I haven’t written lately despite learning so many things last week because I feel miserable. Emotionally, I’m still a rockstar, but I have felt physically sick for these past couple of weeks, thanks to this blue horse pill that I hope will prevent me from feeling like this for the rest of my life. There was a possibility that my doctors were going to take me off post-exposure prophylaxis (PEP) last week for fear that I was developing severe side effects, but even if the doctors had reached that conclusion, I would have fought to complete the course of my PEP regimen because as terrible as the side effects have been, the very remote possibility of developing HIV is far scarier. But, I’m getting a bit ahead of myself.
I was prescribed a four week course of Truvada when I was in the emergency room as a prophylactic measure against HIV. Truvada is a combination of two drugs, emtricitabine and tenofovir, in one pill, which is why I sometimes seem to contradict myself by referring to being on “these HIV drugs” or “this HIV drug”. Emtricitabine is a nucleoside reverse transcriptase inhibitor and tenofovir is a nucleotide reverse transcriptase inhibitor. These types of drugs are sometimes referred to as NRTIs and NtRTIs. Without getting into the science that I really don’t understand given that I’m not a biochemist, NRTIs/NtRTIs are supposed to prevent the enzymatic process that allows HIV to reproduce.
Truvada is lauded as being a bit of a wonder drug as it reportedly has fewer side effects than older HIV meds. There are even some researchers who are encouraging the regular use of Truvada among high risk groups (namely, men who have sex with men) who are HIV- as a pre-exposure prophylaxis measure, though quite honestly, given my experience with it, I certainly wouldn’t opt to take it if I weren’t in direct risk. (It’s also really expensive, around $26/pill.) Truvada seems to be a go-to drug for PEP if HIV exposure is a possibility because it is a combination of two classes of recommended post-exposure drugs, and at a dose of only once per day it has a higher patient adherence rate than other medication regimens that require multiple doses per day.* However, there is really no single drug or set of drugs that is prescribed in HIV PEP as there are a number of drugs and combinations that are possible. The CDC recommendation is a 28 day course of “highly active antiretroviral therapy” (HAART) beginning within 72 hours of possible exposure. The State of California recommends the same. The reason that the accepted PEP course is 28 days long is because animal studies indicate that a course of only three days is ineffective, a ten day course is effective only part of the time, and that a course of longer than four weeks does not seem to increase efficacy.
Anyway, I feel miserable because… first, it was the persistent nausea. Luckily, that is subsiding. Normally I would juice fast a couple of days a week but since “my incident” and being put on Truvada, I have been forced by necessity to eat solid food every day, and to snack regularly throughout the day to keep the nausea at bay. At first this was difficult because my stomach really didn’t want to accept all this food, but being human, it’s now gotten quite used to regular feedings.** Occasionally I have dizziness, and that’s probably the worst side effect of them all, but luckily the dizzy spells are short lived, and only tend to last 5-10 minutes. What I’m really struggling with these days are the round-the-clock headaches and the all-pervasive fatigue that borders on narcolepsy.
I’m only being slightly facetious when describing the extreme exhaustion as “borderline narcolepsy” because I am bloody tired ALL THE TIME. My body is dragging. I feel so weak. Every little thing seems to require extra effort. The headache just compounds it. Last Monday, I drank three energy drinks, an energy shot, and I still had to take a 30 minute nap- at work– just to make it to 5 PM.
I spend all my free time now cat napping. I’ve never been a very good napper but now I am napping all the time on the weekends and evenings because I simply cannot stay awake. I only have access to a fraction of my brain capacity right now. My eyes cross and go blurry all the time. I’m virtually useless at work except for the really mundane tasks. Despite having “quit” caffeine last year, I’m forced to drink it in mass quantities just to remain upright at my job. I cannot do arithmetic in my head these days, and have to keep bringing the calculator up on the computer to do the simplest problems. I have no attention span. My escape lately has been watching television shows, but I have to rewind constantly because I’ll realize several minutes on that I have no idea what any of the characters have said. It’s taking me literally two hours to watch a one hour program.***
Truvada is processed by the kidneys, so (sorry to get graphic) my urine output has been phenomenal. The dehydration is apparently compounding the headache problem. But, I drink water constantly…and I think you can imagine how this cycle goes. I’m freaking Niagra Falls. Luckily, the diarrhea subsided around the same time as the nausea, or else I can’t imagine how much harder my head would be pounding or how much sicker I would feel now. Though I am (graphic alert again), literally (literal alert again) taking a shit every time I go to the bathroom. (Yes, I could have worded that more politely, but really, why bother?) The laxative effect is still in effect, and maybe my regular snacking is what is keeping my bowels from going completely helter skelter on me.
I find a little bit of irony in that Truvada is a big blue pill. In The Matrix, it was the red pill that made you see reality, but the blue pill that allowed you to continue living in fantasy. To have Truvada prescribed, you are already enmeshed in reality, a reality where you may develop HIV or may have already developed it. You can’t get much more “real” than that.
I had my first (and so far, only) anxiety attack regarding “all of this” for about ten minutes last weekend. For some reason, my extreme exhaustion hit at the same time that springtime allergies hit our area. I slept for three and a half to four hours solid both Saturday and Sunday afternoons. This is not normal for me at all. I only sleep like this when I’m sick. That voice I’ve kept at the back of my head since my assault must have felt extra ballsy because I thought, “What if these are the ‘early flu-like symptoms’ that people experience soon after HIV exposure?” I shot off a couple of emails to my PCP (Primary Care Physician) and started researching Truvada and PEP post-sexual assault online. I relaxed a bit after reading a few points like, even if my attacker was HIV+, I still have only a slight chance of contracting it; or that if I complete this cycle of PEP, numerous observational studies indicate I should be fine.
My PCP is a family doctor and really doesn’t know much about HIV. I wondered this when she told me to wait six months before getting my next HIV test when she called the morning after my E.R. visit because I thought that sounded a bit antiquated. She couldn’t answer my questions, so instead referred me to an infectious disease expert and my new ally. “Sue”, a nurse practitioner in the infectious disease department at Kaiser, called me not once, but twice, of her own accord and added herself to my practitioner panel so that I could easily email her questions. After ascertaining that I am most likely not developing lactic acidosis from Truvada, she admitted that the early side effects of Truvada feel exactly like the flu. Oh joy! So, Truvada does have fewer side effects than the traditional HIV meds, but it takes six-eight weeks of continuous use before they normalize. Since I only get to experience the joy of Truvada for four weeks, I’m suffering all the side effects.
As she is an expert, I wanted to know why I wasn’t given a more rigorous PEP regime in the emergency room. PEP in the U.K. as well as in other states here very often includes an additional drug, a protease inhibitor, in addition to the two NRTIs/NtRTIs. True, the standard PEP when the risk of exposure is unknown is exactly what I got: a four week course of Truvada starting within 72 hours of potential exposure. However, the standard PEP if there is assumed to be a high risk (assailant is HIV+, is known to have sex with men, or is an intravenous drug user), is Truvada plus Kaletra (another single pill combination of two drugs: lopinavir and ritonavir) or an even newer recommendation of Truvada plus Raltegravir (brand name: Isentress). I wanted to know why I wasn’t given this regimen, despite not knowing the status of my attacker, precisely because we don’t know the HIV status of my attacker. I would have preferred to tread as cautiously as possible. Of course, I only read up on HIV PEP 10-14 days after my attack, so it would have been too late to add another drug to the mix. HIV PEP procedure needs to begin within 72 hours, though I have read a couple of sources that will prescribe PEP up to five or seven days, but with the disclaimer to do so goes against standard guidelines and is probably much less effective. (Experts claim that HIV will have reproduced just enough times within the system to render PEP procedures moot after just a few days. Animal studies indicate that HIV takes about three days to reach the lymph nodes and five days to reach the blood cells. This is why starting PEP as soon as possible is crucial.)
Sue said that I should rest assured that I was given exactly what the CDC recommends, and that additional drugs could have increased side effects. Kaletra supposedly increases complaints of diarrhea, for example. However, it seems that Isentress is better tolerated, and adds no additional side effects other than those experienced by Truvada anyway, but as the studies involving Isentress are newer (the abstract I linked to above was published only last month), perhaps this knowledge hasn’t filtered through to the CDC. Besides, the CDC have not updated the HIV PEP guidelines since 2005. (But a lot of research has been performed since 2005…?) Standard guidelines in the U.K. for post-sexual assault PEP are Truvada plus Kaletra, and apparently France follows the same. The recent studies and reports about Truvada plus Isentress demonstrate equal effectiveness, and with fewer side effects.
Though, Sue did set my mind at ease. She even had to take a four week course of Truvada once, so she could sympathize with what I was going through. She suggested that I not drink acidic drinks (no juice, damn), and avoid spicy foods (the day after I had Indian food for dinner, ha!) to see if that improves the side effects. She also encouraged me to drink more liquids, but I already drink more beverage than anyone I know. She should have reminded me not to drink alcoholic beverages while on that call- even though I’m not drinking at all right now- because Truvada can be pretty hard on the liver.
Although I do feel much better mentally in regard to my PEP regimen, had I known as much as I know now, I would have insisted on Kaletra or Isentress in addition to Truvada when I was in the E.R. I’d rather be safe than sorry, and I would have wanted as many weapons in my arsenal as possible, even with the chance of increased side effects. So, that’s my take-home lesson of this blog post. If you suspect you were possibly exposed to HIV (through unprotected sex, sexual assault, a needle stick, or because of sharing needles or a condom break), you need to go to the E.R. and start PEP as soon as possible within the first 72 hours. Insist that they give you either Kaletra or Isentress in addition to Truvada, if those options are available.**** Make sure that you are satisfied with the care you have received and understand fully how you are to follow your PEP regimen. You might have to consult with your pharmacist when you pick up your meds if you are unclear about anything, and make sure they give you printed information for all drugs you received so that you can refer back to the literature later if you are having unusual side effects. There is the potential that some side effects may be life threatening, so be sure to pay attention to your symptoms and do not hesitate to ask questions or seek medical attention if necessary.
Needless to explain, I’m not a medical professional and this blog post shouldn’t be taken as absolute advice, though personally I wish I had read this before my emergency room visit so I could have been a better informed patient.***** At the very least, had I read this at the beginning my PEP course I would have had a much better idea of what I had in store: headaches, fatigue, the attention span of a goldfish…
Ahhh…just a bit longer. I can nearly see the bottom of that pill jar now.
*The CDC document “Antiretroviral Postexposure Prophylaxis After Sexual, Injection-Drug Use, or Other Nonoccupational Exposure to HIV in the United States” actually says, “Adherence to antiretroviral medications can be challenging, even for 28 days. In addition to common side effects such as nausea and fatigue, each dose reminds the patient of his or her risk for acquiring HIV infection. Adherence has been reported to be especially poor among sexual assault survivors. Steps to maximize medication adherence include prescribing medications with fewer doses and fewer pills per dose…”
**(If, however, my stomach starts calling me “Seymour”, all bets are off.)
*** (I’m not a person to misuse the term “literally” in place of “figuratively”. This has actually happened a few times in the past week alone. I’m not counting all the times I have to pause to snooze in the middle of a program either. I am figuratively a space cadet. See what I did there? I’d laugh at myself for typing that except I’m too tired to exert the energy. Even this very post has literally taken me days to write. Man, that deserves a knee slap…but maybe I’ll get around to it tomorrow?)
****If your clinic will not give you Truvada, Combivir and Kaletra is also a frequently prescribed combination with a high success rate. Both meds are also a combination of two drugs, though Combivir is an older drug combination that contains AZT, the first drug approved in the United States for HIV/AIDS treatment. It may have harsher side effects than Truvada, but it might be cheaper, so take this regimen if it is the only option they are offering you. This course is consistent with World Health Organization (WHO) guidelines. Note: the link directly above, is also an excellent FAQ regarding post-sexual assault PEP.
*****I also recommend this source regarding HIV PEP in general: this page details your various options- the pros and cons of electing a PEP course, the different combinations of PEP regimes, the different classes of drugs in PEP regimes, the likelihood of infection, ect., though the information presented here is much more dense than the FAQ linked above.