Going on Holiday

At the end of last year, the "cocktail" of antivirals that I was on started producing some rather severe side effects. I found out first hand about lipodystrophy when my belly got huge, making me actually look pregnant. More frightening, though, were the strange things that began happening to my kidneys -- my blood test results went haywire, and my doctor actually had to send me to a renal specialist. When I suddenly passed a bladder stone for the first time in my life, my doc and I decided it was time for me to come off the cocktail for a while, and look into a different combination I could try. I went on my first "drug holiday."

I had come off other combinations before, for various reasons, but I always had a new cocktail that I hadn't tried waiting in the wings, and I made sure to get on the new drugs right away, terrified that my viral load would skyrocket if I wasn't on something to fight the virus. This time, however, I didn't have a whole lot of options left to me, since I had already tried most of the available antivirals. I had to wait for a new drug to get approved before I could put together a combination that would be effective (and my doc estimated that would be about two or three months). For the first time in years, I found myself completely cocktail-free.

At first, it was a blessing. My pot belly started to reverse, and my body began to feel more comfortable. The kidney and bladder problems stopped immediately, confirming my suspicions that the drugs I had been on were the culprits. And all those other side effects that seem to come along with most of these types of drugs -- diarrhea, nausea, drowsiness, etc. -- were suddenly gone. I realized that I had become used to all of those things on a daily basis, and for the first time since I could remember, I actually went through entire days feeling -- good! Maybe this "drug holiday" idea wasn't that bad after all.

But I still had that vision in my head of the virus coming back to life and multiplying, so my doc and I remained quite vigilant. He had me in his office every two weeks to check my blood work, and he had quite cleverly taken my t-cell and viral load counts before I went off my cocktail, so we would have a marker to check my future tests against while I was on holiday. After three months of no antivirals, he tested my t-cells and viral load again. I was amazed. Neither one had changed significantly.

I found out that a lot of other people I knew were on drug holiday as well, something I hadn't paid a lot of attention to before. Most of them were off the antivirals for the same reason I was: they had simply run out of drug combos, and were waiting for new drugs to be approved. But while I was speaking with them, I noticed that, like me, they seemed to be looking and feeling better than they had in a long time. Most of them were worried about their viral loads going up, too, but they all commented on how nice it was to be free of the side effects.

As I write this now, I am still waiting (for reasons too complicated to explain here) for my new combination to come through. After six or seven months of being off the cocktails, though, I feel better physically than I have in years. My t-cell count has gone down a tiny bit, and my viral load has up a tiny bit, but amazingly, they are still very close to the original test results I took back in October. I am anxious to get on my new cocktail, but I know I'll miss this feeling of freedom that I've been allowed to have, and I'm not walking around totally paranoid about the virus taking over my body all the time. For a short while, I've actually felt, well, normal.

I was forced into taking a drug holiday this time, but now I think I would consider doing it again as a choice. It was good for my soul to take a rest stop on the HIV Highway, even if it was only for a short while. I don't know if I would be willing to recommend this kind of vacation for everyone doing antivirals, but it is certainly something you might want to discuss with your care provider, especially if you've been on them a long time.

As for me, I'm ready to get back to the fight now, as soon as my new drug becomes available. As with any holiday, it was great to be away from everything for a little while, but now it's time to get back to business....