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Author Topic: Building up a reserve  (Read 941 times)

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Offline gadawg1979

  • Member
  • Posts: 142
Building up a reserve
« on: September 19, 2012, 02:16:37 AM »
I know that this will cause a stir but I have reached Undetectable and I was wondering if any of you have skipped one dose a week to build up a reserve.  I ask this because I am on ADAP and refills sometimes take forever and I would feel better if I had a few pills extra here to have just in case.  I have been on Complera for 5 months and NEVER missed a dose.
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline Ann

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  • It just is, OK?
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Re: Building up a reserve
« Reply #1 on: September 19, 2012, 05:42:30 AM »

On Complera never had the poops... But the farts will peel paint and sleep I have given up on.


Hi Dawg. I've quoted your post above from another thread because that thread was about another combo med and I didn't want to hijack it with talk about Complera.

First, the farts. Some people call them the "Truvada farts" because many people on Truvada also experience the lethal (to others) farts. I'm not sure if it's the tenofovir which is in both Truvada and Complera, or the combination of tenofovir and emtricitabine, both of which are also in both combo meds.

I take my meds around noon (with lunch) and I find the Truvada farts tend to hit around six to eight hours later, occasionally earlier. It seems quite dependent on what I eat. The more meat (particularly dark meat) I eat, the more farts. And forget about foods like broccoli or cabbage - yowza! But I also find that if I have some yogurt during the day, the farts either don't happen, or they aren't nearly as lethal as they are if I don't have yogurt.

I've learned to excuse myself for a minute if I'm in company when I feel an evening Truvada fart coming on. If I'm home alone with the cats, well, I get some dirty looks and my little buddy who normally sits right next to me gets up and leaves. Tough. Who cleans their litter box? ;D

Now, the sleep. Are you aware that one of the components of Complera is from the same class of meds as Sustiva? It seems to me that many people who are on Complera (aka Eviplera) complain about sleep problems and fatigue. To my mind, it's hardly surprising considering Complera is a close cousin (so to speak) of Sustiva, which is absolutely notorious for causing sleep problems in some people.

Have you thought of asking your doctor for a med switch? You can keep the Truvada portion (tenofovir and emtricitabine) and just switch the rilpivirine (aka Edurant - Sustiva's "cousin") out for something else, and yes, there are combos that you can take once a day - they just won't be one pill a day. What's a couple more pills, once a day, if it lets you get some decent sleep? You can read about the various meds by clicking here

Last, but not least, building a stockpile. It's not a good idea to skip doses in order to do this. Either it would take you forever to build up a decent stockpile, or you'd be missing too many doses which would NOT be wise. You don't want to end up with resistance issues.

I found a few threads for you where people have discussed how to build up a stockpile. Basically, the best way to do it is to order your next set of meds at the earliest possible opportunity. Here's the threads I found for your viewing pleasure:

Medication stockpile

Buffer Meds

Frustrated with my pharmacy!

A Worried Catman.

Good luck - with all three issues.
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Offline laxdude01

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  • Posts: 2
Re: Building up a reserve
« Reply #2 on: September 19, 2012, 07:47:57 AM »
I'm not a doctor, but most of the advice I've heard from those in the field has been to avoid missing doses... missing one day while otherwise sticking on schedule may not be too bad, but a stretch of two or more days increases the risk of the virus building resistance to the meds.

The posts the previous person included follow the same advice I've heard as a way to build up a reserve buffer--effectively request your renewals every 25 days instead of every 30.  Depending on the exact days this turns out to be, you can get yourself to a month's reserve in 6-12 months (as I recall, ADAP rules allow 13 fills of a drug a year).

Your profile gives no indication where you live... but if you're in one of the bigger city areas, you should be able to find some help if you've completely run out of your meds.  I'm in Los Angeles and use the Gay and Lesbian Center for both it's medical  and pharmacy services.  Since the start of the year, I haven't even had to request my scripts be refilled... they do so automatically every 4-5 days before the month of the last refill was made, which now has me with about a 6 week reserve.  I believe a service they provide is an "emergency supply" to cover cases like yours.

I'm on ADAP as well.  The Center has taken care of everything since I first signed on with them-- my ADAP coverage was approved and "turned on" 24 hours after I completed the paperwork.  I got a great doctor who gives me 5 refills on each new script--making it easier for the pharmacy to do its automatic refill service each month.  With this kind of service, I've had no need to go anywhere else... but if the pharmacy you're currently using is giving you the poor service you describe, I'd look for an alternative.

 


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