Main Forums > I Just Tested Poz

Another newbie

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Ann:

--- Quote from: intheusa on September 26, 2012, 09:15:39 PM ---
On your first western blot,  did any of the markers come up?  If so which ones .    Need help understand how  this test missed all the markers.  I figured afew might pop up. 


--- End quote ---


--- Quote from: jkinatl2 on September 27, 2012, 12:40:09 AM ---
Are you HIV positive, intheusa? YOu have posted three questions, and they seem to be centered on testing. You surely know that only HIV positive people are allowed to post anywhere besides "Am I Infected," "Someone I Care About Has HIV," and "Off Topic."


--- End quote ---

intheusa, I also want an answer to Jonathan's question. If you have not been confirmed as hiv positive, you should be asking these questions about testing in the Am I Infected? forum ONLY.

If I do not receive a reply either here or in a PM (I'd rather the PM instead of further hijacking this thread), I will assume you are not positive and will prevent you from posting in forums where you are not permitted to post.

Please consider yourself warned!

Ann


edited to fix broken link

Ann:
Hi Vertigo, welcome to the forums.

You might want to check out whether or not the individual components of Complera (rilpivirine + tenofovir + emtricitabine) are available on your list of allowed meds.

Tenofovir (aka Viread) and emtricitabine (aka Emtriva) are the two meds found in Truvada, and Truvada might be on your list.

Rilpivirine is marketed under the brand name of Edurant.

Having to take the individual components of Complera may mean more pills, but otherwise it's the same. If and when Complera becomes available on your list, you can then switch to the one-pill option.

You can read about the various meds in our Treatments pages.

Also, have you found the Lessons yet? I'd highly recommend you read through them. They're written in plain English and easy to digest and understand.

Ann

vertigo:
JK, good advice on keeping an open mind.  I've had to remind myself of that as I read about this stuff.  I'm sure if my doc eventually said he wanted me on a norvir-boosted PI, that I would go along and it would be fine.

That said, I still won't chance it with Atripla.  No, I don't have an existing mental health issue, but I do have a safety-sensitive job that requires me to work both days and nights.  So I can't just take it in the evening and sleep off the weirdness.  Some weeks I'm on-call 24/7.  So if I get called at 2am I have to be lucid, and not dizzy or in a fog.  Oh, and I also get drug tested, and understand that Sustiva can cause you to blow a test for marijuana.  Now THAT would be a conversation with my employer that I don't want to have.  So while I recognize that it has great clinical effectiveness, I'm going to take a pass based on the widely-reported CNS issues.

Ann, thanks for the welcome!  I've read some of the sections you suggest, but need to keep educating myself.  And good point regarding looking for the component drugs on my insurer's preferred list.

mecch:
Here in Switzerland, sometimes the newest drugs are not on the "preferred" list for initial, first, treatment, and the doctor has to make the case that it is nevertheless necessary.  When Isentress was first approved for any use, it was not on a lot of lists for 1st treatment.  But then I think it became official that it was acceptable.  Anyway this is Swiss.  Anyway I was cycled eventually onto Isentress and then the insurance couldn't say anything.
Find an ASO and hopefully a person who will sit down and look at YOUR insurance and help you plan for what to do when its time.  Ahead of time, as others have said. And don't assume that what doesn't work for one person, doesn't work for you. 
The price of all these drugs is SHOCKING. SHOCKING!  Its important never to take this emotionally. You have nothing to do with the price of drugs and should never feel guilty about the cost. Not that you said that is a risk - guilt - but just in case.  It IS something that hits many newly diagnosed people pretty hard.  Holy shit!  This is an expensive disease! 

(A little anecdote. I had been on HAART for a couple of years.  In Switzerland, you can buy a coffee at the station or pay for a burger at McDo with a 1000 franc bill and people wont batt an eyelash. Yes, that's about 1000 US dollars.  So when I picked up my first 3 months of Isentress, the pharmacist remarked on how expensive it was! I was surprised that she would express that.  Never said it about the other regimes... Yep, its that shocking!  If anyone ever gives you shade on "how much you are costing", pay no attention.)

Also there is the irony of that living with HIV is so manageable these days, especially for people like you.  But manageability depends on the ability to finance treatment. 

So, really, thats a big challenge going forward. The most important, in some ways.   Will it be Affordable Care that finally gives solutions for you.  Or ADAP.  Or making do with whatever insurance you have and taking advantage of co-pay coverage that the drug makers themselves offer.  There are anxiety creating challenges so find someone in the know to start walking you through it.
 

vertigo:
Well, you've started me thinking about looking for an ASO.  I know there are a few around.  Could be helpful to be talking to someone other than my doctor, particularly about the insurance/payment issues.

Treatment costs are crazy high, no doubt about it.  But a huge, huge saving grace this summer when the Supreme Court upheld the Affordable Care Act (Obamacare).  Prior to that my insurance had a lifetime cap of $50K on STD treatments.  Now the cap is gone.  So that's just a massive relief right there.  Thank you John Roberts!

Interesting you bring up the guilt issue.  About a month into all this I resolved to stop beating myself up over it.  Turns out I'm just another flawed human on a planet full of them.  So am feeling fairly unemotional about it all at the moment.  Really just another problem to be managed.  (Caveat -- this could change if my health declines.)

Thanks for writing. 

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