Found out june 24......need guidance and help re meds

[ruralguy]

I found out in a routine physical and was taken by surprise.  I've told only my partner of 26yrs (who is negative) and 2 gay friends.  Phew what an emotional crash.  Deep shame and guilt and embarassment, anxiety attacks, out-of-the-blue crying bouts....but now, some 6 weeks later I'm more stable but I know there's a lot more to come. 

My first tests are VR - 9000 and CD4 300.  Next test results in about 2 weeks.  I'm 56, in good general health and fit.  Seems like meds are in order but I'd like input from people here.  I'm worried about bad side effects, of course.

[Nashvegas]

Hey Ruralguy -- I'm sorry that you've tested positive, but glad you found these forums.  I'm similar to you in that I tested positive after nearly 20 years with my wonderful partner, who has remained negative.  Other than my partner, I've only told a couple of other gay friends.  Finally, I, too, worried about the side effects of meds, and I can tell you that I have yet to experience a single negative side effect from my combo (Viramune + Truvada).  None, Zero. Zilch.  I could just as easily be taking a placebo or an aspirin.  Not everyone is so lucky, but for most people the side effects are minor and manageable, and if they're not, there are lots of other combos to explore.  So don't let your fear about side effects prevent you starting meds as soon as you and your doctor think it advisable.  I wish that I had started earlier, rather than waiting until my CD4 count fell below 200. 

Again, welcome to the forums, and continue to keep us posted.

 

 

[ruralguy]

My doc (an ID specialist) was puzzled by the CD4 of 300 - he thought it should be higher, hence the wiat for a second test.  I am curious to know what you wish you had started earlier on meds.  Anc can you tell me when you take your meds, how you deal with compliance, etc. 

[webontheweb]

NUMBER 1 rural guy-  find a mentor through this site or one if there is a clinic where you are.  It helps to form a bond with someone more experienced in this who can help get you started and guide you along.

NUMBER 2 in terms of adherence, many of us use a pill case. I have one with two compartments per day for the week.  I only take one pill once a day so I can load it up with a two week supply.  I take medication at bedtime so I keep it in the bathroom and it is the last thing I do before I go to sleep.  My partner takes his in the morning.
Number 3:  We all react differently to drugs.  The most important thing on any regimen is to stick with it, talk to your doctor, and start a log book recording your readings from every visit, etc.  It helps to be educated!
Good luck to you and there are wonderful people here who can help guide you!~
Cheers!

[mecch]

Hi, sorry about your diagnosis.
You're having a normal reaction so dont worry about being strange or anything for being in a state of shock, especially at your age after all these years, what a surprise!
Of course you know the good news is that with treatment HIV is quite manageable.
Why was your ID surprised about 300 CD4.  Thinking it would be higher, why? Just curious.
Anyhow, its normal also to worry about HIV medicine and side effects, after all we have seen in almost 30 years of this virus, but the good news again is that HAART these days is quite tolerable and anyway, there is no predicting how you will react, if at all badly.  Like the other poster says, some have no bad side effects whatsoever.
So if the Doc orders meds, you ARE going to take them, and the virus will be controlled. 

How is it going with your partner?  Are your gay friends supportive as well?
Good wishes!

[Nashvegas]

I wish I had started earlier because (1) the medical research increasingly has suggested that starting earlier leads to better outcomes, and (2) my fears about side effects have proven to be unfounded.  It's also been slow going getting my CD4 count back up there (though I'm not really freaked out by the slow climb as long as I stay undetectable).  That being said, I waited because I have crappy health insurance (with a $1,500 annual cap on prescriptions) and I wanted to participate in a three year clinical trial that would pay for my meds.  By the time I finally was enrolled in the clinical trial, my CD4 count had dropped to 166 and I technically had AIDS, but the clinical trial has been great and I've been very happy with my regimen.   So if you've got decent insurance and cost is not an issue, don't let worries about side effects prevent you from starting. 

[ruralguy]

Thanks for the support guys....this means a lot to me.  A number of questions have been asked that I'll try to answer.

How is my partner doing? Do I have any friends I can talk to about this?: 
My partner is being a gem in possible every way.  He is negative.  We have a third sex partner/friend and he is negative too and being hugely helpful.  I also have a firend who has been postive for 20 years or so and I got in touch with him quicky when I was totally freaked out and he helped.  He is connnected to the medical world in Boston if I want second opinions I can access other docs through him.

How about med care and a support group?  For med care I go to the regional hospital (I live in rural upstate NY) and the doc is an infectious disease specialist - also head of medical affiars at the hospital.  He says he has about 80 HIV patients.  So far so good.  But there simply is no such thing as a support group here.  So I' hoping these boards and a mentor or two from here will help me out.  I've not yet connect wiht a mentor but I'm working it.

Why was my doc puzzled by the CD4 of 300 with a Vr count of 9000?  Because he thought the natural CD4 level should have been higher and he thinks the next test will show that.

[ruralguy]

a few more things....

My thinking regarding meds is that starting earlier is better, esp giiven my age.  It seems that HIV accelerates aging and one can develop wierd cancers and such.  The benefit of starting asap is to hopefully avoid some of that.  MAke sense to you guys?  Are there other vitamins or supplements that are commonly thought to be useful?

And, as someone observed, yes, after all the years of successful safe sex, it feels very very odd that now the same practices lead me to this.  Ugh.  I lost many many friends to this and, for sure, that was a large part of my freakout period.  But it is different now.  So I'm not thrashing around and bursting into tears so much now but I surely am bummed out to find myself in this situation.  The disease will be one hard thing to handle but the mental and social side of it will be the hardest part, at least for a while.

[Assurbanipal]

Hi

Welcome to the forums.  Sounds like you've managed to get a good handle on all this already, so you will probably be fine.

It probably won't hurt to get another blood test before you absolutely decide whether to start or not -- there's a lot of random noise in the measurement of tcell counts and any one measurement is only an estimate of the true number that (statistically) could be as much as 30% higher or lower.

But under current guidelines you should probably start.  If, for some reason you decide to delay, you might want to get your blood tests more often than every three months.  I'm in my fifties too and the studies out there show that we older types tend to progress to AIDS faster than the younger folks in the absence of treatment.  (The good news is that treatment tends to be just as effective once we start).

Regards

Assurbanipal

[ruralguy]

I should add that the next round of tests include determining what strain of HIV I have and what drugs I it may be resistent to.  Also a TB test.  So far no complications with other diseases have been found. 

[positivmat]

Hey ruralguy, welcome to the forums. Sorry to hear about your diagnosis. I am 43 and got infected 9 months ago. When I tested pos 6 1/2 mos ago, my tcells were 325, v/l was 800k not uncommon near the acute stage  I wanted to go on meds quickly to protect my neg partner and because I believe that will help protect my immune system from extra damage. With such a high viral load, I felt like the virus was particularly aggressive or that my body wasn't a good HIV fighter. Some wait, they will explain why.

If you are upstate, you may want to check websites of buddhist and catholic monasterys for support groups. They have really added to the support network where I am. There are 2 very close to me and quite a few within a comfortable drive. I was really interested in attending support groups so I looked all around. Call your local ASO and ask them too. They can help u locate them in some cases. PM me if u want and I can tell u the ones I know about.

I found them very helpful with a lot of long term survivors who were really great about helping me get through that initial shock.

I am on atripla and a search through these forums will overload you with info on side effects. I have been on it for 5 1/2 months and I am nearly undetectable with 644 tcells  my side effects are completely gone (after 8 weeks). I am no longer worried about my health like I was at first. I still have down times but doing much better. 

I got great advice here and recommend you post here for questions about anything you encounter. Someone here has gone before you and will be able to help. 


Good luck and welcome,
Matt