Author Topic: Hello Everyone, I just was diagnosed in July 2012 (Read 8399 times)

softballdude2012 · « **on:** August 18, 2012, 09:59:09 am »

Hey Everyone and anyone,

I just would like to say hello and introduce myself. I was just diagnosed in July 2012. I had my first doctors appointment this past week. One of the research nurse's ended up calling me and said that I was rare. My CD4 is well above 700 and my viral load around 12000. He has asked me if I wanted to take part in the START Study. If you aren't familiar with it, it is a study for newly diagnosed people and it is a clinical trial on when to start taking meds. Again he told me it was rare that a newbie so to speak with such good counts come along. The study would put me in one of two groups immediate medicine take and be monitored every 4 months or in the deferred group which is monitored every 4 months as well but do not take medicine. I am really unsure of what to do and would like advice. I am scared to get really sick and my thought was you are in good health get on medicine and stay healthy but I also want to help research out. He stated that if I was to get sick along the way they would put me on medicine right away. I am just wondering do I take that chance???

As far as my other number go, I do not know yet, I go back in September for the full analysis of what they found in my blood.

I'm 28 years old. I love softball and bowling. I don't want my life to change. I'm 6'2 and 152. Good looking. This is all so new! A little overwhelming but I do know life will go on. I have told a few people really close to me and they have been really supportive thus far.

Please feel free to talk to me...Thanks all

Jeff G · « **Reply #1 on:** August 18, 2012, 10:08:55 am »

Welcome to the forums . I'm not familiar with the study you talking about but there are many members here that are really good with the science and medication aspect of living with HIV . I'm betting they can give you some sound advice to consider after they see your post .

softballdude2012 · « **Reply #2 on:** August 18, 2012, 10:18:49 am »

Hello,

thank you for your reponse, here is the link:

www.thestartstudy.org

I reviewed this several times. I know I have some time to make a decision as I go back just about mid September but I am not sure what to do.

Thanks for replying!

Jmarksto · « **Reply #3 on:** August 18, 2012, 10:21:35 am »

Hey Softballdude;

Sorry for your diagnosis, but welcome to the forums. I was diagnosed in June, and understand the overwhelming feeling - but I feel much better now than I did a few months ago and a big part of that feeling better is the information and support from this forum. Its good to hear you have good personal support too.

With regard to your research opportunity -- it sounds like you are in very good medical hands either way you go. I don't have any knowledge about the study or potential advantages/disadvantages - so from my perspective it is a personal decision. As jg1962 noted there are some very knowledgeable members here that will likely have more useful insights for you.

Again, welcome,

JM

softballdude2012 · « **Reply #4 on:** August 18, 2012, 10:26:50 am »

Hello JM!

Thank you for the welcome I have posted the link but here it is:

www.thestartstudy.org

Check out if you would like. It is just a different style of life I have to get use too. Just like when I first came out as gay.

Thanks,
Joe

NY2011 · « **Reply #5 on:** August 18, 2012, 10:49:16 am »

Your lab reports are good and I commend you for your willingness to participate in a clinical trial. The thought process about beginning ART is evolving, and you ultimately should do what you and your doctor think is best for your well being, first and foremost.

One established school of thought is that if the immune system is still stable, as yours clearly is, it may be counterproductive to expose the body to the possible harmful side effects of the antiretroviral medicines right away, if the body seems to be managing it on its own. Drug therapy is viewed as a line of defense when the body is no longer able to do it on its own.

Another school of thought that seems to be gaining more traction is to begin meds right away, and to keep the immune system as strong as possible, for the long haul. This school of thought, from what I understand, has come about because the toxicity of newer drugs is lower, and that looking at treatment in terms of increasing lifespan, preventing disease and sustaining quality of life, the benefits of ART intervention outweigh the risks of long term drug therapy.

I understand that the goal of the START trial is to gather data and analyze both approaches to treatment.

I was diagnosed in late Oct 2011, roughly 25 days after being infected. I started on drugs right away, during acute infection. You can see my lab results below. I personally think that I am much more at ease being on treatment early.

You may want to read about the VISCONTI cohort study, too, to get some more info about possible long-term benefits of starting early.

mecch · « **Reply #6 on:** August 18, 2012, 10:56:08 am »

But have you spoken to a HIV or Infectious Disease Doctor, MD, a specialist? Why is this going through a nurse?

You don't have much information yet about your virus. Can you explain more, about who/what you have consulted this far. Is this a clinic? A hospital? Do you have health insurance? Are you going to be seeing a doctor or a nurse on a regular basis, if you decide not to enter this study?

It is nice to think about "helping research" but the main issue is what you want to do for yourself and you can figure this out with some time, talking here on line. And also talking a few times with the person who is going to be treating you on a regular basis (if that is what is going to be available). So before you give an answer about this study take a good deep breath and relax and also wait until you are talking to your care giver who has ALL your blood work and is explaining all of it to you.

Common_ground · « **Reply #7 on:** August 18, 2012, 10:57:29 am »

Hey buddy!

Your numbers looks great

When I got my first labs I only had some 200 cd4s so I "had to" start but I was already leaning towards starting meds asap anyway regardless of cd4s and VL. Today I do not regret going on meds, I feel great and if I got + again

I would have made the same decision.

Youll find experts supporting most theories on when to start or not to start. My advice to you, for what its worth, is to read up a bit on when to initiate treatment and make up your own mind. Knowledge is power. You are already in care and monitored so keep seeing your doctor and whatever you feel is right for you will be the best.

softballdude2012 · « **Reply #8 on:** August 18, 2012, 11:35:22 am »

Hi Everyone,

Thank you for your replies. I will have my consult with my doctor in September. The nurse was giving me a call as he is a research nurse and it is what he does, he was just stating I would be a good candidate for the study. I have not agreed to anything as of yet. I apologize if I was not clear on that.

I definately want to see the full results vs the snapshot of what the research nurse told me. Where I go is a clinic inside a hospital. They have 12 doctors who specialize in HIV treatment along with their full support staff. Yes I have health insurance and yes the medication with or without the study will be taken care of.

My intial thought was just to get on meds right away as I am healthy now and would like to continue to be healthy. I am nervous on side effects though. I plan on seeing my doctor on a regular basis with or without this study. The main concern is me.

I have been to a healthy relationships class that was a 6 week program and it was all about how to live life with HIV and when to tell and not to tell and all that good stuff. I even have a HIV counselour that I can call at anytime.

I was very overwhelmed at first but I know there is lots of help out there. Finding this here was just an added bonus!!!

Common-Ground of course I accept all opinions and I agree with you the final decision will be mine. Thanks for your advice.

Mecch- I hope I addressed your questions as well.

NY2011- thanks for your words. I will have to check VISCONTI out. I hope I spelled that right LOL!

Everyone thank you so much. I really appreciate it as I do not have many to talk to this about at least who would care to understand and listen.

Thanks again please keep the conversation a going!!!

mecch · « **Reply #9 on:** August 18, 2012, 11:56:59 am »

Ah good. So well set up. Bravo. So take your time, and discuss things with your doctor.

softballdude2012 · « **Reply #10 on:** August 18, 2012, 12:08:23 pm »

Thank you Mecch!!!

mecch · « **Reply #11 on:** August 18, 2012, 03:43:51 pm »

(The reason I asked those questions was because if someone does not have insurance or does not have a good access to medical care, they can have really different anxieties and fears at diagnosis than people who do have a doctor to explain things and reassure, and the drugs needed. And might be willing to do studies because thats the way they are going to get care. So anyway, now I see its not your issue.)

spacebarsux · « **Reply #12 on:** August 18, 2012, 03:59:47 pm »

Hey Softball, Sorry you tested poz but glad you find your way here.

I'd say it isn't a bad idea to study all the facets of the clinical study so as to make an informed decision. Also, no harm in discussing this with your doctor in greater detail. If you scour these forums, the START studies have been discussed.

If you're comfortable with starting therapy right now then go for it; or if not, you could wait a bit. Either way, enrolling for the study isn't a bad idea, in my opinion.

I too wanted to enrol for the START clinical study but couldn't due to certain logistical problems. At the moment, I am still treatment naive.

Ann · « **Reply #13 on:** August 20, 2012, 07:51:47 am »

Hi Dude, welcome to the forums.

My honest opinion is that you should enroll in the study. It's a very important study and addresses a very vexing question - when to start?

Your numbers are fantastic and if you happen to go into the non-treatment arm, it's not going to do you harm. I've been poz for fifteen years and I've only just started meds a few weeks ago because my numbers have been good, and while I wish I'd started a couple years ago, in no way am I unhappy about the first twelve or thirteen years of not being on meds.

Look at it this way. We have the fantastic meds we do today because of all the men and women who went before us and volunteered for studies. We'd be up shit-creek without a paddle if it weren't for them. As you say, if your numbers start to decline you'll be put on meds regardless of the study (if you go into the non-treatment arm) so you really don't have much to lose, but science - and poz people - have much to gain.

As others have said, the decision is ultimately up to you. It would be nice if you decide to help contribute to our arsenal of treatment knowledge (and you can afford, with your great numbers, to be put in the non-treatment arm) but nobody is going to be upset with you if you opt out.

On the other hand, a lot of people are going to be proud of you and thankful to you if you do enroll in the study.

Good luck whichever way you roll.

softballdude2012 · « **Reply #14 on:** August 20, 2012, 08:18:53 pm »

Hi Ann,

How are you? Thank you so much for your email. What you say makes a lot of sense.

I am just worried I guess because it is all so new. I am pretty healthy and want to stay that way. I totally get what you are saying.

Decisions Decisions.

We would not have the great medication we have today if it was not for people who have partcipated in the studies.

I will continue to think on this. Any more advice I appreciate.

Also thank you so much for listening to me. Again I do not have many that I talk with about it.

Thanks,
Softballdude2012

drewm · « **Reply #15 on:** August 20, 2012, 09:10:29 pm »

Welcome to the forums!

softballdude2012 · « **Reply #16 on:** August 21, 2012, 09:39:36 pm »

Hi Drew!!!

Thank you!!!

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Author Topic: Hello Everyone, I just was diagnosed in July 2012 (Read 8399 times)