Are Side Effects the Price to Pay for Having HIV?
Part of the Series Other Sides of HIV: People Taking HIV Meds Share Stories About Side Effects
August 1, 2014
I became infected in early 2003 and I was diagnosed with HIV in June 2005. I didn't start taking meds until February 2010 and my doctor, of course, prescribed Atripla [efavirenz/tenofovir/FTC] -- very common.
Like so many others, the side effects were prevalent: dreams, dizziness and drowsiness during the day. Nothing special there; you've read that countless times! What I told myself was that I was going to adhere to this drug and soldier on. I drank coffee, I exercised, and I tried to meditate and concentrate on the task at hand at work because I needed the job I had because of the great health plan it offered. I felt fortunate to have access to the drug and to have started at a point where my CD4 was around 350. After several months of adherence, my viral load became undetectable and my CD4 climbed to within a normal range.
I thought that the side effects of Atripla were the price I had to pay for having HIV, for having let my guard down, for having failed. I really felt that I didn't deserve a normal life of not feeling tired, dizzy or depressed. I lived with low-level depression that more or less kept me down: I wasn't extremely depressed to the point of sinking further, but I wasn't really living, either.
In October 2013, I read an article on TheBody.com about patients switching from Atripla to Complera [rilpivirine/tenofovir/FTC]. I gathered the strength to print a copy and ask my doctor what he thought. He agreed to allow me to try it. It took a lot of courage for me to muster the "audacity" to ask him for something. I suppose I had "hit bottom" in terms of feeling shitty. I had had enough!
I feel so much better on Complera than Atripla. But I don't regret the period of nearly four years where I was depressed. In a way, the depression taught me a lot about myself and about how I can endure, and I developed a great deal of compassion for others, especially for those who are not privileged.
Want to share your "Other Sides of HIV" story about dealing with side effects, good or bad? Write out your story (1,000 words or fewer, please!), or film a YouTube video, and email it to email@example.com. In the coming months, we'll be posting readers' "Other Sides" stories here in our Resource Center on Keeping Up With Your HIV Meds.
Read other stories in this series.
This article was provided by TheBody.com.
Comment by: Ivan Budjak
Mon., Dec. 14, 2015 at 8:19 pm EST
The author of this article should strongly reconsider bleeding their apparent undealt with guilt and shame around the subject of having hiv before propagating such an opinion as strong as people who carry hiv and are on an antiviral regimen and taking care of themselves and their health need to be punished. The title of this article stating that there is a price to pay for being on meds is so beyond. In a world where word choice is everything (tactful) I chose to stand strong by the words "I will not be made to feel ashamed, weak, or wrong by the fact that I am hiv positive." Kindly keep your blanket as I do not agree with that statement.
As for depression as a side effect, well. .decreased libido is a side effect of most anti depressants, suicidal thoughts to some add medication, and drowsiness to cough medicine. We live in a medicated society all suffering from these side effects to the drugs that are helping us stay alive. I'm OK with that. Not to even mention I was way more depressed before I became positive. Maybe It's all the sex now. Who knows about these things. .
Comment by: John Curtin
(New York, n.y.)
Sat., Dec. 12, 2015 at 6:50 pm EST
I agree wholeheartedly, and am grateful to see validated what my experience has been personally. Thank you!
Comment by: Anonymous
Fri., Dec. 11, 2015 at 5:13 pm EST
What about taking atripla right before bedtime? No need to feel drowsy during daytime! I am on it for 8 years and don't feel any side effects as I take it like a sleeping pill., the author makes no sense!
Comment by: MR
Thu., Nov. 19, 2015 at 12:56 pm EST
I dont have HIV but someone l love front the botton off my heart does, is very sad but we cant not lost faith like that is the cure come the love one can live a better life. My so turn 33 yesterday and after he be infected 33 years ago for a blood transfusion he is mi miracle.
Comment by: Paul
Sat., Sep. 19, 2015 at 1:42 pm EDT
What do you mean "it took me a lot of courage to muster the audacity to ask him for something"? That's not courageous or audacious, it's what you're supposed to do - take an active part in your own healthcare. The doctor isn't in charge. You are paying him to provide a service to you and you should never be afraid to at least ask a question or make a suggestion. I don't know why I'm bothering to comment because this reads very much like paid content for the second drug, and the writer is trying to encourage others to ask the question, but the pathetic victim tone of this whole price really rubbed me the wrong way.
Comment by: Dom I. Nant
Wed., May. 27, 2015 at 3:38 pm EDT
The take home message here does not even deal with the drugs being used or the fact that this person is infected. It is about the fact that no one should be timid about asking their doc for some change in therapy. I have done so and the doc stated that he wished more people would take control of their health situation (I stopped taking a med immediately after the side effects started). It's about YOU not about the doctor - they are there to guide you along and supply the necessary medication if necessary. I can remember the look given me by one doctor when I didn't like his pompous all-knowing attitude, and not listening to me in a situation that I knew better then he did,fired him on the spot. I went out to the receptionist/nurse and immediately changed to another doctor.
Comment by: Dazy Rumbles
Mon., Oct. 27, 2014 at 8:30 am EDT
like very much how you write, clearly and very understandable. Just want to mention how cool you were able to switch rapidly: here where I live ARVS are 100% controled by the mexican goverment and that means beaurocracy decides. So when I asked my doctor to change Atripla to Complera, first he was in disbeleif :"How dare you try to change from a proven successful method to some other that its not even available here?", thats was his unspoken response to me that I assumed from his looks. Then it took months of me supplicating him to change my ARV therapy until after much beaurocratic going back and forth, they finally gave me Truvada and Isentress, which is better but not good enough still. Right now I am hanging from the wire, always tired, with arthritis, dizzy and dazed with never ending flatulence and hugue protruding belly, hoping some Messiah comes along, but doubt it will. Best regards from sunny confrontational Mexico.
Comment by: Linda
Thu., Aug. 14, 2014 at 7:07 pm EDT
There's no audacity in doing research and discussing it with the doctor. You live in your body, not them. Diagnosed in 1989, I'm a proactive patient. Atripla for 7 years. Time for a change . The depression keeps getting worse. Not happy at all. I'm tired of a pill for the side effects of a pill.
Comment by: Paul
Thu., Aug. 7, 2014 at 10:56 pm EDT
I am 54yo and started Stribild in Jan 2012, I'm really glad to say my side effects have been minimal and my numbers have been great, the wrose side effect is the $2500 month cost to my Insurance ($30 copay) which keeps me a slave to my job.
Comment by: Mariel
(New York, NY)
Thu., Aug. 7, 2014 at 6:36 pm EDT
People have to remember that ARVs are technically chemotherapy and are toxic medications. Unfortunately, all the currently available HIV drugs have side effects, some serious like bone disease and kidney failure, and patients experience them differently but no regimen is side-effect free. It is a price to pay for having HIV and there is an urgent need to develop new treatments with much less toxicity.
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Comment by: Cliff
Tue., Oct. 14, 2014 at 6:59 pm EDT
Absolutely, Mariel. I cannot "feel" the side effects so intensely of Complera, but I am well aware of the risks. And, I agree, it is a "price" to pay.
Comment by: Cassandra
Fri., Jun. 19, 2015 at 10:38 pm EDT
The drugs are absolutely not chemotherapy, especially given that chemotherapy is designed to kill quickly replicating cells (such as cancer cells, hair follicle cells and white blood cells). HIV drugs are designed to impede basic functions of the virus so that your CD4+ white blood cell count can increase. Yes, the drugs have side effects. All drugs do. The ones with HIV drugs are particularly unpleasant because the drugs have narrow targets and tend to impact multiple processes in the body. Researchers are always trying to figure out ways to reduce side effects, but some things are simply unavoidable if you want a drug that works.
Comment by: Reggie
Tue., Aug. 5, 2014 at 10:16 pm EDT
Reading your article helps me in that I am contemplating a change now on atripla 7 months but sleep disturbances as well as some depression have been thinking a change to complera may help(available here as truvada and rilpivirine not in single pill form.) knowing the change worked for you good to know. Wish you continued success. Reggie
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Comment by: Cliff
Tue., Oct. 14, 2014 at 6:58 pm EDT
Glad to know that, Reggie! Best luck to you. I am doing very well on Complera, just got labs back today.
Comment by: Sven
Fri., Aug. 1, 2014 at 2:11 pm EDT
I've been positive since the late-1980s. ATRIPLA was wonderful because there was only one pill. As it turned out, the "luxury" of one pill also meant that I was going to have to take another half dozen or so meds to cover all the adverse reactions... including anti-depressants and sleeping meds. A couple of months ago, I started falling down and having these weird and scary hallucinations. The doctor assured me there was no such thing as "adult-onset schizophrenia." The solution was simple: no more Atripla. That is doing the trip. Since the switch, I have not been under attack by that viscous herd of drunk shrimp. Seriously. I rarely fall down these days. Atripla was great for me when it first came out. Now, not so much.
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Comment by: Reggie
Thu., Aug. 7, 2014 at 9:49 pm EDT
Hi great your doing better now. What regime did you change to?
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