Deciding whether to start meds or not

[nickchicago]

Hi guys,

I have had HIV for about 2 and a half years.  I'm 24 and have always been healthy.  However my numbers weren't so good last month.
My viral load was above 200,00 and my CD4 was 286.  The month previous it was 100,000 and 320 or so.  I have thick wavy hair and am getting a couple of strands of hair in my hands every time I run my fingers through my hair.  My hair is kinda long so it's very noticeable when the hairs come out. I can tell my hair is becoming thinner and thinner. 
I wanted to wait as long as possible to go on meds cuz I figure the longer I can hold out the better the medications that will be available.
But I feel so tired and I don't want my hair to all fall out so now I'm thinking I should go on meds.
Does anyone have any advice?
It is normal for hair to fall out at a certain viral load level?  I know 200,000 is high.
Will my hair probably grow back once I start treatment?

I have a wonderful boyfriend who is negative, and I want to be as healthy and attractive as I can be.  I am so insecure cuz of having HIV and feel like I have to look perfect all the time to compensate.  I don't want any facial wasting.  My doc said I should try Sustiva.  It looks like everybody here is on it so it must be a pretty good medicine.

Please give me your pearls of wisdom!
peace/nick
 

[BT65]

I'm on Sustiva/Trizivir and it brought my viral load down from 600,000 to undetectable in three months.  Sustiva is a good medication.  I would be SERIOUSLY thinking about starting meds with a viral load like yours.  Good luck!  By the way, what was your percentage?

[Cliff]

What does your doctor say?  Your viral load is high enough and your tcell count is low enough, for me to seriously consider starting meds.  At the very least you should start getting your labs done more often, (every month even), until either you numbers settle down or you make the decision to start meds. 

I don't know if HIV is behind the hair loss, (but it could be if your immune system is stressed).  I noticed some patchy hair loss when I tested positive.  It didn't really improve after I started meds (one of my meds can cause hair loss).  It's now pretty come back (though still not what it used to be).  But I keep it cut low, so it's probably less of a concern for me than it is for you.  Point is....don't assume that starting meds will stop the hair loss.  It may...but if it is unrelated to HIV, then it may have zero effect.

Good luck to you.

Cliff

[Pippet]

I wish I would of started meds sooner.  I feel sooo much better these days.  I was constantly sick and tired and dizzy.  Don't wait until you get sick to start meds.  my numbers were very similar to yours when HIV hit me like a brick wall.

Be well, Pip

[budndallastx]

I would start the conversation with your doctor on what meds he's thinking about prescribing and begin doing my research.  The studies are showing, the earlier you start, the better your immune system will rebound back to a (hopefully) normal level.  Remember, if the meds prescribed are making you feel bad, you should tell your doctor so the both of you can look at options/alternatives.

I was dragging last year and got a lot lot of energy back after starting my meds (Sustiva/Truvada).  The side effects have been minimal after the initial adjustment period.  There are some interesting drugs in development but they will be new and not much will be known about them.  The current set of drugs have some good history so know what you should expect from them. 

On the hair loss front, you might need to look at your grandfather's respective hairlines.  I am not sure you can necessarily blame that on HIV.

Tom

PS - Feel free to drop a PM if you have other questions.

[nickchicago]

Percentages! Percentages!
I had absolutely NO idea what any of you were talking about when you mentioned percentages.  And I've been to AIDS doctors and read magazines and literature and never ever learned anything about these percentages and my doc never discussed their importance with me.
Today I was browsing the site and read that percentages are a key indicator of when to start meds.  So basically this number should be the answer to my question.
I have no idea what my percentages are though!
It is normal for doctors not to bother to discuss this subject with their patients!  Geez!
My doc suggested a one daily pill combo with sustiva i think it was atripla. 
I don't want lipodystrophy.  Is atripla a good regimen that most people starting treatment for the first time have a good experience with?  low risk of lipodystrophy?
the HIV is making my hair fall out.  I know this.  When I first got infected I got really sick and it was difficult to eat and the viral load skyrockets and my hair started to fall out but it all grew back as my health stabilized.  now the viral levels are skyrocketing again and it's a shock to your body.  i'm 24 and the hair is thinning everywhere.  not just the normal male pattern baldness areas, so I know it's from the HIV.

[Pippet]

My hair started falling out at an alarming rate while I was feeling shitty and continued on months after I started meds.  I'm not sure how much of it was related to the stress of everything, and how much was related to the HIV or meds.  I am finally on a regimen I seem to be tolerating and my numbers are improving. In turn I am feeling healthier, eating better, and stressing a lot less.  My hair seems to be staying where it belongs now.   

Pip

[BT65]

Nick:
  Your doctor should tell you what your percentages are if you ask.  Maybe you could try Rogaine if it's really bothering you that much.
Betty

[sdcabincrew74]

Couple of thoughts for ya:

1.  Do not jump, get your numbers checked again in a month, trends are important not individual months.
2.  It does not matter how healthy you feel, the numbers trend is what matters.
3.  If your numbers continue downward, it is time to start meds, OI's and IRS are NOT fun.

If I could do it over I would start meds with a CD4 of 350 instead of starting at 22.  Life would have been much simplier.  Of course, the memories or PCP and MAC make remembering my meds much easier.

SD

[SoSadTooBad]

Start.  You are at the point where you are well within the bounds of the recommended starting point.  I wish to hell I knew enough to get tested more often.  Starting at 78 was a bitch - and all the data points to a worse outcome for anyone who gets a late (below 200CD4) start.

The meds are generally tolerable and very effective.  My hair was falling out too until I started meds, and now I have tons more energy and feel better than I felt in 3 years. 

[aztecan]

Hey Nick,

While your numbers certainly indicate a need to begin thinking of meds, SD makes a valid point.

You gave us your last two lab results. Do you have an earlier one, prior to the 320 CD4 and 100,000 viral load?

You said you had the last labs done last month. Has it been three or four weeks, enough time to get another set.

What you are looking for is a trend.

Based on the two sets of results you mention, I would certainly be thinking about meds. Also, your discussion of being tired, dragged out all the time, all could indicate the overall malaise that accompanies reduced immune system function.

Note, I said could, not does. Talk to your doc and be up front with him/her. Let him know your concerns.

If he is recommending Atripla, well, I hope it works well for you. For many, it is a dream come true (no pun intended).

You worry about lipodystrophy. As someone who has it, let me say it took a decade on another set of meds for this to develop to the degree it became a problem.

All meds have potential side effects - from my allergy pill to the statin I take for cholesterol.

Doesn't mean you'll experience them.

Have that heart-to-heart with your doc. If the pattern indicates it, please don't wait until you are ill before you begin meds.

As others have said here, it can be very difficult once the T cells have dropped and the viral load is skyrocketing.

Let us know what you decide and how you are doing.

HUGS,

Mark

[Brian360]

First of all Nick, you're repulsive in your vanity.  My hair, my hair...geezus please.  Due to genetics my hair started falling out when I was 21 and although vanity at that age told me to slit my wrists, I didn't.

But just the same I noticed my leg hairs seemed to be thinning out during my low stages (CD4 <75) about half a year ago.  At that point I was taking meds but because I started my meds already behind the preverbial 8 ball it could have been cause by some condition within the ever-changing HIV process.

You know, from what my doctors tell me, that once you get below that magical 200 CD4 count level you get put in that "full blown AIDS" category.  And even though you feel fine, you probably should have started meds when you hit 500.

Peace

[steps]

I can unstand your wanting to wait as far as taking meds.
It can be a frighting thing not knowing how you may react to them.
I have been positive for well over 18 years and have been on meds for less then a year now. I am taking viracept with combivir at persent i am undetectable with t-cells close to 500. 
I can unstand your fear of losing your hair. It is one thing to be hiv another to have to live not looking healthly while being positive.
I know more then 20 other hiv people some were near death before taking meds a few others who i will miss very much passed away.
None of the people I know of have never had any problems as far as hair falling out. Your comments are the first I have never heard of.
I worried about having my own body changing in ways that might make my life seem not worth the effort. It would be one thing to be ill another to look like a walking desease.
I took the meds because I choose the chance at life rather then no chance at all. I wouldn't fear the hair lose. If your losing hair it is very much likely nothing to do with hiv.
You sound like a good person who deserves and needs to be around a lot longer.
I wish you very much luck and if you continue to wait on meds set an absolute level to not go under and pay very close attention to your lab results.

[antibody]

the longer you wait the harder the drugs are on your body. i too wish i would have started treatment earlier.
any of the combos work so like everyone says talk to your doctor about the best one for your life style. i started on Sustiva-Truvada combo but after 9 months i couldn't handle the Sustiva anymore and switched to Reyataz boosted with Norvir and Truvada and has been a breeze ever since.

[stillsane]

worry not.
that hair loss thing. i have heard it from quite a few people actually. mostly it settled down once they started to feel better.  if you are getting stressed about this and overdoing it at the gym etc, thats as likely as anything else to be the cause.

when i was quite unwell at one point, before starting meds, a few patches of mine just fell right out. but they grew back again a few months later.

anyway, dont worry about starting meds. i think that there is a lot of fear about side effects out there but i honestly wish i had started when my cd4 was around 270 rather than hanging on to see if it would stablise and then seeing it drop rapidly - its a slow climb back out of that hole and i have only just got my cd4 back up to 270 after 6 months on meds. 
i found the side effects pretty minor (on sustiva and kivexa). i know they vary a lot between people but i just had a few nights of wierdness at the beginning which soon became a manageable part of my life.  oh, and this god awful red which spread all over my body, but it was just bit unsightly for a week and then it just went away (it was the sustiva).  if you can, take a long weekend off work (fri, sat, sun, mon) get plenty of sleep and by tuesday you are likely to be feeling more normal again.
oh, and prepare for bizarre vivid dreams - side effect ?  fringe benefit i reckon !  reminds me of trippy weekends in the 90s, aciiiiid...

[aztecan]

I guess I should have mentioned when I started meds, the cut-off was a CD4 of 500. When I dropped below that was when my doc started talking treatment.

I was so very lucky that, just at that time, protease inhibitors were introduced.

I started with a CD4 of around 440. That also is my CD4 nadir to date. I became undetectable in two months and, aside from a blip in January, have remained so. My last CD4 was 1,332.

So, yes, I now have some lipoatrophy and lipohypertrophy. Knowing what I know today, would I have refrained from starting meds until my counts dropped or I became ill.

No way.

I count myself lucky just to be here to greet the day each morning.

HUGS,

Mark

[gracedtraveller]

Start! 
with your viral load and CD4+ count it's time

if you delay you risk some very nasty opportunistic infections and you will rebound more slowly

I have friends who got hit with toxoplasmosis and PML because they delayed.... DON'T

the side effects are for most people manageable after a period during which your body has to adjust... both to your immune system bouncing back and to the new chemicals being processed through your liver (for most at least)

Your VL should plummet to below detectable (50 copies/mL) within 3-6 months, your CD4+ should slowly increase (especially as you're young)

(when had my first VL in '97 I had a VL of 8+ million and CD4+ of 650, went straight onto treatment. I've had a VL <50 for 9 yrs now (with a few blips) and CD4+ of >1000 for the past 6 years, had 2 drug changes in that time (went off indinavir (toxic )) and d4t (bad for lipo  )

Other things you can do:

• stay informed with reliable info: The Body, Project Inform, AIDS Map (UK), MedScape
• Keep working
• Have a fabulous sex-life ... it's so good for you 

Neil

[richardhg]

Hi there.

From your stats, you should probably be addressing the meds issue.

I would make the point that looking at everything that happens to you as a consequence of having HIV is a bad move. You are at the age when a lot of guys start losing hair, and it may be simply the passage of time that is doing this.

So I would point you first at Wikipedia, and suggest you read about leaned Helplessness. Sounds like you have moved into that situation with your doctor: you accept what he is telling you, without feeling like you area  partner in your own therapy. http://en.wikipedia.org/wiki/Learned_helplessness

Here is a quote from the Wikipedia:

Learned Helplessness is a psychological condition in which an animal has learned to believe that it is helpless. It has come to believe that it has no control over its situation and that whatever it does is futile. As a result, the animal will stay passive in the face of an unpleasant, harmful or damaging situation, even when it does actually have the power to change its circumstances. Learned helplessness theory is the view that depression results from a perceived lack of control over the events in one's life, which may result from prior exposure to (actually or apparently) uncontrollable negative events.

OK, so the next step is to start looking at nutrition. A couple of months ago, The Journal of the American Medical Association published the first article I have ever seen them publish on HIV and nutrition. It was a study on the trace mineral selenium, and the study showed that HIV+ people taking selenium saw an increase in their T cell count, and also a reduction in their viral load, regardless of whether they were taking meds.

Just a hint: if you are taking selenium, take it on an empty stomach, because Vitamin C interferes with the uptake.

Back to the plot. The mainstream medical community are only now beginning to look at nutrition and HIV, and you are going to be seeing a lot written about this in the next few months in the mainstream medical journals.

You also might like to read a book about HIV and nutrition, written by Professor Harold Foster. Strange story. He is a geography professor, and he studies disasters. When he looked at the highest infection rates in Africa as a natural disaster, he noticed that they were happening in the countries with the lowest soil selenium.

He published a book, "What really causes AIDS", which is available as a free download at his website, hdfoster.com and based on the theories in the book, he has been running nutritional studies in Africa, giving people supplements of certain amino acids and selenium, and is going to publish his results in the near future. His book is a fascinating read.

But my major message is, start getting into health and nutrition. Do you exercise regularly? Are you eating well? These are important in keeping you healthy.

[PaulinNJ]

Nick-
When I was first diagnosed in July 2001, I had a viral load around 40,000 and CD4 of 124...it was a routine check up when I found out I am poz but technically, I had AIDS. For the first year and a half, my doc put me on antiretroviral (as I recall, Sustiva, Viramune, and Zerit. he wanted to leave me off protease inhibitors as they are more harsh and have more side effects for as long as possible, IF possible. Well, some people have side effects from Sustiva in particular in their dreams - literally. I have one friend who has been poz for over 20 years and remains on only Arv's, one of which is Sustiva. It works for him - his CD4's remain above 900. I had horrible (think Freddy Kruger) dreams for a year and a half on Sustiva but my doc asked me to stick it out for as long as I could. I did (nearly going crazy in the process) and after about 2 or so years my counts plateaued around 400+ and my viral load went way down (not undetectable but in the thousands). As it was clear the Arv's alone weren't boosting my immune system enough, we decided to add protease inhibitors to my regimen. All throughout Arv's and Pis, I've had stomach problems, sometimes it ain't pretty, but what's the alternative??? My point is, here it is six years later, and while I still have side effects (mainly fatigue), my CD4's are well above 1200 and I have been undetectable for some time now.

As far as your hair goes, discuss it with your doctor...but when I was first diagnosed, something in my brain (survival instinct?) clicked and I decided that my priorities were (and still are) my physical health followed very closely by my mental health - so I sought out a great doctor and have switched doctors since then - I have learned to become my own advocate and not just blindly follow 'doctor's orders' blindly, but to ask questions and research online. I HAVE to be comfortable with my doctor as you should be.

As far as starting meds, it sounds as if you should have begun taking them when your CD4 went below 400, but some say 300. It's an uphill battle as the more original t-cells you have, the better- copies work well, but not AS well as originals. Perhaps you should consider Arv's for several months to see how well you do and decide with your doc from there. I wouldn't wait another day. I have heard of Atripla ( another combo drug) and I recommend your doctor also monitor your heart functions before or soon after if you start it as well as your liver functions with whatever you start as everything you put in your mouth is filtered through your liver. I was taken off ALL meds in 2004, and within a year my CD4 went from 800+ to 300 because my liver was overtaxed. Atripla RARELY causes heart problems, but better to be safe than sorry.

And as far as your hair goes, personally, I find a lot of shaved/bald men very sexy! Keep me posted as to your decisions.
I ope some of this helped.
Paul

[aztecan]

Hey Nick,

Just to add to what Paul and others have said, you can adjust your meds to best fit your lifestyle, etc.

After 11 years on Crixivan (Indinavir) I just switched to Sustiva a month ago. I have to say, it was certainly interesting and, for the first 10 days I wondered which was worse, the hump caused by a decade-plus on Crix or the CNS side effects of Sustiva.

But, during the past week, things have smoothed out and I think Sustiva will be OK for me.

Many people, including me, have had second thoughts when they experience initial side effects.

I have found that, whether it was Crixivan, AZT and 3TC, which took about six weeks to settle in, or the Sustiva, which apparently will be fine after only four weeks, I had to give it time for my body to adjust and get used to it.

I added this in the event that you decide to start meds. Don't be put off by the initial side effects. Give the meds and your body a chance to become acquainted.

I usually allot two months for this, but you can decide what is best for yourself.

Good luck and let us know what you decide to do.

HUGS,

Mark