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Author Topic: Anxiety about adherence  (Read 906 times)

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Offline Baxter

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Anxiety about adherence
« on: May 16, 2018, 04:21:47 pm »
Recently (three months ago) diagnosed as HIV+ during a three week hospital stay for pneumocystis pneumonia. When I was diagnosed, the virus already had a drug resistance mutation--likely because someone somewhere along the line didn't adhere to their medication schedule (as I understand the explanation I was given). I am now just short of constantly catastrophizing that if I miss a dose of my med that the virus in me will develop another resistance, etc, etc--I'm sure you can all see where this goes. It all feels a little (maybe a lot, IDK) irrational, but the doctors have HAMMERED me with adherence. I imagine I'll get over it, but in the mean time, I'd appreciate any thoughts or support--even if I can just laugh about it a little to ease the stress. At the least, it would be nice to know if anyone else dealt with this particular worry so I don't feel so weird about it.  :)

Online JimDublin

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Re: Anxiety about adherence
« Reply #1 on: May 16, 2018, 05:16:31 pm »
Welcome to the forum, sorry to hear about the diagnosis.

Doctors are suppose to hammer the message in i suppose, but it should not be to the point you have anxiety over it.

Quote
I imagine I'll get over it

I would say so, prehaps having a pill box will give you some peace of mind as you will be able to visually check if you need that reassurance that you took the meds that day?

What meds are you on BTW and how is the VL doing?

Take it easy

Jim
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Offline CaveyUK

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Re: Anxiety about adherence
« Reply #2 on: May 16, 2018, 06:47:33 pm »
Adherence IS vitally important, however this is often over-egged by doctors for good reason.

The reality is that most modern drug combo's have a decent enough half-life to mean that *very occasional* missed doses are unlikely to lead to resistance problems. I stress the very occasional bit really, as you still need to be taking them every day - it's just the occasional missed dose won't likely be a problem.

It's like timing. Once a day at the same time, is the mantra - but once stable on the meds, a little latitude exists around timing too. I frequently take a few hours late, or a little early, depending on what I'm doing.

The reasons docs are right to hammer home the adherence thing, is that if they didn't then some people would take this as meaning they could have patchy adherence, or take breaks without consequence. It's easier to insist on 100% adherence, knowing that in reality 98% adherence will be fine, than suggest anything different.

Now there are differences in resistance profiles between different drug combos though. Some drugs are very good in this respect, others can be more sensitive to missed doses, which is why it would be good to know what combo you are on.

It's also a really good idea in the early months to ensure you are absolutely 100% adherent, even down to taking them the same time. This is partly because you want to ensure you get and stay UD with a constant level of the drug in your system, but also because it helps instil the habit of taking them each day.

At the end of the day though, it's really nothing to stress about. Lets say you brush your teeth every night before bed. You do that on auto-pilot right? Whilst you may very occasionally not do it, it's something you are likely to do pretty much every day. Well, view the meds in the same way. We do a huge host of critical things every single day without paying it too much attention - I wear a new pair of underpants each morning, I put on shoes to go outside, I set my alarm each night so I can be up for work etc etc. Just look to treat meds in the same way and you won't go far wrong.

I second Jim's suggestion of a pill box. It's easy to track whether you have taken your pills or not (and believe me, I sometimes question myself an hour after I HAVE taken them, so it's good to be able to check). It's also a good idea to buy a little pill-holder keychain so if you are out and about and forgot to bring your pills you have an emergency supply.
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Offline Baxter

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Re: Anxiety about adherence
« Reply #3 on: May 16, 2018, 07:02:45 pm »
Thanks much for the replies.

I'm less worried about me forgetting to take a pill than I am about actually accessing my meds on a timely basis from the pharmacy. I'm working to find a specialty pharmacy nearby (made some real progress on that this afternoon), but in the meantime my meds are shipped to me and the pharmacy itself is a 2.5 hour round trip at the best of times. Insurance won't cover unless you're down to a few pills, then shipping happens on late friday, which means it won't go anywhere until monday, which means it's wednesday till you have pills and you took your last pill on monday. So you miss a day if it works out it your favor, more if it doesn't.

If I could get a backup stash of like 10 pills, I could get rid of this anxiety for the next year. But again, I made some progress this afternoon and hopefully it will turn out. But in my short time with this I'm already worrying about the pharmacy not getting it out on time (like has already happened with my bactrim) or the doctor's office taking two days to approve the refill (like has already happened with my prilosec) and there's just endless ways that life gets delayed even when you don't have HIV.

None of it's a real worry till you miss a dose for HIV that's already drug resistant. Haven't missed a dose yet, don't plan to, but that's where the catastrophizing comes in....I recognize there's some irrational fear here. But I also know enough to expect that I'm going to miss a dose at some point and it's not going to be my fault. Even the most efficient doctor's offices and detail oriented pharmacies are subject to uncontrollable mayhem. (unplug your computer. wait 15 seconds. plug your computer in again.) At 53 years old, you can't sit down to have a beer at a BBQ without hearing a story about doctors/insurance/pharmacies.

Currently on Genvoya daily, Septra DS daily, Azithromycin (mega dose once a week). Started on meds Feb 16, 2018. As of last month results, my VL is 32 (very encouraging) and my CD4 is 54 (I'm also very happy with this because I'm up 20 points since Feb. !!!!  YAY).

You guys are awesome. I feel like I'm coming off as resistant. I think maybe I'm just scared. Guess I need to deal with that too. 





 

   

Online JimDublin

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Re: Anxiety about adherence
« Reply #4 on: May 16, 2018, 07:36:52 pm »
Just heading to bed for a 4.5 hour sleep  :-\

Had to quickly comment though...

Quote
If I could get a backup stash of like 10 pills, I could get rid of this anxiety for the next year.

You will learn the system and build up a 10 day stash, I am sure others using a similar system as you will come along and post some tips.

Quote
None of it's a real worry till you miss a dose for HIV that's already drug resistant. Haven't missed a dose yet, don't plan to, but that's where the catastrophizing comes in

Aim for 100% adherence sure, two things i guarantee you will happen.

1 - You will someday miss a dose, its called life. Shit happens.
2 - That single missed dose in the blue moon will not be the end of the world, drug resistance or not.

So do keep aiming for 100% but stop stressing about it, if you keep stressing about stuff the missed pill is not going to be the concern but the stress will be  ;) I heard that stress is bad for people. ;D

Someone smart will be along I am sure and comment to explain that 95% is considered adherent meaning if x pills was missed over x time you would still be adherent. I'm too tired for that.

Quote
Even the most efficient doctor's offices and detail oriented pharmacies are subject to uncontrollable mayhem.

You will learn to manage the doctor and speed things along without pushing it. Give it time. My own example, different system but my clinc is packed and people waiting 4-5 hours on a scheduled visit, I'm in and out in 45 min. Different system, same thing you will learn ways to move and motivate things along.

Take it easy

Jim

http://www.aidsmap.com/Adherence-of-80-95-not-good-enough-for-long-term-treatment-success-in-British-Columbia-HIV-patients/page/1432764/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3632027/
Acquired immune deficiency syndrome (AIDS) is now considered as a manageable chronic illness. There has been a dramatic reduction in human immunodeficiency virus (HIV) related morbidity and mortality due to antiretroviral therapy. A high level of adherence (>95%) is required for antiretroviral therapy to be effective. There are many barriers to adherence in both developed and developing countries.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4839839/
Irrespective of the cut-off point for optimal adherence, our findings support the tenet that optimal adherence to ART is associated with positive clinical outcomes. The threshold for optimal adherence to achieve better virologic outcomes appears to be wider than the commonly used cut-off point (≥95% adherence). Though patients taking ART should be instructed to attain ≥95% adherence, apprehensions of slightly lower adherence should not deter prescribing ART regimens at an early stage of HIV infection. 

PS.
Work up and had to edit the post...

« Last Edit: May 16, 2018, 08:42:18 pm by JimDublin »
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Offline leatherman

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Re: Anxiety about adherence
« Reply #5 on: May 16, 2018, 08:40:17 pm »
good news! (but don't let it go to your head!)
While you should always shoot for 100% adherence, if you are at least 95% adherent then you'll be doing fine.

to try to always keep to 100%, without missing the once-in-a-full-blue-moon dose, use pill boxes and a pill holder key fob (for when you're not at home at med time)


LOL Jim. I didn't notice you wrote out a much longer response; but at least we both said 95% and "blue moon" ROFLMAO
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

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Online JimDublin

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Re: Anxiety about adherence
« Reply #6 on: May 17, 2018, 02:06:13 pm »
LOL Jim. I didn't notice you wrote out a much longer response; but at least we both said 95% and "blue moon" ROFLMAO

 ;D

@OP I hope the members feedback helps calm the anxiety somewhat

Jim
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Offline Baxter

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Re: Anxiety about adherence
« Reply #7 on: May 18, 2018, 09:24:11 am »
Yes, getting feedback helps. Due to location and transportation issues I haven't been able to access any support group type services, so any feedback here is great. After a certain point, no amount of reading articles is a substitute for the feeling that someone, somewhere out there "heard" you.

I am curious about the "tips" you mentioned on building a small emergency back-up stash of med. But I do take your point that constantly stressing over the possibility of missing a dose is probably worse for me in the long run than actually missing a dose once in a blue moon. Also, it looks like I'll be able to access meds locally (less than half the round trip time of current pharmacy) and cut out the delivery middle man between me and the pharmacy. Having the control to go in and pick up my meds in person any time seven days a week really reduces my anxiety. Now, and especially since it's mid-May, I can worry about other things like running out of med in the middle of a snowstorm and not being able to get out to a main road, LOL.  ::)

I've started taking purposeful daily mindfulness walks and they are a nice break. It stops the cycle of worrying about the diagnosis, the meds, the future, all that stuff. I'm sure it will get easier once all the newness wears off.

Online JimDublin

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Re: Anxiety about adherence
« Reply #8 on: May 18, 2018, 11:53:01 am »
Well glad to hear about the walks helping with the anxiety levels, a healthy coping strategy and outlet is good.

Also sounds like great progress on getting the meds from closer to home, sounds like your mKing progress.

As for tge stach well you already started treatment so can't build it up before starting or stop. Check it out again as if you could get your repeat script filed even 1-day earlier than needed over time you could built up a few days worth that way

Jim

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