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HIV Meds and Hospital Beds

March 24, 2010

"Going on meds doesn't mean I am going to die. It means that I am not letting the virus attack my immune system without a weapon to defend itself. I am going to try to control it and not let HIV run free inside of me." -- Robert

I wanted my third blog to be about my experience starting HIV/AIDS medication. When I was first diagnosed I was told time and time again that my counts were always good and I didn't need to start taking medication right away. This helped feed the denial of my HIV status. Not having totake medicine on a daily basis and keeping busy made it easy to sweep my diagnosis under the rug.

In 2007 I switched my infectious disease doctor because I lost my health insurance and my job. I was limited with the options I had and chose to go to the Jonathan Lax Center and Philadelphia Fight, located in Center City Philadelphia.

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The first time I walked into the Lax Center I didn't know what to expect. It was different than the previous doctor's office I went to. I remember walking in and being greeted immediately with a hello from the woman behind the desk. It was welcoming and warm and from that moment on I knew I found my home. I was waiting for five minutes and was already laughing with the receptionist and other patients. It was the next step towards accepting my HIV status.

I remember being introduced to my doctor for the first time. He was different from the other doctors I went to before. He was compassionate, caring, he listened and answered questions I had. He made me feel like I was important and not just another patient. He filled me with confidence and gave me the hope I needed to continue this fight against HIV/AIDS.

I had just lost my job, I had no car and I needed a change. A big change. I remember the doctor sitting me down after a few months and asking me about the possibility of starting medication. Like many who are about to start meds I was hesitant, especially after being told my counts were so good for so long. I had convinced myself that starting meds was the beginning of the end.

He explained the different kinds of meds and how much they have advanced over the years. I looked at starting meds as my chance for change. So I started taking Atripla [efavirenz/tenofovir/FTC]. It was a single pill once a day. Who could argue with that? The doctor informed me that there was a possibility of some side effects and that some are normal. He then gave me a prescription to get filled, and out the door I went to embark on this new adventure.

I remember coming home anticipating the worst in regards to side effects, but also looking forward to the vivid dreams that Sustiva [efavirenz, Stocrin] in Atripla can cause. Well, after a few days of taking Atripla I noticed a rash appearing. It was itchy. I called the doctor's office and told them I was breaking out in a rash. I was told it was somewhat normal and to keep an eye on it. I also made an appointment for the next day.

When called back to his office I showed the doctor my rash. By then it was all over my chest, back and legs. He then did something I never expected. It was a Friday so he handed me his cell phone number and told me to call him directly if it was to get worse. I left reassured that I'd found the best doctor I possibly could find.

The following night I went to bed as usual. I woke up about 3am and was having an itching attack. I couldn't sleep. I ended up falling asleep submerged in a tub full of hot water. It was the only thing that stopped the rash from itching. My partner found me in the morning and was scared out of his wits. He thought I was dead. I know it isn't funny but, I laugh about it now.

I called the doctor and told him it was getting worse. He advised me to go to the emergency room. I was having an allergic reaction to the Sustiva in the Atripla. I was admitted and hooked up to tubes pumping fluids into my body.

When I was alone in the hospital room after everyone went home, I would ask myself, Is this it? Am I going to die? It was just me, a little TV and a singing frog on crutches my friend Lori brought when she visited. I would think about all the people, places and things that led me to where I was that day. I was scared. I never was in a hospital over night before. I ended up staying there for three days. I stopped taking Atripla and never got to experience the vivid dreams.

I entertained the idea of starting meds for the second time this past December. Since the prior medication and my body had a bad reaction, I was very hesitant to start medication. This time around, I was put on Truvada [tenofovir/FTC] and Isentress [raltegravir].

So what makes this time different? Well for one I am in a better place altogether -- mind, body and spirit. I have a stronger support system via POZIAM and now TheBody.com. I also have read tons of positive feedback from long-term survivors about taking medication.

I know most HIV/AIDS drugs have side effects and they usually aren't the most pleasant. I remember reading the following: weight gain, nausea, diarrhea, crazy dreams, loss of weight in my face, arms and legs -- No, not my soccer legs!

Seriously, I know these things could happen but I can still live with these side effects. Isn't that something to be grateful for -- just being alive? So I remember looking at the little blue and peach pills and asking them to help me fight this virus. I said a short prayer and swallowed them.

I have been taking Truvada and Isentress now for a little over 2 months and have experienced very few side effects. I have only had problems falling asleep and staying asleep. My partner will tell you I have also become a super bitch. I disagree!

When I got my first blood results since starting my new meds, I found out my CD4 count was 330 and for the first time my viral load was undetectable.

Send Robert an e-mail.

Read more of POZIAM, Robert Breining's blog, at TheBody.com.



This article was provided by TheBody.com.
 
See Also
More Personal Accounts Concerning HIV Treatment

Reader Comments:

Comment by: Ken Warnock (Royal Oak MI) Wed., May. 19, 2010 at 11:46 am EDT
When first diagnosed in 2002, I went on Sustiva (Efavirenz) and Combivir (Lamivudine and Zidovudine(AZT)). While my viral load dropped rapidly and my CD4's climbed, oh, so slowly, the side effects were a challenge. Mostly GI (diarrhea), but also my red blood cells and hemoglobin kept registering low. I had anemia and was always tired. The Sustiva dreams were a little unnerving at first, but I adapted to them.

I switched over to Atripla in 2007 and other than a slight rash early on, there have been almost no noticeable side effects. On the plus side, the tenofovir works against my Hep B.

I'm glad your numbers are looking good, Robert. Mine are turning around after returning to the meds which is another long story. Thank God for ADAP!!
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Comment by: Peter (Sydney , Australia) Sat., Apr. 3, 2010 at 12:43 am EDT
I found out I was HIV+ in july 2007. I have never been to a HIV doctor so Im not sure what my CD4 T cells or viral load is. Im in great health so im thinking there is no need as yet....am i wrong to think this????
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Comment by: Jeff (Philadelphia, PA) Thu., Apr. 1, 2010 at 5:38 pm EDT
Robert, I'm glad you found support at the Lax Center. Jonathan Lax was one of the first people to give me hope after I received my positive comfirmatory test result right after New Year's, 1989. A tireless advocate, he always was exploring new options and wanted to find out as much as possible about this disease we shared. I am still taking some of the supplements he recommended. I was honored to briefly serve on ACT-UP Philadelphia's Treatment and Data Committee with Jonathan. His untimely death was a tremendous loss to our community, but his spirit lives on through Philadelphia FIGHT and the Lax Center, continuing to help people LIVING with HIV, as you are doing as well.
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Comment by: Kirk (Dallas,TX) Thu., Apr. 1, 2010 at 5:31 pm EDT
Thank you Robert for this very relevant blog. I have not started meds. My doc. says that my numbers are good but when that time comes, I know I will have more hope because of this article. Yes, I do have fear but I also have knowledge. Keep-up the writing. You are helping so many, especially Kirk.
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Comment by: Gaz (UK) Wed., Mar. 31, 2010 at 11:26 am EDT
Hi Robert,

Thanks for this blog, it was very interesting and entertaining. I am not currently on meds and have 'good' figures according to the doc's but i know the clock will be ticking and nothing can stop the countdown, when its time who can say...but when it is i will revisit your blog to help me get over myself and swallow those fighting pills!

ps i'll let you know about the dreams and if the're any good!

Thanks

Gaz
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Comment by: Rick (Florida) Mon., Mar. 29, 2010 at 7:59 pm EDT
I started Atripla just over 2 weeks ago. So far I have had no side effects at all... not even more vivid dreams. (But then I've always had vivid dreams my whole life anyway, so I'm not sure how much more "real" they could get.) It's like taking another vitamin tablet. I feel great. It almost makes me wonder if it's working. I get lab work done next week, so that will tell all. I guess that after a couple weeks if I was going to have any side effects I would have had them by now.

I was only diagnosed as positive 3 months ago, and my numbers were good, except my viral load was higher than the doc wanted.

Like you, I hope this is a way I can fight back and that it is not just the beginning of the end. I sure hope the Atripla is working like it should. It's so easy to take and tolerate that this could be my 2nd chance I've been hoping for.
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Comment by: Shawn D. (Charlottesville, VA) Mon., Mar. 29, 2010 at 12:15 pm EDT
Great blog, Robert. I'm glad this most journey with meds has been a smoother ride!
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Comment by: Billy (Hickory NC) Fri., Mar. 26, 2010 at 11:29 am EDT
Atripla made me loose my mind! Switched to T&I and it has been wonderful. I don't see the big deal about taking meds twice a day to not have the side effects of Atriple. I take my Truvada in the a.m. and I have not had any problems with sleep.
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Comment by: Daniel (Melbourne, Australia) Thu., Mar. 25, 2010 at 9:12 pm EDT
Thanks for this. I get my first script for Truvada/Viramune filled in an hour. I've been between 250 and 350 for a year but have kept putting medication off due to the same attitude - I kept thinking either "This is the beginning of the end", or worse, "This actually is the end", instead of "This will let me wipe out the virus and get better". Attitude is 90%.
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Comment by: David (Lancaster, PA) Thu., Mar. 25, 2010 at 2:26 pm EDT
Thanks for sharing! I will be going down the meds road soon enough and I am scared to death. Blogs like this give me hope. Thanks!
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Comment by: D A Bourque (Lafayette LA) Wed., Mar. 24, 2010 at 6:12 pm EDT
Robert your blog was awesome.For me lets go back 22 years when I was told to start medications.The meds today are so much better than when I started.I have been on almost all regiments so for it even has been started over again 4 times.The first time I went to the Clinic in New Orleans I was scared to death.One had to take a Greyhound Bus at 2.20 am got to New Orleans at 4.45 am appointment was at 8.00 am did not have a clue where to go.Asked for directions at the Bus Station and decided I would not walk out of that Bus Station till the sun was up.Made it to the Clinic and like you they were so kind and welcoming the whole staff was that way.You know the walk from the Bus station I was stunned that every person going to work said Good Morning.I went there for the next 5 years and then was getting tired of the bus trips.Also they had opened a Clinic here in Lafayette so I figured I would get the same type of care.WRONG The Clinic was built for infectious diseases an nothing else.They started having Children's Clinic at the same time.That started a big to do.They stopped the children's clinic.Started going back to New Orleans and just before Katrina Hit transferred back here.Guess what they are having children clinic again with us.I voiced my concern have not seen a change.If I ever can afford going back to New Orleans I will.
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Comment by: Jeremy Winkles (Oklahoma City) Wed., Mar. 24, 2010 at 3:17 pm EDT
This is a great blog. This is an awesome story for those who are going to start meds to read. Awesome.
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