Aa
Is it soup yet?
When the heck are they going to come out with a bearable treatment for 1A genotypes?
I'm in trouble for falling asleep at work. I'm as ready as can be to get treatment if it is halfway as sane as the new trials are saying. Getting tired of waiting.
I'm in trouble for falling asleep at work. I'm as ready as can be to get treatment if it is halfway as sane as the new trials are saying. Getting tired of waiting.
thanks!
Yes, I am not going to do treatment yet, but boy I gotta figure out this falling asleep thing. Even when I sleep the full 8hours I will find myself drifting off.
dang
Hurry up Gilead et al!
Yes, I am not going to do treatment yet, but boy I gotta figure out this falling asleep thing. Even when I sleep the full 8hours I will find myself drifting off.
dang
Hurry up Gilead et al!
My doc put me on Xifaxan and if you want to talk expensive! Whoa!!!!apprx. $23 per pil and you take 2 a day...that's $46 a day. My copay was $75. right now I am in what they call the "doughnut" hole of supplemental Medicare insurance and my copay is about $430 dollars...so for about 3 months until I meet my deductible I am paying out $540 a month. But the Xifanan does help with memory, fatigue and keeps other complications hopefully at bay. Find it unethical that there might actually be medication that could be available and could have a high cure rate in the hands of our doctors right now if it wasn't being looked at as a loss of revenue and a territorial pissing match between the drug companies. Really...it's peoples lives they are messing with.
You can't get FMLA for just the sleeping but if you have chronic Hep C and are having complications you can get FMLA if you are employeed at a company of more than 50 employees and have been there for a year or more. The only thing good about it is it protects your job. And if you are in treatment you are taking heavy dosages of drugs that all have different effects on different people.
The sleeping thing is no joke...if you haven't gotten that far in your disease to this point, good. Have spilled many a plate of food or cup of coffee...will absolutely not sit down if I am cooking...don't trust myself not to fall asleep and burn the house down. Now that I am ESLD Stage 4...talk about upside down sleeping habits....from 2 a.m to 8 a.m. and 4 p.m. - 8 p.m. seem to be my best awake times but unfortunatell everything you need to do are not open in those hours.
Use to be someone who worked 2 -3 jobs and did 20 other things and was always able to "pull it together". Those days are gone. Now I have to choose what I am going to do or not do. So to all the sleepers of us out there and there are many...good luck...be careful....don't put yourself in danger...be responsible for others safety.
You can't get FMLA for just the sleeping but if you have chronic Hep C and are having complications you can get FMLA if you are employeed at a company of more than 50 employees and have been there for a year or more. The only thing good about it is it protects your job. And if you are in treatment you are taking heavy dosages of drugs that all have different effects on different people.
The sleeping thing is no joke...if you haven't gotten that far in your disease to this point, good. Have spilled many a plate of food or cup of coffee...will absolutely not sit down if I am cooking...don't trust myself not to fall asleep and burn the house down. Now that I am ESLD Stage 4...talk about upside down sleeping habits....from 2 a.m to 8 a.m. and 4 p.m. - 8 p.m. seem to be my best awake times but unfortunatell everything you need to do are not open in those hours.
Use to be someone who worked 2 -3 jobs and did 20 other things and was always able to "pull it together". Those days are gone. Now I have to choose what I am going to do or not do. So to all the sleepers of us out there and there are many...good luck...be careful....don't put yourself in danger...be responsible for others safety.
I can so relate with you about all the crazy stuff that happened before and while on treatment but when it was going on it weren't to funny. Many times I would notice people looking in my direction with their hands over their mouths and hurrying along. (do you think it might have been my imagination?)
Hope you can look back soon and smile at all the antics. If I didnt remind myself often to see any sense of humor I wouldnt have been able to endure it! Best wishes to you!
Hope you can look back soon and smile at all the antics. If I didnt remind myself often to see any sense of humor I wouldnt have been able to endure it! Best wishes to you!
I couldn't get FAML for the sleeping. Saving face and also personally interested and doing a sleep study.
Haha. The other day I was 2/3rds through a cup of coffee and fell asleep and spilled it all over myself.
Shhhh, don't tell anyone I get up at 4am to go lift weights at the gym. . . .
Haha. The other day I was 2/3rds through a cup of coffee and fell asleep and spilled it all over myself.
Shhhh, don't tell anyone I get up at 4am to go lift weights at the gym. . . .
If you are very rich or if you have amazingly generous insurance, there is a med that does wonders for that problem but its VERY expensive. It's called Provigil. I used it for a year or two, first with a huge pile of free samples given me by two doctors, and later by ordering a generic version from a Canadian pharmacy (although I did get one batch that may have been counterfeit, as it didn't have the desired effect). The drug manufacturer put a stop to both of those routes, even getting the Dept. of Homeland Security involved in stopping imports of generics (and I thought they had more important things to do). The brand name drug was priced at about $8 per (daily) pill back in 2009, and insurance will only cover it for diagnoses of narcolepsy, shift-work disorder, and very occasionally for MS. I had to give up on it, and my quality of life dropped a lot at that time. I was very much looking forward to the patent expiration which happened quite recently, but there seems to be some serious price fixing going on because now a generic prescription cost too much to fill ($890 for a 90-day supply). We really need to do something about the power held by drug companies!
This is about you falling asleep. Don't know what you do, but you need to get some documentation from your doctor to your HR to cover you and your job if you are falling asleep.
I did the same thing....luckily at the time I was working 2 jobs...had 2 kids at IU...one let me work 4 - 6 hours in the p.m 6 days a week instead of 4 and my day job at Athem which was wonderful to me.. worked with me and allowed me to work a few hours, leave & go take a nap..lived close to work..and then come back. My division was open 6a - 7p and as long as I got in 40 hours in a 6 day week they were fine with it.
Believe me, if you have insurance through your employer, they already know something is going on just from the costs shown in the reports from the insurance company. They might not know your diagnosis but they know something is going on. I will never forget the first company where I was a supervisor and in on budget reports the auditor said who in the h.... is able to to work and take the amount of drugs listed here?...employees were coded by #'s but I knew who it was...it was me. You eventually have to document and come clean and do FMLA if possible to cover yourself.
Good Luck. When I was at Athem I would literally fall asleep with my fingers on the keyboard sitting straight up....very scary. I kept a pillow and blankets and alarm clock in the car...would pull over and sleep if necessary. Never will forget going to the store to get milk and eggs and someone pounding on my car window trying to wake me up. I had gotten back to the car, sat down, and fell asleep face forward in to the grocery paper sack. It is a scary part of Hep C. The fatigue is overwhelming. On treatment or not. You can have all the energy in the world, have slept a good night and be down and out within a couple of hours of being awake.
Not only Good Luck in your treatment...be careful and safe.
I did the same thing....luckily at the time I was working 2 jobs...had 2 kids at IU...one let me work 4 - 6 hours in the p.m 6 days a week instead of 4 and my day job at Athem which was wonderful to me.. worked with me and allowed me to work a few hours, leave & go take a nap..lived close to work..and then come back. My division was open 6a - 7p and as long as I got in 40 hours in a 6 day week they were fine with it.
Believe me, if you have insurance through your employer, they already know something is going on just from the costs shown in the reports from the insurance company. They might not know your diagnosis but they know something is going on. I will never forget the first company where I was a supervisor and in on budget reports the auditor said who in the h.... is able to to work and take the amount of drugs listed here?...employees were coded by #'s but I knew who it was...it was me. You eventually have to document and come clean and do FMLA if possible to cover yourself.
Good Luck. When I was at Athem I would literally fall asleep with my fingers on the keyboard sitting straight up....very scary. I kept a pillow and blankets and alarm clock in the car...would pull over and sleep if necessary. Never will forget going to the store to get milk and eggs and someone pounding on my car window trying to wake me up. I had gotten back to the car, sat down, and fell asleep face forward in to the grocery paper sack. It is a scary part of Hep C. The fatigue is overwhelming. On treatment or not. You can have all the energy in the world, have slept a good night and be down and out within a couple of hours of being awake.
Not only Good Luck in your treatment...be careful and safe.
The phase III results are not in for the Sofosbuvir, INF, Ribavirin 12 week trial are they? My hepa is shaking his head about the 12 weeks. He thinks it will turn out to be too short for HCV-1. And with telaprevir and Boceprevir already doing ~85% SVR for HCV-1, I can't see the FDA acting really quickly when Gilead finally submits. And I'm not at all sanguine that the Sofosbuvir all oral for HCV-1 will work out.
Nothing has yet even been summited to the FDA, I wouldn't hold my breath on what right now is company spin Since early 2014 is only a year away........ Good luck scratching.
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