The Positive Side

Spring/Summer 2009 

Chatty CATIE: Adherence Interference

Five PHAs talk about the challenges they faced adhering to their drug regimens — and how they overcame them. Sticking to your regimen is a must, but it’s not easy being perfect all the time.

Inteviews by RonniLyn Pustil

PAUL RUBBEN, 59

Vancouver
Diagnosed with HIV in 1990
CD4 count: 325
Viral load: undetectable

I STARTED TAKING MEDS IN 1995 — AZT, 3TC and d4T. Things were OK but my viral load was still too high. My doctor started to add different protease inhibitors to my regimen, but nothing seemed to work. I went on liquid ritonavir but after three weeks I couldn’t handle the gross taste anymore. Saquinivir (Invirase) gave me diarrhea of the worst kind. I couldn’t go anywhere without having an accident.

I became very depressed — even suicidal — over the side effects of my meds. I kept my curtains closed and only saw my family and best friend. Some days I spent a lot of time on the toilet. My quality of life ended. My doctor added ddI (Videx) to my regimen but all it did was make me void myself in bed. That was the breaking point.

I decided to stop taking meds altogether. I told my doctor and he advised me not to, but I wanted some life back.

I EVENTUALLY REALIZED THAT IF I DIDN’T TAKE MY MEDS I WOULD DIE. It took me three months to decide that I wanted to live, and I went back on meds in 1997. My doctor recommended I see a specialist and things got better. I had a lot of pills to take but at least I didn’t have any serious side effects.

I started living again. It was kind of miraculous. I started taking some chances and my whole life turned around. I went out more and got involved with an AIDS organization, and through all of this I met my partner (who’s not positive). I had given up on meeting anyone after my diagnosis.

ADHERENCE ADVICE: Do the best you can. Seek help from a professional if you’re feeling depressed. If you’re having problems with your regimen, ask your doctor if you can change meds. Go to a support group or an AIDS organization. Ask others what they do. Most of all, don’t give up! Life is too wonderful.

 

DEE LYNN, 38

Vancouver
Diagnosed with HIV in 1995
CD4 count: 300
Viral load: 16,000

IN 1997 I STARTED a regimen of indinavir (Crixivan), AZT and 3TC. I took all my meds religiously. After a year I developed kidney stones. The doc had told me to drink lots of water — I literally had a two-litre water bottle attached to my arm — but I still got them. I had surgery to get them removed.

I continued on the indinavir regimen until I moved to the UK in 2000. The specialist there asked why my doctor kept me on indinavir after I got kidney stones. He immediately took me off it and put me on Kaletra (along with 3TC and d4T). I was one of the first patients in the UK to start Kaletra and I became part of a research group. I adhered to this regimen with a passion. During that time my CD4 count was 850 and my viral load undetectable.

After six years I began to lose weight rapidly, especially in my limbs, cheeks and face. My specialist kept telling me to stick to my regimen. Then I got a second opinion from another specialist who said I was taking too much d4T for my weight and it was causing lipodystrophy. I became very frustrated that I’d agreed to be part of the Kaletra research group, where I was assured that I’d be closely monitored, yet the specialist failed to realize the proper dosing requirement for my weight. I began to feel more like a guinea pig than a patient. This tested my trust level with specialists. I had adhered to their advice and knowledge for more than eight years only to end up with complications and side effects.

The d4T caused many side effects: lipo, chronic fatigue, nausea and depression. By 2007, my CD4 count had dropped to 500 and my viral load, which had been undetectable, went up to 10,000. I WAS SO DISCOURAGED WITH THE SIDE EFFECTS AND HOW MY BODY AND EMOTIONAL/MENTAL STATE HAD CHANGED. I no longer had any enthusiasm in taking any meds, so I went on a drug holiday and turned to holistic therapies.

After three months of detoxing from these potent meds, I felt totally renewed and re-energized. My depression was gone and I was very happy and active. My CD4 count steadied at 500. It’s been a year and a half, and I don’t feel like a guinea pig anymore. Taking the meds can be a hard routine to follow, especially when you get side effects and then it becomes about fighting a battle of side effects and forgetting about having HIV. One day I may have to go back on meds but not until I am mentally ready.

ADHERENCE ADVICE: Research and learn about the meds you are taking. Write a daily journal on how they are affecting your body, so that if any side effects occur they can be acknowledged right away. Other than that, it is a matter of commitment and belief in longevity — and following the regimen exactly the way the specialist recommends. You need to take responsibility for your own healthcare plan.

DAMIEN CALLICOTT, 49

Vancouver
Diagnosed with HIV in 1986
CD4 count: 640
Viral load: undetectable

I WAS CARING FOR A FRIEND who was co-infected with HIV and hepatitis C. He’d been a crystal meth addict for the past 11 years that I’d known him. In caring for him, I fell to temptation and became wired to meth.

Until meth was involved in my life, I had always been very good at sticking to my regimen. It’s scary how quickly this drug makes you not care about the things that are most important when it comes to taking care of yourself. After about six weeks of daily use, I became so focused on my friend and his care that I started missing doses of my own meds, or sometimes I took my meds twice, because I couldn’t remember if I’d already taken them. I kept a chart to show that my friend’s meds had been administered. I did not, however, have the insight to do the same for myself.

I can’t even guess at how many doses of my meds I missed. On some level I was aware of what I was doing, but at the same time it didn’t seem to matter much. EVENTUALLY I FELT AS THOUGH EVERYTHING WAS SPINNING OUT OF CONTROL AND I GAVE UP ON LOOKING AFTER MYSELF. This went on for about a year.

My friend has been gone now for 14 months and I am clean. Getting away from the meth was not easy, but I made it through with the support of family and friends.
Right after my friend passed away I was able to return to a regular schedule of meds, with the same regimen. I was very lucky because my counts remained relatively unchanged. To this day I never told my doctor because I was embarrassed by my actions.

ADHERENCE ADVICE: Don’t be afraid to let your friends know you’re having a problem; I got more support from them than I expected. Never underestimate yourself or your friends. We all need help at some point in our lives.

KEN MONTEITH, 48

Montreal
Diagnosed with HIV in 1997
CD4 count: 210
Viral load: undetectable

I WAS DIAGNOSED with a CD4 count of 4, and I had confidence that treatment was going to keep me alive as long as I was adherent. So when I started my first regimen — Crixivan (three times a day fasting), d4T and 3TC — I took it extremely seriously and made adjustments to my lifestyle to accommodate it. I organized meals around fasting times and woke up early to take pills, even on weekends and holidays. I became the poster-boy for treatment adherence.

Then I started to notice significant problems with lipodystrophy, so I switched to a regimen that should have been easier in terms of adherence — Sustiva (efavirenz), 3TC and tenofovir (Viread). I took the first two together at night and the third with breakfast in the morning because I’d heard it would be more effective with food. However, I started to notice problems with my adherence. I was often forgetting the tenofovir in the morning as I rushed around getting ready for work, realizing it only when I got home in the evening.

AFTER YEARS OF TREATMENT I WAS NO LONGER READY TO CHANGE MY LIFE TO FIT MY MEDS. So I did the reverse — I moved the tenofovir dose to the evening with my other HIV meds. That helped me avoid missing more doses.

What I find fascinating is that simplicity was not the thing that mattered to my adherence. My first regimen, however complicated, was not a challenge because of the urgency I felt and probably because its omnipresence in my life didn’t let me forget it. It was the simpler regimen that had to be tweaked to work for me.

ADHERENCE ADVICE: Know your lifestyle and habits and don’t be afraid to talk about them with your doctor. This could help identify the treatment that will best fit your life. And don’t lose sight of why you are taking anti-HIV treatment. The pleasures of the days and years to come make the little hassles worthwhile.

 

TROY PERROT, 37

Charlottetown
Diagnosed with HIV in 1993
CD4 count: 1,060
Viral load: undetectable

WITHIN THE FIRST YEAR of starting meds in 1996 I took a drug holiday because I was going on a two-week vacation with a friend who didn’t know of my HIV status. I stopped taking my meds altogether. I didn’t even take them with me (and no beeper!). Due to extenuating circumstances it was imperative that I not disclose my status to this person.

I felt really guilty the whole time I was away — and scared. The doctor was adamant that I shouldn’t miss a dose by more than a half hour, so I was freaking out about it.

As soon as I got home, I immediately went back on my meds. I went to my doctor about two months later and told him what I’d done. He slapped me silly. He was concerned and upset with me. It really worried me to see if I was going to become resistant to my meds. I did blood work that day, and when he got the results, my doctor called to say I was lucky: My counts didn’t even spike.

I would never recommend doing what I did. It wasn’t worth it. I was very angry with myself for not having had the guts to tell that person. But the situation made me never ever put myself in the position of having to hide and put my health at risk because somebody didn’t know my status. Now I don’t hide my meds, I just haul them out. And if someone has a problem with it, it’s their problem, not mine. These meds are saving my life and I’m very conscious about taking them.

ADHERENCE ADVICE: Talk to your doctor and find a regimen that works for your schedule. If you can’t find a regimen that suits your lifestyle, there will always be adherence problems.

For more adherence info and tips, read “The Importance of Being Adherent” in the Fall/Winter 2004 issue of The Positive Side.

Ken Monteith photo: Jeremy Schruder