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Author Topic: I could be starting haart in the new year.  (Read 1806 times)

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Offline Denvaux

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I could be starting haart in the new year.
« on: December 27, 2010, 12:32:39 PM »
My numbers have been pretty constant over the almost five years that I have known that I am positive. Sometimes above 500 and never below 400 as far as I can recall. This numbers factor has always been my measuring stick as I had no desire to start treatment untill my cd4 fell constantly below 300. My regular doctor has always said that I am fine and a long way off treatment, however, on my last visit to the clinic I had to see an unfamiliar doctor as my regular was all booked up.
The doctor said that he had concern with the declining performance of my kidneys (something never mention previously) and on taking my blood pressure (very high) and performing an electrocardiogram he has confirmed that he is very concerned with the struggling performance of my heart. Now this is all scary stuff - I've been put on tablets for my high BP but he also thinks I may have to start heart soon too. Apparently my immune system is attacking my kidneys and that this is not un common. I have also been refered to a cardiologist
My concern is that I am not ready to start haart and I was wondering is there another way of "turning off" or slowing down my immune system so to speak to stop this attack on my kidnys? I do recall that there was a drug trial recently on such a medication that did exactly this for exactly the reason I state here. I was actually going to participate in the trial but thought it pointless if I had to take a placebo and not the real thing.
« Last Edit: December 27, 2010, 12:36:53 PM by Denvaux »

Offline buginme2

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Re: I could be starting haart in the new year.
« Reply #1 on: December 27, 2010, 01:01:32 PM »
[
My concern is that I am not ready to start haart]

Why?  Why are you so determined not to start treatment?
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Denvaux

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Re: I could be starting haart in the new year.
« Reply #2 on: December 27, 2010, 01:18:08 PM »
Side effects mostly especially lipodystrophy but also the fact that it's a big commitment taking so many pills at a set time every day. Some docs advice starting as soon as you get a positive result - infact the doctor that i am dealing with just now had previously adviced me to start haart some 18 months ago on our first meeting - for no other reason than - YOU MIGHT AS WELL?

Offline buginme2

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Re: I could be starting haart in the new year.
« Reply #3 on: December 27, 2010, 01:21:47 PM »
lipodystrrophy is mostly a side effect with older protease inhibitors.  And taking "so many pills?"  I take one pill once a day. 
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Denvaux

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Re: I could be starting haart in the new year.
« Reply #4 on: December 27, 2010, 01:25:25 PM »
One pill once a day would be good but I don't think Atripla is used for those of us starting out on haart in the UK - I could be wrong on that but I believe I read as much somewhere.

Offline buginme2

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Re: I could be starting haart in the new year.
« Reply #5 on: December 27, 2010, 01:27:43 PM »
I would check on that.  I'm sure there are others on here from the UK that could give some advice on that.  I do know that Atripla was approved in the UK at about the same time as it was approved in the US.

I wouldnt not start treatment because of fear about side effects.  The alternative to some side effects sucks
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Denvaux

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Re: I could be starting haart in the new year.
« Reply #6 on: December 27, 2010, 01:34:47 PM »
My cd4 is almost normal - this is getting more complicated. If my defenses are mistakenly attacking my organs surely the issue is there with the defense mechanism? That atleast is the line I intend to take when I get back to the clinic in the new year.

Offline Matty the Damned

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Re: I could be starting haart in the new year.
« Reply #7 on: December 27, 2010, 02:16:19 PM »
Some thoughts.

Lipodystrophy/atrophy is associated with some of the older PIs, but is more likely to be caused by drugs like d4T (stavudine) These drugs are not commonly used in this shiny day and age.

Your kidney and cardiovascular problems do raise treatment issues, but not insurmountable ones. Your prescriber may want to avoid things like tenofovir (bad for kidneys) and abacavir (heart issues) but there are numerous other options.

Generally speaking, HAART is recommended when people drop below 350 CD4 cells but many doctors like to start above that level, ie when CD4s drop below 500.

Ultimately it's your choice, one that should be informed by your doctor's expert advice. The AIDSmeds medication Lessons are helpful.

MtD

Offline Ann

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Re: I could be starting haart in the new year.
« Reply #8 on: December 27, 2010, 02:32:41 PM »
Atripla is available in some NHS Trusts. It is available in its component ingredients (Sustiva and Truvada) everywhere in the UK. It is still a once-a-day dosing when taken as Sustiva and Truvada.

I also go to a clinic where I sometimes see doctors other than my main one. I will always consult with him first before making any major changes, rather than going by what someone I don't know very well says. If I were you, I'd request an appointment with my regular doctor to discuss some of the things this other doctor brought up, before making any decisions.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline buginme2

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Re: I could be starting haart in the new year.
« Reply #9 on: December 27, 2010, 02:41:58 PM »
Sorry to go off topic here.  Ann, Why is it that the NHS will approve truvada/sustiva but not as Atripla?  It seems it would be less expensive as Atripla than its seperate components.  At least here it is less expensive for me as Atripla as I only have one copay instead of two.  Just curious.

Also, as far as Denvaux concern that his immune system is attacking his own body.  HIV can and does cause inflammation which does damage in the body.  By treating the HIV you can reduce this inflammation and therefore reduce the damage done to your kidneys and heart.  I wouldnt want to try "tuning off your immune system." 
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Ann

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Re: I could be starting haart in the new year.
« Reply #10 on: December 27, 2010, 02:51:07 PM »
Atripla IS approved by the NHS, it just isn't necessarily available everywhere in the country.

When Atripla first came out it was more expensive - if I remember correctly it was something to do the fact that it was a collaboration between two companies. The Truvada component is made by Gilead Sciences, the Sustiva component is made by Bristol-Myers Squibb and Atripla is made by Bristol-Myers Squibb and Gilead Sciences.

I think most trusts carry Atripla now, but there are likely to be ones who haven't come up-to-date yet.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Matty the Damned

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Re: I could be starting haart in the new year.
« Reply #11 on: December 27, 2010, 03:00:01 PM »
Also, as far as Denvaux concern that his immune system is attacking his own body.  HIV can and does cause inflammation which does damage in the body.  By treating the HIV you can reduce this inflammation and therefore reduce the damage done to your kidneys and heart.  I wouldnt want to try "tuning off your immune system." 

It is true that HIV can lead to autoimmune problems, ie one's immune system attacking one's organs and the like. Why this happens isn't clear. I experienced this some years ago when I developed Henoch-Schoenlein's Purpura.

Most unpleasant. Especially for my kidneys. How was this condition treated? With massive doses of prednisolone which (temporarily) shutdown what remained of my already crippled immune system.

Not an ideal situation but the immunologist who treated me felt such a course of action was appropriate.

MtD

Offline Zohar

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Re: I could be starting haart in the new year.
« Reply #12 on: December 27, 2010, 06:17:22 PM »
One pill once a day would be good but I don't think Atripla is used for those of us starting out on haart in the UK - I could be wrong on that but I believe I read as much somewhere.

Proceed with caution if you're offered Atripla, or a Sustiva-containing combination, as the central nervous system side effects, if they happen to you, are not pleasant. If you've had any mental health issues/depression, then this might not be the drug for you.
''Poor is the man whose pleasures depend on the permission of another.''

 


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