Symdeko Tester

CF 40+ yr old hope this baby works!!!! Just posting my true thoughts and results. Scroll to the very bottom to start from 1st tweet then up! I am -double 🔺f508

[Symdeko Tester @SymdekoT]

So they are really pushing the shit out of #trikafta on me. Not sure I want to try it. Same shit as symdeko plus another drug WTF!! . Don't know if it's worth it. I am going to experience the same breakouts on my skin as before so not feeling it

[Symdeko Tester @SymdekoT]

@Pluckyhd Yeah I had to stop symdeko because of it. It took about 4 months but it slowly built up over time for me. The shits just way to hard on your liver and gallbladder pretty much why I am not on trikafta same thing going to happen I feel.

[Symdeko Tester @SymdekoT]

Cystic fibrosis Fu, sorry just sick for like 2 weeks had to pull out the Ghetto triple combo #vertex. That's Cipro, Cayston, Pulmozyme. Haha but at least it works unlike you know what lol 😂😂

[Symdeko Tester @SymdekoT]

Congrats on the new triple combo drug #Trikafta from #VERTEX will be so happy if it helps a few peeps out !! As for the rest of us keep the faith in a permanent Gene editing solution 🙏🙏🙏. Based on my prior #symdeko results this will be an easy no go for me. 😭😭😭

[Symdeko Tester @SymdekoT]

Acne breakouts as mentioned before. It did increase my liver function but not enough to render stopping it but still not cool. If I think of other stuff I will post it. Add all this and the fact it's not working all that great lead me to stop. Hopefully it's working better for U.

[Symdeko Tester @SymdekoT]

Summary of #symdeko side effects I felt! Sometimes felt like it was making my vision blurry happened a few times, head a little foggy almost all the time, sexual ambition moved to zero this is never talked about but it was very real. Always need extra sleep 💤 so tired it seemed.

[Symdeko Tester @SymdekoT]

So I have an unopened box of #symdeko if anyone is interested in it. Just DM me. I am not going back on it. Just not enough improvement for the risk to my liver and other stuff especially over time seeing u need to take this forever. 🙏 For some better treatments..

[Symdeko Tester @SymdekoT]

Looks like Proteostasis drug went down in flames today. After reading through that article I posted a crispr type solution is really the only way to go. Will they allow it to come to fruition, big pharma definitely not wanting it to happen that's for sure. 🙏 Everyday for it.

[Symdeko Tester @SymdekoT]

A small molecule compound drug, ivacaftor, has (FDA) approval for treating G551D patients with significant benefits; however, the combination use of ivacaftor and lumacaftor or tezacaftor and ivacaftor for treating dF/dF homozygous patients only leads to modest benefits.

[Symdeko Tester @SymdekoT]

Cool article it's coming soon hang in there!!! https://t.co/PEWJETcH0g

[Symdeko Tester @SymdekoT]

@matissemagic Yeah they will use symdeko plus their new drug. Vertex is also going to have a triple soon as well I believe.

[Symdeko Tester @SymdekoT]

Curious as to results from proteostasis drug with symdeko. Mixed with orkambi result was Fev1 increase of 14% if I remember correctly. Soon we will be taking 10 or 20 of these all mixed together LoL 🤣. 🙏 For a crispr type solution soon!!!!!

[Symdeko Tester @SymdekoT]

So I placed a call to Mr Dr. and Of course no call back. So I made a corporate decision & stopped #symdeko. The build up over the 4 box period was just too much for my body to handle, the break outs on my face we're key signs to me. Haven't had any issue so far face clearing up.

[Symdeko Tester @SymdekoT]

Just finished box #4 all good but am starting to get some face zits. Not cool and it's weird like a zit that doesn't want to come to the surface almost like a giant boil. Brutal right on the tip of my nose I look like Rudolph. Ughhhhhhh! Not going way either so bummed!!! 😂

[Symdeko Tester @SymdekoT]

Man I am losing a lot of weight taking this drug sucks because already too skinny. I think I am down about 5 to 7#'s! lungs feel good not sure what my doc is going to want to do. Also getting a lot of skin breakouts which is not a great sign either.

[Symdeko Tester @SymdekoT]

So no inhaled drugs for a while have to say I am pretty solid. I am still doing the hyper sal daily. I kinda felt like this would be the case so far so good it seems. I stopped the #cayston because I can't seem to get it though my insurance so not really by choice.

[Symdeko Tester @SymdekoT]

Just finished box #3 of #symdeko and nothing new to tell u. No improvement at all. 😂 I will say that it seems to keep you from getting worse, it's possibly a good maintainer. I just decided to stop pulmozime for a while to see how it is solo no inhaled drugs now.

[Symdeko Tester @SymdekoT]

Good news #PTI has sold out to #Genentech, They havent done crap for CF since #pulmozime like over 30 years ago. At least that I know of, I could be wrong, anyway good sign for new treatment options. Bring it baby we need it ASAP. 😍 #symdeko not working to hot for me...

[Symdeko Tester @SymdekoT]

Worked out a few days ago and like normal I can see the dried salt on my forehead. Literally pure white salt!!! Tells me this drug isn't working to hot. I can tell u that third day on this I tasted my sweat and no salty taste, to bad it was a one hit wonder.

[Symdeko Tester @SymdekoT]

Another thing I didn't mention is how tired #symdeko makes me it's not like being drowsy or unable to operate a car or something but it makes you very much a fan of a boatload of sleep. Body working overtime to combat the side affects such as damage to the liver perhaps?? Humm...

[Symdeko Tester @SymdekoT]

Another thing I didn't mention. No weight gain at all zero! You would think that if it was truly improving my digestion and absorption at least a few pounds over a month + would be expected. You'll get nothing and like it! 😂😂