Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol

HIV Life >> I Just Tested Positive

Pages: 1
Jeeves01
Newbie

Reged: 11/08/07
Posts: 2
New to all this... from England
      #233454 - 11/08/07 03:24 PM

Hello to everyone.

I have just been diagnosed with the following labs:
CD4 count - 34 / Viral load - 572,000

I am obviously concerned, but want to be as well informed as I possibly can be.

Is there anyone else out there who, like myself, was a late presenter? If so, how are you doing on combination therapy?

Also, I have been offered the following choices of combo's, and I wondered if any of you could offer your opinions as to their tolerability, potency etc:

- Epzicom + Sustiva
- Truvada + Sustiva
- Truvada + Reyataz + Norvir

My Doctor has filled me in as to the pro's/con's of each combo, however, this is no substitue for hearing from those who have had first hand experience.

I have been advised that P.I.'s offer a higher barrier to resistance, therefore, I am less inclined to start with these initially and to save them for later use - is this a good idea? Or can you start on a P.I. combo, move on to an NNRTI combo (For tolerability reasons), and then move back to a P.I. combo at a later date without any resistance issues?

Do the meds really work as well as people say they do, i.e. can they help you to lead a normal lifestyle, or do any of the HIV "issues" (e.g. Diarrohea etc) still linger in the background?

Lastly, one final question. If you are fully adherent to your medication, can you remain at undetectable levels for many years? Have any of you experienced this?

Thank you so much.

Gary J, England, UK.

Post Extras: Remind Me!   Notify Moderator  
oldwoman
Guardian

Reged: 05/12/07
Posts: 435
Loc: Phila,Pa
Re: New to all this... from England new
      #233455 - 11/08/07 04:29 PM

Hi Gary,I was diagnosed with a CD4 count of 5 and am now up to 583,soyes I'm doing good on my combo.the only med I'm on that you mention is Epzicom,I had some problems the first 2-3 weeks with feeling tired and like I couldn't catch my breath but after that I've had no problems..as far as the PI and NNRTI combinations you will be on a PI and either an NNRTI or NRTI the combination is between 2 or 3 classes of meds.You should never be on only one class of meds.
The meds work great,most of us lead normal lives,I do sometimes have occasional diarrhea but I'm not sure if that's a side effect of the meds or from the HIV itself.I do know which foods lead to the problems and avoid them.
Yes you can remain undetectable for many years if you are adherent to your meds.Some people do become resistant to their meds after time and have to switch to a different combo.Being non-adherent will cause this to happen quicker,so be careful of how you take them.Make sure you understand how and when you're supposed to take them.

Good luck and let us know what you decide to take and how you're doing.Come back here anytime you have questions or comments or just need to talk.

Terry

Post Extras: Remind Me!   Notify Moderator  
Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: New to all this... from England new
      #233463 - 11/08/07 09:33 PM

Welcome to TheBody.. Is this your first set of labs?? If it is can you please tell me what your cd4/cd8 percentage is first.... If you are at cd4 34 absolute which can only be arrived at by multiple sets of labs done (2 weeks from now) to get a true picture of your virus you are potentially in a very dangerious position for infection... Your percentage is a very important factor, please post it.

There are multi-ways to combat hiv... Your third option would be one I would stay away from because of the AZT factor in Reyataz... AZT is not something I would go for until way way down the trail if ever... Does your country have Atripla?? That is one of the hotest things going right now in the US as it is one pill once a day which has Efarirenz+Tenofovir+emtricitabine all combined. If you can handle the Sustiva portion of the med, its a good choice....

I am currently on Kaletra/Truvada and have been doing quite nicely. This is really a discussion between you and your doctor based on the pheno/geno type resistance factors. If you have not had this test done, insist on it prior to going on any meds hands down!

As for saving PI's for later ext.. That is old thinking and really is of no value. It is what works best for your system and what you can tollerate... I have been on meds for two years, <50 vl and ever increasing cd4 count. I hold down to very high profile jobs and work just as much as I did prior to diagnosis... As for an extra occasional trip to the potty would be the only thing that I would say bothers me.... However, others sometimes have to try different combo's that they can tollerate.... The drug discovery pipline is full... There will be something better released every couple of years. Do not worry about running out of options as you have been diagnosed in 2007..

Let us know about the questions I asked you....

Eric

Post Extras: Remind Me!   Notify Moderator  
Florida69
Legend

Reged: 02/19/07
Posts: 541
Re: New to all this... from England new
      #233464 - 11/08/07 09:40 PM

I am on the Epzicom Sustiva combo, and my triglicerides run high like around 340.... I do excercise... If that is any help, I do understand that the truvada and sustiva is offered in a one a day pill called atripla.. Glad you found your way to this forum, hope to hear more from you.. D

Post Extras: Remind Me!   Notify Moderator  
vokz
Grand Master

Reged: 09/06/07
Posts: 164
Loc: London, UK
Re: New to all this... from England new
      #233486 - 11/09/07 01:08 PM

Hi Gary,

The first thing I am going to suggest is that you make your way to http://www.i-base.info/guides/ - because there you will find some really excellent UK specific guides to starting combination therapy and dealing with side effects and switching treatments.

The second thing I am going to say is that if I contradict some of the things that others have said, it doesn’t necessarily mean that they are wrong – or that I am right – but a lot of this is just opinion based on preferences, rather than what is known to be right and wrong.

The other thing that will cause me to differ is that I speak from the point of view of UK treatment guidelines, which do differ quite dramatically from US guidelines in certain areas .. and the first of those that you will notice is that no-one here in the UK really pays any attention to CD4 percentages until you are on treatment and trying to monitor the effectiveness of that treatment (and even then it doesn’t get anywhere near the attention it does in the US .. but it is still monitored, so if your doctor doesn’t tell you what it is, and you want to know what it is, just ask). It doesn’t make one approach right or wrong - it is just a case of different priorities.

Several people have mentioned Atripla. This IS NOT an option for you, because the European licence for that medication is MUCH stricter than the US licence. You will therefore only ever be offered Atripla as a treatment choice when you have an undetectable viral load and are considered stable on treatment (with Sustiva and Truvada). The only reason that should factor for you is if, in six or nine moths time, you think you will find the idea of taking just one single pill a day attractive.

None of the combinations that your doctor has suggested are bad choices. They are all gold standard treatments and the honest truth is that they should all suppress your viral load, should all get your CD4 count climbing and will therefore get the job done.

Ultimately the choice is yours. My advice would be to base your judgments less on what other people say and more on what you and your doctor think will work best for you (for tolerability and adherence).

Some people (myself included) hate PIs .. others love them. Some doctors (including almost all the doctors at my clinic, which is the largest HIV unit in Europe) dislike PIs in first line therapy .. but others swear by them.

Some patients and doctors think that Sustiva is the bastard spawn of the devil that will have you barking at the moon within a week .. but others (myself included, along with almost all the doctors at my clinic) think it is the bee’s knees and beats running to the crapper umpteen times a day (provided you aren’t prone to depression and anxiety).

The important thing to understand is that NONE of us is right – just as none of us are wrong – and it is all about what we feel comfortable with and find an acceptable co-existence with (and the experiences that other people have really don’t help you understand how YOU will cope with any particular combination of drugs, because we all have very different experiences).

Personally, I started treatment with a crashing CD4 count just under 12 months ago. I deliberately chose the one combination that almost all my peers told me not to touch with a bargepole (that combination being Truvada + Sustiva). Within 14 days my CD4 had shot up by 125 and my viral load was undetectable. I no longer have any unpleasant side effects, I have not had a single day off work and my life just goes on as before .. yet I have friends who will tell you that the same drugs made them feel like they were going mad and would never again get a good night’s sleep.

All of that said, it is clear from the three suggestions that your doctor is putting treatment tolerability before treatment cost, so your welfare and giving you gold standard treatment is clearly his / her first consideration .. so if one of those choices is being pushed a little harder than the others, then it may not be a bad plan to be steered by that (because, given the choice between gold standards where you don’t have a strong favourite, there is a lot to be said for going with what your doctor is most experienced and comfortable with when it comes to side effect management).

You will have side effects (especially in the first weeks / months), but a confident doctor who you can trust, and who knows your drugs well, can more often than not help you manage them very efficiently.

Whatever choice you make, it can be changed. Whatever choice you make, it will not be the drugs that you are on for the rest of your life. You are allowed to make a choice that turns out to be wrong for you .. and if it is wrong, speak up, ask for help and get it changed.

Stay strong, educate yourself (without letting it become an obsession), trust your doctor, don’t assume that everything that happens from now onwards happens because you are HIV-positive and try not to let all this shit get the better of you. Succeed in that and you will have a good recipe for dealing with the little tests you will face in the many, mostly healthy, years to come.

Mark


PS: Unless you are a pregnant woman (I don't know any women called Gary), or have serious resistance issues, no doctor in the UK would ever offer you AZT in first line therapy (even if you begged for it), so please discount that well-intentioned suggestion from Eric, because it simply isn’t an option.

PPS: Per UK treatment guidelines, your resistance tests will already have been done as part of the batch of confirmatory tests that your first CD and viral load came from.

Post Extras: Remind Me!   Notify Moderator  
gray
Regular

Reged: 10/10/07
Posts: 37
Re: New to all this... from England new
      #233494 - 11/09/07 05:51 PM

Hi Gary -

I'm pretty new to the forum. I'm not on medication so I can't offer you any advice in that regard. I just wanted to say hello and welcome. You've found a great group of people - helpful, knowledgeable, kind and loving. We're glad you're here. Good luck with the option you choose and let us know how you are doing, ok?

Gray.

Post Extras: Remind Me!   Notify Moderator  
Jeeves01
Newbie

Reged: 11/08/07
Posts: 2
Re: New to all this... from England new
      #233509 - 11/10/07 01:22 AM

Hi Mark.

Many thanks for your response, particularly the i-base website, which I found extremely useful.

As regards you being registered with the largest HIV clinic in Europe, I hope you don't mind me asking, but is it the Chelsea and Westminster hopsital in London?

I am am currently using the services of my local clinic, but don't live too far from London, and am thinking of switching to the C & W hospital.

Thanks again,

Gary.

Post Extras: Remind Me!   Notify Moderator  
vokz
Grand Master

Reged: 09/06/07
Posts: 164
Loc: London, UK
Re: New to all this... from England new
      #233511 - 11/10/07 08:16 AM

Gary,

Yes, I am with C&W’s Victoria Clinic in Vincent Square (rather than the Kobler Clinic at the Hospital itself .. because, being only 5 minutes from Victoria Station it is easier to get to by bus, train or tube). I would thoroughly recommend them if you choose to go with a Sustiva regimen, but there are other London clinics (like St Mary’s / Imperial) that you may find more appropriate if you decide to go with a PI based regimen (although C&W are more than happy to support them too).

If it doesn’t involve too much travel for you, then I really would suggest you go to C&W (or one of the other large Central London clinics), because the doctors at them deal exclusively with HIV and have the support of a much wider range of services than you will find at local GUM clinics.

I particularly like C&W because they have more than 5000 HIV patients, so they can specialise in a way that simply isn’t possible elsewhere, they are really friendly and responsive, no-one rushes you, nothing is too much effort, they have telephone clinics, oodles of palliative care options (including acupuncture, massage, aromatherapy, dieticians, sex & ed counsellors etc), I get my drugs delivered to my door, I have the security of 24*365 telephone access to my records when I am travelling, a dedicated HIV ward, routine appointments outside of normal working / office hours to minimise disruption to my life and, best of all, my beloved Option E (which means I get my results by e-mail and only need to see the doctor once a year, unless I want to see her more often) .. but there are others who find that sort of industrial specialisation quite off-putting.

At the end of the day, it is personal choice; but, if you want a centre-of-excellence standard of care that is envied and held up as an example throughout the world, then there is nowhere better to go (which is why the International AIDS Vaccine Initiative located its core laboratory there and why you get people travelling from all corners of the country to get their routine care there).


Post Extras: Remind Me!   Notify Moderator  
hrdrsr
Regular

Reged: 11/03/07
Posts: 48
Loc: Colorado
Re: New to all this... from England new
      #233513 - 11/10/07 08:53 AM

Hello, I jsut wanted to welcome you here I am not on meds as of this time I just found out last month.

But welcome and there is a lot of good support on this forum.

Post Extras: Remind Me!   Notify Moderator  
iamfortunate
Newbie

Reged: 10/10/07
Posts: 9
Loc: SouthWest Florida
Re: New to all this... from England new
      #233549 - 11/13/07 02:41 PM

Hey there gary,

My name is gary also. You have some really good questions. And i am glad to see that you are taking this best foot forward. Don't worry if a medicine is possibly better at stoping mutation or resistance. TAke what improves your numbers and stick with it. I have been undectable for five years. I take reyataz and epzicom. Only 3 little pills a day.

Sounds like you have a good doctor....

Post Extras: Remind Me!   Notify Moderator  
Pages: 1


What's New at TheBody.com

Additional Information
0 registered and 1 anonymous users are browsing this forum.

Moderator:  TheBody, bogart, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 7486

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threads™ 6.2.3