Meds, Mind, Body & Benefits > Questions About Treatment & Side Effects

AIDS diagnosis on first set of bloods

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hussy_24:
Hi, well you can guess by the title that my visit to the doctor wasnt very good.

I was infected with HIV earlier this year, believed to have seroconversion illness in may, tested negative at that time, tested positive in september, bloods were taken then but lost -,-, new bloods were taken in november, the results are: CD4 of 218 and ViralLoad of 18,827. Doctor said this was unusual for someone newly infected and says it looks like i have been infected for a number of years but the test results from may are clearly hiv negative. any thoughts on this? seems like quite poor prognosis :(.

doctor is recommending a re-test, but then recommends the following meds:

Kivexa (abacavir with 3TC?) with either a) Efavirenz (sustiva?) or b) Nevirapine (virumune?)

I was quite shocked, to say the least, i didnt think i would have to start on meds so soon, am only a kid (24..), live at home with parents who dont even know i am hiv, let alone an aids diagnosis on my first set of bloods. The irony is that i feel much better than i have since before may, i've started working out again, dont feel so tired anymore, but i'm adamant not to let this news get to me, just would like some input, any caution with this drug combination etc?. The only thing i feel wrong with me at the moment is my stools are somewhat softer than normal although they are controllable, i fear going on meds so much....

 :(

Miss Philicia:
I guess the one test could have been a false negative and you have, in fact, been infected longer than you think.   I was around your age when first infected 13 years ago, and around the same initial CD4's.  If it makes you feel better I have +700 of them now, and I've never had a serious OI or been in the hospital.

Sounds like an OK starter regimen but I'm not really an expert on all the combinations, though I've pretty much been on all of them by now.  Once you make it though the first several weeks of HIV meds you'll be OK.  Sometimes it can even be easier than you may think, though I've definitely had many really suck for a while. 

Other than that and depending on where you live I'd recommend locating a support group for newly infected individuals that are around your age.  The emotional crap is as difficult as the physical diagnosis even if you think you're dealing with it OK... just my 2 cents.  Good luck.

newt:
Well it's not good, but it's not that unusual, unlucky perhaps but within what a doc would expect to see from time to time - about 1 in 100 people will need to start treatment within one year.

If you only tested positive in September it is possible your immune system will recover a bit more, or even considerably more, from the effects of the initial stage of infection.  But, not to play with fire, if your CD4 is still around 200 after the next test, or one after that maybe, do think about starting treatment. CD4 below 200 puts you at risk of serious opportunistic infections.

The options for first-time combo are 2 nukes + EITHER a (boosted) PI OR an NNRTI.

NNRTIs - Sustiva and Nevirapine are both NNRTIs, not much to choose between them really, some people do better on one or the other. 

PIs - Several to choose from, 1 or 2 x day.

Nukes - Kivexa/Epzicom (abacavir + 3TC) and Truvada (tenofovir + FTC) are both good meds each containing two nukes. Combivir (AZT + 3TC) also works but is not as easy to take as a rule.

You can about the side effects in the drugs section of this website, or if you prefer in the Test Positive Aware Network drug guide which is simpler.

Your doc should order a resistance test before you start treatment.

There is no best 1st time combo, each has its good and bad points.  The drugs need to fit your life, eg if you really need a clear head, Sustiva may not be a good choice, if you like a beer or two a PI may be a better choice, if you need to keep you drugs private and avoid shared fridges etc an NNRTI may be a better choice. Etc etc (doctors forget about these things).

It is important to be prepared mentally for starting combo, it is a commitment and your first time round is the most important opportunity to hack the virus to pieces.  It is better to wait until your head's straight about taking the pills than to set off sudden like and do it badly. So, personally speaking, I wouldn't be rushed into bed with combo if I wasn't happy about it, but I would be mindful that a CD4 below 200 is getting dangerously low.

i-Base treatment guides (UK)

You kinda need to talk to someone (maybe yourself even) about a strategy to deal with home life if you do start meds, the side effects in the beginning can sometimes be hard to disguise.

Despite low CD4 long term outlook is good. Your viral load is weedy and will be easy to hammer.  Your immune system is young enough to recover well with treatment. Plan for the usual things in life - love, holidays, work, boredom, debt, stepping on drawing pins, happy Sunday afternoons with friends etc  :)

- matt

Ann:
Hi Hussy,

Sorry to hear about your diagnosis and disappointing first results, but I agree with Matt that it's not that unusual and in fact, your CD4 may yet go up on its own.

Regarding the possibility of a false negative, that is unlikely in the extreme. The tests are very good and if you had been infected for some time, you would have tested positive, no doubt about it.

Hang in there and try to get a couple more results under your belt so you can see if you really do need to start meds right now.

Good luck and keep us posted.

Ann

SoSadTooBad:
Hussy - I was in the same boat - tested positive, and then got the news that my CD4s were 136, and then when the doctor did the resistance test before deciding what to put me on, they came back at 78.  My VL was 14,000.

Was hard to take, definitely.  This happened to me in May/June of this year.  Wow, those were some bad days - I thought seriously about walking in front of a bus.

Don't fear going on meds - they work, and they are not the end of your quality of life.  I can tell you that the combo I am on is really pretty easy to take - Combivir/Sustiva - I take one Combivir at 7am, another at 7pm and then the Sustiva at bedtime.  I use my cell phone alarm to remind me to take the pills, and I have a 7 day pillbox that keeps me organized.  I have some doses stashed in my office, my briefcase and my car in the event that I am somewhere other than home at 7:00pm. 

Most regimens can be very easily concealed if you need to - nothing to refrigerate, and other then the Sustiva pills having the name on them, the pills could pass for vitamins or antihistamines.   

It gets better, I can attest to that - my mind and body are in a better place after 5 months of treatment, and my CD4s were 225 back in Sept, with an undetectible VL.  More blood work later this month, hoping for continued improvement. 

Hang in there - reading these forums helped me get through some tough days and tough nights - you will be ok. 

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