Subscribe to this blog's feedI have been vacillating about how to begin this first entry for some time now. Today, for the first time in my HIV experience, I am wholly able to empathize with every brethren that has ever been nauseated by their meds.
I have been on meds for several years, and quite successfully at that. Even in the beginning, and after adjustments had to be made, I can honestly say, that I have never had to suffer any ill effects from my drugs, save for the nasty experience I had with Zerit early on, but that is a whole other story.
Let us go back to the beginning of this saga.
For four, or five years, I have successfully been on the cocktail of Trizivir and Viramune. Undetectable VL and CD4's that have been ever constant, rarely varying from 500-600 something. Aside from an increasing amount of truncal adiposity, no real problems to kvetch about.
In October of last year, I went to my regularly scheduled quarterly visit with dear Rachel, whom I've referenced on many occasions, as my ID doc. We exchanged the usual banter, caught up on each others lives, went through an exam, and scheduled labs. She was excited that my previous labs had exhibited a whopping 900 CD4. After the WOOHOO's, and backslapping (for this was a momentous breakthrough), we discussed whether I would pursue an STI. In June (previously) I had been asked whether I would like to participate in the study that was just scrapped a couple of weeks ago. It was double blinded, so there was no way to know ahead of time whether I would fall into the group that continued to take my meds, or the group that would embark on an STI. I had been thinking about whether I could get away with an STI for some time, because I couldn't see any way around the continued weight gain around my girth. I agreed to think about it. I was supposed to call her in a week to find out what my numbers looked like, and then make a decision about whether an STI was feasible. I came to my friends here at aidsmeds, and asked the group what they thought. The popular consensus was that it would likely be ill advised, considering that my lowest CD4 was originally 70. I dithered about it, and decided that it might not be a very good idea. It would be a shame to lose any ground I had gained, but there was that little niggling idea planted firmly in the back of my mind. .......niggling, niggling..........900 niggling
Anyone who knows me also knows about my memory lapses, and the ongoing battle with brainfog. Well, like a barn happy horse, I did it without calling her first. IF I had called her first, I would have known in advance that the 900 was only a blip. We had discussed at length that there was new information that indicated that Viramune actually stays in the system for an even longer period than was originally thought, and that I should continue the Trizivir for two weeks, beyond the stopping of the Viramune. (The new recommendation is two to three weeks)
Hot to trot, and barn happy, I embarked on ceasing my meds. Last dose on the last day of November.
I have no idea what I expected. I suppose I thought that I would start to feel better, and my brainfog would improve, and I would have some energy. The answer to that quandary was no, no, and no.
Went in to see Rachel last Thursday for my regular appointment. I was scolded, and ordered to resume meds immediately. My labs had revealed my usual 600, on the previous draw (Oct), but I failed to call and find that out before ceasing meds.
Whoopsie!
She went on to inform me that the study I had been offered in June was being yanked immediately, due to profound problems. As many of you may have read, the patients who were allowed the STI arm of the study, on the whole, progressed far too rapidly to plummeting CD4's, bounding VL's, and all manner of poor outcomes.
Did I mention that I am also a procrastinator? OK........well I am. So there it is. (and Bob's your uncle)
I decided to take my first dose of meds last night at bedtime, so that if anything untoward were to happen, I would be blissfully asleep, and not be aware of it. No problem.
This morning was different. For the first time ever in my life, I had a little problem after I took my meds. I have always been a happy little pill taker. I can shovel entire handfuls of various tablets and capsules into my mouth, and gulp them down without a thought. Easy.
However, my tummy went into revolt about a half hour later. I have always felt empathy for my many friends who suffer daily nausea (and other sundry difficulties) after taking their meds, but had never experienced that particular delight myself.
I now have a new perspective on the subject. I have a renewed respect for all of our friends that go through this on a daily basis, but continue on anyway. Easing around, to insure that the drugs stay down, because we know we must retain them in order to fight this dastardly little virus. I have one friend who literally gags her meds down every morning like clockwork, and then must fight an ongoing battle to keep them down for another hour, or two.
Every day. No exceptions. My deepest and most heartfelt understanding goes out to all of you.
I'm sure that my body will eventually get back into the swing of things, and hopefully this will be a short lived thing.
I had to go lie back down on the bed, and let it pass for about an hour. While I was lying there, I thought about this initial entry. I thought about my friend, who has this very problem every day, and can't go lay back down. Or even the hundreds, if not thousands of people who do this daily, and cannot go lay back down.
I definitely have a renewed respect, and a whole new perspective on their plight.