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Cubs fan Brian. Hang in there dude. For the folks under 40% it seems like its a hard road. I am starting to feel somewhat normal/usual/baseline, on day 17. Still have intermittent fevers, rhinitis, mild GI issues. But the headaches are going away, the SOB is getting bearable and...

My parents used to make it for me in the mid 1980's. I think they just figured out the proportions for about 5% and boiled it up themselves (my CF doc told them to do this since it was before it was available commercially). They then kept it in a jar in the fridge for a few days, then made a...

Born in NJ, moved to MA for 22 years, then IN, NY, and SW VA for the last 16.

Rossigrl. I hear ya. I thought I was going to drown the first couple of doses and had to turn the oxygen way up and it still didnt control the violent coughing. Had to finally dose with narcotics to calm everything down. Now, 13 days out, I just get SOB for about 1-4 hours after dosing, but...

I'm glad it was a miracle for you. Did you have any initial negative reactions and how quickly did you notice a positive change in your health?

I'm glad it worked for you. How quickly did you notice a positive change?

One thing I found helpful with both muscular and bone issues is holding the area tightly when I cough, sometimes even temporarily wrapping a scarf around my torso if I had to cough hard. It does help ease the pain a bit (much like taping a broken rib). Didnt find that helped my much with...

Thats awesome :) I hope she sees improvement in other areas as well. (FART2) If you dont mind me asking, what is her FEV1?

Saintoffeon- have no idea, but I did hear that a lot of folks quit the trials part-way through because of these charming side effects. And I personally think it made it out of the trials with pretty mediocre results, but with an FEV1 of 39 and dropping, I'll try anything passed by the FDA...

Anyhow, the Orkambi was quite an ordeal to begin, but is getting better as time passes. Day 1- Such violent coughing and severe SOB (even on 3L 02) that it was a close thing about going to the ER. Sats 84-88 1-5 hours post-Orkambi. Ran a fever, severe rhinitis, insomnia, night sweats. Day 2-...

eeewwwwww on so many levels. Sorry.

aboveallislove- thanks for your concern. :) I am in touch with my doc on a daily basis with regard to how its going. He knows that I monitor myself better than any hospital ever would in this situation with hourly inspirations monitoring, constant sats, temp, pulse, BP, oxygen need, you...

Rubyroselee, out of curiosity, what's your FEV1? I'm on day 5 now and last nite was still horrid. 5 hours of nonstop coughing followed by 3 hours of insomnia and 1 hour of sleep. UGH.

Be wary of professional whitening. I had it done and had pain for almost 2 years-- it made my teeth so sensitive. Maybe you are different.

DJfunky, I assume you've tried OTC thermotabs (sal pills for Na and Cl) and K pills? I used to be a professional rider (out in the heat all day in VA) and gatorade did nothing for me, but hydration plus the pills helped a lot. But everyone is different of course. :)

Jswans, thanks so much for your input. I have really noticed the SOB, which starts within about an hour of taking the drug. However, for me personally, the amount of crap I am coughing up and getting out of my lungs, may be beneficial enough to outweigh the negativity of the bronchospasms. It...

Rick, I'm so sorry. Something similar happened to me. The CFRD wasnt caught quickly for various reasons, and in a little less than 2 years my FEV1 went from low 60's to high 30's. Massive inflammation from CFRD was the cause. I did not experience weight loss, have not had a problem keeping...

Ethan, please let us know what happens. I've heard that insurance companies would probably not approve Orkambi for someone with an FEV1 above 90%, but other than that doctors statement, I have no real evidence to back that up.

Robinb29, I'm offsetting my antacid by 2 hours as well. Seems to work. :)

The doc said he was worried about bronchospasms, but I think even he is gonna be surprised at the magnitude. I dont know if there is any emergency protocol. Luckily, (or not) I am on 02 at night and sometimes during the day, so I had that on hand. If I hadnt had the 02 around, I would have...