My 10th day of ARV trial treatment: The side effects

It has been 10 days since I took my first three pills of ARVs. My cocktail is Nevirapine (200mg) + Lamivudine(150mg)/Zidovudine(300mg). I have been following a very strict hypoallergenic diet, strictly no smoking, and complete sleep all the time. No physical manifestations of the side effects so far, no rashes, no skin redness, etc. There were however some mild side effects that I experienced, like: fatigue, and increased food intake.

I experienced fatigue when I decided to jog for half a kilometer last week. I don't usually get so tired for such an activity, but this is different. After going home from my jog, then taking a shower, resting, etc. I went to bed and woke up late in the afternoon. I can barely get up, I felt so exhausted, my body felt so heavy and tired, I tried standing but my knees seemed too weak. I just stayed in bed all day and had food delivered. I almost crawled just to answer the door when the food delivery guy came. The next day, the same feeling lingered. Although not as worse as the previous day, but I still felt tired and so weak. I can only stand for a few minutes, although I managed to prepare meals for myself. I can get up, and walk around my condo, but I end up on my bed within a few minutes. Next day again, I felt great! I feel energized, like I rested for more than a day. When I went to SLH for my check-up, I told the doctors what happened, and they said it is part of the side effects, I shouldn't have forced myself to jog in the first place; because that activity triggered the side effect.

Nevirapine is only supposed to be taken once a day, everyday at 8am; then after 14 days, it will be taken twice a day, 1 pill at 8 PM and again at 8 AM. Last Friday, while I was in the train on my way to work, while I was listening to the radio through my phone. I wondered, "did I forget something, it's 8:20 PM and I should have taken something". I looked at my phone and for a second or two I realized that the alarm failed! I unzipped my bag and look for the pill container that has Nevirapine, I found the small pink plastic container, opened it up, took a pill and popped it in my mouth as quickly as I can and drank water. After I swallowed the pill, I realized that nothing was wrong, that pill was supposed to be drank the next day at 8 AM not 8 PM. My next pill is at 9 PM, there was no alarm to go off in the first place. So there, since that day moving forward, I have been taking Nevirapine twice a day, no physical side effects so far. So instead of 14 days trial for that pill, it was cut short to 7. I haven't told my doctors yet. Based on what I found out online, the reason why there is a 14 day for Nevirapine is because of its fatal skin rash side effect and to give the body, specially the liver time to adjust to the toxicity. I will report this incident to my doctors this week. It's just common sense, if I accidentally doubled the dosage within the trail period but it will doubled afterwards, I might as well go on with it. Instead of doubling the dose on one day then going back to the normal trial dosage. Its like bringing battle tanks to fight the enemy then withdrawing it and replaced by armed foot soldiers; such lowering of dosage might lead to treatment failure.

For the past two days, I have been awfully drowsy every after lunch at work. Yesterday, after eating lunch (packed lunch) which was not so heavy at all. I felt so sleepy that I just can't help but to tell my teammate that I will be sleeping for a bit. Earlier, I felt so drowsy that I accidentally slept at my workstation. I am yet to know what is causing these incidents. I am never like this at work, not when I have enough sleep.

My first day on ARVs: The beginning of a lifetime.

July 15, 2011, Tuesday. Today is my first day of taking ARVs. I was supposed to finish my shift at 7 AM, but because I have to finish a lot of stuff and I am on Vacation leave for a week, I have to make sure all things are good and everything have been properly endorsed. So I stayed at work until brunch time. It was 7 AM, my phone alarmed telling me it's time to eat. I wandered in our pantry, only to find out it was full of foods that I am not supposed to eat. The nearby McDonald's is definitely a no no because of all the processed meat. I went to Starbucks to check out the sandwiches, all have cheeses in them. I moved on to Seattle's best, all have cheeses in them too! Yesterday I ate there and ordered a pesto pasta and asked the attendant to make sure not to put parmesan on the dish. I then went to two 711s to buy some siopao, and there was none, I was able to buy siopao and a piece of banana from the 3rd 711 store two blocks away from our office building. It took me 20 minutes just to look for something to buy for breakfast or dinner, whatever.

8 AM, my phone alarmed again, I was sitting at my workstation; it's time for Nevirapine. Good thing my water bottle was ready, I took my bag and peeked inside to look for the bottle, I carefully opened it, took a pill and felt it rolling on my fingers. As I felt its texture and played around with it for a little bit, its path on my fingers left a fine white powder. The pill was coarse, rough, big, and fragile. It felt like that I can break it into pieces with just little effort. I popped it in my mouth and gulped a mouthful of water. I felt it go down in me, and I waited for any effect to be felt. almost an hour has gone by, and I was very paranoid.

9 AM, it's time for Lamivudine/Zidovudine. it's a two in one pill, two medicines in one medium sized white pill, that is a little smaller than Nevirapine, and it is smoother and it felt smooth to touch. After gulping it down with water. I waited, and waited. Until I was ready to go home, I felt nothing. I waited a bit outside our office building, sat there for while looking at the sun soaked busy street full of passing taxi cabs, luxury cars, and the hurrying day workers in tight and well pressed office attire. Another hour passed by again, and still, I felt nothing.

I was on my home, in the bus, I felt this rumbling in my stomach. I was hungry. Moments later, I found myself in the cool and long aisles of SM Fairview, doing a little bit of shopping.I ate hungrily at Mang Inasal, I ordered pork barbecue and did not bother to even fix the sauce for it. I had two and a half cups of rice. I was so full, and I went home.

At home, I unpacked all the stuff that I bought, tidied up the plastic bags, took a shower, slept. My dad came knocking on the door around past 4 PM. Asked a few questions on how I was doing, and offered to accompany me to the market, I said not now, I'm very sleepy. We talked for a bit and he went home. I slept again.

My phone alarmed, it was already 7PM, I have to eat. I went down to the nearby canteen and I found porkchops, fried. I ordered a piece and two cups of rice. I went back to my condo, watched cable, then my phone alarmed, it was 9 PM, time for another pill. As I wait for any effects, I went to browse a few stuff online and even checked some important emails and replied to a few correspondents.

As of this writing, it is already 12:04 AM, July 16, Saturday. It has been 16 hours since my first pill, and I still feel nothing significantly noticeable or new. I have a few itchy spots here and there, no redness, no bumps; so it might just be the heat.

HIV/AIDS Management: preparing for ARV treatment (part 3)

Tuesday, July 12, 2011, H4 Ward San Lazaro Hospital, Manila. It was the final day of the ARV treatment counseling. My dad, Jay, and I were all waiting patiently at the ward's entrance. My name was called at around 2 PM, I was the first patient to be counseled. At the table near the back of the doctor's clinic area, awaits 4 doctors. 2 dermatologists; one dermatologist looks like an Indian while the other one is an old Chinese mestizo, the doctor who counseled me who is infectious disease specialist was there, and one of the most tenured doctor in H4 ward who is also an infectious disease specialist took the lead; all were waiting for me. Papers were preparedly piled, booklets as well as handouts. I introduced myself, Jay, and my dad to the lead doctor and we all sat at the other end of the table, me sitting next to the lead doctor. The doctor then told me that this is the final stage of the counseling and we will review what I have learned during the first two sessions, making sure that I already fully understand the processes of HIV treatment. Below are the questions and what I answered as well as few of the discussions.

Lead doctor: What are ARVs for?
Me: They are medicines that inhibit the replication of HIV viruses inside the CD4 cells. There are what we call protease inhibitors and others that blocks the virus from getting the cell's DNA, stopping the virus from replicating itself.
Lead doctor: What are CD4 cells and what they do?
Me: CD4 cells are helper cells, a kind of antibody that tells other antibodies that there are invading bodies inside the system.
Lead doctor: What are the relevance between CD4 cells and HIV?
Me: The HIV virus needs the CD4 cells for it to multiply, as they go inside the cell and replicate, the CD4 cell dies. It goes on and on, repeating the process.
Lead doctor: Name three types of ARVs and one significant side effect of each.
Me: Nevirapine - rashes that may lead to Steven Johnson disease; Efavirenz - dizziness, Lamivudine/Zidovudine - anemia.
Lead doctor: How long are you required to undergo treatment?
Me: For a lifetime.
Lead doctor: What are the purposes of taking ARVs?
Me: To prolong a patient's life, to raise up my CD4 level, to lower a patient's viral load down to undetectable.
Dermatologist 2: What are difference between adherence and conformance?
Me: Conformance is doing what is needed as directed or conforming to what is needed to be done. Adherence is doing what is needed on time.
Dermatologist 2: What are the intervals in-between and taking each type of pill?
Me: 12 hour intervals between each dosage and 1 hour apart for each type.
Dermatologist 2: Name the ARVs and when you are supposed to take it.
Me: Nevirapine once a day at 8pm, Lamivudine/Zidovudine twice a day every 12 hours, so that will be 9pm and 9am.
Dermatologist 2: If you are 30 minutes late in taking your medicines are you going to double the dosage?
Me; No.
Dermatologist 2: Nevirapine will be increased to what dosage and when?
Me: Twice a day 12 hours apart, 8pm and 8am after two weeks of no violent side effects.
Dermatologist 2: Are you depressed?
Me: During the first few weeks of diagnosis of course I was, but I am okay now.
Dermatologist 1: What will be the trigger for you to be confined here?
Me: If there will be rashes or diarrhea or any severe side effect.
Dermatologist 1: Is it okay for you to be confined here?
Me: No.
Dermatologist 2: Are you sexually active?
Me: Not at all.
Dermatologist 2: Were you sexually active?
Me: Not even.
Dermatologist 1: Does your partner know?
Me: When I had one, yes.
Lead doctor: Do you practice safe sex?
Me: I haven't had sex for along time, I'm not active at all, if ever I do, of course I will.
Dermatologist 1: What diet are you practicing, if any?
Me: Yes I am, the hypoallergenic diet, and I was hoping rice would be on the list.
Dermatologist 2: You are overweight. Once you have settled to a particular combination of medicines your next goal is to lose unwanted weight. You are two times prone to heart diseases compared to uninfected obese individuals. Right now, you watch what you eat, be extra careful. No smoking nor drinking.
Me: Is it okay to take glutathione?
Dermatologist 1: For what?
Me: To clean my liver before I take my first pill. I do believe that the medicines are already toxic and may stress the liver.
Dermatologist 1: Its effects aren't clinically proven, so we don't recommend you do it.
Dermatologist 2: If you want to take care of your liver, stop smoking and stop drinking.
Lead doctor: Also, no multivitamins for now and nothing of any type of food and herbal supplements.
Lead doctor: If your CD4 goes up as high as 1000, are you supposed to stop ARVs and why?
Me: No, because the ARV's purpose is to set a block for the HIV and the CD4 cells. If I stop taking ARVs that block or wall will be stopped, enabling the virus to get a hold of a CD4 cell and start replicating again.
Lead doctor: What will happen if you stop taking ARVs at any given time?
Me: The virus might or will develop resistance to the medicines and I may have or will need to take the 2nd line of ARVs.

Those were some of the questions and discussions during the last part of the counseling. I felt like I was in a panel interview or I was a student presenting a report to a panel of professors with my friend and dad as audiences. I was kind of nervous answering their questions, afraid that I may answer a wrong one. I even felt that I was graded! Dermatologist 2, was very strong in his statements and has a strong command of words. Dermatologist 1, was the quiet type, the counselor doctor was quiet the whole time, the lead doctor, she was already my doctor in my previous visits, she has a very strong character.

After the almost hour long discussion and reviews, the lead doctor prepared the papers for enrollment, my enrollment for ARVs, she said delightfully "alright, you are indeed ready to be enrolled". Then dermatologist 2 said "I think you more than ready, you are happy". I replied, "I am very much ready and being happy is my choice. I am even excited to start the treatment!". There were a couple of papers to sign and Jay and my dad has to sign as well, as witnesses. I was given a booklet that looks like a bank passbook, it will record the ARVs I get from the pharmacy. After we signed the papers the lead doctor told us to proceed to the pharmacy and get the medicines. I shook her hand as well as the other doctors and thank them for a wonderful discussion. The three of us then headed out of the ward to get my medicines then off to a late lunch at SM San Lazaro.


Part 1

Part 2

HIV/AIDS Management: preparing for ARV treatment (part 2)

Tuesday, July 05, 2011. I brought my friend Jay to the H4 ward in San Lazaro Hospital as a requirement by my doctor to have another treatment partner aside from my dad. Jay was very supporting and asked questions regarding my treatment and the what nots as well as the what tos. I deeply appreciate his efforts on doing so and coming with me to the hospital.

All my lab results turned out well, except that my blood sugar level was a bit high, so no more extra rice for me. The rest of the lab results were good, including Hepatitis B and Syphilis that turned out non-reactive.

The second session of the counseling was more detailed, because the doctor had to discuss all the medicines from 1st line to the 3rd line one by one, their possible side effects and what to do with each one. Whether I will be needed to be rushed to the hospital or just to let it wait until a particular side effect clears. We also discussed how long I will be doing my weekly check-ups once I start my trial stage of treatment. The weekly check-ups will be once a week, every Thursdays for one to two months. I have to be on leave from work for two weeks so that everything will be observed and anything that may happen will be noticed and will be taken cared of. The pills were also shown to us, the intervals of taking each one were discussed and what the pills look like. The first line of medicines are Lamividine/Zidovidine and Nevirapine.

I also have to be careful on what I eat. The importance of me going on a hypoallergenic diet was also discussed again, just to make sure I understood its importance in the treatment, which I must strictly adhere to. It is important for me to go on a hypoallergenic diet to find out the causes of allergy if ever I will have or may develop one. Also, no more raw foods for me, either vegetables or animals. So goodbye sushi, sashimi, and most types of maki, no rare and medium-rare steaks; hoping all of this is just for now. No more street foods too. All avoidance to certain types of food to be done to prevent me from getting any parasites, fungi, or additional viruses.

Exercise is a must but must be done in moderation, because I cannot get tired. Amount of sleep was also discussed, I must have at least 6 hours of sleep, but it is important to have full 8 hours. It was also reiterated in the discussion that lack of sleep and stress can significantly damage the immune system. The doctor also suggest that I get vaccinated before I start on ARV treatment, making sure I get additional protection.

With a CD4 count of only 295, all measures must be done to protect my already weak immune system. Strict compliance to medical advices is a must.


Part 1

Part 3

HIV/AIDS Management: preparing for ARV treatment (part 1)

First week of June, was my 3rd blood extraction for my 3rd CD4 test. 3rd week of June, I got the result and my CD4 is already at 295 from the previous count of 386. To be diagnosed as someone with AIDS, a person living with HIV must have a CD4 of 200 and below and have at least one Opportunistic Infection (e.g. Pneumonia, TB, etc.). I am already nearing the point of having a CD4 count of 200, plus I am very much prone to Pneumonia, so I am going to start taking ARVs real soon.

Yesterday (June 28, 2011), me and my dad went to San Lazaro Hospital for our ARV counseling as well as to work on my lab tests. I had a long list of lab tests that even the medical technicians at the hospital's lab department were surprised on how much tests my doctor requested. Well those were done and I will get them by next week, Tuesday. Yesterday, the counseling session between me, my dad, and my doctor; started. Topics that were discussed was what ARVs are for, the importance of, the side effects, the benefits and why people living with HIV needs them. My dad was obviously interested on the topics discussed and did ask some questions that I never thought of. Like my sleeping habits, food intake and if there are any food that I cannot eat, and is it okay if I live alone? While I asked about my weight issues and my plans about it.

Regarding my weight, The doctor said to maintain my weight even at my chubbiness level. Any weight loss will be checked if it has any connection to the medicines I will be taking or to the side effects or to the new diet I will be practicing. The doctor also said that I must be happy I have this much fat, most patients are craving to have such built. Regarding food and diet, my doctor has put me on a strict hypoallergenic diet so that when I start taking ARVs and if side effects start to appear, they can immediately rule out food as a cause.

I was also given handouts about ARVs which contain data like the suggested times I need to take them, the intervals between, the side effects and how to deal with them. All are in Tagalog.

About my dad's question about me living alone, the doctor suggests I bring a friend next time who can look after me when my dad is away. Even though my dad lives only 20 minutes away(drive) from my place, and he can always visit and check on me on a daily basis my doctor suggested to have a friend as a backup to check on me whenever needed. I volunteered a very close friend (of more than a decade) of mine as my dad's backup, Jay. The doctor repeatedly said how important it is to have a dependable treatment partner, someone who will monitor my vital stats, every body changes that may happen, and anything that can be related to the cocktail of drugs I will be taking; and someone who will make sure I will take my medicines on time. So, those people are my dad and Jay.

So that's the end of the first ARV counseling session. The second will be next Tuesday and Jay will be with us on that one. Also, next Tuesday, I will be getting the lab results. All 14 of them.


Part 2

Part 3