Busy Week, But Still On Track

[T-Plus 19 Days.]

I can't believe it's been nearly a week since I last posted! What a week it's been, too; between work, starting another semester of grad school, and adulting the crap out of my day to day chores and stuff, I haven't had a lot of time to post. I have been keeping up with my adherence thoough. Check it out:

Keepin' on track.

Bam! Okay, so the "monthly" adherence bit is a little misleading, since I started PrEP on January 12th, but still, even with a super busy week, I've managed to keep on track with my daily dose every single day so far. Being this busy has made me pretty thankful for that emergency pill bottle I put together, though! I refilled it twice this week; four out of the last five days I've taken my Truvada away away from home, whether at class, at work, or out with a friend. In class, I talked to my professor in advance, and just let her know that I had a medication I have to take at 7pm each day. She was totally fine with it, and I was able to take my pill in class on a break she offered right around dosing time (you can see it there on Thursday, in the picture above). So, pretty proud of myself for keeping on schedule. 

The funny thing is, getting myself organized around taking my PrEP every day has helped my adherence to my Lisinopril (a blood pressure medication) tremendously. Maybe it's just that the app is making me more aware of my dosing times, but I think there's more to it than that; I think that the motivation I've had to get and stay on PrEP has encouraged me to be more engaged with my health overall. It's a good feeling. So is having a consistent, guaranteed appointment for HIV/STI testing and labs - I've always been a fan of knowing about my health... and TERRIBLE at scheduling... so having something mandatory and predictable is fantastic.

Hey, and my side effects are just about completely gone! I gotta say, it was kinda crummy those first couple weeks, building up protection but not feeling good enough to, um, use  that protection. Look, I know what you're thinking, I can hear the "Truvada whore" comments starting to bubble up, but I'm being honest here; I want to get laid. Um, duh. Not crazy, run-to-the-bathhouse and f*ck ten guys kinda laid, but something. And it sucks not feeling like it. But two weeks worth of feeling a little off is nothing compared to the alternative. So, I'm not complaining.

Cheers, friends.

Calculating Risk

[T-Plus 13 Days!]

Normally I save these sorts of things for Truvotter PrEP School's Facebook page, and in fact it's up there too, but the tool I'm linking to below is really worth a look.

Gaily Grind Sexual Exposure Calculator

What is it? It's a calculator that estimates the number of people you've been sexually exposed to in your life. Remember, most partners that most people have been with have themselves been with some number of people before them. It's not shameful, it's a fact of human sexuality! It's an important thing to be aware of, though, because it says something about sexual safety and risk; namely, the more partners you've had, and the more partners they've had, the more likely you are to have been exposed to sexually transmitted infections.

All this doesn't necessarily mean that you have to have fewer partners! You can have as many happy and consenting partners as you'd like, as long as you're taking the appropriate precautions for the level of risk you're taking. In general, if you're engaging in riskier behaviors and/or with more partners, it's best to use more layers of protection - whatever options work best for you (and your partner). Regular testing should always be part of the equation, but beyond that, it's up to you.

This was a big part of my decision to go on PrEP, but also a big aspect of the stigma that's still attached to both HIV and PrEP, especially among the gay community. Many of you may have heard the term "Truvada whore" - a gay guy whose supposed sole goal for getting on PrEP is to go completely nuts and f*ck every guy he can find with no condoms. I'm a generally pretty quiet guy, but more than a few people have asked me outright if some version of that is why I got on PrEP.

The reality is that sure, there are probably a few people who get on PrEP mainly so they can spend all day at the bathhouse without packing a stack of rubbers. But so what? Sure, it's not the smartest move - PrEP only prevents HIV transmission, it doesn't touch syphilis or herpes or gonorrhea - but that person is still taking some responsibility for their sexual health and that of their partners. If they're being adherent to their Truvada, and getting their regular tests, then they can be pretty darn sure they aren't becoming positive, and that means that their partners aren't either.

Besides all that, though, the reality (at least that I can say anecdotally) is that the majority of people who get on PrEP are already looking out for their sexual health in one way or another, and are simply looking for a greater degree of security. I personally don't take a whole lot of risk in my sex life (I've had plenty of partners, but I generally insist on condoms, I talk about safety with them, etc.,) but for me, PrEP is still important. The risk of becoming HIV+ is a reality in the world today, especially for sexually active folks. I chose to get on PrEP because to my mind, my level of risk was enough to make it worth it. Given that it's free (for me, so far), and that there's work still to be done before we reach a cure, I feel an obligation to take this level of responsibility to look out for myself and whoever I sleep with.

Thanks for humoring my little soapbox here - I knew the myths surrounding PrEP going in to this process, but it's been fascinating and a little frustrating sometimes to encounter them face to face.

Cheers, folks!

Day Twelve - Protection Up, Side Effects Down

[T-Plus 12 Days.]

Twelve days in now, which means I'm getting close to half way through my first month on PrEP. I've taken my doses on time (well, within about 45 minutes of my alarm) every night so far, and at this point I should be very, very protected from infection; for the most part, things have gone smoothly, but the nausea I was experiencing at first lasted a bit longer than I expected, and I've gone for about a week with some mild indigestion. Not fun, but not debilitating at all, and my appetite has been fine. On the upside, it's been getting better daily, and my doctor explained that most side effects pass within a month.

In terms of adherence, I've been digging into the MediSafe app I've been using a little more. There are several handy features that I've found beyond the ones I described in my previous post; you can see a lot of those features in play in the picture below:

MediSafe adherence app.

There are a few things going on here. The app tracks my medications in a virtual "Pill Box" each day. If I click on a medication, I see a box like the one pictured above, displaying the next scheduled dose of the medication that day, dosing instructions/preferences, the number of remaining pills (which I've set in the Profile portion of the app), and when I have my refill reminder set (in about two weeks as of this posting). The app also lets me enter my prescription numbers, which is handy when I get texts from my pharmacy for automatic refills, since that's the only identifier I gen in them.

I haven't had to use a pill from my emergency stash yet, but I expect I will soon; I'm taking an evening graduate course each week this spring, and it generally runs past my dosing time. I could wait until I get home afterwards, but I'd rather stay as consistent about my timing as possible, so my plan is to speak with the professor and ask permission to step out for a moment each night. I don't need to tell her what specifically I'm taking, but I can explain that it's an important, time-sensitive medication. Schools in the United States are generally expected to make minor accommodations for health and wellness, so this should be adequate. If you're a student as well, don't be afraid to ask for permission to go take your PrEP when it's time! It only takes a moment, and by speaking with your professors, you should have no trouble keeping your dosing schedule punctual and consistent.

Cheers, folks!

Day Eight - First Week of Protection

[T-Plus 8 Days.]

Eight days and eight pills in, and I think I'm starting to get myself on a routine - I've been using my app to track my adherence (it's actually kinda satisfying to be able to look back at see "100% Adherence" on my medication report), and so far I've managed to take my meds within about 30 minutes of the reminder I set (currently 7pm, or right around dinner time so that I have something in my stomach when I take my dose).

Truvada doesn't have to be taken with food - Gilead points out that "food does not affect how Truvada works" - but upset stomach is one of the most common side effects of the medication, and I have a sensitive stomach, so I'm all about taking precautions - remember, if you throw up a dose you just took, that dose is lost. If you caught some of my previous posts, I had a couple of rough mornings a couple of days in (this past Friday and Saturday) when the nausea was worst, but since then that's passed, and this morning I felt pretty normal (for whatever that's worth...).

So now the trick is gonna be keeping up this new routine; I'd like to be able to go into my first follow-up appointment having taken every one of my pills on time. This has a couple benefits for me: if nothing else, it means I've been as protected as I can be for the entire past month, but besides that it also tells me that my kidney function labs (which they'll draw at that first follow-up) will be as accurate as possible. It doesn't seem likely at this point that the Truvada has been hurting my kidney or liver function (I'm not experiencing jaundice, or any other sign of renal failure), but ya never know until you check.

Week one of meds went great - here's hoping the first week of protection goes at least as well.

Cheers, friends!

Day Six - Achieving Protection

[T-Plus 6 Days.]

Took my sixth pill last night, which means today is the sixth full day of Truvada (PrEP) in my system. This means that sometime between today and tomorrow, I should reach the peak level of Truvada in my system, and thus peak protection from HIV infection (current research suggests it takes about 5-7 days for the body to build up enough of the meds to provide maximum protection). So, um, woohoo! 

This is why keeping up my adherence is such a big deal though. I know I said it repeatedly in my last post, but I don't think I can emphasize enough how important it is to take my PrEP every single day. Because a level of the meds persists in my system for a while, I can miss a dose here and there and still be well-protected, especially once I've been taking it for a while. This is a good reminder that I don't have to freak out if I forget a dose from time to time, but it's not an excuse to be bad about my dosing! It's really easy to get "too busy" or whatever, but if I'm missing too much, then I'm not protected.

So I've taken up a couple of habits to try to keep my adherence up:

First off, I downloaded an app that helps me track my meds and my adherence. The one I opted for is called MediSafe, but there are loads of others (perhaps sometime soon I'll start assembling a list of other apps in the Resources tab).

Pictured below, MediSafe allows folks to do a number of things that help stay adherent. When you first open it, it asks for a list of your medications, as well as their dosing instructions. You can edit this list whenever you want, and it also lets you add medications you take "as-needed", such as aspirin or antacids. After that, you have your daily "pill box", which displays all of each day's medications, quartered off by time of day that they're supposed to be taken. Each medication that you take on a regular basis comes with a reminder, and those reminders can be customized; I personally love the Star Wars-themed "medtone". Over the course of time, MediSafe tracks your adherence, and it can generate reports in a couple formats (including Excel spreadsheets) that you can export and email to, say, your doctor.

MediSafe adherence tracking report.

The second thing I did was to make an emergency to-go bottle of my most important medications, so that I always have some doses with me - there's always the chance that I'll spend the night at somebody's place... or maybe work really late or something. I used a small pill bottle from an old prescription, and taped my own label over it with a list of the medications in there and their colors (I suppose that's a little bit obsessive, but I want to be sure that the pills aren't mistaken for something else if it's ever found by, say, airport security or something). You can see a picture of it below.

  

My emergency to-go medication bottle.

So that's it for now. I've been spot-on with adherence for the past week, and hopefully I'll stay that way. I had a couple of rough patches in the mornings on Friday and Saturday (I got pretty nauseous both mornings, but both days it went away within a few hours, and since then it's been getting easier each morning). I'll check in again soon. If you're reading this, please feel free to post comments and questions - I'd love to answer what I can!

Cheers, friends!

Two Days In - Pill Three Mini-Post

Update - I took my third dose of Truvada tonight. So far I've taken it with food, but tonight I didn't think, and took it before dinner. That was definitely a mistake - the really mild upset stomach I had all day kicked up a notch or so tonight while I was having dinner with a friend. Don't worry, nothing bad happened, but my appetite dropped, and now my stomach's pretty twisted up. Boooo! So um, food before PrEP from now on, definitely.

Two Days In - Side Effects and Adherence

[T-Plus 2 Days]

Two days and two doses into my first month of PrEP today. I took my first dose the night before last, and yesterday was pretty normal - no headache, no nausea. I thought I might have gotten a little dizzy that first evening, a couple hours after I took my first dose, but it could have as easily been that I was just tired.

Today was a slightly different story. Took my second dose last night (no dizziness afterwards), and woke up this morning with a slightly sour stomach. It wasn't much, just a little a little extra rumbling and a little lower appetite (which came back fast a couple hours later). The indigestion has persisted through the day, but it's still low-grade, and doesn't seem likely to get any worse.

My doctor prepared me for this possibility (and of course I had done my research about side-effects in advance); my doctor explained during my most recent appointment that if I experienced any nausea after starting PrEP and was concerned about it, he could prescribe medications to help. So far, I don't think that's going to be a concern, but it's good to know that there are options. As it is, my doc and my research all explained that typically any side-effects don't generally last more than a month.

It's really important to note here that if you're taking Truvada (for PrEP or otherwise), you should always consult with your doctor before adding another medication, including over-the-counter meds and even for side-effects. This is because Truvada, as with many meds, has some potential interactions with other medications (though in the case of Truvada, those are fairly few). A doctor familiar with your health and medication history can suggest the best options depending on the side-effects you're experiencing.

Okay, so I'm coping with the minor side-effect. Next step is adherence.

[Adherence describes how consistently a person takes their prescribed medications or treatments on-time. In this situation, "on-time" is generally accepted as being within two hours on either side of one's regular dosing time - so if you take your medication at 9pm normally, then as long as you're taking your next dose between 7pm and 11pm, you're considered on time. If you're consistently taking your doses on time, without missing, every day (in the case of Truvada), then you're considered fully adherent.]

Adherence can be tough. Life gets freakin' busy sometimes... which unfortunately means that things get forgotten, including medications. I've been guilty of this plenty - I'm supposed to take a blood pressure medication every day, but for a long time, I'd miss or nearly miss as many as a few doses each week. Not good. For both the blood pressure meds and Truvada, I need to have what's called a "therapeutic level" of the medication in my system for it to be properly effective. In the case of Truvada for PrEP, the more doses I miss in a week, the less protected from HIV I am. So yeah, adherence is super important.

Right now it's early in the process - I'm still pretty excited to have gotten on PrEP (I think I will always be amazed that I live in a time when something like this is even available) - so my adherence is probably going to be great at first. It's fresh in my mind, too. The bigger deal is keeping that up, because as I said before, the more I miss, the less protected I am. Perfect adherence is the goal. That doesn't mean I can't miss sometimes (it's pretty likely I'll miss a dose eventually), but I've gotta try to take it as consistently as possible. As it is, my doctor explained that I won't have a protective level in my system starting off for somewhere between five and seven days, so I really can't miss early on.

There are lots of ways to help with this. One suggestion I've gotten repeatedly is to use a weekly or monthly pill box; this lets me parcel out my meds for easy access, but also has the benefit of letting me track missed doses easily. The problem is I'm terrible at keeping up with those, not to mention I like having my medications in their bottles so if I have to travel with them, they're right there with all of the important prescription information. Other folks have suggested using a calendar near where I store my meds, but I'm terrible with (paper) calendars, too (you should see my office at work - I think the wall calendar there is on September of last year...)

The best bet for me has been to use either a reminder in my phone, or an app that lets me organize my meds. Both work really well for me, especially since I keep my phone with me more than any other calendar. For me, the apps are best, because they allow you to track missed doses in the same way a real pillbox does, but of course you should find a system that matches your schedule and preferences; the apps offer the most detailed adherence tracking, and can even let you transmit that information to your doctor, but as with any digital medium, there are potential privacy concerns that might turn some people off of apps. Whatever system works, take your meds!

And that's it for now. I'll check in again in a couple of days - with any luck the upset stomach will have faded by then!

Cheers, friends!

T-Minus NOTHING!

[T-Minus 0. ZERO!]

Cheers, friends!

So, in many ways this post is long overdue; I even considered splitting it into parts briefly. A lot has happened since my last post!

Alright, so last week I snagged a Gilead copay assistance card (you have to get one and activate it beforehand, so that when you go to pick up your script, they can apply the additional assistance). Of course, I promptly forgot that I took one, and so it lived in my bag, totally inactivated, until yesterday. Yeah, I'm a horrible procrastinator. 

SO, yesterday I pulled it out and finally called. The process was super easy - a series of automated menus, and a few prompts for my name and phone number, and then it was active. Easy! The whole process took me about 7 minutes. I'm so glad I did it, too - but I'll get to why in a second. There's one really important thing to know about the copay assistance program: it is not available for people on Medicaid/Medicare, or anyone receiving any sort of state or federal assistance (such as participating in a state-run Drug Assistance Program). Gilead's program is specifically designed to make their medications accessible for those who can't get other assistance - those without insurance, those whose insurance doesn't cover Truvada (or does, but at an extremely high copay, as mine does), and so on. Make sure that you know all of your options for assistance before you plan to start filling scripts - there is no reason that any person should not be able to get Truvada for PrEP (or for HIV treatment) because of cost. Period.

Okay, so copay assistance card, check. That done, I went to my follow-up appointment with my doctor yesterday afternoon. I'd already gotten the results of my initial labs (an HIV test and liver and kidney function panels), which all looked good (no HIV, liver and kidneys doin' their thing), but in order to get on PrEP, standard practice is to perform a follow-up (confirmatory) HIV test. They took some blood, and I headed home; my PCP had explained that he should have the results the next morning, and that if they were clear, then he'd call in the prescription. 

This afternoon, I got a text from my pharmacy that I had a prescription waiting. When I got off of work, I ran over and picked up my prescription (copay card in hand). Remember I mentioned that I was really glad I'd activated that card? Well, the reason why: my prescription was free. Yep, totally free... after insurance and the copay assistance, I walked out the door with a month's supply of HIV prevention with as much little money as I had when I walked in.

Not everyone is going to get their meds for free - even the best insurance and discount programs have some limits. I have decent insurance, so my copay was high, but still low enough to be completely covered by the copay card. Still, given the variety of programs available, there are options to make Truvada affordable for virtually anyone.

Well, so there it is! I took my first dose tonight with a glass of chocolate milk (Truvada can cause nausea for some, so many people recommend taking it with food). Over the next several days, I'll update y'all about my experience beginning to take PrEP, especially any side-effects.

Cheers, folks!

Happy New Year

[T-Minus 7 Days!]

Well, it's 2016... Happy New Year! Sorry for the brief pause during the holiday season, but this otter's back in business, and down to ONE WEEK until I get my first PrEP prescription! This is, of course, dependent upon my confirmatory negative HIV test, but I'm feeling pretty good about that - this has been a pretty tame holiday season, all around.

Still, one week til I get my first script means that I have some serious preparing to do. First of all, I need to think about cost. As I've mentioned in the past, Gilead has a fantastic copay (and even retail-cost) assistance program, which will help me defray some of the costs of the prescription. but it's best to get that all set up well in advance of trying to fill your script. I haven't actually called yet, so that's going to have to be my main priority this week. Besides that, it's relatively smooth sailing, until I actually start the meds in about a week. Then... we'll see! Most people don't report a lot of side-effects, but they're certainly possible. I'm a little anxious about it, but not enough to stop this process, for sure!

Over the next few days, I'll detail the process of getting signed up for copay assistance and what covering the cost might look like.

Cheers, friends!