morning, it measured 1.18.

During a conversation with Vertex on Wednesday, they explained a littlie about how Symdeko and Kalydeco work. From their explanation, I can understand the quick response I experienced.

I don’t know if my FEV-1will improve any further, or even if the improvement is only temporary, but for now I’m feeling a big improvement!


Wishing everyone a great Holiday weekend.

 

[jricci]

My advice for now is to definitely go for Symdeko if you are eligible.

With this weekend’s holidays for most of us fast approaching (Passover and Easter) I’m keeping this brief for now.

After taking the first dose of Symdeko last Monday morning, I thought I detected a SIGNIFICANT improvement in my breathing that evening. The next morning I measured my FEV-1 and the improvement was confirmed.

Using my home spirometer, I had measured it Friday afternoon after returning from a CF center visit. It was 1.05 liters. (They had measured it at 0.99 liters, or 41 %.) On Tuesday morning, it measured 1.18.

During a conversation with Vertex on Wednesday, they explained a littlie about how Symdeko and Kalydeco work. From their explanation, I can understand the quick response I experienced.

I don’t know if my FEV-1will improve any further, or even if the improvement is only temporary, but for now I’m feeling a big improvement!


Wishing everyone a great Holiday weekend.

Wow- This is such wonderful news stephen! I'm so happy for you. Just in time for your trip. Sounds like those hills of Jerusalem will be smoothed out a bit.

I'm still taking Kalydeco off-label. My mutation, R334W, still nowhere to be found in clinical trials despite it being one of the more common mutations and the fact the majority of people with my mutation are pancreatic sufficient. I've also been wondering how people are transitioning from Kalydeco or Orkambi to Symdeco. I've heard of mostly positive responses. Your story is especially encouraging. Symdeco is a little cheaper than Kalydeco, so I wouldn't expect my insurance to give me a hard time about switching, but because I'm off-label I'm worried to rock the boat in any way.

Have a wonderful holiday and I hope your trip to Jerusalem is your best yet!

 

[PennyBK]

I switched from Kalydeco to Symdeko a month ago. I have a very rare class IV residual function mutation (not included in any Vertex studies) in addition to DF508, and had been off-label on Kalydeco since 2014. My insurance company surprisingly approved the switch very quickly - getting Kalydeco approved initially took about six months, while getting the switch to Symdeko approved took a day. It felt like a miracle! Perhaps because Symdeko costs less, but I am not sure why.

So far, I am feeling noticeably better on Symdeko - coughing a lot less and less mucus, and just feeling less sick overall. For reference, I am 28 and my FEV1 is around 60% on a good day. On Kalydeco, my lung function improved, sweat chloride decreased, etc. but I never really felt the difference in my lungs, even though I knew it was working based on those metrics - with Symdeko I am actually feeling better!

 

[Aboveallislove]

Penny that is so great! Thanks for sharing!!!

 

[ethan508]

I'm looking to switch from Orkambi to Symdeko at my next clinic appointment in May. Hoping for results like Stephen and Penny had.

I've been on Orkambi for 2.5 years, and it has improved my lung function and significantly decreased the time it takes me to recover from colds/coughs and decreased my susceptibility to cold/flu in general. However, it cost me considerable exercise tolerance (tightness in chest and/or exercise induced asthma). Orkambi also has decreased my temperature tolerance, making winter cold and summer heat more fatiguing than in the past. I want to spend my life outside hiking, swimming, and running, can I get that from Symdeko?

 

[kosdancer]

Ethan, Symdeko has definitely helped with chest tightness for me, and I think it's helped with exercise tolerance as well. I switched from Orkambi about 2 months ago but also had a head start because I was on it last fall during a Vertex triple combo trial for a few months. My lungs are noticeably more open and I definitely think exercise has been easier.

 

[kenna2]

Hey guys! Just wanted to update..I made the switch from Orkambi to Symdeko and I just completed my 6th day. I have to say I noticed I am getting up a lot more junk in a shorter period of time than I did on Orkambi. I feel like every time I cough I bring up more and more plugs than before, but despite all the coughing I've been doing my lungs feel great! I'm doing a PFT tomorrow and keeping my fingers crossed to see a little bit of improvement!

 

[stephen]

I’ve been on Symdeko for about 6 weeks now. The marked improvement in my breathing, which I experienced during the first few days, has reminded constant.

I seem to be experiencing some mild dizziness at times , which is listed as a possible side affect. Since I’m taveling in Israel, it’s a bit difficult to speak to my CF doctor and have her call me back. I did bring extra Kalydeco, so I could switch back to it, but I really don’t want to give up the breathing improvement.