Unintended Side Effects Of PrEP

Damon L. Jacobs checks in with My PrEP Experience after 855 doses of Truvada as PrEP (more than 2 years.) Read earlier posts from Damon about his PrEP experience on this blog.

But what about the side effects?

Beginning the use of Truvada as PrEP on July 19, 2011 was not without some reservation.

Sure, I knew it could offer me an opportunity to feel more in control of my body and my health. Sure, I knew it could enable me to experience sexual intimacy without fear of HIV for the first time in my life. And sure, I knew it could enhance my ability to educate about safer sex practices as a therapist and an activist.

But what about the side effects? The prospect of having damaged kidneys did not thrill me in the least. Plus bone density reduction? I didn’t even know what that was! Nausea, diarrhea, abdominal cramping? Those were not the kind of adventures I welcomed. What about all the unintended side effects that nobody could predict? How was I going to deal with all that?

I was relieved to find during my first few weeks of taking Truvada that I experienced no physical side effects whatsoever. But what about the problems I wouldn’t be able to detect? What about the harm to my vital organs that I may not be able to sense? Was protection from HIV worth the risk?

For this reason, my doctor began the pattern of seeing me regularly, and drawing blood consistently. During the first year of using PrEP he saw me every three months. Beginning the second year he expanded it to every four months. By doing this he’s been able to monitor all my liver enzymes, kidney levels, and a bunch of other stuff that I don’t fully understand.

On November 20, 2013, I met with my doctor for my routine checkup. I had my blood drawn a few weeks earlier. As usual, this process was done with some trepidation on my part. Have I been damaging myself by using this medication? Am I willingly depositing toxic chemicals in my system? Am I sabotaging my organs for sexual pleasure?

After two years and four months (or 855 doses), my kidneys are fine. My organs are great. As a matter of fact, at age 42, I’m in the best shape of my life. How is that even possible?

As it turns out, taking PrEP has not only been a regular commitment to my physical health, but it has also prompted me to take active self-care measures in other areas.

Feeling protected from HIV helps me to feel more affirmative sexually. Feeling affirmative sexually gives me more confidence and energy. More confidence and energy leads me to exercise consistently and eat healthier. Exercising more and eating healthier gives me more strength and confidence. Having strength and confidence promotes improved mood, happier relationships, and more satisfaction in my professional life, which all positively impacts my physical health.

So have there been unintended side effects of taking Truvada the last two years and four months?

You bet!

It unintentionally has had an affirmative and healthy impact in every other area of my life. It unexpectedly has given me a sense of efficacy, empowerment, and freedom that has benefited my physical, emotional, and sexual well being.

If those are the side effects, I’ll be looking forward to a whole lot more!

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Damon L. Jacobs is a Licensed Marriage Family Therapist in New York City, who specializes working with individuals and couples in the GLBT community. He has spent 17 years treating issues related to HIV/AIDS, stress management, bullying trauma, grief/loss, social alienation, suicide management, care-taking fatigue, substance abuse, domestic violence, and anxiety disorders. He created and monitors the "PrEP Facts: Rethinking HIV and Sex" page on Facebook. He is also the author of the new book "Rational Relating: The Smart Way To Stay Sane In The Crazy World Of Love." Please contact at Damon@DamonLJacobs.com. 

 

Pozilady - "Since knowing about PrEP, I have been able to help my son's father remain healthy"

by Pozilady
Washington, DC

I am in my mid 30's and have been diagnosed since I was 18. I've been undetectable for many years now. I've had quite a few relationships since my diagnosis. Some rejections as well due to my status, but my disclosure allowed me and those individuals to remain very close friends with an insurmountable amount of respect for one another.

Nevertheless,  the delight of my story is I have birthed a son who is over a year old now and HIV negative.  His father remains negative as well due to Truvada! (And prayer!!!)

Originally,  we used Truvada for him as post-exposure prophylaxis (PEP) due to a failed condom,  but as our relationship grew stronger we mutually decided to PLAN to have our miracle child. See, my "Inf. Disease" doctor would always encourage me to have a child, stating "you are healthy,  what are you waiting for?" So, my partner and I talked it over with my OB/Gyn doctor and asked his advise on what to do in case of a mishap and/or when trying to conceive.  They both led us to Truvada.

Since knowing about PrEP, I have been able to help my son's father remain healthy,  it's is absolutely wonderful for many reasons.  It decreases the burden of possible guilt should one become negative on a count of me. Also, if we decided not to stay together as a couple we both could move on with our lives, and not feel forced to stay together because of a status.

Disclosure is hard, but it is a MUST. Having knowledge of your status, regular doctors visits and labs, keeping up with your numbers, staying on your meds and finally educating your partner is empowering!

 

VIDEO: "Love somebody" - Dakota is back with a vid on his first PrEP day

[Read Dakota's blog from yesterday - Alabama firefighter, paramedic and "pitcher" goes on PrEP.]

In the video, Dakota talks about all kinds of stuff regarding this first day on PrEP. Including having a rather "invasive" checkup before hand - with swabs going in all kinds of orifices. He complains about awful PowerPoints used for patient education. (can we get an AMEN?)  And he talks about how he has always made decisions that were appropriate to him and his life - not paying heed to the judgments of others.

Thanks for sharing Dakota! We look forward to following your journey ;)

Alabama firefighter, paramedic and "pitcher" goes on PrEP

by Dakota
Birmingham, Alabama
(with a shout out to the UAB 1917 clinic

I have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

About 2 years ago I started hearing about PrEP. I only gave it passing interest. As a health care provider (I'm a firefighter and paramedic), I was educated on PeP and even had to go through a course following a needle stick.

But for some reason didn't look into PrEP very much.

Recently I began thinking about it and finally made an educational appointment to learn more. After about an hour and half with a health educator I found out that my insurance does cover it and it's really not even very expensive. I have my first clinic appointment in a few days to be tested for HIV and will go to a group education session and then see a provider to get my prescription.

I'm really looking forward to the security this will provide. Candidly I will admit that I do not use condoms. As a "pitcher" I've always considered it a safer practice but have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

My decisions about condoms are personal and appropriate to myself, I make no apologies for my decisions and I respect opposing decisions. PrEP makes it possible to still have a layer of protection without the layer of latex.

I'm also looking forward to being able to help spread education about PrEP. I hope that everyone can find a strategy that works best for them.

 

[SLIDES] Nashville Gets PrEPared

Last night in Nashville, advocates came together for "Project PrEPare" - a forum including a group of community health advocates that came together at OutCentral to try and provide answers to the community’s questions about a new HIV prevention strategy called pre-exposure prophylaxis, also known as PrEP.

Below are the slides Mark Hubbard - a fierce and super smart prevention advocate - presented to an audience of more than 50 folks from throughout Tennessee. More info on the event here.

Project PrEPared Nashville - The Road to PrEP from tnmarkyBNA

¿Que es PrEP? - Learn About PrEP in this Spanish PowerPoint

Ques es PrEP - Profilaxis Pre-exposición - is a short PowerPoint in Spanish describing PrEP for the prevention of HIV.

The smart and fabulous prevention advocate Alex Barros of Miami (pictured) created this excellent presentation. Please take advantage of this great resource.

Alex can be reached at galexbarros at gmail dot com.

 

What is PrEP? Helpful info page from Fenway

The Fenway Institute has launched a very helpful info page on PrEP with simple fact sheets and short, concise, clear videos to help people better understand PrEP.

The video below is great start, laying out the basics in 90 seconds. Click here for other videos and info resources on PrEP from Fenway.

 

Poppy's Story - How A Magnetic Straight Couple Utilized PrEP for Conception

"When it came time to announce our pregnancy, we decided that we just wanted to come forward and tell the truth. We felt it was such a miracle that we were even pregnant that this child, and this process, deserved our honesty. So we told everybody. I took Truvada for a year and a half - and it worked."

A year and a half ago, My PrEP Experience featured a story from an HIV-negative woman, who we will call "Poppy", married to an HIV-positive man. The sero-discordant (magnetic) couple wanted to have a baby, and after a journey investigating various options that lasted more than a decade, Poppy chose to take Truvada as PrEP, to protect her from contracting HIV while still allowing her to conceive.

And guess what?

She stayed HIV-negative and got pregnant. Check out those toes up left - and that cute little mug to the right - to see the result of that pregnancy.

In this recording, Poppy tells her very compelling PrEP experience - from the beginning to a beautiful baby daughter, with features and characteristics from both her parents. Please take a few minutes to listen.

The recording is actually an excerpt from a webinar conducted on October 28, 2013 called "PrEP-ception: Sero-discordant couples using PrEP to reduce HIV transmission risk during pregnancy."

This webinar, the second in a series of webinars by the US Women and PrEP Working Group, discussed the possibilities and challenges associated with serodiscordant couples using PrEP to help them achieve pregnancy safely. In addition to a Q&A period, the webinar consisted of the following:

• Introduction: Overview of PrEP and the Role of the Working Group
  Dazon Dixon Diallo, MPH, Founder and President, SisterLove, Inc. 
• Defining the Need for Safer Conception Options: The Role of “PrEP-ception”
  Shannon Weber, MSW, Director, Special Projects, National HIV/AIDS Clinicians' Consultation Center, Bay Area Perinatal AIDS Center Coordinator
• A Framework for the Integration of PrEP
  Erika Aaron, CRN, Drexel University College of Medicine, Division of Infectious Diseases and HIV Medicine
• One Mom's Story
  Poppy

Click here for presentation slides, an audio link, and more information.

Click here for Poppy's recording.

[New CDC brochure] Take Charge - Talk to Your Doctor About PrEP

Are you HIV negative but worry that you may become HIV positive?

The U.S. Centers for Disease Control and Prevention have just released a super handy new brochure, designed for individuals who want to talk to their doctors about PrEP.

The simple, brief document includes various web resources and tips to help you prepare for your visit to the doc, plus things to do and ask during and after your visit.

 If you are thinking about PrEP for yourself, or if you have a friend or loved one who is considering PrEP, this is definitely something to check out.

 Download it here.

Physician with Poz Partner Chooses PrEP

via Greg
Chicago, IL

And speaking of protection, even though I'm now on PrEP and my partner has an undetectable viral load, we still use condoms as recommended.

I started taking Truvada for PrEP four weeks ago. 

My reason for wanting to take PrEP is pretty simple; my partner of five months is HIV-positive.  It's uncharted territory for me; I've never been in a relationship with an HIV-positive man in the past.  Out of respect for his privacy, I'm keeping this post anonymous. 

Although I work in the health care field as a physician, I'm not an infectious diseases specialist, and surprisingly, I was totally unaware of PrEP until I started looking at HIV websites earlier this year, in an effort to better understand the side effects of the medication that my partner is taking (Atripla).

After I mentioned PrEP to him, he admitted that he knew about of it, but that he didn't mention it to me because he had heard about all of the risks of untoward side effects.  He was actually "amazed" that I would consider taking it, in view of some of the bad press it has received.  I told him that I'd done a lot of reading about the pros and cons, and that I was comfortable with starting it. 

I had also inquired about Truvada for PrEP with a friend/colleague in infectious diseases who does treat HIV patients, and it was endorsed without hesitation.  I was told that I didn't need an infectious diseases consult to obtain a prescription, and that any physician could prescribe Truvada for PrEP.

So, I went to my primary care physician (PCP) and told him what I wanted and why; I had downloaded the PrEP checklist and agreement form, and brought them to my appointment.  I wasn't shocked, but I was a little disappointed that my PCP refused to write me a prescription for Truvada; he was not aware of PrEP (then again, neither was I), although he agreed that it was the right thing to do.  He repeated my HIV test (which was negative) and requested that I see an infectious diseases specialist in his network, which delayed the process a couple of weeks while I waited for an appointment.  Before I left the office, I handed my PCP a copy of the CDC Guidelines for Truvada as PrEP, which he appreciated.

I eventually saw the ID doc and was screened for hepatitis A/B/C (all negative), then prescribed Truvada for PrEP.  I had been vaccinated against Hep B as part of employment, but never had the Hep A vaccine, so that was also recommended. 

The only potential stumbling block left was insurance coverage.  I wanted to take PrEP, but I couldn't pay ten thousand dollars a year for it, if my insurance carrier would not cover it.  The drug was covered by my insurance (with a $30 copay each month), and I brought my bottle of blue pills home to start treatment. 

My ID doc recommended taking it at bedtime, but after a few nights of insomnia (totally uncharacteristic for me), I switched to taking it in the morning, which restored my normal sleep cycle.   Aside from the sleep disturbance, I've not noted any other adverse effects so far, and I'll get my bloodwork checked again at the 3-month point. 

I don't think there's anything unusual about my PrEP experience thus far, but I just wanted to share my story with the hope that more people will consider taking advantage of this extra layer of protection.   And speaking of protection, even though I'm now on PrEP and my partner has an undetectable viral load, we still use condoms as recommended.