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What is the practical meaning of an AIDS diagnosis?
Nov 4, 2006

Hello from the UK! Thanks so much for your excellent site, which is informative and comforting.

In August 2001 I had a severe flu like illness and tested HIV positive in Sept 01. Ever since seroconversion I have felt quite unwell - fluey and easily fatigued by small amounts of exertion, even with early CD4 counts of 850 (36%)and VL under 10k. I had quarterly bloods and clinic visits to monitor my HIV progression, but in June this year noticed a small bruise-like mark on my leg, later confirmed by biopsy as KS, which was surprising as my bloods showed CD4 401 (22%) and VL of 100k (VL had been around 100k for nearly a year).

I started on ARV Sept 4th (abacavir, emtricitabine and efavirenz OD) and felt remarkably well after only 2 weeks treatment. After 2 months I'm now able to exercise, have way more energy and feel as I used to before seroconversion, although won't have my first blood results on treatment until later this month. I've also had hardly any noticeable side effects and my adherance has been 100%.

My question is that although I only had 2 small lesions, I still have an AIDS diagnosis; what does this mean in practical terms for now and the future? It was a shock as my results had been dropping quite slowly and I had not had any other OIs.

Although my HIV doctor has told me that my prognosis is still quite good, I can't help being freaked by the AIDS label. All the studies I see use "progressing to AIDS or death" as a mark of failure, so that doesn't help.

I guess I also feel angry that I have never missed a quarterly appointment, but still this has happened. I'd really welcome some more information here, thanks!

Response from Dr. Young

Thanks for your post and words from the UK.

It's very heartening to hear that you're tolerating your first-line regimen so well. [I try to emphasize this to our readers, so your observations carry important weight.] I've heard that increasing numbers of UK patients are starting on abacavir-based treatments, it is be good to hear about how you're doing.

With a diagnosis of Kaposi's sarcoma, you indeed do have an AIDS diagnosis, despite your relatively high CD4 count.

Having an AIDS diagnosis is a very bad thing if you don't have access to medications- such is the fate of many millions across the world right now. By stark contrast, once your on medications (and adherent to them), your prognosis takes a dramatically different course. Indeed, you fall into the prognostic category that you hear us speak of here at one of "normal- or near-normal life expectancy".

In practical terms, your immune system was damaged enough before treatment to permit the development of KS, now on treatment, our expectation that the immune function will slowly return to normal and your risk of further complications is greatly dimminished. Indeed, your return to exercise and normalization of energy level speaks to the difficult-to-measure improvement in quality of life that accompanies your treatment.

So, here's to your health. Best wishes, BY

i needs 2 know

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