KellyAnneB
New member
Since I started the drug on July 31 I've been having constant night sweats and high blood pressure. As well as fatigue. Has anyone else had similar symptoms?
For people taking Orkambi
- Thread starter KellyAnneB
- Start date
EmilysMomma
New member
I am on day 11. I noticed my blood pressure was higher than my usual the first few days but I Thought it was just my nerves and anxiety in starting the medicine. . I usually run low like 90 systolic, even 80's when I fully resting. The first couple days I saw 120-130 systolic (top #, sorry that's usually the one I look at most). Int he last few days when I check my blood pressure it is 105-120 , so yea still higher than my usually but not high high.
I also noticed pretty quickly that my resting heart rate lowered as well and it's still that way now. I still have some extra shortness of breath but it has eased up and mostly it's just in the morning now. I had nausea a few days in for like 3 days. I have also noticed I'm sweating more during the night too. I normally sleep hot to begin with but most days when I wake my hair is a little sweaty. It does seem easier to get up and out of bed in the morning and I'm not coughing then either.. It's not just during the night I had noticed especially the first week I was just randomly getting hot more often. It is pretty hot here right now but still something I noticed.
I also noticed pretty quickly that my resting heart rate lowered as well and it's still that way now. I still have some extra shortness of breath but it has eased up and mostly it's just in the morning now. I had nausea a few days in for like 3 days. I have also noticed I'm sweating more during the night too. I normally sleep hot to begin with but most days when I wake my hair is a little sweaty. It does seem easier to get up and out of bed in the morning and I'm not coughing then either.. It's not just during the night I had noticed especially the first week I was just randomly getting hot more often. It is pretty hot here right now but still something I noticed.
R
Rabia72
Guest
Hi. I am the mom of a 14 yr. old boy who has been on Orkambi for a little more than a week. He says he feels the same. His main symptoms have always been digestive and sinus related. We have no idea how his digestion will be affected until he gets some blood tests, but his sinuses have had no change. He has an increased cough and is bringing up mucus that he does not normally do. He seems a little more lethargic, but he also started basketball camp so it could be that. I am so excited at the possibilities but this flying blind is scary!
EmilysMomma
New member
I forgot to add that I was more tired the first week also. It seems to be a little easier to cough stuff up also. Sometimes my sinuses seem to drain into the back of my throat on it own such as on days that I would rinse my sinuses and then the rest of the day sometimes hunks would tickle and fall down the back of my throat from my sinuses, gross I know lol.
DS age 12 has been on it for about 6 days. His main symptoms have always been digestive and sinus related as well. Never really coughs, usually doesn't bring anything up. He seems to be doing more throat/nose clearing, but he also started up his month of tobi a couple days before. His schedule has been a bit off -- usually he spends the day at daycare and plays pretty hard, but we were out of town for the weekend and left him at his grandparents lake cabin for a few days. So while I THINK he's not as extremely salty tasting (yes, I've licked him), I'm not sure. He has had looser stools, but then he's been eating like crazy (preadolescent growth spurt?) and my MIL a former nurse tends to get worried about giving him "too many enzymes" when he has a huge meal, whereas I throw a few more enzymes at him. Things in our schedule should be normalizing in a couple days. Friday marks a full week of being on it.
TreasureGoddess
Member
Ratatosk, HA "yes, I've licked him"!! Made my whole day! 
We're STILL waiting to get through the final issues due to our insurance company not playing nice. Hoping to have my kid started on Orkambi in the next week, just in time for his start of school, ugh! Nothing like nonstop coughing and nausea for the first few days of school? Ah well, will be TOTALLY worth it if he can start feeling better and have thinning mucus!!
My 15 yr old usually is one of the "goat boys" of the family. We have 3 teenaged boys in our brady bunch family. I think I"ll make mine SHOWER then Lick him and compare to after he's been on the meds for a few weeks. HA!
We're STILL waiting to get through the final issues due to our insurance company not playing nice. Hoping to have my kid started on Orkambi in the next week, just in time for his start of school, ugh! Nothing like nonstop coughing and nausea for the first few days of school? Ah well, will be TOTALLY worth it if he can start feeling better and have thinning mucus!! My 15 yr old usually is one of the "goat boys" of the family. We have 3 teenaged boys in our brady bunch family. I think I"ll make mine SHOWER then Lick him and compare to after he's been on the meds for a few weeks. HA!
EmilysMomma
New member
I've noticed looser stools as well which is unusual for me.
When the pharmacist reviewed some potential initial side effects I was thinking for the most part they sounded like typical cf symptoms -- may have nausea or stomach upset, cold or respiratory symptoms, looser stools... I've been trying to figure if the loose stools are typical malabsorption or just different.
EmilysMomma
New member
i don't know but it doesn't really make sense since most people actually gained weight on it and increased bmi. I am hoping it is just an initial side effect. I have already lost at least a pound, thankfully I have a good amount of extra weight that I've already gained in the past year. You would think the opposite would be happening with stools actually.
kemcloney3
New member
I started Orkambi 5 days ago. My first dose was on Friday night. I woke up Saturday morning feeling pretty tired but attributed it to having a busy week at work. Sunday I woke up feeling like death. Very short of breath, wheezing, exhaustion, and leg pain were my main symptoms. I didn't leave bed the entire day. Monday was a little better but the chest tightening comes in spurts so I now keep my inhaler close by. Tuesday was great. I thought oh heck yes this is how it's supposed to be! Today I woke up drenched in sweat, a yeast infection and legs throbbing so bad I couldn't walk. I had to take off half a day of work. To combat the side effects I take ibuprofen every 4-6 hours but I'm worried about my sleep. I'm not sleeping at all. I normally go to sleep by 10 and I've been tossing and turning until 5am. Anyone else having that problem? I hope the side effects dissipate soon.
R
Rabia72
Guest
I laughed out loud when I read that you licked your son. My son was diagnosed at 15 months old because he was born before they started testing all newborns and when I read the symptoms, I had a friend bring her kids over and we licked them all and obviously there was a noted difference. Now, I licked him again after 1.5 weeks on it and he tasted less salty. Nothing like empirical evidence! I am not sure about my son's stools, but he has been complaining about stomach pains. He is almost 15 so I would prefer not to have to inspect . I have a theory and I am sticking to it...here it is.... all the side effects that they put out there seem to me like a thinning and a clearing of the mucus. Cold like symptoms and increased cough..right? Also loose stools and nausea, I attribute that to maybe the body's ability to break down food combined with the enzymes and the digestive tract isn't used to it. I am not a doctor but it just seems common sense. When you clear the pipes, things move through better, so I visualize that going on in my son's body. I know it may sound strange but who else would even have a clue what I mean. I just think it is great to have a forum like this to compare notes and experiences.
. I have a theory and I am sticking to it...here it is.... all the side effects that they put out there seem to me like a thinning and a clearing of the mucus. Cold like symptoms and increased cough..right? Also loose stools and nausea, I attribute that to maybe the body's ability to break down food combined with the enzymes and the digestive tract isn't used to it. I am not a doctor but it just seems common sense. When you clear the pipes, things move through better, so I visualize that going on in my son's body. I know it may sound strange but who else would even have a clue what I mean. I just think it is great to have a forum like this to compare notes and experiences.This is day 1 for me, I have to say- I'm both excited and scared. Is everyone who is experiencing GI issues making sure they are taking it with at least 20 grams of fat? Also it can make antacids less effective for a bit, the package recommends you start at 1 pill in the morning for a week if you are on antacids like nexium and the like. An for those feeling fatigued, if you are on anti-depressants they will be less effective on Orkambi and you might need your dosage adjusted. If the side effects aren't related to those things then I hope they go away soon!
R
Rabia72
Guest
Hey Robin, congrats and good luck! I know that for my son, I stopped his antacid a few days before the Orkambi came to avoid any interaction and he is taking the pills with things like peanut butter and ice cream and fried foods and full glasses of whole milk/half and half with chocolate syrup. The trade off is that he is in better spirits and excited about the things he does feel. For example, I don't know if you will all know what I mean by this, but when he gets hot, he doesn't sweat. Literally, no sweat would drip off of him. Instead, he would get a heat insulating film around him and sometimes, he would get so overheated that it would take a day or two for him "normalize". The other day, he played a basketball game outside at the training camp he goes to (it was over 90 degrees and humid) anyway, I picked him up right at the end of the game and he was DRIPPING with sweat. It was pouring off of him and I could see the liquid sweat on his body. That has NEVER happened before. Not only was he not overheated, he came home and played even more basketball. I cried. That one thing limited him his whole life. Even with Gatorade and salt and all the things they tell you do, he would still get really lethargic and miserable in the heat and humidity. We have missed out on family vacations and other activities because even in NY the heat was too much for him to deal with and now.......WOO HOO. It is such a freeing feeling to know that he may be able to be a kid and play outside without fear of needing days to recover.
I didn't stop my antacid, I would be in tummy agony without it but I'm off setting when I take it by 2 hours from the Orkambi AM dose. I live in Texas so I don't know that I've ever noticed a time when I wasn't dripping in sweat after being outside, but I'm hoping I'll see a reduction in the huge amounts of salt crystals left on my skin after the sweat dries. Being outside really wipes me out too though, which sucks cause we have 4 boys and all summer I hide from the heat!
R
Rabia72
Guest
You have 4 boys??!! Oh my goodness. That is quite a handful. Texas is super humid, especially now. I could never live in the South just because of that. I don't like wearing the air. Hopefully you will see a reduction in the salt crystals. Like I said, the mucus was so thick in my son's pores, he couldn't actually sweat, a thick coating would just stick to his skin and make him sticky and hold in the heat. It was bad, but that has already changed after less than 2 weeks. It will be kinda cool to look back on some of these posts in a few months to see how much progress you and others have made.
Rabia72, a friend of mine's daughter who has a different mutation and is on Kalydeco, said something similar happened. Her daughter would get so overheated, even just putting on a winter coat at the end of the school day and briefly waiting for her ride home was horrible. She'd just get so hot. Once she started on Kalydeco she didn't have that issue any longer and didn't sweat out as much salt, didn't "taste as salty".
R
Rabia72
Guest
Ratatosk, That is AWESOME! So you have seen how limiting that specific issue can be. I am happy to hear that her daughter is free also. My son is also now getting many pimples. Normally teenage boys aren't happy about that, but now that his pores are no longer as clogged, all the stuff that has been unable to "flow" is coming out. I bought him some Clearasil and told him to enjoy his battle with acne. Anything new on your end?
EmilysMomma
New member
I've never sweated too much and when I do I also have never needed deodorant since there's never been any smell which I always attributed to all the salt in my sweat may be a natural deodorizer.? I have noticed I seem to sweat easier and more now since being on orkambi, I'm a little over 2 weeks in.
D
delsonno9
Guest
Our daughter has been on the two year drug study for Orkambie since she was 16 and hasn't noticed a difference between the drug study dose in which we didn't know the dose she was receiving compared to being prescribed & put on Orkambie 8/3 . Hoping her PFT's go up when she goes to clinic. As her Mom I noticed that while on the second year of the drug study her cough was different as in being more productive. We didn't see much difference while on the drug study so we're hoping this doseage makes a difference.
R
Rabia72
Guest
delsonn, I will definitely keep my fingers crossed that the correct dose will make a big difference. Does she feel any better? I noticed that my son being a teen will keep things to himself unless I ask him directly and specifically. I know he is improving but I think he is cautiously optimistic because he is afraid it is too good to be true. It is hard as a parent to want so much for our kids from this drug and other treatments but for them it is exponentially more difficult and I can't even imagine how they feel going through it. That is why I like this forum, there are parents as well as patients all sharing their experiences.