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Meds, Mind, Body & Benefits => Insurance, Benefits Programs & HIV => Topic started by: JustinV on September 15, 2011, 03:15:10 am

Title: Well my UI was rejected, and am stopping my Atripla.
Post by: JustinV on September 15, 2011, 03:15:10 am
I have contacted my local recourse center for getting local insurance, however.... I will not be able to afford Atripla between now and the appointment.  I think I will be fine, and I guess worst case I will have to go on another med. 
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: mecch on September 15, 2011, 06:09:41 am
Hello. I read your four post so far.
How many pills do you have now.  When is your appt with the "local center".  What kind of center is this?
Is there a place where you can walk in, with your body, and with utmost politeness, explain that you have x number of pills?

You need to know this - there is a way to stop Atripla - and cold turkey is not the way.  You need a doctor to explain how and you may need a few pills that are NOT atripla.  I can understand telling you this puts further anxiety on the sitution.  BUT YOU NEED TO KNOW.

ALSO, you need to tell either a hospital or the local social services that you DO NOT HAVE money for your HART treatment and you need help immediately with one option or the other - 1) they help you find atripla to cover the emergency until your funding gets figured out.
or
2) they help you quit atripla CORRECTLY.

This information cannot be digested over the phone and especially not with a receptionist who is just taking appointments.  You need to speak, in person, face to face, to a person who will understand the emergency, and who can either help you, or find the person who can help you, now.

Someone with 190 CD4s does not stop HAART.  You bring a copy of your labs with you.  It really is an emergency, so if all else fails, you go to the emergency room with a copy of your labs.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: JustinV on September 16, 2011, 02:10:45 am
I have 2 pills left, and I have been splitting them... and skipping a few days between.  I know the risk... have been told it can go one or two ways not matter what.  Sucks, but in nevada, I have to wait for an appointment.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: Tim Horn on September 16, 2011, 08:13:32 pm
Ugh.

Justin, not to be discouraging, but you're really putting yourself at risk for drug resistance (and you're not doing your immune system any good, which was looking quite precarious at the time you started treatment). Splitting pills? Skipping a few days in between? You only have two pills left? I thought you said in this thread (http://forums.poz.com/index.php?topic=39682.msg495260#msg495260) that you had another month of tablets available?

First off, splitting Atripla basically destroys the integrity of the tablet -- It needs to be taken whole to get past the stomach and into the intestine. Second, yes, missing a dose of Atripla every now and then isn't usually a problem... but putting yourself on this weird three-times-weekly dosing schedule using half tablets? That's just... nuts.

You really shouldn't simply quit taking Atripla. The reason being that the efavirenz in the drug lingers in the body for one to two weeks after Atripla is stopped, whereas the tenofivir and emtricitabine pretty much runs its course in 24 to 48 hours. When stopping (as opposed to immediately switching to a new regimen) is absolutely necessary, the usual process is to switch from Atripla to Truvada (which contains tenofovir and emtricitabine alone) and continue taking that for a week or two in order to phase all drugs out of the body at the same time.

In effect, you're going to be on efavirenz monotherapy once you stop your Atripla, which puts you at a significant risk of developing resistance to the drug. And with all this half-tablet, few-days-of-skipped-doses stuff, you're also putting yourself at risk for resistance to the tenofovir and/or the emtricitabine. And I assure you... if you end up with multiple-class resistance, you're potentially shooting yourself in the foot.

When is your appointment? Do you have a doctor in Nevada? Did you contact any of the programs linked by Newt in the thread linked above? Personally, I'd be doing everything possible to secure a course of emergency treatment until you're able to square away your benefits. If your doctor can't help, I implore you to call Aid fro AIDS Nevada (702-384-9101) to find out about access to any meds or immediate care.

And I'm going out on a limb here -- but I'd much rather see you stop the Atripla immediately than continue taking Atripla at this really weird dosing schedule and then stop taking it completely. If all else fails, Justin, it's potentially the lesser of two evils. And please... make sure your doctor knows you're not on Bactrim while you're going through this weird HIV treatment gray area... PCP is the last thing you need.

Tim Horn
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: JustinV on September 18, 2011, 01:54:53 am
I go to my appointment on monday, and yes, I am aware of what has happened, but I can only do what I can do.  I am new to all this and the options are to stop or to ween myself off... from everything that I have read, it is better to ween myself.  My doctor has also agreed, and just wants me to get back on track asap. 
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: Hellraiser on September 18, 2011, 01:56:54 am
I go to my appointment on monday, and yes, I am aware of what has happened, but I can only do what I can do.  I am new to all this and the options are to stop or to ween myself off... from everything that I have read, it is better to ween myself.  My doctor has also agreed, and just wants me to get back on track asap. 

By "ween yourself off" do you mean taking half doses of broken tablets?  If that is what you mean then it's actually worse for you to ween yourself off than to stop completely.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: mecch on September 18, 2011, 06:36:19 am
You didn't understand the posts in this thread.  You also misunderstood your doctor.

I get a feeling of stubbornness in your responses.  
You want to do what you want.  And will interpret information the way you want.    Is this possible?  

No doctor told you to split atriplas and take them every couple of days.

Also seem to be suggesting you doctor just wants you to get back on track, as if it is casual. No doctor is going to be content with a HIV+ patient who presents with a destroyed immune system, goes on HAART, becomes undetectable, but is still only at 190 cd4.   Goes off Bactrim because "i never get sick" and does some crazy "ween" off HAART because he can't afford it.

So for this "My doctor has also agreed, and just wants me to get back on track asap" I am calling bullshit.

We all can understand that having HIV and having no money is a double whammy but you have got to plan on being more proactive and aggressive in protecting your health if you want to have a healthy life in front of you, not suffering and death.    Willful misunderstanding is a sort of denial or if it isn't that, it is a sort of fatalism.  

On the other hand you do also have a cheery "I'll be ok" and worse comes to worse "just another med" and "i never get sick" -  an upbeat attitude.  Well this is good.  But you are at risk for horrible illnesses associated with a weak immune system.  And then of course death.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: leatherman on September 18, 2011, 11:07:57 am
you have got to plan on being more proactive and aggressive in protecting your health if you want to have a healthy life in front of you, not suffering and death.
excellent advice. Justin, you'll really need to keep on top of your health and on top of the HIV. You should have started trying to contact your doctor, ASO, etc sooner so you didn't get this close to be out of medications. Also, appt aside, I'm sure if you would have told either your doctor or an ASO that you were ingthis close to running out of medications, they might have been able to provide you with a temporary amount to tide you over. "Weaning" off a medication (without taking another medication) is the improper way to stop a HARRT medication and is the exact route by which resistance to a medication is created.

In the future if something like this was to happen again, you would need to take mecch's advice and be more proactice and aggressive in telling your doctor and ASO about how desperate your medication situation is. You only have one life, and HIV could very well be the end of it. It's your health and your life and you need to guard them as the most precious things that it are.

I hope that you can get your situation worked out as quickly as possible and get back onto your full regimen as soon as possible. Of course, you should probably not wait too long between your next few blood draws so that if resistance has happened, you and your doctor will know in time to change you to another med before you get too sick. Good luck and best wishes.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: Ann on September 18, 2011, 11:09:29 am
Justin, if your doctor really did say what you said he said, and if he was really so comfortable with what you're doing as it comes across as, you need to find a new doctor NOW! If what you say is true, he doesn't know what he's doing. You're also going to need a resistance test for Sustiva, and possibly the components of Truvada too.

I hope you can get this all sorted out asap and that no, or very little, damage has been done. I wouldn't hold out any hope for a good result on resistance testing though.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: JustinV on September 19, 2011, 02:26:20 am
Thank you everyone for your advice... I see a new doctor tomorrow.  I like my doctor, he practiced in NYC during the 80's and 90's and has been very helpful.  I have done a lot of research and now am all confused, one of my friends gave me a few pill to last, however... who knows.  I like many of you had quite the supply, but a one month supply is not enough... let me tell you that.  I hopefully will get good new tomorrow... and as far as my doctors appointment I will let you know. 
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: leatherman on September 19, 2011, 10:25:39 am
I like many of you had quite the supply, but a one month supply is not enough... let me tell you that.
I used up my 3-month stockpile in the transition from OH to SC just over two yrs ago now, so I can understand your frustration. Having a stockpile is a great idea for everyone, just in case of an emergency. However, it's never possible to predict how bad your emergency will be. For some it'll never be more than a few days during a hurricane or flood. While for others, after an earthquake, it could be months! Of course, transitioning from state-to-state, job-to-job, social-service-to-social-service, well for those sorts of changes, there's usually just no telling. ::)

I'm glad you have someone that could help you out some. ;) I've got my fingers crossed that you can get this all worked out quickly now so your treatment regimen doesn't get too fubar-ed. Keep us informed. ;)
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: Inchlingblue on September 21, 2011, 01:57:32 pm
I hope Miss P is reading this, given his propensity for telling people that stockpiling more than a month is folly.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: leatherman on September 21, 2011, 02:36:43 pm
Hey Justin!
How did things go at your visit to see the doctor?!? Have you gotten your med issue resolved yet or are you out of meds? Inquiring, and worried, minds want to know.  ;)
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: freaky_dream on September 22, 2011, 05:31:47 am
I hope Miss P is reading this, given his propensity for telling people that stockpiling more than a month is folly.

Huh? Why? I got like a 5 month stock pile in case i get canned from work. I use them up as I go along but I like that extra cushion just in case.
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: Inchlingblue on September 22, 2011, 08:42:24 am
Huh? Why? I got like a 5 month stock pile in case i get canned from work. I use them up as I go along but I like that extra cushion just in case.

I agree. I have about 4 months supply.

I'm just saying that whenever this subject comes up, Miss P chimes in saying that in his opinion having more than one month is a sign of being paranoid, etc. Who knows why he says this?
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: JustinV on September 22, 2011, 08:29:18 pm
To everyone that replied thank you for all the support and concern.  I had my appointment and all went well, but I am off the meds with proper care of my new doctor, and am feeling positive about the outcome.  I have about one week until my meds are covered and after I start taking Atripla again for the next 6 mos. they will be having me do blood work every month to monitor how my body is either rejecting or accepting the pause in my treatment.  My doctor has had patients that went off the med for over 6 months and after 30 days back on, went back to normal or better levels and did not become resistant to the med.  We shall see... I am feeling fine, and happy with how fast this process is going.  I guess all I can say is wish me luck, and hope for the best.  I am feeling good about this!
Title: Re: Well my UI was rejected, and am stopping my Atripla.
Post by: leatherman on September 22, 2011, 09:26:29 pm
all I can say is wish me luck, and hope for the best.
Glad to hear things went well at the doctor's and glad to hear you'll be getting back on the meds.
Good luck and best wishes (that you won't encounter any more problems - lack of meds or resistance)  ;)