My Hep Story
October 24, 2014
When people think of my medical conditions there tends to be a pecking order… HIV gets top-billing, then hemophilia (raise your voices, my fellow thinbloods!)… and at the end of the line is poor ol’ hepatitis. Hep allowed me to share my story about how hepatitis has affected my life on their Hep Stories page.
It’s been an interesting journey. As a kid, I forgot I even had hepatitis B because hemophilia cast a much bigger shadow on life. Then, as an adult living with HIV and dipping my toes into combination therapy, hepatitis C influenced my decision to take it easy on my liver and do a week on/week off schedule with my HIV medications. (Though I’ve been taking my HIV meds continuously and without interruption since 2013, I wrote about my week on/off strategy for POZ in 2009.)
See, there I go again. Linking to an article about HIV when this is supposed to be hepatitis’s time to shine. I better wrap this blog entry before hemophilia starts to get jealous, causing a spontaneous nosebleed or an erection that lasts for more than 4 hours.
Side Effects- To Change Meds or Not To Change?
March 16, 2014
Overall, I was happy with the results of my latest labwork. My t-cell count was good and my viral load was undetectable. And since last June, when I started on my paired down daily regimen of Prezista (800 mg) and Norvir (100 mg), I’ve felt pretty good: a lot less of the mental fog I’ve experienced on other meds.
But since June, I’ve had a few rough patches with hemophilia. In late July, I innocently slid into a booth at a restaurant and rammed my side into an exposed beam. It took about three weeks of treatments to get the bruising to subside. When my hepatitis B viral load spiked after enjoying 30 years of having no signs of hepatitis B problems- my doctors thought the new HIV drug regimen was the culprit. Turns out my mom’s hunch was right: that the blood product treatments, and not my HIV meds, were responsible for the hep B spike. After a few weeks of no no hemophilia medication, the hepatitis B viral load dissipated.
A couple months later I noticed a strange bruising on the outside of my foot. I couldn’t recall bumping it, and was surprised when the bruising got worse. Since I have moderate hemophilia, I usually can handle a moderate amount of bumps without them resulting in treatment. Fortunately, the foot hemorrhage was taken care of easily- one treatment at home and I was good to go.
Since December, I hadn’t had any problems until earlier last week, when I noticed blood in my urine. Never a good sign. Again, I treated at home, but contacted my local hemophilia clinic just to be safe. They suspected kidney stones and ran some labs- my clotting levels were normal (for me) and so was my kidney function. I’d looked up the potential side effects for Prezista, one can be the potential for more bleeding in people with hemophilia…
I really don’t want to switch medications. I like this regimen, but at the same time I don’t want to have to deal with another medical condition because of it. My initial plan last June was to go on the 800 mg of Prezista and, if it worked, take that down to a 600 mg dose. If the drug is the reason for this uptick in bleeds, then it stands to reason that less of the drug would mean less of the side effect.
I’m not too worried about giving this idea a shot, since it was part of my game plan to begin with. Basically, I’d make the switch from 800 to 600 mg, then get some labs done. If for some reason there’s a noticeable, adverse effect on my t-cell count and viral load, then I’d consider switching to another HIV medication. (If you’re curious about my decade of being on a structured treatment plan of one week on HIV medications followed by one week off, then read my Poz column about it here. It will shed some light on why I go outside of the box when it comes to HIV treatment.)
As is always the case for anyone reading this who is also living with HIV, it’s important to talk to your doctor openly about treatment options and side effects. I’m lucky to have a good relationship with my doctor, and feel very comfortable speaking with him about my concerns.
Adventures in HIV Medication Part 2: The Lab Results
September 11, 2013
I posted a blog entry in late July about my decision to switch from week on/week off treatment of HIV to a continuous regimen that consisted of a lower dose of HIV medication. Well, this week I got my 6-weeks-in lab results and….
There’s good news and bad news.
The good news is that the 800 mg of Prezista (with a 100 mg booster of Norvir) did it’s job in keeping HIV under control. My viral load remained undetectable and my t-cell count jumped from 508 in May to 659- my third highest count ever. But the confetti that was supposed to fall from above got blown out the window by the ceiling fans. See, my hepatitis B viral load, which has been long dormant, awakened.
Hepatitis B hasn’t been an issue for me since the 1980s, when my main priority was perfecting my backspin and searching for slabs of cardboard large enough to break dance on. I feel like I’ve been performing all of the classics this summer, especially after the big hemophilia conundrum last month.
So, right now I’m weighing my options. Either stick with the Prezista plan and add a component that addresses the hepatitis B dilemma, or just go back to week on/week off. I’m not completely bummed out by this result, though it was bit surprising to hear from “an old friend” in hep B. That’s because I haven’t really felt any different over the last 6 weeks, which proved to be a very hectic time filled with company, that big show and then dealing with that hemorrhage… I just felt like my tired old self.
I’m wondering if that spike in hepatitis viral load has been a culprit in my low energy levels?
That’s why I’m leaning towards altering my current treatment plan. Prezista is obviously working for me on the HIV front. If I add something to the mix to address the hepatitis B I may be good to go. Will definitely keep you guys updated- and I hope this message finds you healthy and/or happy. As tired as I’ve been feeling, I know it’s of the utmost importance to keep my attitude positive. If you’re dealing with a medical hiccup, try to remember that as well. I know it can be hard when you aren’t feeling your best, but it’s harder to maintain your health and do what’s best when you’re down in the dumps.
Post-Show Attack of the Hemophilia!
August 12, 2013
Me with Andy, Tony and Gopal of Bella Morte moments after the show (photo by Angel Miranda)
At the Infusion Center at UVA, about a week after the show. (photo by Gwenn)
So the big show on August 3 with my friends went well… very well! It was unbelievable how many people showed up- close to 400. There was such a great energy, it was by far the best show I’ve ever played or have been involved with.
The venue was very surprised by the turnout, too- we are all local (Synthetic Division, Lauren Hoffman and Bella Morte), but had quite a few in attendance who traveled great distances for the show. One couple drove from Massachusetts to Virginia. So many friends and strangers, from far and wide, made the night an unforgettable one. Included were my good friends from AIDS Services Group, who were kindly on hand to give out free condoms at the Synthetic Division merch table.
I got choked up a couple of times during the night- once on stage. The third song of our set, “Borrowed Time”, is about the notion of not knowing how long you have left… I wrote it about ten years ago, and as it started I thought about friends I’ve lost… and how lucky I was to be standing on that stage. There have been a lot of times in my life where things could have gone the other way.
The next time was during Bella Morte’s set. I scrambled up close to the stage and stood on the right side with my shoulder resting against the wall. This was Gopal’s first show in seven years with the band he helped found. As I watched him play, a memory came back of one of the first times I saw them play in the basement of Tokyo Rose. I went there sick, by myself, in my pajama bottoms… and leaned against the right-side wall. When that memory hit, tears just started to flow, and I let them.
Another unforgettable moment- the last song in my set was “Close To Me”, a cover of the Cure’s song. My goddaughter, who is almost 5, loves my version. Whenever the original comes on and Robert Smith starts singing, she asks. “Who’s that? Where’s Shawn???” It’s too cute. She was in attendance at the show, and I dedicated the song to her- which I kind of botched. After we were done, I heard that when the Cure song started my goddaughter- who was wearing protective headphones- tore off her headphones and listened to the whole song without them.
There are so many moments that were great, but those are just a few and I have to get to the aftermath at some point, so….
About five days before the show I bumped my side. It’s embarrassing, as many hemophilia-related injuries can be… I was out to eat with friends, there were five of us, and I got to the booth first and slid in… I didn’t see that there was a steel beam coming down from the wall into the booth and I slid right into it. It hurt like hell, but only momentarily. I knew it would leave a mark, and the next day a small bruise appeared.
After a couple of days I forgot about it.
A few days later was the day of the show, which includes hauling equipment out of your house, into the car, and into the venue. Then the show itself- which I hopped around onstage for and even engaged in a pratfall where I gingerly fell to the ground before leaping to my feet just in time for the last chorus. Later that night, when my goddaughter was ready to go, I helped carry her to the car…
Anyway, the day after the show my side was killing me. And that little bruise? Now it was huge. I ended up treating it with clotting factor at home- which I quickly ran out of. Then when I went into the hemo clinic to show my hematologist, she kind of freaked out over it. It’s been quite the adventure, not only treating this wound but also trying to get the mail order pharmacy to actually send me more clotting factor. So, this week I have more treatments lined up…
Which begs the question: was it worth it?
Abso-fucking-lutely. A little reality check after an unreal night seems cosmically appropriate, and I’m okay with that… the only thing I’d change is how the injury started. Sliding into a booth is pretty damn lame.
The night before our big show, Josh and I pose with Lauren before taking in some Yacht Rock
The view from the Infusion Center. I turned my bleed into a skyscape.
New Adventures in HIV Medication
July 30, 2013
In 2002 I made a decision regarding my HIV medications- I’d been on combination therapy for 3 years after receiving an AIDS diagnosis in 1999, and the HIV medication most certainly brought my health back. But at the same time, I was feeling the side effects and was concerned about long-term side effects.
At the time, I’d read a couple of things about structured treatment interruptions and heard Larry Kramer rant about HIV drugs at my friend Stephen Gendin’s memorial. Larry yelled, “I have no ass because of these drugs! We should all take our medication for one week, then take a week off so they get half the profits!” Needless to say, he was pissed off about more than just losing a friend that day…
I’m fortunate that my doctor and partner, Gwenn, were okay with giving a structured treatment interruption a try. I was quite relieved when my t-cell count continued to climb, even with a week off, and my viral load remained undetectable or very close to it. In 2009 I wrote a column for Poz about my experiences with week on/week off therapy. You can read it here.
All in all, I’ve been happy with the results of the experiment. But last year, it felt like time to try a new combination. So I switched from Norvir, Reyataz and Truvada to Complera, continuing the week on/week off schedule. After six months of experiencing changes in mood, from being more angry than usual to feeling depressed, I through in the towel and decided to go back to my previous combination. But the lack of energy on that combination- which was quite severe during the first week of July- left me a bit shaken…
I was texting with a trusted friend about all of this, and asked how he dealt with side effects. “I don’t really have any,” he replied. I followed up on email because I had so many questions, and he confided that he approaches HIV medications the same way I do, but has implemented the strategy a bit differently. Instead of a break from HIV medication, he takes less than is normally prescribed but doing so under the guidance and knowledge of his doctor.
Needless to say, I was intrigued.
So I spoke with Gwenn about it at length and once again huddled with her and my doctor, who researched the idea. We’ve all agreed to give it a shot, and for the last week I’ve been taking 800 mgs of Prezista with 100 mgs of Norvir. In about five weeks, I’ll be going in for lab work to see how things are going.
Am I scared to experiment with this? Not really. Partly because of the last ten years of how I’ve been taking my medications. In terms of effectiveness, every combo I’ve been on has done it’s job of attacking the virus and neutralizing its ability to wreak havoc on my health. I’m convinced that far better treatments- and possibly a cure- are on the horizon, and it’s not insane to think that could be ten to fifteen years off. But I’m not interested in sitting idly by- I know I have a great shot at being around for the next big breakthrough in HIV treatment, but I want to be in the best position to enjoy the time between now and then. I don’t like living in a haze, or feeling like I need a nap after a fifteen minute conversation with friends.
I know a large part of my health is simply the culmination of living with this virus since 1984. But I also know that decisions regarding treatment can also affect how I feel. And, simply put, in my heart and mind I know it’s time for a change. I don’t mind not having that week off from taking my pills, and am not worried about forgetting to take them every day.
I’ll keep you guys updated. Wish me luck, and I sincerely hope this finds you well.
A Discussion With My Doctor
June 10, 2013
At my last doctor’s appointment, I talked with my doctor about the recent “HIV cure within months!” headlines that were floating around online and also my decision to switch HIV meds. Part of that discussion is in this week’s Shawn and Gwenn video, as well as an exciting new “Paging Doctor Decker” segment…
Which might just be a flash in the bed pan. Time will tell!
Hope this finds you well.
Changing HIV Medications
June 5, 2013
My latest video is a bit more personal- it’s about switching HIV medications. Since I started on HIV meds back in 1999, I’ve switched 4 times, going on 3 different combinations, but never because the drugs weren’t doing their job in keeping HIV from replicating. It’s always been because of side effects.
And it’s always been an improvement- until last fall.
Of course, I’m thankful these pills have extended my life. But quality of life is very important to me, and I’m always going to be looking for ways to make my day-to-day existence an enjoyable one. Medications, for the most part, keep getting better and better, and I’m hopeful that the side effects because less of hindrance on our minds and bodies as we- the fortunate survivors of three decades of loss- move forward.
That was deep. Hope this little blog entry finds you well.
Baby Cured of HIV?
March 5, 2013