starting treatment

[shellshocked]

I have a question about starting treatment with HAART. I know that treatment is not generally recommended until a person's CD4 count falls to 350 or below. I was infected in Aug of this year and received the terrible news on Oct 26 that I'm HIV positive. Fortunately, I did not have any symptoms or illness during the seroconversion period, and I'm feeling quite well now physically. The lab that did the HIV testing also did a first CD4 count (from blood drawn on Oct 9), which came back at 720. On Oct 29, I had blood drawn for a second CD4 count, viral load, etc. I realize that until a baseline is established it will be difficult to assess the need to begin treatment.

I have always been in excellent health with a strong immune system. I very rarely get cold or flus. For many years, I have been exercising every day, including regular workouts at the gym. I also have a good and balanced diet. I don't do drugs, rarely drink alcohol and don't smoke.

Because I was so recently infected, I'm wondering if there is any evidence/research to support early treatment (as  opposed to starting treatment once the CD4 count begins to fall below 350). The thought of treatment scares me a lot, and my preference would be not to take meds until I absolutely have to. My family doctor is referring me to an infectious diseases clinic for their opinion re starting treatment immediately vs. waiting.

I'm feeling overwhelmed by what's happening right now and my biggest source of stress involves anxiety about becoming dependent on meds and the health care system. But if there's real evidence to show that I would benefit from starting meds right away, given that I was so recently infected, then of course I would consider starting treatment. I would appreciate any feedback or thoughts about starting treatment during this primary infection phase. I'm feeling dazed, confused and really scared.

[komnaes]

Hi there,

First, welcome to the forums.

To sum up briefly there are two theories - first, you're right that most doctors will not recommend starting meds unless CD4 count has dropped below 350, though some are saying that it should start at 500; second, some doctors will only put a patient on meds unless there's an established trend that the count is dropping consistently below 200.

In your case I think it's too early too tell but with a count of 720 I doubt your doctor will recommend starting meds. The important thing is to talk to your doctor, discuss fully with him your concerns and ask any questions you might have regarding the pros and cons of starting meds early or later. But again, in your case, as alll the vitals including CD4 seem good, I wouldn't stress myself too much about treatments yet. Meanwhile, continue with your exercise, get informed (so you can ask more appropriate questions) and if you feel like it getting in touch with local support groups or find yourself a counselor to deal with the feelings of anxiety and confusion.

It's normal to feel scared, but as you learn more it will get easier adjusting to your new status.

Best of luck, Shaun

[mike in VT]

Hi Shellshocked

From what you have said your CD4 sound good to me.  My opinion would be to wait until you have a baseline to go by.  It's important to know which way your numbers are going before you worry about the meds.  There are pro's and con's to starting meds early.  You can get a jump on the Virus by starting them early but you can also risk developing a resistance to them.  That is the last thing you need.  If over the next few test results you see a sharp drop in your numbers you may want to consider starting meds. If they are holding their own then I would not panic at this point.  I know it can be hard not to worry but try to hold off on any rash desire to get a jump on this.  If your feeling fine and are other wise in good health just keep doing what you are doing and get the baseline and take it from there.  You could hover at 720 for weeks months or even years.  you could go up or down.  The only way to find out is  to get that baseline.  

As for any research you can find some for either point of view, starting early or waiting.  Each person reacts differently so the results will be diffrerent.  Your doing good so hang in there.  Keep up a positive outlook on life and don't make any changes just yet.  Best wishes to you

Mike

[sacinsc]

Wish I had your CD4 count. I was exposed in May and just started meds when my CD 4 dropped drastically. The plan was to get a baseline on me over the next 6 months, but the drop ended that. My doctor did mention that he would want to put me on meds if my VL stayed high and my CD 4 dropped before 400. He wanted treat it aggressive. This is the most aggressive I have ever heard of. The things to consider are the high toxicity that these pills have. They can do damage to your liver and other organs. In my opinion (and im not your doctor) staying off meds for as long as possible would be better for you.

Just talk to you ID doctor. Thats the best.

Matt

[Florida69]

Shell I was diagnoised in January of 2006, by March of 2006 I started taking Sustiva and Epzicom.  I know exactly how you feel however your numbers are not that bad, you hope that once diagnoised you would hope to get through a while and acclimate yourself to be ready for drugs.  For most of us, drugs are necessary.  Anyway, I just wanted to say keep your chin up, things will get better, and ask lots of questions of your doctor to see why he is starting treatment with those numbers.  D

[BirdBear718]

I am sorry you are having anxiety, and feeling dazed and confused.
You have support here.

When your doctors recommend medications, talk to them about it....but remember they are recommending them for a reason. 
Take a notebook along with you to the doctors office every time -- write down what they say, questions you have and the doctor's responses.
It is very important to be organized with your medication.

Keep your spirits up.  Find reasons to smile, especially when you are feeling down.
When you are feeling confused or dazed - post here. AND, call your doctors and talk to them about your concerns.  Use both resourses - use as many resources as you have available.  I am so glad your family doctor recommended you to an ID.  THAT is who you need to speak with about your concerns.  Your general practioner is, I am sure, someone you trust.  Your ID doctor is specialized and will have more current information and studies than the family/general pract.

About feeling overwhelmed with the health care system -- well yes, that will happen.  However, there are resources for you.  Have your ID doctor put you in touch with a social worker/case specialist.  That person will help you with the healthcare/insurance battles...and questions too.  Talk to your ID doctor about getting additonal support and help - the ID doctor should have resources to help you get started.

Contact a local ASO, support group, get out there and network - let people help you so you do not have to carry your anxiety alone.

Again....keep your spirits up.  Find joy and peace in your day.

[RapidRod]

shellshocked, welcome to the forums. As Mike stated, wait and get a couple of labs to see how you're CD4 and VL are standing. I wouldn't recommend going on HAART with the CD4s that you have. You have plenty of time to get a real good idea of how your levels are doing.

[wishful]

Hello all..ima newbie...but i was dg in 2003 while preg so meds were a must. i started with viramune emtirva and viread, now its just viramune and truvada (emtriva& viread mixed)..i have to say that medications and HIV effect every one of us differently, I have had NO side effects at all, and my cd4 are well over 1000 and i still take the meds..(not even every day).and i ahve remained u/d for 4 years..it hinks the meds saved me and as long as my labs are good..i will continue to take them...

[John2038]

You might want to consider at least the following points:

1) The probability you might have to develop OI
http://forums.poz.com/index.php?topic=17158.0

2) The drugs side effects
http://aidsinfo.nih.gov/other/toxicities.asp

3) The SMART studies intermediate outcome

4) Your current condition based on your blood test, hepatitis, syphilis, liver, kidney function, diabetes, herpes, TB, etc

5) Take additional tests to take a final decision such as
resistance, LTNP, tropism, clades, etc

6) Others parameters
family antecedents, personal history, etc.
Then based on all these information, you should be able to take a better decision with your doc.

NOTE
Before taking drugs, you might also stay the healthiest as possible, following for eg  recommendations such as
here http://aidsinfo.nih.gov/Guidelines/Default.aspx?MenuItem=Guidelines
eating healthy, doing sport, etc..

[megasept]

I'm feeling overwhelmed by what's happening right now and my biggest source of stress involves anxiety about becoming dependent on meds and the health care system. But if there's real evidence to show that I would benefit from starting meds right away, given that I was so recently infected, then of course I would consider starting treatment. I would appreciate any feedback or thoughts about starting treatment during this primary infection phase. I'm feeling dazed, confused and really scared.

Hi. I am generally in the "wait for treatment" camp. The replies so far have been very thoughtful, with good links, ideas, and even advocating something different for themselves (see Matt's) than possibly for you. Your precise question on efficacy of treatment at 300/350 CD4 vs. 500 is to be the subject of a study starting soon (years late I would say).

RE: "...anxiety  about becoming dependent on meds and the health care system." Part of me understands deeply, the part of me who thinks I should be able to pull up stakes and go anywhere in the world I desire, instead of being tethered to some healthcare apparatus through residency, employment, government rules, spouse's insurance, finances, etc. Yes, it's a pain in the butt. I took HIV meds for 5 years. They worked well. I went off them over 6 years ago. I was not "dependent" on my (old) meds; I am dependent on my own immune system. The ARVs aren't narcotics, no matter how unpleasant initial reactions may be.

If we are ill, we need medical partners in diagnosis, treatment, and prevention. What's so bad about having a little blood drawn and seeing a specialist roughly 3 times yearly to "monitor" you, with or without meds? An assertive and positive patient is the most successful. We are all interdependent to some degree, and this goes beyond the inefficiencies, inequalities, burden of cost, and poor practices, endemic in the US "system" of healthcare. If you are able to modify your view of personal independence to incorporate healthcare (medical and dental) and even mental healthcare as a personal need, you will be off to a good start. If you feel aggressive/sceptical, why not channel that into treatment research (you're doing that), advocacy (ACTG, single-payer advocacy, mentoring, etc), and battling insurers or others if/when the need arises.

The truth is I need reliable quality healthcare coverage (notice I didn't necessarily say "insurance") for any number of possible medical causes; HIV is just one of many factors influencing my health. Years of capitalist training has taught me to come up with questions like "I wonder if I could have spent less last year on medical care/dental care had I not been insured". Then I wake up and think "YIKES!" Security is worth something. Maybe I don't want to put a $ amount or do a cost/benefit analysis. We are all worth more than that. Perhaps my thoughts apply to you as well.

  -megasept

[Susan]

Some doctors such as Jon Kaiser believe it is useful to start treatment right away before the virus has a major hold in your body. Here is a reply posting to a fellow in a similar position to you, from his website www.jonkaiser.com:

Author: Dr. Jon Kaiser
Date: 10/5/2007 5:35 pm EDT
Hi Drew:

Dr. Kaiser still believes that if you catch an HIV infection early (within the first few months of exposure) antiviral treatment for at least one year will help blunt the infection's extension into the immune system and give you the best possible chance of a "mild" chronic infection down the road.

I've done this with quite a few of my patients and I have been pleased with the results. Most of them were able to get off the meds for several years of stable CD4 counts and no symptoms.

You heard it from the source! Thanks for your posting.

Jon Kaiser, MD


I think both approaches are valid. Whichever you choose, I am a strong supporter of getting your health in good order with diet, supplements, exercise, and parasite testing and treatment if indicated. Good Luck. It has worked for me and I have been poz 23 years with a CD4 count of 1,500.

[next2u]

wow, susan's and florida's stories are quite compelling. hmm, i'm not on meds yet because my last lab had mixed results and i'm not scheduled to go back until jan. knowing we will be living a long life makes the nip it in the bud theory quite attractive. i'd definitely go on meds now to avoid major chronic illness down the road. preventing extensive damage to one's immune system does sound like a good start at living better and longer life. i will bring this up with my id doc at my next visit. does anyone know of a comprehensive resource for information on early treatment vs delayed treatment?

hey pat, thanks for posting these questions, you are helping us all a ton. thank you too, everyone who is responding with great advice. you are enabling us to make informed decisions with our doctors and allowing us to live healthier & happier lives.

[x0l21]

hey guys i found out 6 months ago and was given atripa ans it almost kill me

now i wa given combivir and kaletra an it making me feel nasusea plese help it about 1 week how lond does it take to go a way

[RapidRod]

I couldn't take Kaletra. I would be on the floor in severe cramps if I take it.

[DCGUY2007]

I would wait Shellshock. Sent you a private message about this too.

[esquimau]

I'd be inclined to say wait too.   The US Treatment guidelines have gone through enough revisions in the last 10 years that I think individual physicians sometimes get lost in the mix.  I see it all the time when I go to do trainings, where docs don't necessarily keep up with latest theories on prevention (ie oral sex transmission or whether reinfection really happens in the real world) as well as not keeping up with the change of technology (not realizing that HIV ELISA screens are much more sensitive now that they were in the past and that talking about a 6 month or even 3 month window period is broader than it needs to be).

With treatment, the Hit it Fast, Hit it Hard mentality was in place for so long and some docs got attached to it.  That early treatment could set a lower viral set point (balance point where the body keeps things at equilibrium for a while).  But I think when they went back and did the retrospective look at the people treated in the past they saw it wasn't as necessary and even allowed some who were treated early unnecessarily to go off the meds at that point.

The current guidelines make sense to me.  In theory they have been developed with all our experience thus far in care and treatment.  Go med sparing for as long as you can to minimize the possibility of bad adherance, long term side effects, developed resistance (and the subsequent loosing of classes of drugs).  Yet at the same time start treatment before one reaches the point of being vulnerable to the nasty OI's at 200 count.   350 leaves enough a margin there that you can figure out what regimine works best.

But as others said, listen to the docs about what they recommend for a first line, and then do the research yourself.  see how the dosing, times, side effect would work in your current lifestyle.  The best treatment in the world won't help you if it doesn't work for how you live and you can't maintain it.

[BreakerOneNine]

I was infected in 95 and just started meds 2 days ago.......my doc had me wait til my cd4 was below 250....and the last results were 230....took me a long time to get there....started Atripla 2 nights ago.