POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: socalpoz on July 02, 2013, 07:37:50 am
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So it's been a long time since I have posted anything, but I still read and follow the posts. It is because of the advice in these posts I am starting meds early and I made the decision to get this ball rolling. So officially, starting tomorrow I will begin taking Stribild, even though I have made this decision I have to be honest and say I scared to go down this path, I am worried about possible side effects and this drug not doing its job, cost of meds and of course complying. One thing is for certain, I really haven't dealt with my status (I put it on the back burner for the past two years to finish school) and now need to develop a support system. Well putting it out there for the universe, the real reason for me to start these meds is I have come to the decision that I plan to be around for a long time, i am in a much better place than two years ago. ;)
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Hey Socal;
It is great to hear that you are in a much better place now than two years ago -- and, that you see a long term future. I think your fears of the meds side effects, them not working, adherence, and the cost are all very natural -- I had many of the same fears.
In terms of side effects, I really stressed over this one and it turned out that my stress was way worse than any side effect. The vast majority of us don't get the side effects, and those that do get side effects usually only last for a week or two. With regard to the meds working - Stribild is one of the most effective meds, it is going to do fine for you, but also know there are alternatives available. I also worried about adherence, but have found it has been very, very easy to build taking my meds into my daily routine.
The bigger picture is that the meds are the only thing that is going to help in the long run, I have come to see them as a critical part of my support system. With regard to support systems - do you have anyone to talk to (friends, support group, counselor, etc.) about your status?
Again, it is good to hear you are doing well,
JM
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My friend starting on Stribild a little over a month ago. She is doing very well on it. The only thing she is noticing is her muscles ache sometimes. She had blood work done last week and will see how the medicine is doing when she sees her doctor I think this week. I will let you know when I know.
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Hey, I thought I'd post my experience just to maybe ease the OP's anxiety (as I was worried about the same things...especially the side effects). I started Stribild (first HIV med) 6 days ago. The first night (I take it at 10pm...a couple hours before my usual bedtime) I woke up and wandered to get a glass of water and noticed I was mildly nauseous (and when i mean mild...i had to be like "oh...is that nausea? Yea...i think it is). Other than that I had some bloating on the first two days. Now I just have some rather mild nausea in the mornings but that goes away roughly two hours after waking up. I must say, I am pleasantly surprised, as I had accepted that my life was going to be hell for the next couple of weeks (at least).
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thanks to all for comments/replies
Jmarksto- well without getting into to much detail, only 3 people other than medical personnel know of my diagnosis. There is a lot of guilt associated with my diagnosis as I had been in a 20 year committed monogamous relationship (fortunately he is still negative) which has ended due to my cheating and diagnosis. He was one of the three people and for reasons obvious not a support at this time. Second is a counselor who I no longer see due to money. Third is puzzling to me it is a longterm friend who has been diagnosed with AIDS for over 20 years, but when subject comes up he is quick to get off the phone (he doesn't live close by). I have been doing research for a support group here in Ventura County, California and there isn't any, I have learned they are starting one in September which I plan to be a part of. I do know the key to my being happy and successful in life is to deal with and embrace my status and that is my next goal. You will most likely hear a lot more from me in these forums.
Martha, thanks for sharing and please continue to let me know how your friends blood work goes.
Cpt.Mauzer- Thanks for sharing, question for you I see you take your medication at night, I know it can be taken at anytime, I had planned to take mine in the morning due to possible side effects of insomnia to which I already have issues with and thought it could exacerbate the issue. So has this been a problem?
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So today is the day, picking up my meds in an hour and the I will take my first pill, keeping fingers crossed it won't affect my work today!
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Cpt.Mauzer- Thanks for sharing, question for you I see you take your medication at night, I know it can be taken at anytime, I had planned to take mine in the morning due to possible side effects of insomnia to which I already have issues with and thought it could exacerbate the issue. So has this been a problem?
I have always had issues with waking up randomly during the night, and I have seen no change, except that I feel mild nausea. It doesn't keep me from sleeping; I just roll back over and close my eyes I take my medication at night because of my job; I can work anywhere from 4am to 8pm at night so I just decided to take it at 10pm because I know I will always be able to take it.
I'm going to be taking my 7th dose tonight, and this morning so far as been the worst. I made the mistake of not eating very much with the pill and then having a couple drinks. I've been hovering over the sink all morning -_-
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I'm not on Stribild, but was considering it just a few weeks ago. FWIW, I'm told that quite a few people are experiencing nausea when they first take it, but that it goes away after about a month. Of course, there are many others who are having no side effects at all.
Socalpoz, I know it's easy for me to say, but try not to beat yourself up over your old relationship. You didn't give him HIV, so that's something to be thankful for. If after nearly 20 years together he provides NO emotional support, regardless of the circumstances under which you broke up, then it's time to move on. We're all flawed characters, and frequently want contradictory things that don't easily reconcile. Love & accept yourself and move forward with life. It sounds like you are on that path by deciding to start meds. Good luck!
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Well day one done! Only few side effects; bloating, insomnia (was the big one) I kept waking up and I couldn't go back to sleep. This was unusual since I worked two graveyard shifts (not normal for me and I'm not a night person) this week Sunday/Tuesday and only got 5 hours of sleep those two days due to second job and at this point I really needed the sleep, I think I got maybe 4 hours last night.
Just took my second pill, we will see if today is any better, I will say I am so hypersensitive to any change going in my body right now! LOL
Capt.Mauzer- thanks for the additional info, especially info on the drinking! Hope things go better! I would be curious to learn from others if after awhile can we have one or two drink and not experience the nausea you did.
Vertigo- Thanks for weighing in and yes great advice, I am working on myself and think I am a work in progress, eventually some lucky person is going to benefit from all this hard work I am doing on myself (besides me). :-)
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Capt.Mauzer- thanks for the additional info, especially info on the drinking! Hope things go better! I would be curious to learn from others if after awhile can we have one or two drink and not experience the nausea you did.
Nah, I've drank 2 times before and it didn't bother me at all, it was the combination of not eating something substantial with the pill as well as the alcohol. I'd definitely be cautious your first time drinking though ^.^
Also that sucks about your insomnia, have you tried something like that Zquil? (or if you can afford it, an actual prescription drug)
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Day 2 smooth, there was bloating but no insomnia! SWEET!
Capt.Mauzer good to kno I would hate to give up alcohol forever, lol
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So day 3 bloating again, feel like I am gaining weight and with little to no appetite. Big issue today and I think its a side effect of the med or not, perhaps due to graveyard shifts this week. Today I was fatigued, an overwhelming fatigue, exhausted, felt like I had no energy and yawning all the time. I tried to a couple of naps in between work but couldn't sleep. I am guess the fatigue (hopefully) will go away after a few days. Day 4 will be better :)
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I may have mentioned this, but I swear by simethicone. The bloating isn't due to food, so eating more or less won't help. It's a verifiable scientific fact that Stribild, upon touching your esophagus, is converted into 100% pure methane gas. That's how it fights HIV, I'm told.
Simethicone is very gentle. You can't overdose, and the generic ones come in mint flavor. Bonus: have it with your pill and people will quit harping about your not eating anything else with it.
Link 1 - Medline plus: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682683.html
Link 2 - Amazon (mint flavored): http://www.amazon.com/Simethicone-Tablets-80-Mg-Mint/dp/B0011Z9MNO
Link 3 - An octopus escaping through a one-inch hole: http://www.youtube.com/watch?v=949eYdEz3Es
Lee
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Day four; Bloating and fatigue.
I have also noticed I have gained 6 lbs since starting this med, not sure if it's that I am retaining water (I am drinking lots, always have) or something else but my appetite has definitely decreased. I usually take my med with two pieces of toast smothered in peanut butter in the AM, I am not a breakfast person never have been (sometimes i will eat an apple of a banana before 10 am). But because of the continued weight gain yesterday and my pants getting tight, I had one piece of toast instead of two and experienced some nausea. Looking to find that balance. Any advice on good AM meals to help?
Interesting information Lee,
Thanks.
Do you take this four times a day as per your link recommended?
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Socal, are you perhaps microexamining your body at the moment? We see it in the Am I forum all the time. People closely watch their body, expecting symptoms, and lo-and-behold those symptoms manifest themselves - and these are people who never had a risk and obviously go on to test hiv negative.
We can do this to ourselves to a certain extent too, when starting meds.
We worry about possible nausea so we closely monitor our stomachs after taking meds. All that microexamining and worrying about what-may-be ends up making us nauseous.
The intense bodily scrutiny, worrying, and anticipating the worst makes for poor quality sleep, so then we feel fatigued.
I'm not saying you're creating this or blaming you in any way. You're only four days in and you're bound to feel a bit different, but if you're over-focusing on those small, temporary changes, you're in danger of magnifying them and feeling worse for it. Please don't do that to yourself.
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By the way, to be clear, I'm only talking about side-effects like nausea and fatigue, because these two problems are inextricably intertwined with our mental/emotional state (stress, worry, over-analysing), unlike a rash, for instance. A rash is something you need to keep a close eye on.
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Thanks Ann,
It is good advice, I am in general a person who likes to be in control of everything going on in my life.As I have stated before in my posts I am Hyper-sensitive to whats going on with my body right now. So I will try to follow your wisdom take a step back from this and try not micromanage it. :)
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Ive been on stribild since february. no gas, bloating, fatigue or anything. ive actually lost 15 pounds and have a six pack now.
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Hey, texan. Nice to see you're doing well. Same here (except the six pack abs). In fact, I'm about 1000x healthier now than I was before I was positive. The miracles of post-millennial science...
Now that you mention it, I actually don't remember having the gastro problems until other medicines were added. I blamed the Stribild because it's listed as a possible side effect, but honestly I have no idea.
That's one hard part about side effects: when you have them, it sometimes seems like you've always had them, and when they're gone, you don't remember them at all. My memory is particularly unreliable. I used to keep notes earlier in the year. I'd go look to see what's there, but I'm afraid of what else I'll find from January. As Homer Simpson said… (http://www.youtube.com/watch?v=YRS8BAQiZn8)
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So it now it's been 8 days on meds and things are going well. Main side effects I have noticed is lack of appetite.
In regards to The Bloat, I think the bloating maybe due to starting of the med and my body's adjustment to it. I noticed it would occur w/in 20 mins to an hour after taking the med and would last for hours, but after one week it seems not be a factor. Diet wise; I usually eat healthy and take daily vitamins and use to work out regularly with the exception of the last couple of years due to Nursing School. But now I am back to focusing on getting my muscles back in shape.
Thanks to Ann I have learned to chill a little bit now about the process.
Now, I am looking forward to my 6-pack (texaninnyc87), ;-)
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I started my Stribild regime two months ago with a CD4 of 219 and a viral load of 583,000. . . I had put my treatment on the back burner as well. . .I have never been on antiviral treatment before, and had or have the same fears you have expressed. . .far better than I could. What forced my decision. . a fungal infection which I could not get rid of, it was painful and debilitating, and it forced my hand. Here I am two months later. CD4 380, viral load 1200. The opportunistic infection, gone. Yes, I do have some side effects, mostly nausea. However, it is tolerable. I have found that taking it with Boost, has helped me tremendously, different things work for different people, but you have to take it with food, but I ust couldn;t, but the Boost, I can get down. My best hopes are with you as you start this journey. You are going to do great!! At my worst, because of the infection, I was off the tennis court and out of the gym, I feel like I got my life back.
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Hi CS and welcome to the forums .
Happy to hear you health is improving and you can count on it getting even better both in labs and the way you feel in general . Two months isn't allot of time for a person with a viral load as high as yours , Im sure you know that already but just wanted to say keep up the good work and welcome to the forums .
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Thanks for sharing CS,
Good luck to you as well, it is reassuring to know we have this forum for support.
Continue to keep us updated, as for me I will have my first labs (on Stribild) in four weeks, I am curious to see if there will be any improvement with CD4's and my viral load.
Cheers!
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Hi CS and welcome to the forums .
Happy to hear you health is improving and you can count on it getting even better both in labs and the way you feel in general . Two months isn't allot of time for a person with a viral load as high as yours , Im sure you know that already but just wanted to say keep up the good work and welcome to the forums .
Thanks! This is great. . . most of my friends, who know, don't really get it, it is great to share with people who do!
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socalpoz
It is a wait, but I have this feeling you are really going to be happy with the results, can't wait to hear. The waiting for me was harder than finding out I was positive. But I must say, I was shocked, even though I knew I was feeling better before I went in. . .I never could have imagined the results. Thanks for sharing your journey, my thoughts and hopes are with you.
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socalpoz and everyone,
I have good news about my friend who has been on Stribild for about 2 months. Her T-Cell count before she started was 480 and her Viral Load was 104,000. She got her results today and her T-Cell count is 680 and get this her Viral Load dropped to 195! I am so happy for her and had to share it with everyone. What wonderful medicine this is!
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Martha that is GREAT NEWS, thanks for sharing and congrats to your friend!
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I will tell her what you said. The doctor said her husband is near the end now and I was worried that all this stress she is under would cause her to not do as well on the drug but she did. I wish they had this medicine back when my son got Aids. He died in 96 at 29 and AZT was the drug he was on mostly. He was so sick and my friend isn't sick on Stribild. Treatment has come along way since those early days thank goodness.
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Martha- I am sorry to hear she is going through so much and as you stated it is amazing to see such great results with her labs. Yes, these new meds are not what they use to be THANK GOD, I believe I have had still worry of side effects that may come but very reassuring it will be nothing like what people have gone through before. I have been fortunate to have a friend who is still around, he has fought this disease for over 20 years that I have known him and there were many times I thought we would lose him. Sorry to hear of your personal loss, I appreciate your willingness to care and share.
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socalpoz, 20 years that is wonderful. I do care. After the North Ridge Earthquake my son got pneumocystis pneumonia. We live in Ohio and I flew out to LA. He was admitted to Cedars Sinai Hospital and was on the AIDS floor. I met so many caring people during that time I was there. I felt so much love and support. When our friends got this diagnosis I knew I had to care for them like I was cared for in LA.
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Okay update is has been over a month and I am happy to report that there are NO major side effects in taking Stribild. Bloating is the only side effect for me and it quickly disappears (with in and hour or two after taking my pill). Next step will be new labs while on the med, should know in two weeks if any liver issues. :)
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Okay update is has been over a month and I am happy to report that there are NO major side effects in taking Stribild. Bloating is the only side effect for me and it quickly disappears (with in and hour or two after taking my pill). Next step will be new labs while on the med, should know in two weeks if any liver issues. :)
That's great to hear! FYI: I had the bloating issue, but it seems to have passed... I'm at month 9. I don't think I have any side effects now, but I'm not 100% certain. I mean, I have 'issues', but I can't say they're attributed to Stribild. But I can't say they're not either.
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Oksikoko- Good hear your bloating has resolved, on issues I think we all have issues and the real challenge is it due to normal aging, HIV or something else :-/ Cheers
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I have been with the medication for 9 month a so far no side effects. Best cd4 count ever since taking stribild :)
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Good luck with the Stribild! It's quite exciting to have a new medication on the market, especially another one pill once a day, can't beat that for convenience. And psychologically it's just so much easier to pop one pill and be done with it. I may try Stribild some day, but my Atripla is working great for me now and has been since I started treatment!
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I have been with the medication for 9 month a so far no side effects. Best cd4 count ever since taking stribild :)
Thanks had my blood drawn last week waiting for the good news.
Good luck with the Stribild! It's quite exciting to have a new medication on the market, especially another one pill once a day, can't beat that for convenience. And psychologically it's just so much easier to pop one pill and be done with it. I may try Stribild some day, but my Atripla is working great for me now and has been since I started treatment!
Thanks, as the saying goes if it ain't broke why fix it.
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My husband and I are both recently diagnosed (July 2013), and we started Stribild 5 days ago. My husband's initial numbers were CD4 233, VL 77,000, and 19%. Mine was CD4 1008, VL 19,000, and 45%. Since my husband had to start right away, our doctor said I would have to as well, even though on my own I wouldn't have needed it yet. He said that if my husband started and I didn't, then I could potentially harm him. All in all, I'm glad that I went ahead and started it.
That being said, the first few days went well with no side effects that I noticed, but this morning I had nausea, and threw up the coffee I had just drank. It's making me a little nervous, but I'm an anxious person anyway. We take our Stribild in the evening with dinner. I will post more when we go back in three months to check our numbers.
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Broken but there, Good luck to you and your husband and please keep us posted.
I have been on Stribild for over two months, no major side effects (they diminished with time) but I still get bloating but it goes away within an hour or two. Waiting for labs had my blood drawn 10 days ago, but expecting great results :)
PS, your nubers are great but starting when first diagnosed is now recommended. ;)
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Socalpoz What ever happen with your labs? I have been on Stribild about 5 weeks now. I do not have my first labs or appt for another couple weeks. I'm curious to see how well they worked for you??
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Thanks for asking, I actually was going to post about them and rant about by Doctor's office staff. Well here's the rant sorry if it seems winded, I will try to keep it short.
Well I had my blood drawn at the end of August just two months short of being on my med for two months. I was actually looking forward to seeing an undetectable status. A bit back of history; I normally get my labs results weeks before my appointments via online, with Google health, since Google health went away I have had to switch software programs and in doing I also needed a new password or pin number from my doctor (office). Long story short it took over 3 weeks to try and get this resolved, I am a little shock that I am the only patient that wants to get the labs results before appointments. But when I first requested this from my doctor he was surprised it could be done. Anyway I still don't have a password or pin number, a week ago in talking with his staff I asked if they could just email or mail. Well I received it via mail. The GOOD news I had great results with my CD4's 43% & 758 and all of other values fell in normal ranges for the kidneys & liver etc. To my surprise there were no viral load test results, I called the office thinking they just forgot to send me that page (normally in the past it's always on a separate page), well the office explained there wasn't one and the person who entered in the order forgot to add it. I inquired would the doctor want to see this to see if the med is working (yes of course), my doctor's appointment had be reschedule and I am now going in tomorrow for another blood draw.
Anyway after the let down of not yet getting to open my undetectable present, I know it's coming and can't wait. In regards to Stribild after almost 3 months my only side effect is bloating for a brief period after taking my med (varies but always gone within an hour). I take it in the morning after a slice of toast and peanut butter.
I will hopefully be posting my undetectable status soon! ;D
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GrlPozX,
How has your treatment of Stribild been going? I am sure you will be happy with your results as well! :) Let us all know your results when you get them.
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SoCal,
I get my blood drawn tomorrow and my appt. is next week. Fingers crossed! My husband goes tomorrow morning. Hopefully good results!
My husband has been experiencing some weird stuff... Like the bloating and even some pain. Not sure if it's the meds. His primary doc thinks it is. We will see tomorrow. As for me, I feel more alive these days then I have in years! It's crazy! But then again could be the "happy pills". But maybe not. I am a lot my active then I ever have been.
Hopefully you get your undetected status soon! I have such a long road still. Remember my cd4 count was 32, VL over 3.5 mil... That was 3 months ago. I'm on my 7th or 8th week of Stribild now... We shall see!
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GrlPozX,
Thanks, for the updates and best wishes! I will keep my fingers crossed for you both. As far as side effects, I haven't heard of pain being one of them but could be related to bone loss or something? I am sure others can weigh in on possibilties. I still get bloating but it really has lessened the longer I take this medication. For you, I think you gain a lot more engery as the viral load goes down.
It's amazing what a once a day seafoam green (hideous color) pill can do :-D
Keep me posted.
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Hi SoCal!
So a little update!! I went to doc today and you won't believe this! When I went to doc 2 months ago, my CD4 was 32 & my VL was 3.5million. Today.. After only 7 weeks on Stribild, my CD4 is 159 & my VL is 152. Can you believe that?????! I started crying happy tears! My husband who started out CD4 434 & VL 159,000 is now CD4 494 & VL 222. That was after only 5 weeks.
How are you doing with your counts???
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GrlPoz,
I congratulated on your numbers on your other post, and just now read your comment here. Fantastic news for you and your husband, I love happy tears and this news makes my day!!
Thanks for sharing!!! ;D ;D
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I hope all is going well with the Stribild. Stribild is the first and only treatment I have been on since my diagnosis in early June of this year. I started with a VL of over 500K and my latest results show my VL is at 40 after (almost) 4 months of taking it.
I will have to say that I did have a bout of nausea for about a week, but after that I have not shown any side effects.. Thank Goodness...... Although, my doc did say that Stribild has a solid reputation in bringing down VL quickly...
I do agree with you, the cost is crazy,, like almost 8K for a 90 day supply.. thank goodness for insurance and the Giliad Co-Pay Card.. which when all told, I end up leaving the pharmacy with 8K worth of Stribild and $0.00 out of my pocket. So if you don't have the Stribild Co-Pay card, it is certainly worth looking into.
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Pontus,
Thanks for sharing the information and great news with your VL load. I anticipate that we will see more and more people switching to Striblid. Especially apprecitate the info on the Giliad co-pay card, I am currently on ADAP due to school and anticipate that next year I will no longer be elligible and was worried about covering my co-pay costs, I will be looking into getting one.
:)