POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: jacken on June 16, 2011, 01:18:22 pm
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Now I think I should be moving from "newly diagnosed" to "living with HIV"
I am leaning toward getting meds and was recommended for either Atripla or Isentress + Truvada.
There are pros and cons which I like for each regimen. Obviously, one's cons are the other's pros.
Pros: Atripla - once daily, I&T - no dietary restriction
Cons: Atripla - empty stomach, taken before bed, I&T - more pills.
Personally, I don't think I will have a compliance issue. Once I make my decision, I will suck it up and stick to it. There are a few concerns.
1. Meds copay. My prescription coverage will have a copay of about $300-350 a month. I know there is copay assistance program for a year from pharmaceutical companies but it is not for a long term. I am aware of ADAP but I don't think I am eligible. With I&T, it will be higher copy I am afraid.
2. I do like to have some wine in the evenings occasionally. It seems that drinking wine is not gonna go well with Atripla because of nausea it may cause?
Now the side effects - I know they vary from one person to the other. At this moment, I am not too concerned. If one regimen becomes intolerable, I have no choice to change.
Any others which I should take into consideration? I would appreciate anyone who has experiences with the regimen to give me some suggestions/feedback.
Thank you and be well!!
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All things being equal, and assuming a patient doesn't have a resistant strain, my doctor uses either Atripla or Truvada/Isentress as his first line treatment.
In my case, there were a few motivating factors that went into starting me on Truvada/Isentress.
He was concerned about my ability to stay alert in the morning as I work in transportation. He also did not want me to experience vertigo in an environment that is constantly moving (and often suddenly). In addition, I have a history of anxiety, and though I did not know it at the time, I think this was a factor he took into consideration as well. Atripla, as I am finding out has an ingredient (Sustiva?) that has a brain-barrier crossing mechanism that sometimes causes CNS depression in some people prone to it.
I am experiencing no side effects from my I&T. I enjoy a glass (or two or three) of wine with my dinner [almost] every night. ;)
Assuming my lab reports show improvement, I will continue to stay on this regimen indefinitely.
-Jimmy
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Also, Jacken, what state do you live in? In addition to manufacturer's copay assistance program, my State (Washington) assists with copays either in part or in whole. You have to make under a certain amount, but I'd check into that as well.
I know paying for two copays vs one is a no-brainer, but you have other considerations.
-Jimmy
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Jimmy, thanks for your feedback. It seems that T/I are working for you well. Having a glass or two of wine could be a deal breaker. :)
At what time do you take them?
My prescription coverage has 20% copay. It is gonna add up in the long term. I did check but I don't think I am qualified.
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I have my alerts set for 10:30am/pm (figured on any given day working or not, I'd be awake), so for my morning does, I just do the Isentress and the evening I do the Isentress+Truvada.
If finance is your primary motivation, which I can't blame you for - that's quite the hefty copay, maybe having just one drug to worry about would be in your best interest.
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It is gonna add up in the long term.
In the long term we are all dead.
Seriously, though, does your plan have a cap on total co-payments? (most do, sometimes this is called an "out-of-pocket" maximum) If the co-payments from one drug plus your regular medical care will put you at the cap, having two co-payments won't add any additional cost to you.
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In my experiences...
I took Atripla on a full or empty stomach when I initially took it at night; food only made a difference for the first couple of weeks. I now take it in the morning with no noticeable side effects. I don't experience vertigo, 'brain cloud', emotional issues, etc from it.
1. I do like having one copay; with anything other than Atripla, I'd have two or three.
2. Atripla has never dictated whether or not or when I drank; it also never caused any nausea or other problems for me.
People have different reactions to meds, and you can't judge them by how you feel for the first weeks. In my experience, I can't even tell I take it 95% of the time. When I can tell, it's from the mild tinnitus that Atripla causes (in some patients). It's not particularly bothersome unless I'm in a totally quiet environment, which is not very often. Good luck with whichever you choose.
Now I think I should be moving from "newly diagnosed" to "living with HIV"
I am leaning toward getting meds and was recommended for either Atripla or Isentress + Truvada.
There are pros and cons which I like for each regimen. Obviously, one's cons are the other's pros.
Pros: Atripla - once daily, I&T - no dietary restriction
Cons: Atripla - empty stomach, taken before bed, I&T - more pills.
Personally, I don't think I will have a compliance issue. Once I make my decision, I will suck it up and stick to it. There are a few concerns.
1. Meds copay. My prescription coverage will have a copay of about $300-350 a month. I know there is copay assistance program for a year from pharmaceutical companies but it is not for a long term. I am aware of ADAP but I don't think I am eligible. With I&T, it will be higher copy I am afraid.
2. I do like to have some wine in the evenings occasionally. It seems that drinking wine is not gonna go well with Atripla because of nausea it may cause?
Now the side effects - I know they vary from one person to the other. At this moment, I am not too concerned. If one regimen becomes intolerable, I have no choice to change.
Any others which I should take into consideration? I would appreciate anyone who has experiences with the regimen to give me some suggestions/feedback.
Thank you and be well!!
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In the long term we are all dead.
Seriously, though, does your plan have a cap on total co-payments? (most do, sometimes this is called an "out-of-pocket" maximum) If the co-payments from one drug plus your regular medical care will put you at the cap, having two co-payments won't add any additional cost to you.
True but I guess I don't want to die soon so I am going to take meds. My coverage doesn't have out-of-packet maximum but have a cap of $10,000 allowable benefits. After reaching the cap, I will be responsible for paying the total cost. Not a very good news. Take Atripla as an example, my coverage will pay for $1350 for 30-day supplies, $16,200 a year. With about $340 copay each 30-day supplies, I will have to pay about $10,000 a year for the meds.
Does this sound right at all? I am really concerned.
David, thank you for sharing your experience. If I can take Atripla in the morning without experiencing significant side effects, it would be wonderful.
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David, thank you for sharing your experience. If I can take Atripla in the morning without experiencing significant side effects, it would be wonderful.
I actually started a.m. dosing by accident. I fell asleep on the couch one night and woke up around 5:00. My normal wake up time is 5:30, so I got up, realized I missed my meds, and took it then. What I did notice was the lack of funky, vivid dreams, which were the only real side effect I had. I had a really nice, peaceful sleep. I tried it again for the next dose, and things were fine again.
I've got to say... your med coverage sucks! I'd definitely see about getting some assistance from the drug companies. In fact, that might have a lot to do with which regimen I started. Again, one med from one company might be easier to manage.
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I only started meds about 9 months ago and it's I/T. I selected it for some of the reasons Jimmy cited, but not because of my profession. Thus far, it's been quite tolerable.
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I actually started a.m. dosing by accident. I fell asleep on the couch one night and woke up around 5:00. My normal wake up time is 5:30, so I got up, realized I missed my meds, and took it then. What I did notice was the lack of funky, vivid dreams, which were the only real side effect I had. I had a really nice, peaceful sleep. I tried it again for the next dose, and things were fine again.
Glad to know that it works well for you. It is unusual and not recommended to take Atripla during the day, isn't it?
I've got to say... your med coverage sucks! I'd definitely see about getting some assistance from the drug companies. In fact, that might have a lot to do with which regimen I started. Again, one med from one company might be easier to manage.
You can say that again. With $10,000 out of pocket expense, I might as well just pay for my own health coverage.
Thanks, emerald. It is good to know.
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True but I guess I don't want to die soon so I am going to take meds. My coverage doesn't have out-of-packet maximum but have a cap of $10,000 allowable benefits. After reaching the cap, I will be responsible for paying the total cost. Not a very good news. Take Atripla as an example, my coverage will pay for $1350 for 30-day supplies, $16,200 a year. With about $340 copay each 30-day supplies, I will have to pay about $10,000 a year for the meds.
Does this sound right at all? I am really concerned.
David, thank you for sharing your experience. If I can take Atripla in the morning without experiencing significant side effects, it would be wonderful.
Make sure you get the co-pay cards. Atriplia, Truvada and Isentress all have co-pay programs that will cover up to $200 to $400 of your co-pay each month. So if your co-pay for a 30 day supply of Atripla is $340, you will pay $140 after giving your pharmacy the Atripla co-pay card.
There are a couple restrictions for these cards. You can't live in MA, you can't have government insurance (TRICARE, CHAMPUS, Medicare, a Medicare Part D or Medicare Advantage, Medicaid, etc.) and you must have insurance coverage that pays for your meds (minus your co-pay).
Isentress Co-Pay card (up to $400/month):
http://www.isentress.com/raltegravir/isentress/consumer/coupon_for_isentress/
or
1-866-350-9232
Truvada Co-Pay card (up to $200/month):
http://www.truvada.com/pat410_copay_assistance_program.aspx
or
1-888-358-0398
Atripla Co-Pay card (up to $200/month):
http://www.atripla.com/copay-assistance.aspx
or
1-866-784-3431
You can get these cards from your doctor, or you can get them from the websites or phone numbers above. I take T&I and I got both cards by calling. Truvada can give you the card numbers to you over the phone and you can fill your script by giving the card numbers to the pharmacy. Isentress lets you print a card out, so again, you can just give the numbers to the pharmacist the same day. Not sure about Atripla as my partner got one from our physician.
The cards will need to be activated by calling the numbers above (Atripla and Truvada). It's a simple process of entering some info in their automated system, Zip Code, pressing 1 to agree to the terms, etc. This will need to be done once a year.
Yeah, your coverage sucks compared to mine. Find out what the cost is for 30 versus 90 day supplies. 90 day supplies usually have a lower co-pay than 30 day supplies do. For example, my co-pay for a 30 day supply is $25 for each of these meds. My co-pay for a 90 day supply is $63 for each of these meds (versus $75 for 3 30 day supplies).
You'll need to get your doc to write you a new Rx for the 90 day supplies.
So far, my insurance allows me to pick up my 90 day supply from the local pharmacy. Some insurance will require you to use their mail-order service. Using co-pay cards at mail-order pharmacies can be tricky and are sometime not accepted, but you should call before you assume they can't be used.
My partner takes Atripla, got a rash at day 7 for 5 days, has vivid dreams and feels slightly drunk in the morning, but these side effects are getting better.
I am on my 4th week of T&I. My second night of taking my meds, the back side of my left leg hurt like I ran 100 miles. It REALLY hurt! But that only happened on the second night. Since then, I have some minor muscle pain, mostly left leg, but nothing major. I think I've taken Tylenol 4 times to help the pain, but even that side effect is going away.
As usual, your SEs may vary as each person responds differently.
I think everyone else will agree; get a pill box and set your alarm. I also keep a 2 day supply on my key ring using a small drug fob container. You never know when you'll be stuck somewhere or you fly somewhere and you forget to pack your meds.
Good luck.
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Hi Jacken,
I take Atripla now since December, never had any bad side effects. I got the dizzy/drunk feeling for about 4 or 5 days, but that went away. you have to make sure you eat couple hours prior to taking the med, this is important at least for a month or so. I never got the rash, I do get the dreams but they arent that bad, I dreamed before I took the med. .
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1. Meds copay. My prescription coverage will have a copay of about $300-350 a month. I know there is copay assistance program for a year from pharmaceutical companies but it is not for a long term. I am aware of ADAP but I don't think I am eligible. With I&T, it will be higher copy I am afraid.
The co-pay assistance is not only for one year. The pharma companies have kept them going indefinitely. Of course they can stop it at any time but it's not like there is a one year limit. You do have to call them to continue on it after one year is up, it's just so that they can have an update, but they don't cancel you after one year.
The other thing to look into is how up to how much maximum they pay, since that varies. The Isentress one pays up to $400 per Rx. The Atripla/Truvada one pays up to $200. Thanks for the post, terex.
I'm on I&T and I love it, no side effects.
terex, maybe you should have your creatine kinase levels checked:
Isentress may cause elevated levels of a muscle enzyme called creatine kinase. Isentress should be used with caution by people who are at an increased risk of muscle problems like myopathy and rhabdomyolysis, which includes people using other drugs that cause these conditions. Contact your health care provider if you experience unexplained muscle pain, tenderness, or weakness.
LINK:
http://www.thewellproject.org/en_US/Treatment_and_Trials/Anti_HIV_Meds/Drugs_at_a_Glance_Isentress.jsp
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Glad to know that it works well for you. It is unusual and not recommended to take Atripla during the day, isn't it?
You can say that again. With $10,000 out of pocket expense, I might as well just pay for my own health coverage.
Thanks, emerald. It is good to know.
I'd say uncommon instead of unusual. Basically, you can take it in your sleep, if somebody forces is down your throat. It doesn't matter WHEN one takes it as long AS one takes it. If I were starting meds, I'd probably take it at night initially. Sleep tends to mask some of the side effects. For me, sleep is more important. If you search the forums, I had a thread on taking Atripla in the morning; quite a few do, though we're definitely a minority.
David
(who's zipping right along on an Atripla + caffeine buzz)
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Thank you, guys. Very helpful.
terex, my coverage only allows 30-day at retail. Co-pay is a bit lower for 90-day with online order. I will find out how co-pay assistance would work with online order.
Thanks again for the suggestions.
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Hi Jacken -
You have gotten some great feedback.
I sometimes feel like I should be the Atripla poster child -
I have had no side effects from it (other then the occasional Atripla vivid dreams - See other threads about this). I take mine in the evenings between 10 and midnight. After the first few weeks of taking the med, I was able to eat before taking it, drink before taking it, etc. with no adverse effects.
I have thought about switching to the AM - but I am so used to grabbing it before I hit the bed at night, that I would have to get myself used to the morning routine. I have no doubt that I would be able to tolerate it in the AMs though.
I am also on the co-pay assistance program. They never sent me a card, but when I called to enroll, they gave me my group, bin, and some other number, which I keep on me. When I pick up my script, the pharmacist enters that into the computer and the co-pay I pay is zero. (It would be $60 a month otherwise).
Best of luck with whichever med you decide to go with.
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True but I guess I don't want to die soon so I am going to take meds. My coverage doesn't have out-of-packet maximum but have a cap of $10,000 allowable benefits. After reaching the cap, I will be responsible for paying the total cost. Not a very good news. Take Atripla as an example, my coverage will pay for $1350 for 30-day supplies, $16,200 a year. With about $340 copay each 30-day supplies, I will have to pay about $10,000 a year for the meds.
Does this sound right at all? I am really concerned.
You are right to be concerned, but what options you take may depend on what else you can find out about your plan.
First, perhaps you might confirm with the plan that this is an annual cap -- in theory lifetime caps are gone under health care reform but you should check to be sure there is not some special exception for your plan.
If it is an annual cap, then the amount of the co-pays is not very relevant if you plan to stay there over a year, since either regimen is likely to cost more than $10K per year. Instead it might be better to look at your annual cost for either regimen and subtract the drug company assistance under either regimen. Your mail order plan probably has a website that lists the price they have negotiated with the manunfacturers (as "total cost" or something similar).
Then your costs would be the total drug cost minus $10,000 minus either $7,200 for I&T or $2,400 for Atripla (assuming the above posts have the current co-pay assistance right).
That's likely to be a high net cost remaining to you and you may want to investigate ADAP or see if you have an opportunity to change to a job with better health insurance. Stating the options baldly isn't meant to imply they are easy -- they aren't -- but sometimes they are feasible for some people.
Finally, even though you are frustrated, please don't just drop your health care coverage.
Under our totally messed-up health care system, just having health insurance is like having a medical care discount card. People with no insurance are charged the highest prices of anyone (often 3 to 5 times what people with insurance pay). Some providers don't even want to accept patients who do not have insurance. So if you can't find something better don't just drop this coverage without a backup. You are going to need routine medical care and your risk of needing nonroutine care is higher than it was before infection.
Best to you
A
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phildinfitlaudy and assurbanipal, thank you very much for your advice.
I think I will fine this year without going over 100,000. With the copay assistance, it is affordable. I am exploring other options given here in the thread.
I am leaning toward Atripla even though I&T's copay is lower and will try to take it in the AM.
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terex, maybe you should have your creatine kinase levels checked:
Isentress may cause elevated levels of a muscle enzyme called creatine kinase. Isentress should be used with caution by people who are at an increased risk of muscle problems like myopathy and rhabdomyolysis, which includes people using other drugs that cause these conditions. Contact your health care provider if you experience unexplained muscle pain, tenderness, or weakness.
LINK:
http://www.thewellproject.org/en_US/Treatment_and_Trials/Anti_HIV_Meds/Drugs_at_a_Glance_Isentress.jsp
Thanks, Inchlingblue. I went to my doc at 3 weeks after starting last week and he is running that test for me. I'll know the results on Mon or Tue. Hopefully it comes back normal.
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If feels good to find places like this where i see people in similar situation than me... makes me feel less vulnerable... I am 24 yrs old (male), have been diagnosed with HIV in June. Started medications this month (october), Truvada and Isentress. The first month went well, I was very surprised when the Pharmacy said my amount due was 0$ for both!! With co-pay and the savings card most of you are talking about. It gave me peace of mind and hope for the future... however yesterday i went to get a refill and they said my copay (from my insurance) for Truvada and Isentress was 1110.28 and 533.23 respectively... 200$ and 400$ off with the cupons; that still leaves me with almost 1500$ co-pay for both meds per month...
I am a full time college student about to graduate, have a part time job, outstanding student loans, and can def not afford that per month.
I have no one to turn to, so i figured i would give it a shot in this website. I am not asking for money, I am asking for ideas or suggestions as of what could i do next. I found out about ADAP (Which i will apply today), PPA (which i need my drs signature) and SUPPORT which is a reimbursement program for Isentress.
The part that makes me desperate is that my meds will last unitl this coming weekend... after November 1st i will not have more supplies and i dont know what to do, i know that if i stop taking them, they will probably not be effective anymore when i am available to purchase them again.
I am waiting until my insurance reps are open to give them a call and ask why did my co-pay increased so much in a month... does any of you have any ideas, suggestions?
I have no one to turn to, I have all the willingness and strength to fight for my life, but so many things at the time are overwhelming and I don't know how to deal with them...
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If feels good to find places like this where i see people in similar situation than me... makes me feel less vulnerable... I am 24 yrs old (male), have been diagnosed with HIV in June. Started medications this month (october), Truvada and Isentress. The first month went well, I was very surprised when the Pharmacy said my amount due was 0$ for both!! With co-pay and the savings card most of you are talking about. It gave me peace of mind and hope for the future... however yesterday i went to get a refill and they said my copay (from my insurance) for Truvada and Isentress was 1110.28 and 533.23 respectively... 200$ and 400$ off with the cupons; that still leaves me with almost 1500$ co-pay for both meds per month...
I am a full time college student about to graduate, have a part time job, outstanding student loans, and can def not afford that per month.
I have no one to turn to, so i figured i would give it a shot in this website. I am not asking for money, I am asking for ideas or suggestions as of what could i do next. I found out about ADAP (Which i will apply today), PPA (which i need my drs signature) and SUPPORT which is a reimbursement program for Isentress.
The part that makes me desperate is that my meds will last unitl this coming weekend... after November 1st i will not have more supplies and i dont know what to do, i know that if i stop taking them, they will probably not be effective anymore when i am available to purchase them again.
I am waiting until my insurance reps are open to give them a call and ask why did my co-pay increased so much in a month... does any of you have any ideas, suggestions?
I have no one to turn to, I have all the willingness and strength to fight for my life, but so many things at the time are overwhelming and I don't know how to deal with them...
That's quite a shock. I recommend you start a new thread with your topic since you are likely to get more responses.
Please keep us posted. Is there an HIV-specific organization (ASO) in your area? I recommend you talk to someone who knows how to work the system, i.e. a good social worker.
I'm still shocked when I hear these stories coming from people in the US.