Probably not a biggie... (WHEN TO START TREATMENT 2008)
Oct 16, 2008
Hey Dr Bob it's Alabama gal! Funny, I read so many people's concerns here about being 'sure they must have HIV because they had risky exposure and now have 'all the symptoms-sore throat, swollen glands etc' Since I had not one clue that a women of my age with a man of the same age 'could be carrying such a devastating disease as to pass it to me'...I HAD no symptoms! lol
Ok fast forward (that was just an observation from the worry warts of this board...)
My labs in May were fairly 'bad'. I am not on HAART yet but when I went back for my results the PA said she could put me on HAART if I wanted to start. I asked the pertinent questions...'if I delay will it cause me more harm?' She said it was up to me but that she felt I could delay for awhile if I wanted to. Going to Calif for a reunion etc I didn't want to be suffering any side effects while there trying to have a good time for my parents anniversary. In Aug I had labs again and at the 3 weeks results appt my CD4 had risen a little so again I was told it was my choice to start HAART. I delined...for now. New labs on Oct 6th and will return for results on Nov 5th or something.
BUT......I have been sick on and off, mostly sick for the past 3-4 months. I mean really sick.flu going into broncitis. Two weeks ago I just had to go to a dr I was so sick for over two weeks prior. DX was Broncitis, Broncial Spasms, Asthma and Carotidenia. I just seem to be sick all the time. At my next lab result visit should I bite the bullet and go on HAART? I just hate that 'they' have left it up to me to make the decision.
My CD4 is 251...my VL is really good at 15,000...they say.
I am not looking forward to starting a life long regiment of drugs but......I don't want to be sick all the time either.
Any suggestions/help would be appreciated!
Take care-you're hero of mine!
Response from Dr. Frascino
Your testimonial of not having any symptoms, yet being HIV positive, is a very important one for the readers of this forum. I constantly stress that the reason to worry about or test for HIV is related to risk exposure, not whether symptoms are present.
As for your specific question, I would strongly recommend you begin HAART. The current treatment guidelines recommend beginning treatment when the CD4 count falls to 350. You have been closer to 250 for the past six months. As you approach 200, your risk for opportunistic infections, such as PCP (pneumocystis carinii pneumonia), increases dramatically. I'll reprint some information below about when to start treatment.
cd4 counts (WHEN TO START TREATMENT) Oct 2, 2008
Doctor, i've notice over the years (in fact over the course of a few short months), you've recommended med treatment at higher and higher cd4 counts. First, it was 200, then 250,... now, all of a sudden you're telling people that medical consensus says a whopping 350! What gives you the right to simply just keep rounding up and up and up, when you are advising people.
Other doctors here assure the reader that even if the person starts meds late, they can eventually get a good response.
If you're gonna say 350, cite your source,... and i hope its more than just a lone wacko doc you heard at a symposium in Mexico.
oh, and i'd love to see a control study of mortality comparison between someone on meds at whatever cd4 count verses people who never go on the meds.
Response from Dr. Frascino
WHOA! Calm down there hothead! First thing I want you to do is take three big cleansing yoga breaths. Go ahead. We'll wait. There, now don't you feel better and, hopefully, a bit less confrontational?
"What give you the right to simply just keep rounding up and up and up, when you are advising people?" Hmm . . . well, for starters, I'm the HIV physician specialist whose role is to advise (usually polite) questioners about HIV-related medical scientific facts and evolving medical treatment guidelines, based on a thorough review of peer-reviewed clinical trials and over a quarter of a century of personal experience treating thousands of patients with HIV/AIDS.
"Other doctors here assure the reader that even if the person starts meds late, they can eventually get a good response." In general I do not disagree with this statement and I have given similar advice many times. However, depending on when someone starts and many other variables (concurrent infections, host immune integrity, viral strain, adherence, tolerance, drug resistance, etc.), the more accurate statement would be ". . . they MAY eventually get a good response." There are no guarantees. And certainly there is absolutely no evidence suggesting that starting later (lower CD4 count) is better than starting earlier (higher CD4 count). In fact, there is growing scientific data suggesting just the opposite!
"If you're gonna say 350, cite your source . . . and I hope it's more than just a lone wacko doc you heard at a symposium in Mexico." I'll be more than happy to cite references (see below). As for "a lone wacko at a symposium in Mexico," I assume you are referring to the International AIDS Conference held in August in Mexico City and attended by nearly 30,000 scientists from around the globe. It was a bit larger in scope than a "symposium" of lone wackos.
Regarding your desire to see a "control study of mortality comparison between someone on meds at whatever CD4 count versus people who never go on meds," that clinical trial will never be done going forward, as to do so would be highly unethical based on what we know about antiretroviral therapy. Besides, the information you desire can be collected historically by looking at the morbidity and mortality data collected prior to the development of effective antiretroviral therapy (mid-1996). What you would clearly see, if you took a look, is that there has been what can only be considered an astounding and miraculous decrease in both morbidity and mortality since mid-1996 when HAART (highly active antiretroviral therapy) became widely available following the International AIDS Conference in Vancouver (another "symposium"?). For historical perspective, Netflix the PBS documentary "Age of AIDS." It chronicles the first 25 years of the pandemic. You could also try reading Randy Shilts's book "And the Band Played On."
As for why HIV treatment guidelines keep changing, please note this is an evolving epidemic. We continue to learn more and more about HIV pathogenesis and the natural history of the disease. In addition, as noted above, there have been (and continues to be) remarkable progress in developing new and novel approaches to treating HIV disease. In 1998, the U.S. Department of Health and Human Services created a panel of physicians, researchers and consumers to develop treatment guidelines. They constantly review AIDS research results. The treatment guidelines are updated almost annually based on the ever-evolving scientific and epidemiological data. The panel released the latest guidelines update in January, 2008. These are guidelines, not rules! All patients need individualized care from competent and compassionate HIV physician specialists. When it comes to HIV treatment, my motto is "One Size Fits One!"
To review the most recent and well referenced! guidelines from the U.S. Department of Health and Human Services (128 pages!!!), you can download a full copy at http://img.thebody.com/hivatis/pdfs/adult_guide.pdf. Check it out Mr. Hothead.
As for citing my references, please review the "SMART" study results. The Strategies for Management of Antiretroviral Therapy (SMART) Study Group was conducted in 318 international sites in 33 countries. A subset analysis of this study showed starting antiretroviral therapy at a CD4 count above 350 the current threshold for starting therapy based on the guidelines reduced risk of serious illness and death compared to beginning treatment later. (The full report is in the April 15th edition of the "Journal of Infectious Diseases.")
Current treatment guidelines in Europe and the U.S. recommend deferring antiretroviral therapy (ART) in asymptomatic adults until the CD4 count falls to 350 cells/mm3 or, in resource-poor countries, 200 cells/mm3. These recommendations were based on the results of nonrandomized studies and expert opinions.
The guidelines were formulated based on earlier concerns about the risk/benefit ratio of starting ART earlier and the fact that AIDS-defining clinical events (opportunistic infections, malignancies, etc.) were rare at higher CD4 counts. There were concerns that any benefits of early ART might be outweighed by toxicities, long- and short-term side effects, cost-effectiveness, quality of life issues, adherence and the development of drug resistance.
There is now an impressive and growing body of evidence to suggest that these guidelines should be revisited. First, data from clinical trials indicate that the risk of AIDS persists at CD4 counts greater than 500 cells/mm3. Second, even in patients with high CD4 counts, the risk of AIDS or death decreases with the initiation of ART when compared with that of those who are not on ART. Finally, the risk of serious non-AIDS-related diseases and cancers is lower at higher CD4 counts!
I could continue on and on about epidemiological reports from resource-poor countries where large numbers of HIV-infected individuals do not have access to ART. Tragically their morbidity and mortality figures are identical to what we witnessed here in the U.S. prior to the development and availability of potent effective antiretroviral therapy.
So, please continue to believe whatever you wish, but if you plan to ever return here with a question or problem, I strongly suggest you begin with an apology and ask your question in a more polite (or at least amusing) fashion.
A Difficult Question ? (WHEN TO START TREATMENT 2008) Jul 27, 2008
Dear Doctor Bob,
here I have an interesting question for the category "when to start HAART".
My absolute CD4 count has been stable between 500 and 550 for one year. My CD4 % has been stable around 25-26% for a year.
My plan was to start meds at 350 or even 400. BUT I'm told that a CD4 percentage such has mine is the equivalent of a absolut CD4 count of 350...
What to do!?!
Response from Dr. Frascino
Yes, I agree, knowing exactly the best time to begin HAART is indeed a challenging question. Balancing the potential benefits (improved immune function, decreased viral load) with potential side effects (both short- and long-term) and toxicities can be a complex equation, especially because we need to factor in convenience of dosing regimen, number of pills, adherence, cost, etc. As an immunologist, I favor starting HAART earlier rather than later to preserve immune integrity, improve immune function and decrease immune activation. In your case, with your CD4% at 25%-26%, I would say that if after discussing the various pros and cons of beginning HAART with your HIV specialist, you are ready to start, then you should indeed begin! I'll reprint some information from the archives that addresses the "when to start" question.
should l start meds yet ??? (WHEN TO START TREATMENT 2008) Jul 7, 2008
you are the man, every night when l get home l read every post of yours on the forum, l recenty got hiv infected in jan in thailand, l had the flu and fever in feb, my positive result come back in may, since my 1st labs read cd4 435 and %21 and second lab read cd4 376 and viral load 13,000 and %25 and my last lab read cd461 and viral load 20,000 and %21... my doctor has left it up to me as when to get on meds... what do you think ??? l am going for a test in 6 weeks... l hear all types of stuff with side effects on meds, but if l start with a higher cd4 count will this help with less side effects ??? also every few weeks l binge drink 15 drinks at least with the boys... is this doing any damage ??? my liver is good no hep... but my doc said binge drinking weakens the imune system... anyway doc its a crazy world out there for me, but l am doing my best...
thank you for your time and good luck in vegas, will you be gone off the forum long ??? l hope not to long
Response from Dr. Frascino
The question of "when should I start treatment" comes up frequently. Unfortunately, there is no simple answer. Published guidelines concerning the recommended time to consider starting HIV treatment have been revised multiple times over the course of the epidemic. These revisions reflect not only our changing (and ever improving) knowledge about the natural history of HIV infection and pathogenesis of the virus, but also the fact that many new anti-HIV drugs have been discovered, developed and FDA approved for use in recent years. The new knowledge regarding HIV pathogenesis would argue for earlier treatment intervention rather than waiting. The newer HIV drugs are more convenient to take and much better tolerated than the drugs available 5 to 10 yeas ago. As an immunologist, I hold a personal bias to begin treatment as early as possible to protect immune integrity and decrease immune activation. The pendulum is definitely swinging towards earlier intervention and I'm definitely one pushing the pendulum to go farther and faster in that direction.
I'll reprint some information below from the archives on "when to start."
As for binge drinking, I agree this is not healthy for a variety of reasons. Even though it may not "weaken the immune system," it certainly can have many other significant negative effects on health. As the old saying goes, too much of a good thing is not a good thing. I would strongly recommend moderation rather than binging on anything. You may just find that it's not only healthier, but that it actually can be more fun.
As for Vegas, it's just a quick trip. You'll probably not even know I've gone. I work mostly from my laptop, which travels with me far and wide. Although it's not allowed around the craps or blackjack tables.
How long should i wait (WHEN TO START TREATMENT) Jun 4, 2007
I have a CD4 count of 485 and a VL of 45 000. How long will it be before i should consider meds? I live a fairly active lifestyle including regular workouts and i have recently given up alcohol and smoking.
Response from Dr. Frascino
This topic comes up very frequently. (See below.)
Morons! May 22, 2007
I'm just furious about those morons who are proven HIV negative with a proper test and are still worried and sending questions to take up more of your time!! they just sound so provocative to me! PEOPLE I HAVE HIV..FOR REAL! however, I feel sorry for you and not for myself! can you believe that?!
Anyway Dr. BobZ, I'm not here just to scream, I have a question actually..
My last counts are as follow Cd4 349 VL 17000+ Cd4 502 VL 28000+ then Cd4 334 VL 48000+ then finally Cd4 300 VL 75000
I can't really take the tough decision and start treatment without your advise! Do you think it is time ? I'm very healthy! just had a few mouth ulcers lately! thats all! Is it better to start now with all these data suggesting early treatment pays off later?
Oh and by the way, AM I At risk of HIV? Do you think the 11th test is warranted? I just did Cunnilingus on George Bush!
Response from Dr. Frascino
There are a variety of factors that need to be taken into consideration in determining the best time to begin HAART. Certainly these would include CD4 counts and plasma viral loads, but also other factors need to be put into the equation. For instance, are you ready to start and be committed to adhering to your meds? Do you understand the options, risks, potential side effects, dosages of the various regimens, etc.? Are there other conditions that need to be treated first, such as active TB or certain psychiatric conditions?
As for your current lab tests, assuming your tests were taken several months apart, it appears your CD4 count is now in the 300 range and your plasma viral load is rising. Assuming there are no concurrent conditions, such as another type of infection, that is driving your CD4 count down and HIV viral load up and that you are psychologically ready and committed to beginning HAART, most guidelines would suggest this is the time you should strongly consider beginning treatment. I agree. I would recommend you get a resistance test (genotype) and discuss treatment options with your HIV specialist. You may well be a candidate for a simple one-pill, once-per-day regimen (Atripla). Should you decide to wait, I would strongly encourage you not to let your CD4 count fall into the 200 range, as this would place you at significant increased risk for opportunistic infections.
As for oral sex with George Bush, I'd strongly recommend against it. Aside from the "ick" factor, it's common knowledge now that Dubya does not know when to pull out!
Good luck. I'll reprint some information about starting meds below.
Preparing to Start Treatment
Once your doctor recommends that you begin treatment, it's important to consider how treatment will change your life. Are you ready in every way -- mentally as well as physically? Remember: Most doctors say that you have to take your medications at least 95 percent of the time to keep HIV under control. This means you have to be certain that taking your medications will become a central part of your daily life.
No doubt this commitment will be challenging. However, you have a good chance of keeping HIV under control with the first combination of medications that works for you. If this combination successfully suppresses the virus, and if you take each and every pill prescribed, you may not have to change medications for a long time.
What if you aren't always able to take all your medications on time?
This may cause your first combination of medications to fail. If this happens, it can get harder and harder to keep HIV under control with each successive drug combination. So it's crucial to identify a combination you can stick to, before you start treatment.
Here are some things to consider:
Your medication schedule shouldn't be too complex. One thing is certain: Taking medications daily will change your life. Suddenly, you'll have new responsibilities. You'll always have to be aware of the time, your schedule and changes in your routine. In some cases you may have to schedule taking your HIV medicine around meals or take it with or without certain foods. You'll have to remember to take your pills with you if you are going out at night or away for the weekend. Even if you are depressed or busy, you will still have to take your medications exactly as prescribed every single day. So, before you start, you must ask yourself: "Am I really ready?"
Plan how you will deal with side effects if they occur. All medications can have side effects -- even aspirin. Not everyone experiences side effects from HIV medications, which can range from mild to severe. Because you really want to give this first combination your best shot, talk to your doctor and read about the possible side effects of the medications you are thinking of taking. This can help you not only plan how to manage side effects if they arise, but to choose medications whose possible side effects you think you can manage.
Your surroundings and your mental health are important. If you are feeling depressed, using recreational drugs or living on a friend's couch, it may be unrealistic to assume you'll be able to take all your medications all the time. So make sure you have organized your life before you begin treatment. This way it will be easier for you to follow a strict treatment plan. It's also a good idea to get some support. It helps immensely to have friends, family or a therapist you can rely on while you are on a treatment regimen -- especially at the beginning when you are still adjusting. Check out the largest AIDS organization in your area for support groups. Need to find an AIDS organization near you? Want to learn more about your treatment options?
Details, Details: More Things to Keep in Mind When Choosing Treatment
Number of pills and how often each day. This can vary from 11 pills twice a day to one pill once a day.
Anything that could interfere with taking all your pills on time. Travel? The timing of meals?
Your support system. Can you count on your friends? Family? Therapist? Support group?
Sequencing of HIV medications. Ask your doctor what options you'll still have if your first combination stops working.
Strength of HIV medications. Which medications are right for you given your T-cell count and viral load?
How long the drug has been around. What is known about short- and long-term side effects?
Side effects. Are some side effects more tolerable to you than others? How will you manage them if they arise?
When to Start Treatment?
Doctors still disagree about when is the best time to begin HIV treatment, also called antiretroviral therapy. You and your doctor will need to determine this together, but there are some respected guidelines. Be aware that these guidelines are regularly updated and are not hard-and-fast rules. They are just suggestions based on the most recent research.
For example, the U.S. government's Department of Health and Human Services HIV Treatment Guidelines (view PDF of guidelines) recommends that you begin HIV treatment if you have any serious symptoms, or before your T-cell count falls below 200. Some doctors prefer starting treatment if your T-cell count is above 200 but below 350, in hopes that starting treatment a little earlier will help your immune system stay healthier.
Once you start taking HIV medications, you'll probably have to take them for a very long time, so you and your doctor will want to make sure you are absolutely ready before you begin treatment. This way you can postpone possible medication side effects (which we talk about later in this booklet) and make the most of the powerful initial effect medications can have on the HIV in your body.
Current Guidelines Recommend
If your T-cell count is 350 or above, treatment is not recommended unless your viral load is 100,000 or higher, or you have serious symptoms.
If your T-cell count is between 200-349, treatment should be seriously considered.
If your T-cell count is below 200, to avoid dangerous illnesses, start treatment.
All studies indicate that it is best to start HIV medications before your T-cell count drops below 200 in order to avoid dangerous HIV-related infections and illnesses. Your T-cell count, however, will vary from test to test. Often, your doctor will wait for you to have two consecutive T-cell tests that are low before recommending that you start HIV treatment.
What Is a T-Cell or CD4 Count?
Your T-cell count, also known as a CD4 count, reveals the number of T cells in your body. A T cell is a special kind of white blood cell, and the more you have, the stronger your immune system is. When you were infected with HIV, the virus entered into some of your T cells. When these HIV-infected T cells make more copies of themselves, they end up making more copies of HIV as well. HIV can also destroy T cells, as well as other surrounding cells. After living with HIV for a while (if you don't take medications) the number of T cells you have will usually go down. This is a sign that your immune system is being weakened. The lower your T-cell count, the more you risk getting sick. A normal T-cell count for someone without HIV is usually between 500 and 1,600.
What Is Viral Load?
Viral load levels tell you and your doctor how much HIV is circulating in your blood. The more HIV in your system, the quicker your T-cell count tends to drop. This makes viral load a helpful predictor of the health problems you may develop if you do not take medication. It is also a good measure of how well HIV medications are working once you begin treatment.
Your viral load count measures the amount of HIV per milliliter (mL) of your blood. Current viral load tests can detect as few as 50 copies of HIV per milliliter of blood. When you have fewer than 50 copies/mL of HIV, your doctor will tell you that your viral load is "below the limit of detection," or "undetectable." This does not mean that there is no more HIV in your body. So even if you are "undetectable," you can still transmit HIV to someone.
Getting Into Good Habits Before You Start Treatment
Even before you begin treatment, you may want to change your life. Now is the time to eat well, exercise, and if you smoke, drink or use recreational drugs, stop these unhealthy habits. Recent studies have shown that smoking may be particularly risky for people with HIV. Before you put anything into your body, consider if it is good or bad in your fight against HIV. If it doesn't pass the test, avoid it. You need to maintain and strengthen your immune system. If you are taking any drugs, vitamins or supplements at all -- prescription, over-the-counter or recreational -- make sure you tell your doctor so that you can avoid dangerous interactions with HIV medications. For example, antihistamines, birth-control pills and recreational drugs all have been shown to have serious interactions with HIV medications. Even the herb St. John's wort can reduce the strength of some HIV meds by half.
Can You Really Talk to Your Doctor?
Does he or she listen to you? Choosing a doctor you can talk to is crucial. You'll probably have many questions; make sure your doctor is available and able to answer them before you make any decision about starting HIV treatment.
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