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Author Topic: News for cd4 above 350  (Read 7666 times)

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Offline beachdude2003

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News for cd4 above 350
« on: February 20, 2008, 08:59:30 AM »
Guys, I don't know if this helps anyone or not. It helped me to make up my mind.

 
 

February 19, 2008

Starting Treatment With Higher CD4s Cuts Death Rate




People who start antiretroviral treatment with CD4 counts above 350 have the lowest risk of disease progression and death compared with people who start at CD4 counts below 350, say the authors of a study published in the February 1 issue of the Journal of Acquired Immune Deficiency Syndromes (JAIDS) and reported by AIDSmap. The study lends further support to a trend, marked by recent changes to U.S. HIV treatment guidelines, suggesting that antiretroviral therapy should be started earlier than had been previously recommended.

A research team headed by Ángeles Jaén, MD, PhD, from the Centre d’Estudis Epidemiològics sobre ITS/VIH/SIDA de Catalunya in Badalona, Spain, reviewed the medical records from a large group of people living with HIV, called the PICSCIS cohort, being cared for at 10 hospitals throughout Spain. Nearly 7,000 people living with HIV were followed between 1998 and December 2004.

Dr. Jaén’s team closely evaluated records for 2,035 people who had started a three-drug combination antiretroviral regimen and who had their CD4 counts measured within six months before starting treatment. The patients were then split into three groups: those who waited to start antiretroviral therapy until their CD4 count had dropped below 200; those who started treatment at a CD4 count between 200 and 350; and those who started treatment with a CD4 count greater than 350.

A total of 148 patients progressed to AIDS or died over an average of roughly three years of follow-up. Using a relatively simple comparative analysis, the authors found that a number of factors were associated with an increased risk of disease progression. These included starting treatment with a CD4 count of less than 200, having a high viral load, being of older age, being an injection-drug user and being coinfected with hepatitis C (HCV).

After controlling for a number of factors, Jaén’s team found that people who started treatment with a CD4 count between 200 and 350 had a lower risk of disease progression than people who waited to start treatment until their CD4 count dropped below 200. Similar results from other studies recently inspired the United States and Europe to revise their HIV treatment guidelines, which now recommend that antiretroviral treatment be started in people with CD4 counts below 350. Jaén’s team asserts that the results of their study support those guidelines’ changes.

An additional finding, that the risk of disease progression in people who started treatment at CD4 counts above 350 was lower than in people who started treatment at CD4 counts between 200 and 350, lends credibility to the belief that even moderate levels of immune suppression may be harmful, and raises the question of whether starting treatment even earlier may be warranted.

 

Offline achim-martin

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Re: News for cd4 above 350
« Reply #1 on: February 20, 2008, 09:37:54 AM »
THANX for this article, pal! 

It seems a lot of doctors and patients need this particular proven information in order to start treatment as early as possible. Common sense to them just isn't enough - I'm glad you brought this up and out to the public.

Offline sharkdiver

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Re: News for cd4 above 350
« Reply #2 on: February 20, 2008, 04:02:41 PM »
this didn't prove anything, no study can make a claim to prove anything.

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #3 on: February 20, 2008, 05:59:37 PM »
actually Shark, I am not sure what your comment means?  Studies are used all the time to help better treatments of HIV, Cancer etc.  while not everyone will do exactly like a study suggest, it can give researchers valuable information that can help the majority of the people.  At one time it was believed that waiting till your t cells droped to 200 was the best thing, now after doing studies they have found that is not the best.

Offline sharkdiver

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Re: News for cd4 above 350
« Reply #4 on: February 20, 2008, 07:09:58 PM »
sorry referring to the above comment about proven information. You can say this is suggested, and in this study it showed this information according to certain information gathered.

everyone is an individual and everyone responds differently to meds, their virus etc.

I'm glad you have a choice in the matter in whether or not to begin meds,that's awesome. Some of us didn't have a choice as there weren't meds around way back when it all started (like me)

Offline hartiepie

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Re: News for cd4 above 350
« Reply #5 on: February 20, 2008, 08:47:16 PM »
Sharkie is right: scientific studies never prove anything. In fact they are designed to disprove the hypotheses. They also don't relate certainties (i.e. "proofs" as in "This study proves....."), but only lesser and lesser probablilties of the given event/result occuring.


Offline sharkdiver

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Re: News for cd4 above 350
« Reply #6 on: February 20, 2008, 08:51:57 PM »
amen

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #7 on: February 21, 2008, 09:25:59 AM »
I understand what both of you are saying. I simply typed that this was some information and I hope it helps someone. I never stayed that it proved or did not prove anything.  I think there is a big difference in people that were infected in the day that you didn't have a choice about starting meds and now. You can argue either side about when to start meds and have valid point on each side.  For someone who is newly diagnosed, it is a lot more scary sometimes (just my opinion) because you don't have guidance in some situations.  Most doctors will say the standard is this but you make the call.  Which is good but then you are going back and forth and trying to get all the information you can and make the right decision.  Researchers are looking more and more into when to start meds, so aparently there are some suggestions that are leading them in that pathway.  I have read a lot of post on here from opinions from people who have been poz for a long time and value those opinions, however I am not sure they can make a good prediction or give advise about when to start meds, because the meds are different now.  If they had a choice and the meds available now were available then it might change my mind.  Most people will say that they wouldn't have started because of the side effects or it was too many pills, both of those have changed now. I was just trying to share some information with the newly diagnosed people that are trying to gather information to make a decision that is right for them.

Offline hartiepie

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Re: News for cd4 above 350
« Reply #8 on: February 21, 2008, 09:35:45 AM »
Beachdude: I agree with you. if I were newly diagnosed, I would be doing exactly what you are doing now in terms of researching info to make the best decision. There is a lot of misunderstanding about what "scientific study" means.

When I was diagnosed in the early 90s, my doctor was so ignorant of what to tell me in terms of treatment that his only advice to me was this :"Take a multivitamin every day and be sure to come see me if you are sick." He shook my hand and left the room while I sat there by myself for about 5 minutes. No talk of viral loads or cd4 counts then!

Meds now are much better in many ways, and I personally advocate keeping the immune system intact. But it is a very personal choice to be sure.
« Last Edit: February 22, 2008, 01:07:13 PM by hartiepie »

Offline Dachshund

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Re: News for cd4 above 350
« Reply #9 on: February 21, 2008, 03:46:04 PM »
however I am not sure they can make a good prediction or give advise about when to start meds, because the meds are different now

Of course we can because we are using and making the exact same decisions about the meds you might use. As you say it is only a prediction.

Keep researching, but don't discount experience. There are members of this very forum who are seriously more knowledgeable about HIV than most doctors I know. Keep an open mind.

Offline sharkdiver

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Re: News for cd4 above 350
« Reply #10 on: February 21, 2008, 03:58:48 PM »
Beachdude

I agree that it is great that you are doing research on your own. I was reacting to achin-martin's response. He has been the one talking about proven this and fact about that. BS

I am not knocking you for your sharing of the information, in fact it is wonderful that you are doing so.

I agree that the medication has changed but there are still side effects to contend with and they are still considered experimental by many aspects. It is still not known what the long term side effects are with the ones that are available today. Hopefully by the time you might need them, even better options will be available to you.

As far as not being able to give good advice, well  there are times when I have informed my doctor about things that he was yet aware of and vice a versa. I have learned to be a partner with my doctor and in making my medical decisions. That would be something to consider.
Anyways  good luck to you

Sharkie

Offline thunter34

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Re: News for cd4 above 350
« Reply #11 on: February 21, 2008, 03:59:15 PM »
however I am not sure they can make a good prediction or give advise about when to start meds, because the meds are different now

Of course we can because we are using and making the exact same decisions about the meds you might use. As you say it is only a prediction.

Keep researching, but don't discount experience. There are members of this very forum who are seriously more knowledgeable about HIV than most doctors I know. Keep an open mind.


Agreed.  As a poz person, I can say that I have come to highly value the information and opinions offered through this site.

(Apologies, but on a completely unrelated side note, I have to ask:  What's the deal with people now getting all fancy and referencing other's posts in italics and pretty colors rather than just using the QUOTE function?  It makes it unnecessarily difficult to know who people are referencing and in which post.  Sorry for the mini-highjack, but I had to get that off my chest.)

Doxzilla is right:  Don't discount experience.  If you just do a little bit of digging, there are people here from all stages of the HIV/meds game, and the investment of time spent reading the perspectives of the Newly Infected to the Long Term Survivors pays enormous dividends.
AIDS isn't for sissies.

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #12 on: February 21, 2008, 06:30:04 PM »
I didn't mean to imply that I don't value the opinion of those on here.  I think this is a great site and I do value everyones opinion very much.  It is my feeling however that most of the people that have been hiv for a number of years have the opinion to wait as long as you can before starting meds. I just wander if that opinion is based on their experiences or knowledge of the drugs that we are talking about.  One guy told me he had very bad side effects when starting meds 15 years ago and to hold off as long as I could. The med he started on is not the med I would be starting on, so how is that good advise for my situation.  Most everyone was for the most part forced to take meds or strongly suggested taking meds. Some of the people might resent that and have an opinion not to start till you have to.  That was my only meaning from the comment.  If someone is giving advise to truely help someone that is one thing, to give advise because they had a bad experience is another.  I want to end by again saying that I do value everyones experience. I just hope that everyone looks at it as it's a new game sometime when you are talking 10 or 15 years. I am sure that I will never know what it is like to be told that I have a diagnosis that their is no cure for or no hope for and to get my affairs in order. At the same regard. I am not sure that some people know what it is like to be newly diagnosed now. It is still very scary from where I am sitting.

Offline BT65

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Re: News for cd4 above 350
« Reply #13 on: February 21, 2008, 06:41:33 PM »
Beach, I've always said that starting meds is a very personal decision.  It's one that should be made between patient and doctor, after much research and thought.

I'm sure being diagnosed today is still scarey.  I really don't think anyone here debates that.  I think sometimes what I feel is a tad jealous.  But then again, I've had a longer time to deal with this.  You just hang in there.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline komnaes

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Re: News for cd4 above 350
« Reply #14 on: February 22, 2008, 02:58:21 AM »
Hiya Beach,

As someone who's recently tested HIV, I have to say the issues surrounding when to start meds are getting very confusing, to say the least. I am in Hongkong and the guidelines here still say to wait til CD4 drops below 200. It's on the low side no doubt but after having going through all relevant records, I know that Hongkong has one of the lowest mortality rates among first world countries.

There's of course the lingering doubt why they put us on meds late is because we have universal health care (i.e. the later to start, the more money they save), and from my own and others' experiences I do see a tendency to not do certain tests when they should have been done. The cares provided by the clinic are kept to the minimum, but at the same time I do see very competent advises and cares given to patients when needed.

I know my doc and many others here were trained by Dr. David Ho himself, and that's a comforting thought. So now with CD4 around 400 for the last 2 blood works I can still afford to wait, but when it does drop below 350 I think I will initiate a discussion with my doc and point to him those new researches that I have no doubt he's read already.

So I guess it's just what Betty meant - depending on the system one is in, talk and discuss fully with one's doc is far more important that sticking to a number, be it 200, 350 or 500.

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Dachshund

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Re: News for cd4 above 350
« Reply #15 on: February 22, 2008, 11:42:31 AM »
I am not sure that some people know what it is like to be newly diagnosed now. It is still very scary from where I am sitting.

Oh my goodness of course we do. That's why we jump in ferociously if we feel someone is offering bad advice. That's why we started the fairly new forum I Just Tested Poz because we realized the special needs of the newly positive and that it is still very scary when you first test poz.

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #16 on: February 22, 2008, 05:51:15 PM »
maybe I just keep typing the wrong thing.  I really can't see how someone that has been poz for 15 years or more can know what it is like to test poz now with the drugs that are available now and the decisions that a poz person has to make about when to start meds.  I am sure the rest is the same.  I have two ex boyfriends that are poz. Both have been poz for 15-20 years.  Both have told me that the doctor made all the decisions and they both started meds as soon as they found out because there were no other choices.  How could you know what it is like to test poz now and have a choice if you never had a choice when you tested poz?  My confusion is about when to start meds and the research that is being done. Not side effects, not cd4 count, not viral loads.  Just the decision of when to start meds and the research that is being done.  If I were never blind, I could not give advise to someone about what they are going thru.  I am sure that there are some good advises, I was just making a comment and trying to get newly diagnosed people some information of making a decision about when to start meds. I know it is different for each person. What I keep thinking and no one wants to mention is what the virus is doing to your body the years that you are waiting to start meds.  How many cells did it destroy, how much tissue damage it did, etc.  No one seems to ever mention what is going on in the body while you are waiting on your cd4 count to reach a magic number.

Online Miss Philicia

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Re: News for cd4 above 350
« Reply #17 on: February 22, 2008, 06:25:28 PM »
beachdude, while I appreciate what your friends told you, I was also diagnosed 15 years ago and indeed if your cd4's were above "x" level you were not pressured to commence treatment, at least not in my doctor's office.  And while there are more regimen possibilities to chose from now, there are basically 3 combos they might start you with.

Your confusion is simply when to start, and you happen to be entering the treatment stream during a year when that point seems to be shifting in the medical community.  You're going to have to make a judgement call, but you are going to have to do things like making such judgement calls for the rest of your life going forward, so you might as well get used to it.

I don't really see the situations fundamentally different now from what it was 15 years ago, except for the fact that we had a much greater chance of being a foot under the soil than you do.  Would you like THAT pressure on top of you right now?  Personally I don't see much of a comparison.

As far as your last line of questioning:  yes of course a lot of damage is being done to your immune system every hour you wait.  That's a bit of a no brainer, no?  The thinking PREVIOUSLY was that there was a net gain in waiting vis-a-vis the long term side effects like lipoatrophy and peripheral neuropathy.  I think the thinking now is that the net gain is negligible, hence why there's a change in the bottom cd4 count for starting meds.

I realize you want a glossy brochure instructing you what door to open on what day of the week, but it doesn't work that way.  Never did, never will.  You're always going to find one study that says "x" and one that says "y" -- it's always been like that.  Always will be.
« Last Edit: February 22, 2008, 06:27:11 PM by philly267 »
"I’ve slept with enough men to know that I’m not gay"

Offline madbrain

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Re: News for cd4 above 350
« Reply #18 on: February 22, 2008, 08:31:06 PM »
No one seems to ever mention what is going on in the body while you are waiting on your cd4 count to reach a magic number.

Maybe because what happens seems to vary quite a bit from one person to another. For one thing some people never reach the 350 CD4 target magic number for meds. I know one person in my support group who is poz over 20 years and not on meds and still not below that amount. He does get very tired from time to time. He is also double my age at 62.

I still wonder what really happens with those of us who maintain high CD4 and a low viral load without the meds. It's been the case for me since diagnosis 14 months ago. How hard are our bodies fighting ? Would we benefit from starting the meds or not ? For me, what's the difference going to be between undetectable VL and 1623 VL ? Would the meds actually make things worse ? Right now my doc's answer is still to hold off.

Offline Jacques

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Re: News for cd4 above 350
« Reply #19 on: February 23, 2008, 01:35:24 AM »
I'd like to remind all, especially the new comers, that Aids is still a deadly disease...if left untreated. Of course there are a few exceptions, those god blessed non progressors or elite controllers. But for most of us an Hiv poz diagnosis means a life and death struggle. It was true when I was diagnosed in 1987 and  it is still true in 2008, the  difference being that the newly diagnosed have now a wide choice of meds that can effectively controll the virus and thus prevent from progressing to aids.

I was diagnosed in 1987 with 645 CD4. First thing I asked the doctor is how long?    3 to 10 years he replied, depending on how your body can fight the virus. And by the way doc what are the normal CD4 values? 500 to 1400 he said.  I will never forget how loud this baseline 500 sounded in my ears. I was so close to that baseline ! Fortunately 8 years were spent before I dropped to 450,390 and finally 365. I was so afraid , knowing that I was soon to develop aids and die but the good news came just in time: the tritherapy was now available. Give it to me at once, I said! And I'm so glad I did.

I had no choice at that time to wait until something potent became available, but if the diagnosis just came today , especially with all those new and easier meds popping in,  for sure I would ask to be treated right away.

So when I see studies showing more and more that earlier treatment means better results I believe I have made the right choice at the right time.

Thank you Beachdude for posting this study, it could indeed help new ones to take a decision.

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #20 on: February 23, 2008, 07:52:10 AM »
I really appreciate all the responses to this post.  Where I live (from talking to people around my area) when you were diagnosed 15 years ago, the doctors around here did not give anyone a choice. I live in the South.  I am sure that a few doctors gave the patient a choice but for the most part from what I have been told, you didn't have a choice.  I know that having options sometime mean a better outcome and I am sure it was horrible to be diagnosed 15 years ago. My doctor told me that I could expect to live 20 or so years. My ex was told that he would be lucky to live 2-4 years.  I wish there was a text book answer to my question and the more studies done, just seem to confuse me more.  I hope to make the right decision and I hope everyone else out there does also.  Maybe with enough research, the doctors can find out what works for most people and maybe have a better agreement of what to do next once diagnosed.

Offline next2u

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Re: News for cd4 above 350
« Reply #21 on: February 24, 2008, 01:12:40 PM »
thanks for posting this information. this is something i have been considering for awhile and this study sheds light on a rather difficult issue. personally, i have set my start point at 2 consecutive tests below 500 coupled with a negative trend. why 500? beats the hell out of me, but im definitely scared. im scared of getting sick and im scared of the side effects of the meds. i appreciate the advice of all the old schoolers here. there have been many things echoed through these postings. first and foremost, starting meds is a personal decision. learning about options is paramount. lastly, most of us will have to be on meds at some point in time and sooner is generally considered better than later.

okay, so i really  have problems with the thought of diarrhea and nausea. but those side effects are definitely trumped by oi's. also, meds effect us all differently. i guess, well i know, in the back of my head im waiting for some miracle pill without any side effects (even though some of my friends are on meds w/o side effects). i was also hoping for 3 more years without meds so i could pay off a bulk of my debt and finish school. doesn't look like things are gonna work out that way.

if you come across more info post it!
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #22 on: February 25, 2008, 06:27:09 PM »
I think that some doctors are looking at starting their patients off at higher numbers. From the research I have done, one of the main reasons to wait is the toxicity of the meds. But what I keep wondering is what the virus is doing to your body while you are waiting to take the meds? Isn't that bad also? I go back to my doctor on Wednesday to talk about my lab work and talk about options. Best of luck to everyone that posted here.

Offline madbrain

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Re: News for cd4 above 350
« Reply #23 on: February 26, 2008, 07:46:47 PM »
beachdude2003,

I think that some doctors are looking at starting their patients off at higher numbers. From the research I have done, one of the main reasons to wait is the toxicity of the meds. But what I keep wondering is what the virus is doing to your body while you are waiting to take the meds? Isn't that bad also? I go back to my doctor on Wednesday to talk about my lab work and talk about options. Best of luck to everyone that posted here.

Yes, toxicity was cited by my doc too as one of the reasons he wants to keep me off meds. I guess that would depend a lot at what age you would start treatment also. If you get infected old enough, starting treatment right away may be less of an issue. Please keep us posted on what your doc says about what happens while off treatment.

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #24 on: February 29, 2008, 05:12:34 PM »
I went to my doctor Wednesday and talked about my labs. He told me that my numbers were great.  He said that my imune system was fighting back pretty good and that there isn't much evidence that the virus is doing much of any damage right now( the virus is doing damage, he was saying in comparison to what the toxicity of drugs can do to the organs over time)  He said that around 10% of the people that get HIV never go on meds because they have nonprogressive HIV.  He is going to see me in 8 weeks and do more blood work. If my labs are the same or better, I stay off of meds, if they are worse, I go on meds.  We talked for almost an hour.  We e-mail each other when we come across an article that catch are eye.  He is a wonderful doctor. I will keep you posted

Offline tucker

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Re: News for cd4 above 350
« Reply #25 on: March 01, 2008, 12:48:03 PM »
My doctor told me that I could expect to live 20 or so years. My ex was told that he would be lucky to live 2-4 years.  I wish there was a text book answer to my question and the more studies done, just seem to confuse me more.  I hope to make the right decision and I hope everyone else out there does also.  Maybe with enough research, the doctors can find out what works for most people and maybe have a better agreement of what to do next once diagnosed.

My doctor told me that saving for retirement, and planning for 30,40,50 years was a reasonable thing to do... based on what's available NOW, not even planning for new meds and treatments in the future... do you think she was just being kind?  20 years seems kind of bleak... I will only be 50, and my mom will be 73... I would really like to spare her the pain of my HIV status by outliving her...
confirmed diagnosis 10.1.07
10/07  cd4 504 vl 40,000
1/08  cd4 524 vl 73,000
4/08  cd4 484 vl 48,060
6/02/08 started Truvada, Reyetaz, Norvir
7/08 cd4 605! vl 400
9/08 cd4 713 vl 175

k103 mutation :(

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #26 on: March 01, 2008, 10:52:43 PM »
Tucker,
no one is promised tomorrow.  I think what my doctor was going on is the typical results.  Some people die within a few years of infection, so live long lives.  I think where my doctor is coming from is the toxicity of the medication and what the virus does to your body.  I haven't ran into anyone here or elsewhere that has been diagnosed for over 30 years. That isn't to say there isn't anyone, just haven't heard about them.  There are other factors also such as heart disease and liver disease to take into account. Once you get a virus or have a compromised imune system, then there is oppurtunity for other things also.  My father died of a heart attack at 46 his father at 39, so if I live to be 60 which is in about 20 years, I am doiong good.  As far as subjecting our parents to having to bury us well, we could die in an automobile accident tomorrow and I am sure the sorrow felt by loved ones would be just as great as if we passed away from being in the hospital.  I would ask my doctor where he or she was getting their numbers from. Does anyone else know anyone who has survived over 30 or 40 years with HIV?

Online Miss Philicia

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Re: News for cd4 above 350
« Reply #27 on: March 02, 2008, 07:01:09 PM »
Does anyone else know anyone who has survived over 30 or 40 years with HIV?

Just curious, but how old were you in 1969, 40 years ago?  I don't recall there being any way to diagnose HIV that year, nor any medical treatment if one could even do so.
"I’ve slept with enough men to know that I’m not gay"

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #28 on: March 02, 2008, 09:41:43 PM »
People have been being diagnosed since the early 80's. my point is that I don't know a doctor around that could tell you 100% that you are going to live for 40 years with hiv.  If they do, then I would have to rethink their judgement.  If someone is telling you that you are going to live for 50 more years then I would just like to know where they are getting their information.  HIV was around before it was diagnosed.  Anyone should know that any virus or disease is around for a while before it is discovered or named. Most of the time, several years go by and a lot of people get sick and or die before the disease/virus is named and the research begins. I am not suggesting that you are going to die tomorrow, but 40 or 50 years is a long time to live with a virus and take meds. Just my opinion.

Offline hotpuppy

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Re: News for cd4 above 350
« Reply #29 on: March 03, 2008, 05:30:39 AM »
Beachdude - Patience.... and an open mind are going to be our best friends against HIV.  I've read several of your threads and posts and you and I have alot in common.

I was initially diagnosed on 30 Nov 07 by my Dr.  I had an indeterminate Western Blot.... mainly shame on me for pushing for what I thought was the right test.  I got my confirmatory WB, elisa, and PCR tests (at my expense) on 24 Dec 07.  Just a few days before you got yours.  While I'm always open to dialogue, I did enough reading in my transition from denial to accepatance that I know an awful lot about how HIV testing works and which tests are supposed to be used in what sequence and with what probabilities.

I'm very very grateful for the hard work, sweat, and lives that have gone into making my life so much simpler and easier.  I am fortunate enough to be in Houston, Texas where we have a well organized set of ASO's.  They teach a class called "next step" that I jokingly refer to as HIV 101.  (As an aside, I apologize if joking annoys some of you, I have chosen to use humor as a weapon against my unwelcome tenant - HIV)    I'm also lucky to have several positive friends in my life who are able to help me see the next stepping stone from time to time when I'm not sure which of them I should choose. 

I'm not going to tell you what to do regarding meds, other than you are lucky and listen carefully and completely to your doc.  I thought long and hard about this very subject and haven't reached a conclusion.  I'll share in a bit my thought process and where I'm at this minute.  I finally came to the conclusion that a doc shouldn't simply look in the damn cdc guidelines, cross reference a scrip, and tell me to have a nice day.  Frankly, I can do that.  The value that a doc has is the ability to look at something, have seen it 10 or 100 other times, and have a hunch that it's such and such and be right 99.9% of the time.  To have open conversations and be someone you are comfortable with.  I'm fortunate in that the doc that saw me on 30 Nov is just such a dr.  It's that hunch and the experience that generates it that makes a good doc.

As for Heart Disease.... yea buddy.  Grandma has Angina (among other things) and Grandpa died from a heart attack (mom's side).  Mom has high BP.  Dad has high bp.  Grandpa on Dad's side had a stroke..... and was blind from it.  So I can talk to you quite personally about that risk.  Exercise and Diet...... I started much earlier because I was terrified I'd be like my relatives.  Dead!  I think I was more scared of that then the HIV when they ran my first bloodwork.  they did my bloodwork through the next step and I still think the counselor thought I was kinda crazy when I looked at my cholesterol, glucose, and triglyerrides and was like "whoo!"  I figured for sure that heart disease would get my ass before HIV and it's friends.  Turns out my feeble attempts at a healthy meat and potatoes diet combined with cutting back on caffeine and sugar had been working.  Hitting the treadmill just 15 minutes, twice a week on a cardio routine has been able to lower my blood pressure considerably (20 pts) since beginning of this year.  For me, that's a great achievement.

Now, what I was told...... by a very experienced counselor (15+ yrs) and had it confirmed by my Dr. (also very experienced) .... was that the initial viremia (infection) runs unchecked for a couple of weeks.  Seroconversion is where your body begins to fight back.  At this point your immune system is pretty much knocked on it's ass.  It then stabilizes within a few months.  Each person's experience may vary slightly and is said to be more unique than a McDonald's toy..... :)

My personal experience is again something I've been grateful for.  I didn't have health insurance for personal reasons.  I thought it was unfair to insure myself without being able to insure the people who worked for me.  Yea buddy, I'm eatin those frickin words.... thankfully my small business lost money the last couple years so I still qualified for healthcare.  I sorta feel like Joan of Arc sometimes and I'm gonna burn at the stake for that belief.... but at least I can smile as I get a tan.  I'm greatful that a friend pushed me to get tested when I was sick at Thanksgiving.  It honestly was just a damn cold, and it wasn't "the worst illness of my life."  No sir, that was the food poisoning I'd had twice in 2007.  Once from bad queso and once from my lasagna I'd left out a bit too long.  I assure you that Acute HIV was  a picnic compared to food poisoning.  At any rate, the tip of seroconversion began on 30 Nov with P24 presenting in the WesternBlot but no other bands so indeterminate and a negative rapid elisa.  By 18 Dec seroconversion was complete as my test came back poz.  The clinic I had initially gone to wanted me to wait until Jan for retest but I decided I would rather know one way or the other.

For comparison here are some my numbers.
7 Jan 08 - CD4-316    VL, 227,000
25 Jan 08   VL 117,000

Frankly you are in a hell of a lot better spot than I am.  One of my friends was in my next step class and his numbers were like 216/500K which is damn scary.  The counselor teaching the class looks at these numbers day in and day out on tens of people.  She said that for a new infection she was expecting a VL approaching a million and CD4 where they are or worse.

My point here is just to share my info and give you some perspective on my situation.

If you have not done so, I highly recommend that you find, download, and read the CDC treatment guidelines.  It's a bit dry, a bit technical, damn big, but interesting reading.  It's a 200+page PDF.... but it has some great statistical tables at the back and some data explaining the recommended treatment paths.  It explicitly talks about starting meds on newly diagnosed.

My personal analysis is that I don't want to do bloodwork twice and jump on meds for the rest of my life.  My doc said it was my choice and that he couldn't in good faith tell me one way or the other which way to go.  He said he'd support either option.  The meds interact at some pretty basic biological processes.  Some of the long term side effects are less than exciting.  I mean I don't know about you, but I have enough trouble with unwelcome body fat..... before it moves around like a loud party guest.... showing up where it's least welcome.  The new meds that are being released are all the reason to be hopeful.  It's very possible that a new med will come out (speculation) that will require you to have not taken something else.  This could surface in the form of resistance inhibited (most likely) or side effect /collateral damage.  So basically it's a balance between dealing with HIV, preserving your body, and keeping your options open.  I'm planning to check my bloodwork again in a few weeks and my doc and I will make a collective decision at that time about treatment.  We've done the genotype and determined that I caught wild-type (lucky me, sure beats resistant type).  We're also doing housekeeping like pneumo-vacc, hep vacc, flu shot, tb test, etc etc etc.  I want to give my body a chance to see if it can deal with it.  If it can't I'd like a big cup of modern miracle please!  If it can deal with it I'll take my cup a bit later thank you.

You have a 1% chance of being a non-progressor.  That is the number I have seen in NIH and CDC docs I have found and read.  I call it the 1% lotto.

I've been told multiple times by Nurse Practicioners and my Doc that this is a "slow" disease.  It's not like terminal out of control cancer.  You don't die in 15 days from Acute HIV. 

I've thought about meds too.  I've been working to make sure I can train myself to take meds.  Compliance is not simple.  It means taking the drugs every day like clockwork.  I've been using vitamins, supplements, and other prescribed drugs.  Had a sore throat a couple weeks ago and he put me on Antibiotics while we did a culture.  Still having a change in med regimen was interesting.  Atripla is a nice drug, I'm grateful it's an option.  You screw that one up and I understand you can't go back to it.  Screwing it up means going out for the weekend and forgetting your meds. 

At any rate, there is no right, and there is no wrong.  There is only the decision that you are comfortable with. 
:)
 
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline hotpuppy

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Re: News for cd4 above 350
« Reply #30 on: March 03, 2008, 05:38:16 AM »
Oh I forgot to add.....

There are two studies I know of giving a 44 year life expectancy for a 35 yo WM diagnosed in 2007.  35+44=79 which is, you guessed it, the median life expectancy.

Sadly,  one of the studies I read this in was a study on the inequality of care across gender and racial groups.

The other was one my doc mentioned to me that he saw in a conference he went to. 

I did not dig into the methodology very hard..... but I think coupling it with the CDC treament guidelines/probability tables and it makes sense from a statistical standpoint.  I can't give you an equation for it, I can just tell you that both sets of data point in the same general direction.    it also places a large emphasis on CD4 count and viral load.  The underlying theme in the data was that bad behavior is not rewarded.  Bad Behavior is specifically abusing your body with alcohol, unprescribed drugs, and other bad habits.  I'm not throwing a rock here, so please don't anyone take it that way.  I'm just suggesting that getting high, drunk, and enjoying a 5000 caloride a day diet isn't doing your body any favors in it's attempts to deal with HIV. 

To each their own, live a life worth living, every day.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline beachdude2003

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Re: News for cd4 above 350
« Reply #31 on: March 03, 2008, 08:39:59 AM »
Thanks Hot,

I have always tried to take care of my body even before HIV mainly because of my family history.  Everyone is different and I really think that the way you take care of yourself(diet, exercise, etc.) really pays off.  I would like to get more information on the two studies and the cdc guidlnes.  Have a great day everyone. R

 


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