Hello Rebecca
It seems like your experience is almost identical to mine except I am 3 years younger than you. But I just started Vemlidy 2 months ago. I won’t have another check up for a while so I won’t know if I have improved.
I still have questions about taking it though maybe you could enlighten me I am in many ways still trying to get used to this new way of life…did you always take it with food and what exactly does that mean? and what about side efffects?
so happy to hear it works! 
Hi Joseph,
My viral load became undetectable after being on Vemlidy for 3 months. Up until 3 years ago, my viral load had been fairly low with an occasional spike here and there, but nothing too crazy to warrant treatment. But at the age of 39, my viral load shot up to 90000 so my doctor finally decided it was time to start treatment, especially with my strong family history of liver cancer.
I take it in the evening while I’m eating dinner. I’ve only forgotten a few times but I usually remember early the next morning so I just take it then instead. Then I switch back to taking it in the evening the next day. I never thought I’d be the type to have one of those Monday through Friday pill organizer boxes but I’ve found it very helpful. You’d be surprised how many times you can take the pill from the bottle and then forget in the next hour whether you took it or not!
As for side effects, when I first started Vemlidy, I had occasional headaches. But it wasn’t a chronic dull headache or even a migraine, it was more of a sharp burst, then would go away quickly. After after being on the medication for a few months, it stopped altogether. Other than that, I have had no other side effects that I can confidently attribute to the medication.
Hope that helps!
Rebecca
Hi Joseph, I completely agree with Rebecca that getting a weekly pill organizer is a great way to never forget taking your medication. I felt like a geriatric patient buying one, but it really does help remind me every day to take my vemlidy. FYI, you can take vemlidy anytime of the day - just take it when you’re most likely to remember, and then stick to the same time of day as possible. Also, you do not need to take vemlidy with food. Some drugs you have to, but not this one. I always take my vemlidy in the morning after I brush my teeth so I don’t forget later in the day. Others take it right before they go to bed. Or like Rebecca, she takes it at dinner. Thanks again for posting and I hope we hear from you again! Always, Joan
Hi Rebecca
My instructions are to take on a empty stomach, same time every day.
I take mine, from my pill box:joy:
same time as my morning coffee.
Thanks for sharing about the pill box. I thought I was having a self pity party!
Caraline
This is too funny. I gave in a couple of years ago and started to do the pill box thing because I had so many meds to take each day. I have the AM and PM 7 day kind. The funny part is that even though I have the pill box, I have still screwed up and forgot a day’s pills or even forgot what day it was and taken the next day’s dose! SMH
When hen I first stared Vemlidy I recall being told I could take it on an empty stomach. But then later on, the Coordinator for the trial started to advise that I take it with food. And when I look it up the drug online, some instructions say to take it with food. Perhaps they are just being cautious for those with sensitive stomachs. I don’t know why the advice is conflicting so I just picked one and stuck with it!
Rebecca
For Vemlidy? I have a dramatic looking sticker on my bottle that says to take it with food. lol…not sure why some say one thing and another country would advise another…my main concern is that whatever I’m doing doesn’t decrease the effectiveness of the drug in any way.
I’m still a rookie I just started treatment so thanks for all the insight. As for the pill box…I have one of those but aren’t we not supposed to take the pills out of the original bottle?
Wow, I didn’t know there were so many different instructions for vemlidy!! But again, I agree with Rebecca is that the key is to stick to whatever works for you! And yes, I’ve actually forgotten to take my pill even with the pill box because life sometimes interferes. But for 90% of the time it is a very helpful visual reminder, especially when I’m traveling and get mixed up with the dates.
In regards to Joseph’s question about taking the pill out of the original bottle, as long as YOU are the one to take the pill out the bottle into a weekly pill box, then it’s ok. The pill box is as airtight as the pill bottle.
BTW, I think we should all get piece of the revenue for pill boxes since so many of us are promoting them!! Just kidding … thanks and always, Joan
Thanks Joan for your input - I am in the beginning of my treatment process and I am just constantly paranoid about doing the wrong thing…My fibroscan is normal 4.8 so I guess it’s a good time for me to start treatment my HBV was in the millions just before treatment started…looking forward to talking some more to supporting each other in the future
Hmmm, it is interesting that you all have different instructions on taking Vemlidy. The instructions for me on the bottle is “take one tablet by mouth once a day with breakfast”. I take my pill in the morning with food. I find it strange that we are all taking the same medicine but with different instructions/direction on how to use it. I used to get my pills from Rite Aid now Walgreens, but now get it from Johns Hopkins Hospital pharmacy and the instructions on how to take Vemlidy are the same. This is concerning!!!
Thanks, Bright.
Dear Bright, I have a terrible confession to make as a nurse. I never actually read the directions on my vemlidy bottle!! My hepatologist just told me it was ok to take it whenever, with or without food. Since I trust her, it really never occurred to me to read through the entire package insert or instructions on how to take the med. But the reality is that food is not required - it’s just recommended in case someone has a delicate stomach. However, next month when I get my prescription, I’ll make a point of reading the instructions rather than ripping them off my bottle and tossing into the trash. Shame on me!!! And my apologies if I’ve confused anyone. Always, Joan
Hi Joan,
I don’t think you confused anyone. The instructions on the pill bottle seems to be different for each of us and that is what I think is concerning. I have been taking my pill with food as instructed on the bottle for 2 years now and I have been fine. I just hope we are getting the greatest benefit out of it with all the different instructions. I will find out more about that from my specialist at Johns Hopkins and will share that with you all. Thanks, Bright
Thanks Bright for your reassurance that I didn’t completely confuse people. With that said, I do know, however, that instructions for taking medications with food is only to prevent GI distress (e.g. stomach issues) - taking medications with or without food has no bearing on the effectiveness of the drug itself. So, the fact that we’re all taking vemlidy, with or without food, morning or evening, etc., the most important thing is that we’re taking this drug every day! Thanks again … always, Joan
No problem. I think it is an interesting conversation or discussion to have. We get to hear what each patient is doing with his or her medication. It is a good thing. I wished the instructions or directions on how to use Vemlidy were the same no matter which pharmacy supplies or fills the order. You are right about the important part which is taking the medicine daily, and limiting how often a dose is missed. Thanks, Bright
I just spoke to my pharmacist who checks on me every 6 months to see if I have any side effects or questions about Vemlidy. She said she recently went to a seminar for her ongoing education credits and said they now recommend Vemlidy be taken with food. Perhaps it was initially released as being okay without food but as more and more people reported upset stomachs they switched? Just a guess!
Rebecca
I did some research and almost every information on its usage says to take it with food. I asked my doctor at Johns Hopkins and he confirmed that as well. He said when taking with food it does increase the absorption rate to 65% higher than when taking without food. I also checked on the Gilead site for Vemlidy and it says to take it with food. Here is a copy of that from their site on patient information on Vemlidy from Gilead: How should I take VEMLIDY? • Take VEMLIDY exactly as your healthcare provider tells you to take it. • Take VEMLIDY 1 time each day. • Take VEMLIDY with food. • If you are on dialysis, on your dialysis days, take your daily dose of VEMLIDY following dialysis.
I am yet to see a single site that instructs or suggests that Vemlidy be taken without food. Maybe you can all check with your providers or pharmacies to confirm it or get the right information. We all need the medicine, but if we are not able to absorb the most then it is problematic. I hope this information helps. Nobody is wrong here, we are all educating each other.
Thanks, Bright.
This is really great research done by the group. Thanks so much!!! Fortunately I take my vemlidy after breakfast when I brush my teeth. Whew! I’ll have to tactfully alert my liver specialist to let other patients know that food is recommended with vemlidy because it improves absorption as well as prevents stomach aches. So good to know!!! The power of group thinking. Always, Joan
You’re welcome. Glad to help do that research to find more information. We are all in this together. I am just surprised how such an important instructions can be missed completely. I hope they are not confusing Entecavir with Vemlidy? Because with Entecavir you take it on empty stomach 2 hours before or after meals. Hopefully, this can be corrected.
Thanks
now what I’m curious about is what taking it with food means?
does it mean you should take it at the same time as food? or does it simply mean your stomach isn’t empty?
It means take it with food in the morning. Mine instructions says with breakfast daily. So I take it when I am eating my breakfast. I will think taking it after eating will work as well. Maybe Joan can help us here.
Thanks