Day 6: Fatigue and Tingling on Stribild

So today is day six on Stribild and for the most-part things have went as expected. Initially dreams had subsided however they have since returned. I am sleeping through the entire night and that is something that I was not able to do when I was on Atripla. On day 4 I started to experience severe fatigue. I actually haven't been that fatigued since I was first diagnosed and had a viral load of over a million. The best way to describe the fatigue is to say it feels like no matter how much rest I get I am still tired. To counter this I am just taking it really easy and trying to rest up.

Most of the symptoms come and go in waves so I just have to wait the symptoms out. There are times when concentration is extremely difficult and things are "cloudy". This is also coupled with moments where I simply do not feel well. Those moments come really quickly and disappear after a few minutes. Tonight I was laying on the bed and I started to feel tingling in my left arm, left side of my face, right lower back and right leg.

Around this same time I was also experiencing mild nausea. Again all of these symptoms come and go in waves. I have also had incidence of my headaches but I have simply taken Tylenol to treat the headache and they have went away.

I am not stressing over the side effects. I know that from taking Atripla that side effects generally subside as your body becomes adjusted to the medication. All in all the switch is going fairly smoothly and I am still glad that I chose to switch. I also got a letter in the mail today letting me know that my insurance would cover the cost of Stribild. I need to contact the specialty pharmacy tomorrow and arrange the shipment of my next months supply. I will be sure to blog about how that goes.

Aaron

Day 3: Stribild Rash

Day 3: Stribild Rash

Greetings! Well today marks the third day since I have switched from Atripla to Striblild. I can say that so far it has been uneventful. I have experienced almost no side effects that many others have experienced. I have however noticed that at times I have a headache that will come and go. I cannot say that this is exclusively because of the medication though. Tonight as I got out of the shower I noticed that I had developed a rash on my chest/abdomen that radiates across the width of my body to my flanks. I am not alarmed by this when I first start Atripla I developed a pretty bad Atripla-rash. I know that if they rash becomes bothersome that I can take Benadryl for it and I will keep an eye on it.

Regarding my sleep, I can tell a huge difference in my quality of sleep and I am no longer waking up in the middle of the night. The only other side effect that I might be experiencing is heart burn which means I need to eat more when I take the medication. I have not had any other problems though.

 <---- Here you can see the start of the rash. Eventually it will most likely spread over the entirety of my trunk.

When you look at them close up they it simply looks like hives
or areas of raised skin.                                               --------->

<----- Again it is across my trunk spreading L flank to R flank.

Changing From Atripla to Stribild

Changing From Atripla to Stribild

In June 6, 2011 I was diagnosed with HIV. I knew that I immediately wanted to go on medications and I was immediately enrolled into a drug study that was open label. I end up on the Atripla arm. Initially I tolerated the Atripla very well. Life was great. Within 5-6 months I was undetectable and life returned to "normal" whatever that is. 

I had been warned about the "Atripla dreams" and to be honest it never bothered me, initially. I found that the key to Atripla is low-fat diet. The sustiva component in Atripla interacts with fat which is what causes the dreams to be worse. For the first year life was great and I was extremely happy. If it wasn't for the activism and advocacy that I did, it would have been extremely easy to forget that I was living with HIV. I think that this says a lot about what life is like for a patient today. 

Before I knew it, my 52 weeks study was coming to an end and I faced the decision of what I wanted to do next. One one hand I could stick with Atripla which I was tolerating well or I could switch to Stribild. I had read articles weighing in on atripla and damage to neurons and this was particularity-worrisome. After many conversations with my doctor, I made the decision to enter into a second study but if side effects worsened I would break study and come off. I was hoping that I would be randomized into a different drug however I was placed into another Atripla arm which would last for 52 weeks. 

There were things that I had to consider when making the decision, namely financial. At that time I had insurance however I was waiting for the "pre-exisiting period" to end so HIV would be covered. I was aware that stribild costs around $2900 a month as well as quarterly lab work is about $1500. 

A few months after I started the second study I noticed that the systems were really becoming more pronounced. I tell everyone that for the entire time that I was on Atripla I dreamed and that gets extremely tiring. It is almost as if your brain never gets to shut off. For a majority of the time that I was on Atripla I have had to take sleep-aides such as Ambien in order to get any meaningful sleep. 

Every time that I would have a doctor's appointment, which when you first start a study is Day 0, 2 Weeks, 4 Weeks, 12 weeks out to 52 weeks. Each study is different though, but for this particular study that was how it worked. In October/November of 2013 I had a trip to Washington, DC for a leadership meeting with the AIDS Clinical Trials Group. While in DC I had a horrible dream where in the dream I progressed to end-stage AIDS which required me to go on hospice. 

The unique thing about Atripla dreams is that everything is real. You can recall taste, sound, smell and everything in between. When I returned back to St. Louis I spoke with my Doctor however I still wanted to continue. The good thing about Atripla is the penetration of the "Blood/Brain barrier". From my work with the ACTG I have come to understand that a person living with HIV can have different levels of HIV in their system i.e. spinal fluid, semen, blood, breast milk, vaginal fluid. It was becuase of this that my general practitioner who is also an infectious disease physician decided to continue on with Atripla. 

The last 2-3 months however that I was on Atripla the sleep interruptions became more than I could handle. Every night I would wake up around 3-330am. It did not matter what my diet was or that I was taking ambien. Also concerntration really became and issue that could not be ignored any longer. Over the last few months I have spoken with several physicians and advocates that all encouraged me to change my medications. I explained that I was concerned about developing a resistance if I change medications. I also have always heard that a person should stay on their current regimen until it fails. I was lucky when I tested positive in that I was sensitive to all medications and I did not have a variant strain of HIV. One of the doctors made the following statement to me that made me think. He said, "Aaron, if you are having side effects from Atripla, why not switch to stribild? You have options and you should not be miserable due to the medications." This really made me think as well as be thankful that I do have options. 

Two weeks ago I made an appointment with my doctor's office with whom I have been with for close to ten years and I anxiously awaited the appointment. January 7, 2014 at 1215 was my appointment. The day came and I went to see my doctor. While the nurse was screening me she asked what the reason of my visit was and I proudly proclaimed, "I need to reconsider my HIV regimen." When the doctor came in he already knew what I wanted to do since we had talked about it multiple times during the previous 6-8 months. We talked about what I could expect with Stribild, how long atripla would stay in my system (about a week) and then we talked about insurance issues. With that the appointment came to and end and I waited for the pharmacy to fill the order. 

I am fortunate that I have a Walgreens specialty pharmacy right in the doctor's office where I go (Southhampton Healthcare). The staff worked with the insurance company to get the prior authorization and then explained that I am going to now be using mail order. My pharmacist explained that I would need to take stribild with medication as well as the potential side-effects. 

That evening I decided that I was going to take the medication at 6pm since I have to take it with food. I do not always eat breakfast and lunch is never during a regularly-set time. The clock clicked closer to 6pm and I went into the kitchen and made half a sandwich and then I popped the big, green pill. The rest as the say is waiting. Ask I sat and read over side-effects an stuff, I started to get panicky. I mean, for the last 2 1/2 years I have been on a medication that I have taken every night right before bet. No matter what I was doing I did this same routine and now I was changing it. In some ways I felt like I was abandoning a friend that had been with me sine those early days. When I as first diagnosed my viral load was over a million and my CD4 was 678. Now though I was changing everything. 

For a split second I thought that this was a huge mistake. Was I feeling something? Was this new medication going to give me fatigue or make m e nausea? I guess after 2 1/2 years of perfect health, having mild nausea depending on things I had eaten, sleep interruptions and so on, I had gotten use to atripla. All medications have side effects but we sometimes fail to remember that because the medications have improved so much. 

I finished the night out while watching television and then went to bed. I woke up the next morning and the first thing that I did was look at the clock and I was thrilled to see that it read "550am". For the first time in almost 2 1/2 years I had slept through the night. While I did have dreams they were nothing like while I was on atripla. Those two things alone already tell me that I made the right choice in switching to stribild.

I just finished taking my second dose of stribild at 6pm and as of yet I have not had any side effects. I will be sure to keep you posted. I would definitely say that if you are having side-effects from your medications that you need to talk to your healthcare provider and changing medications if it is appropriate. There is no need for you to be miserable from side effects while there are many options out there for those of us that are living with HIV. 

US: Bill to lift ban on HIV positive organ donation passes House committee

by Joseph Patrick McCormick for PinkNews.co.uk
18 July 2013, 12:21am  

   

 

A bill which could eventually allow the donation of HIV positive organs to HIV positive recipients has passed the House after having passed the US Senate back in June.
The HIV Organ Policy Equity Act (HOPE), which is sponsored by both Democrats and Republicans would allow organs from HIV positive people to be donated to HIV positive recipients, and more so would allow researchers to study the safety of such practice.

The Human Rights Campaign also commended the passage of the bill. Back in March, the HRC praised the passage of the bill in the Senate Committe, and in June it passed in the full Senate.

“The HOPE Act represents sound public health policy,” said HRC legislative director Allison Herwitt. “The action by the House Energy & Commerce Committee is a major step forward in removing an outdated barrier which impedes access to lifesaving transplants for persons living with HIV and AIDS.”
The bill was sponsored by Representative Lois Capps.

HIV-positive patients in the US have been lobbying for the right to receive HIV-infected transplant organs for some time. They argue that there are hundreds of HIV-infected organs available every year and that making the change would save lives and give more people the chance of a transplant.
There are more than 100,000 actively waiting for life-saving organs, and around 50,000 more are added annually, and lifting the ban could decrease waiting time for all.

Allowing organs from HIV positive donors to HIV positive recipients with liver or kidney failure could save up to 1,000 people each year.
The ban on HIV positive organ donation was put in place in 1988, and aruments for it being lifted come partly from the fact that the treatment of HIV and AIDS has advanced significantly since.
The Centers for Disease Control issued draft Public Health Service Guidelines in September 2011, recommending research in this area, but said that in the US, federal law blocks it from taking place.
Over 40 medical and patient advocacy groups endorse the act, including the United Network for Organ Sharing, which manages the US’s organ transplant system.

Out of Context: "cure" of infant could lead to misuse of ARV's.

Out of Context: "cure" of infant could lead to misuse of ARV's. 

By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

Almost immediately upon news that a child had "cleared" the virus that causes AIDS, news stories captured everyone's attention. It is captivating due to the fact that people want so badly to have a cure and the media sensationalizes anything that can get ratings and viewership. I am not saying that the media is bad however there was one thing that stood out to me when I first read the story. A 2 1/2 year old girl that was treated within 30 hours of birth and subsequently was able to clear the virus within her immune system. How long will it be before patients get the idea that they will be able to increase their antivirals and somehow get "cured". While this may sound like a crazy thought, it can also be a deadly thought since the medications that we take are highly toxic when taken in large amounts. 

My fear is that it will only be a matter of time before we see patients that deviate from the prescribed dosages of their medications and subsequently cause catastrophic damage to their renal system as well as liver damage. I hope that my fear is unfounded and that people will not take the information provided out of context. 

The greater message that needs to be relayed to the community is that 1 in 5 people who are infected with HIV are unaware of it. HIV is well managed with early detection through testing and treatment. Additionally there is no reason why in 2013 a person is not getting tested and treated for HIV or that people progress to AIDS. In the United States there are still approximately 50,000 AIDS related deaths each year and approximately 50,000 new HIV infections. 

If you are a patient that has read the stories regarding the toddler from Mississippi and you are even considering changing your medications arbitrarily please don't. While the child was given large doses of ARV's it was done under medical supervision and this is not appropriate for all patients. The child was able to clear the HIV virus due to her immune system lacking memory T Cells that develop in a mature immune system. The report will undoubtedly impact how we treat pediatrics which will greatly reduce the 330,000 mother-to-child transmissions that occur around the world annually. 

Patients need to continue their medications as prescribed with complete compliance and adherence. I will continue to preach the gospel of "test and treat". To find a testing center near you text your zip code to "knowit" and the closest testing site will be texted to your phone. 

HIV will not kill you but your passivity and laziness will!

 

HIV will not kill you immediately but your passivity and laziness will!

By: Aaron Laxton, HIV-infected Queer activist and blogger

Last summer I had the amazing opportunity to speak at the ADAP Association Summit in Washington, DC. It was during my remarks that I posed the question, “If we simply provide medications to those living with HIV/AIDS yet we do nothing to improve their quality of life, what have we ultimately achieved?” The reality for those living with HIV is that quality of life is directly being threatened. It is being threatened and it must not be allowed to continue! Any meaningful existence for HIV/AIDS patients is directly being threatened in the form cost-containment measures with ADAP (AIDS Drug Assistance Program), reduction of HIV/AIDS program funding, increased HIV Criminalization efforts and outrageous pricing for new Anti-Retroviral Drugs in the name of research and development, just to name a few. In 2010 Gilead Sciences controlled at least 40 percent of the market share for HIV/AIDS therapies and showed profits of over $6.3 billion.

While some may call me an alarmist and radical, the fact remains that those of us living with HIV/AIDS are simply viewed as a “past-epidemic; a closed chapter- a black mark on our history marked by political-inaction, marginalization and demoralization”; take your medications and do not rock the boat is the current mentality! It is my opinion; big-pharma has bought the silence of a new generation of HIV patients thus quelling outrage over the lack of a CURE after thirty-two years. All of the advancements, therapies and medications we currently have came as a direct result of action from a generation that knew they would never be alive to see it. So please spare me the rhetoric that says, “We have never been closer to a cure as we are right now.” Where is the damn cure?

The Journal of the AIDS Society published new research that projected life-expectancies to approximately 69 years. One key challenge is that an aging population of patients living with HIV present researchers and clinicians with more questions than answers. Our understanding of AIDS-related malignancies has improving unfortunately patients that survived the earliest days of the AIDS epidemic are now staring a new insidious-challenge in directly in the face. Is it related to aging, anti-retroviral drugs, HIV/AIDS or all the above?

While aging populations of HIV/AIDS patients face significant challenges, the HIV/AIDS movement faces profound challenges which could prove fatal if not addressed. We must address philosophical questions regarding where we have been and where we are going if we are to ultimately achieve the Holy Grail, a CURE.

A previous HIV population had quite possibly the purest reason for fighting… a will to live. Today however, there is seemingly a lazy attitude among a younger HIV-community that directly translates into passivity and acceptance of the status-quo. Where is the fight?

Politicians will keep chiseling away at HIV/AIDS funding and programs until there is nothing! Twenty-five years ago, activists and AIDS Service Organizations would raise hell to stop this. Unfortunately many AIDS Service Organizations have lost their sense of direction and consequently no longer serve the populations that they were once determined to help. Those organizations which still have an interest in serving those living HIV are so afraid of advocating for specific issues lest their funding get cut.

We cannot depend on AIDS Service Organizations to place pressure on politicians on issues such as CURE Research, HIV/AIDS program funding cuts or issues such as HIV-criminalization. It is going to patients who are currently passive and lethargic to awaken from their dazed, lackadaisical-slumber and fight for their lives.  It you have ever heard me speak I always say the same thing… politicians do not change things out of the kindness of their hearts. They change because people place pressure on them and they do it out of self-preservation.

Aaron Laxton: My HIV Journey, HIV Meds And False Positives On Drug Test