Author Topic: Start Early or Wait? (Read 12603 times)

jcelvis · « **on:** May 30, 2009, 01:55:03 pm »

I have been reading all the new studies that suggest starting treatment at CD4 counts at 500 or below. I have already had the discussion about medication and will use Atripla when I start medication. My doctor is more conservative when it come to new recommendations and results on studies. My labs are decent, and I'm in good health so he doesn't suggest we start right now. My counts are as follows:

Diagnosed May 08
May 08 - CD4 580 (31%) VL 11K
July 08 - CD4 483 (29%) VL 13K
Nov 08 - CD4 431 (25%) VL 22K
Feb 09 - CD4 405 (22%) VL 12K
May 09 - CD4 408 (26%) VL 10K

My doctor has said that if i start early more than likely my Viral Load will be undetectable in a matter of months and my CD4 count will rise as well. My next appointment is in August and wanted to get some opinion on starting immediately or waiting until my CD4 drops to 350.

positivmat · « **Reply #1 on:** May 30, 2009, 02:17:10 pm »

Here was the basis for my decision. I am in a relationship and wanted to get to undetectable to protect my partner as much as possible. I also thought it would be good to limit my infection. If I was single or not going to be sexually active, I might have waited. That is my two cents. I hope gene therapy a non-issue.
Matt

jcelvis · « **Reply #2 on:** May 30, 2009, 02:27:55 pm »

I have been reading all the new studies that suggest starting treatment at CD4 counts at 500 or below. I have already had the discussion about medication and will use Atripla when I start medication. My doctor is more conservative when it come to new recommendations and results on studies. My labs are decent, and I'm in good health so he doesn't suggest we start right now. My counts are as follows:

Diagnosed May 08
May 08 - CD4 580 (31%) VL 11K
July 08 - CD4 483 (29%) VL 13K
Nov 08 - CD4 431 (25%) VL 22K
Feb 09 - CD4 405 (22%) VL 12K
May 09 - CD4 408 (26%) VL 10K

My doctor has said that if i start early more than likely my Viral Load will be undetectable in a matter of months and my CD4 count will rise as well. My next appointment is in August and wanted to get some opinion on starting immediately or waiting until my CD4 drops to 350.

Inchlingblue · « **Reply #3 on:** May 30, 2009, 02:47:33 pm »

I have similar numbers to yours (me: VL: 9k CD4: 412 CD4%: 22). I've pretty much decided to start with Isentress/Truvada. I have not actually filled out the Rx, which I got last Wednesday but I'll do so probably this coming Monday or Tuesday.

My biggest concern is: I now have access to meds through private health insurance but I fear losing it and having to jump through hoops to get coverage in order not to have any lapses in taking meds, I intend to be fully 100% adherent as long as I can get the medications.

My main reason for finally starting is that lately I've been feeling like I'm in some sort of "Limbo" and i want to get on with my life. I've also read some recent posts on here of guys who got KS even with very good numbers, as good as or even better than mine. I know that KS is not what it used to be and usually clears up with HAART but still, if I can avoid it, why not? So far, I have not gotten sick at all and feel perfectly healthy and fine, no fatigue etc. I figure it's probably better to start while still feeling fine than to get sick and then start.

Bottom line: with your numbers you could probably go longer without starting and be fine but if you have access to the meds and can be adherent, the meds now are so much better than they used to be as far as potency and tolerability it doesn't make as much sense as it used to to wait.

I also think that future treatments to maybe achieve a "functional cure" might rely on having a pretty decent immune system so it's probably best to not overwhelm it for too long without meds.

newt · « **Reply #4 on:** May 30, 2009, 06:33:21 pm »

What mr inch/blue and pos/mat said

- matt

antibody · « **Reply #5 on:** May 30, 2009, 06:36:09 pm »

here, here go for the treatment early. it will protect you from any damage from the HIV. I wish I would have started earlier. I think I might not have all the physical ailments I do now. Yes I worry about long term side effects of the meds but the effects of the HIV are much worse.

bmancanfly · « **Reply #6 on:** May 30, 2009, 07:47:24 pm »

Good advise so far.

I wish I had started sooner. I once had numbers like yours for many years. So I thought I could wait a long time.

When I finally got off the fence and started meds I achieved undetectable VL very quickly. However, my CD4 has been slow to recover. I think I waited far to long to start meds.

I have zero side effects. So all my worries about starting were unfounded. And I think I allowed my immune system to be uneccessarily damaged by waiting.

You need to decide whats best for you though.

bufguy · « **Reply #7 on:** May 30, 2009, 09:44:52 pm »

I started Atripla almost 1 year ago with a CD4 of 511, CD4% 29, vl 47,500. My doc strongly encouraged me because he knew I was motivated and would be adherent.
I have absolutely no regrets. No side effects, 100% adherent.

Go for it!

antibody · « **Reply #8 on:** May 30, 2009, 11:42:43 pm »

i started about the same cd4 count. I think i was about 480. I was real scared. i didnt know what to expect. i started with sustiva which was not a good choice. but after the switch to boosted reyataz. I've had no problems. I do feel a difference in kidney function for sure. I pee a lot more and more often and it can take a minute to get the flow going. I am glad I didn't wait any longer to start and wish I started earlier.

megasept · « **Reply #9 on:** May 31, 2009, 02:11:34 am »

Quote from: jcelvis on May 30, 2009, 02:27:55 pm

I have been reading all the new studies that suggest starting treatment at CD4 counts at 500 or below...and I'm in good health so he doesn't suggest we start right now. My counts are as follows:

Diagnosed May 08
May 08 - CD4 580 (31%) VL 11K
July 08 - CD4 483 (29%) VL 13K
Nov 08 - CD4 431 (25%) VL 22K
Feb 09 - CD4 405 (22%) VL 12K
May 09 - CD4 408 (26%) VL 10K

...wanted to get some opinion on starting immediately or waiting until my CD4 drops to 350.

hi. i just wanted you to realize the time between having CD4 drop from 400 to 350 and especially down to 300 could be years and not months away. but i don't have a crystal ball.

i'd stick by the old "conservative" ? "start ARV if VL > 100k and/or CD4 < 300".

i think this is a medical question, even though "kill the bastards NOW" is more appealing than let them do their dirty work now, and send in the troops a few years down the line.

i have been treated just 6.5 total years of 18.5 years poz, in accordance with the above parameters (coincidentally the first years, and later by design). My own experience supports your MD's "conservative" approach. i am pleased with my present therapy; 1.5 years on Insentress + Truvada, following a 7 year STI.

-megasept

edfu · « **Reply #10 on:** May 31, 2009, 05:29:14 am »

Quote from: Inchlingblue on May 30, 2009, 02:47:33 pm

I've also read some recent posts on here of guys who got KS even with very good numbers, as good as or even better than mine. I know that KS is not what it used to be and usually clears up with HAART but still, if I can avoid it, why not?

Unlike most opportunistic infections, KS can occur at any level of CD4, both below normal and normal. If you are infected with Human Herpes Virus Type-8 (HHV-8), there is at the present time nothing known that can prevent its occurrence. Why it occurs with some who are infected with HHV-8 and HIV and not with others who are also infected with both viruses remains a mystery. (There is also anecdotal evidence that KS is occurring more frequently in HIV-negative gay men.) Unfortunately, it is also not possible to be tested for HHV-8 outside of a specialized laboratory setting. Research studies have been done that indicate that up to 40% of HIV-positive gay men are infected with HHV-8.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/12/MNEESOFRG.DTL&tsp=1

mecch · « **Reply #11 on:** May 31, 2009, 05:30:32 am »

Well you look like a bright guy, what does your intellect and instinct say is correct for you? now, or later? If they both have their advantages and disadvantages, you are gonna make a decision anyway.

WillyWump · « **Reply #12 on:** May 31, 2009, 11:06:57 am »

I would wait.

Your VL is not that high and really has never been. Your percentage is pretty darn good. Yes, your CD4 is close to 350 but it looks like your holding your own and its very possible you could have significant jump in CD4 at any time. I dont know, just my opinion, but it looks like your immune sys is controlling this thing pretty good for now.

I guess some questions you need to consider are:
-Do you have your ducks in a row as far as getting the meds paid for? So you dont have to stress for a few weeks if your cd4 takes a plunge as your trying to apply for ADAP, etc...

-How are you feeling physiically? if your feeling bad overall maybe you need to go ahead and begin, if your feeling neutral compared to how you felt pre- HIV then I would ride it out for a while longer provided your CD4's dont plunge.

Again, this is just my opinion and I am not a doctor, and I know everyone is different, but iI would wait for the CD4 jump that I believe will happen in your case....if I compare my numbers to yours its possbile you could ride this out for another year before you have to start meds. ALot can happen in a year as far as HIV Meds research

-Will

risred1 · « **Reply #13 on:** June 03, 2009, 12:57:03 am »

There is some thought that the key is CD4 count and the recommendation line is 350.

I dropped to 365 in Feb, and my doc was we better get going. but I though I might give the old college try on the exercise, nutrition and supplement front. Well, unfortunately, over the winter and through the Spring I've been feeling progressively worse and my fatigue was increasing, which means exercise became a real challenge, and diet went nowhere. And while I feel I got alot of benefit from supplements over the years, basically, nothing would reverse the decline and I dropped to 290 in may.

I really should have started in Feb. at 365.... at low 400's, your really not that far off, and preparing yourself maybe the best thing you can do over the next few months. Learn about the possible side effects of the meds your going to take and have a plan for dealing with them, to ease the transition period.

i can see a steady decline from test to test, so even though your VL isn't over the 100k other thesehold, its not as important as to the fact that whatever level of VL you have, your CD4 count is slowly, but steadily dropping. If you have fluctuation, you can work out an average level, but if you trend your count, I think you can percieve approximately when 350 will arrive. Not that its perfect science, But it looks like your numbers are on a trend.

Listen to your doctor.... Understand the guidelines.... Choose your meds based upon your needs and lifestyle.... Oh and I hope you have done a resistance test.

Lastly, there are a long list of side effects that they are going to tell you about. I know if you read this board, the impression you might be getting is that there are lots of problems out there. Well, there are lots of problems, but my doctor flat out told me that only 2% of folks find the sides on Atripla unbearable. So a 98% bearable rate is in play. I personally think that number is probably correct, but I'm sure that some folks are just sticking with it, even though they are experiencing some side effect.

But still, I personally know people who don't have a single complaint or issue with Atripla.

Hey, I'd wish you luck, but that sound like one needs it. If this combo doesn't work for you, there hopefully is one that will. I'm on a PI based combo, and after 12 doses, I barely notice it.

risred1 · « **Reply #14 on:** June 03, 2009, 01:07:01 am »

I did notice that your numbers dropped fairly steadily over a year, but your last two are flat. Its quite possible your over the initial year of infection and that you can achieve a kind of stability and even a rebound.

This is that strange period in HIV infection where it isn't fully understood why we reach a kind of equilibrium, where we seem to be able to stave off further decline for a period.

How long is that period? Well mine was 4 years. Which surprised my doc...

My doc's philosophy is the longer you wait in a safe zone, the more options you have down the road.

But remember that these thoughts my doc has is based upon perceptions that may be more backward looking than forward looking.

This means, that the newer studies that show better results going sooner than later may carry some credence.

I've basically gone through this equilibrium stage and My CD4 was crashing. What does that mean for me and treatment. If i sought treatment sooner, would I have equilibrium available to me if I were ever to take a break?

Right now, my opinion is, I'm on meds forever. if I ever do break, my CD4 would probably rapidly decline. but one never knows. If my immune system can rebuild over the time I suppress the virus. i might buy some additional break time if I need to take one.

The problem is, most of this is intuition. I think I should have started sooner. I bet if you polled, you might get some interesting answers about if an earlier start would be preferable to the actual start date a person ended up with.

planonstaying · « **Reply #15 on:** June 03, 2009, 04:00:31 pm »

I am at 700 cd4 and starting. I read a few studies like this. Just the inflammation from HIV infection that is untreated has real bad effects including cognitive. I read somewhere they believe part of the reason for our increased incidence of cognitive disorders is brain inflammation. Even people who were elite suppressors are showing high levels of inflammation markers. I believe the virus is more harmful than the treatment
http://infectious-diseases.jwatch.org/cgi/content/citation/2009/513/2
http://www.aidsmeds.com/articles/hiv_heart_disease_1667_16502.shtml
http://www.aidsmeds.com/articles/hiv_early_treatment_1667_16077.shtml

elf · « **Reply #16 on:** June 03, 2009, 07:03:00 pm »

I decided to start early. Most side effects can be dealt with, by changing your diet or habits (more jogging less sitting

)...I adhere to Mediterranean diet, and I go jogging everyday, for 90 minutes...I will start going to a gym as soon as I find time.

sharkdiver · « **Reply #17 on:** June 04, 2009, 01:42:37 am »

Quote from: elf on June 03, 2009, 07:03:00 pm

I decided to start early. Most side effects can be dealt with, by changing your diet or habits (more jogging less sitting )...I adhere to Mediterranean diet, and I go jogging everyday, for 90 minutes...I will start going to a gym as soon as I find time.

What side effects are you talking about?

mecch · « **Reply #18 on:** June 04, 2009, 06:21:23 pm »

90 minutes of jogging a day? How old are you, elf? And then the gym? Sounds like a recipe for exhaustion, but if it works for you!

jcelvis · « **Reply #19 on:** June 06, 2009, 11:25:17 am »

Thanks for all the responses. And just a little more comment to RISED, this year I ended up getting the flu and a really bad sinus infection, which helped contribute to the lower numbers.

Generally I dread winter months, and personally would want to start meds sometime between April and August before the cold weather starts. Generally I'm happier, more motivated, and in a better mental state. That's just a personal preference. So I think to myself, can I will my body to make it through the winter.

clsoca · « **Reply #20 on:** June 06, 2009, 03:05:05 pm »

I read in the LA times a few weeks ago recommending individuals in high risk groups who are negative may want to be on meds to prevent the virus from multiplying.

Wow...now this is starting meds early

Pozibilities · « **Reply #21 on:** June 07, 2009, 02:18:32 pm »

My vote is to hold off putting drugs into your body as long as you can.

Inchlingblue · « **Reply #22 on:** June 07, 2009, 02:25:09 pm »

Quote from: Pozibilities on June 07, 2009, 02:18:32 pm

My vote is to hold off putting drugs into your body as long as you can.

The problem is how does one define "as long as you can"?

For one person "as long as you can" can mean hitting 500 tcells, for another it can mean having 50 tcells with PCP and thrush.

Pozibilities · « **Reply #23 on:** June 07, 2009, 02:29:26 pm »

That is up to each person to decide

shypoz · « **Reply #24 on:** June 07, 2009, 04:38:47 pm »

My doctor also encouraged me to consider waiting until my CD4 count was 350 or below. I ended up starting Atripla when my tests came back at 385, because I had a kidney infection at that time that had outlasted two different antibiotics. I am glad that I started. Not only am I feeling better, but I also have the psychological comfort of feeling that now I'm actually doing something to fight this virus.

clsoca · « **Reply #25 on:** June 07, 2009, 05:45:49 pm »

I think the jury is still out on whether or not to start meds early. I stated when my cd4 count barely dipped below 300 and I am glad I did.

Inchlingblue · « **Reply #26 on:** June 17, 2009, 06:52:53 pm »

Quote from: jcelvis on May 30, 2009, 01:55:03 pm

My doctor has said that if i start early more than likely my Viral Load will be undetectable in a matter of months and my CD4 count will rise as well.

With a VL of 10k, which is pretty low, I'd bet you would be undetectable in a matter of weeks, not months. There are some drugs such as Isentress (with Truvada) which have been shown to knock down VL very fast and Atripla is also fast. It would not be unheard of, starting at 10k, to be UD in like 2-3 weeks.

Miss Philicia · « **Reply #27 on:** June 17, 2009, 11:24:01 pm »

Quote from: sharkdiver on June 04, 2009, 01:42:37 am

What side effects are you talking about?

If he thinks you can ward off lipoatrophy from jogging I'm going to have a hearty chuckle.

aztecan · « **Reply #28 on:** June 18, 2009, 10:27:06 am »

Research is pointing to health benefits of starting early because it is now believed HIV can cause damage to the body even though the person may not appear or feel ill and may, indeed, have a relatively high CD4.

The belief is the virus itself may be causing damage leading to such things as COPD, various cancers and other conditions, including strokes and heart attacks, and the longer it is left unchecked the greater the damage and danger.

In other words, the bug is biting even if you don't feel it.

The standard when the doctor and I had the talk and I decided to begin therapy was to start meds at 500 CD4s or less.

That was 13 years ago. I don't regret my decision to start, even if it was in the "old days" when the meds were a bit more troublesome.

But, each to their own.

HUGS,

Mark

AboutToStart · « **Reply #29 on:** June 18, 2009, 11:30:14 am »

Start "Early"?? Dude I hate to break it to you but numbers at the bottom 400's is not that early... True you can still wait to the official cut-off number of 350, but it's not like you're on 700-800... Nowadays trend is to start before crossing the 350 line and even ABOVE 500.. Some recommend starting as soon as detected. The reasons being exactly what Mark has explained above.. So if you were anywhere above 500 I could understand the term "start early", but you're case is not that "early" at all...

I know this is easier said than done. I was around 470-480 (21-22%) for a couple of years and didn't even "dream" of starting. 6 months ago number started to plunge down. Still I made excuses for myself and kept hoping they'll go back up. First major drop was to 340 followed by 287 the next time. Almost 200 count drop but % remained stable arond 20% so Doc did not get too alarmed from the drop like I did. Plus, I had an "explanation" for that drop: I was just diagnosed with Syphillis (didn't see any symptoms on my body but blood test revealed it). So I started a set of antibiotic shots in the butt (pretty painful) to treat the infection and hoped CD4 would also go back up. It did, slightly, go back above 300. I got optimistic and made a pact with Doc to wait till next blood test and see if numbers continue to rise. They didn't. My last lab showed CD4 of 278 (19%) and the decision to start meds was made (i.e. Atripla).

Now, of course each case is different. Your numbers are only very gradually decreasing, no BIG plunges like mine, but so does your %. True your VL is considered very low. So is mine, and the weird thing is that mine was actually decreasing during those CD4 drops I mentioned (VL actually came down from 30K to 25 and 20K). Still Doc says the decision to start is good coz in those low numbers (below 50K) small changes up or down are not really considered "significant" and the fact remains that the virus is NOT supressed.

At the time these lines are being written I haven't actually started yet (I'm waiting for the weekend, maybe the next one..) but I have already filled the prescription and just a step away from "jumping to the pool".

I hope that helps you with your question.

Miss Philicia · « **Reply #30 on:** June 18, 2009, 11:44:46 am »

Quote from: aztecan on June 18, 2009, 10:27:06 am

The belief is the virus itself may be causing damage leading to such things as COPD, various cancers and other conditions, including strokes and heart attacks, and the longer it is left unchecked the greater the damage and danger.

Yes, heaven forbid anyone blame long term use of HIV medication for anything.

Inchlingblue · « **Reply #31 on:** June 18, 2009, 01:19:38 pm »

Quote from: Miss Philicia on June 18, 2009, 11:44:46 am

Yes, heaven forbid anyone blame long term use of HIV medication for anything.

It's a big balancing act, which is why it's so difficult for anyone with decent numbers to decide when to start. So many factors to consider. Look at at Ann, she's gone for like 12 years without starting and still doesn't seem to be at a place where she will be starting anytime soon. She's mentioned how glad she is she did not start since the meds were more toxic when she was first diagnosed.

The meds are definitely so much better now, but they will keep getting better and better which makes it so tempting to hold off until they are almost perfect, which I believe they will be someday. On the other hand, the virus is definitely causing damage on its own, there's no denying that.

I think, bottom line is, in this day and age, the meds have gotten good enough that starting earlier is becoming a better proposition when weighing med toxicity v. unchecked HIV

Being able to access the meds, which are so expensive, is a whole 'nuther thing, especially considering, as far as things now stand research-wise, they are to be taken for life with no interruption.

Miss Philicia · « **Reply #32 on:** June 18, 2009, 01:33:23 pm »

Oh, I agree, which is why I've repeatedly stated that if I was in the position to consider when to start treatment I'd not use the 350 number, but I would use 500. I remain unconvinced at present that I would use 750, etc. Now, if things were bothering me mentally about the issue and causing incessant worry, then maybe I'd use that higher number, but then that's a different issue perhaps necessitating a therapist because it's indicative of a larger issue.

aztecan · « **Reply #33 on:** June 18, 2009, 01:39:54 pm »

Quote from: Miss Philicia on June 18, 2009, 11:44:46 am

Yes, heaven forbid anyone blame long term use of HIV medication for anything.

You know better than that. After 11 years on Crixivan, etc., I have plenty of evidence for long-term side effects.

But, at the same time, I started meds 11 years after being diagnosed and when my numbers were dropping rapidly. I guess I was lucky, they came out just at the right time for me to avoid the pitfalls of mono and dual therapies.

So, it is a balancing act. I woulid probably not be around today were it not for the cocktails available in 96, many of us wouldn't be.

This isn't a perfect world and there aren't any perfect answers.

HUGS,

Mark

Inchlingblue · « **Reply #34 on:** June 18, 2009, 01:50:09 pm »

There's also the question of when to start with those few individuals who are diagnosed with acute infection (i.e. soon after being exposed but after the PEP window). There are several studies being done to see if intervention that early, not only with existing HAART but adding an HDAC-inhibitor drug such as Zolinza will prevent the formation of viral reservoirs (or at least minimize them).

Also for those with acute infection there is a hypothesis that if you start HAART very soon after exposure and take consistently for about two years, you would then be able to take treatment interruptions without the concerns that they usually pose (because your reservoirs would presumably be minimal).

I realize there are relatively few individuals who are diagnosed that early but some are so these are things they have to decide.

antibody · « **Reply #35 on:** June 18, 2009, 08:00:58 pm »

i found this post in Research News
http://forums.poz.com/index.php?topic=27510.0

Forums Index

Welcome

Author Topic: Start Early or Wait? (Read 12603 times)