The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading
Tag Archives: symdeko
Clinic check up
Today was originally a regular follow up but became an IV check up. All looks good. My weight is down a little from all the antibiotics wreaking havoc on my gut. My FEV1 was down a smidge to 34%/.98L but still around my baseline. I also had a dexa scan (bone density). I have a dexa every 2 years to check my bone health. In 2016 my scan showed osteopenia which is a step before osteoporosis. It just means that my bones are a little weak. With CF I don’t absorb nutrients normally because of my bad pancreas therefore I have to take vitamin and calcium supplements. Continue reading
Symdeko update/MRI results
I started Symdeko April 19th. It started to affect my mood (depression and anxiety), my hair has been shedding and giving me slight acne. I decided to stop taking Symdeko mainly due to the depression and anxiety issue. I have not felt like myself in awhile. I made the decision to stop the Symdeko and the Effexor and find another antidepressant that will hopefully work better for me. Now I’m thinking maybe I should have just stopped the Symdeko, but I didn’t think it was causing any issues until I realized that was the only new thing. Now that I’m off of the Effexor I will try my best not to go back on it if at all possible since it was so hard to come off of it. Continue reading
Clinic update
Today was a regular CF clinic check up. Unfortunately I haven’t been feeling the best for about a week. I have been coughing more and coughing up more as well as super tired. This all could be playing into my depression and antidepressant med change. Continue reading
Change on the horizon…hopefully good
I saw my psych doctor today to talk about my depression and anxiety. My antidepressants aren’t helping anymore. I’m on Effexor and have been for many years and it’s not working for me anymore. We are going to wean me off the Effexor and starting Trintellix (a newer med). It’s not going to be an easy time weaning off the Effexor because I have been on it so long. I pray that it is an easy transition onto the new med. I need a break through. I deserve a win in this one. Continue reading
Depression on a rainy day
Depression on a rainy day is no fun. Depression itself is no fun to live with. Depression on a holiday where we honor the men and women who paid the ultimate sacrifice for our country is not easy either. Reading/hearing all the stories of the fallen heroes is hard when you are not having a good mental day. I got teary eyed (as usual) as the XM radio’s “The Highway” played “Taps” to honor those killed in action. This weekend has been hard one for me and I don’t really know why. Continue reading
Clinic Update
It was a good clinic visit today. It’s always good when they say that you look the best they have seen you look in awhile. I don’t know if I can attribute that to the Symdeko or just feeling decent. I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking. It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading
CF please vanish
There are some days that I wish CF didn’t exist. Today would be one of those days. Don’t get me wrong I wish it didn’t exist at all but when I’m having a particularly not so good day, it is fresh in my mind that I wish it didn’t exist. Continue reading
On a new journey…
A few months ago I shared about the new CF drug Symdeko (Symdeko post). After much tossing around of the idea of taking the new drug I finally decided to give it a try. I started the drug 3 days ago. It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb. Continue reading
New CF drug!
New CF Combo Therapy, Symdeko by Vertex, Approved by FDA for Certain Patients
Vertex Pharmaceuticals announced that the U.S. Food and Drug Administration (FDA) approved Symdeko (tezacaftor/ivacaftor and ivacaftor) as a therapy for cystic fibrosis (CF) patients carrying two copies of the F508del mutation in the CFTR gene (the gene defective in CF) or with one mutation that responds to tezacaftor/ivacaftor. Continue reading
CF Happens 