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Author Topic: Managing with Atripla  (Read 3206 times)

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Offline Fareast4116

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Managing with Atripla
« on: October 18, 2020, 06:27:10 am »
Hi again, I have some questions in terms of managing my wellbeing while being on this combo. I've only started a few days and would appreciate if someone more experienced than me can chip in some suggestion.

1. Realised that the medication makes my body temp on average higher than usual. It almost feels like I'm running a mild fever except on thermometer its around 37.1 or 37.2 and sometimes lower. Is this normal?
2. I'm extremely thirsty with this medication and drinking way more than the 2L minimum requirement. Mouth feels dry. My pee is clear and seems normal. Is this again normal?
3. Realised that I'll be sleeping way less now. Is this gonna pose a danger to my heart? I do have higher BP 130/85 and getting less sleep seems to be affecting it for the worst. Any suggestion? I tried sneaking afternoon naps but it gives me palpitation and I'm kinda scared to do it now. On average I'm probably sleeping 5 hrs per night.

Offline bocker3

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Re: Managing with Atripla
« Reply #1 on: October 18, 2020, 11:01:14 am »
I took Atripla (or its componenets) for over 14yrs.  I switched to Dovato last December.

You need to give a little time to settle into your new drugs.  It is important to take it on an empty stomach, to lessen any side effects.  I, too, often felt flush an hour or so after taking it, but it didn't last that long.  My sleep didn't seem to be impacted -- after the initial settling in. 

Now, I know many people who had a much more difficult time with Atripla (specifically, the Sustiva component) and needed to get off of it.  This drug is definitely NOT for everyone.  As you've only been on it for a few days -- give it a few weeks and see how you feel.

BTW -- I switched to Dovato to take fewer meds.  I had been on Atripla and boosted Reyataz (so 5 different meds).  I'm now down to 2.  I didn't notice anything different in my life (sleep, mental health, etc) from stopping the old and starting the new.

Good luck,
Mike

Offline virgo313

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Re: Managing with Atripla
« Reply #2 on: October 18, 2020, 11:23:51 am »
As other has advise, give time to settle down. Also taking vital sign too often is same as googling info which will cause you to overreact. Understand that you are newly Dx. There is no need to check ur vital signs too often. Just be normal & if you feeling “sick” head to your Dr like normal dr visit.

Weather is very warm these two weeks, that could be the reason u r drinking more liquid. Temp of 37 is ok. BP 130 is not high, more so u have “panic feeling” & lack of sleep.

Calm down. U do not want anxiety to control u. Hope u can settle down soon. U need to try to find ways to sleep normal. Overthinking will not help here. Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Fareast4116

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Re: Managing with Atripla
« Reply #3 on: October 18, 2020, 10:50:30 pm »
Thanks Mike, Virgo. I must apologize s most of the time I feel like a 3 year old needing some adults to hold my hands through this lifetime journey and will constantly have doubts and concerns coming up. Sometimes i feel like an infant who wants to share every emotion/thing that i'm feeling and experiencing too. Some days and hours are better than others I'd admit. Thanks for the advise and i'll keep it close to heart and keep reminding myself that. 

Offline Fareast4116

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Re: Managing with Atripla
« Reply #4 on: October 21, 2020, 05:02:51 am »
Just an update. This morning I woke up with moderate rashes and its quiet bad on my face so I went to the hospital. Basically my ID doctor is worried that it might have been a allergic reaction to efavirenz and asked me to halt that med until Friday 8am while I await my blood result to see how bad it is. I also left with some antihistamine to control the symptoms for now. I also asked her about potential resistance towards EFV after I resume back and she assured me that EFV stays in the body for 3 days. I'll continue with my Tenof-em for now.

What worries me is that she has suggested that I consider dolutegravir to replace efavirenz to maintain my once a day dosage should my Friday result show that I'm allergic. But this will start costing me around 120usd/month forever and while I can afford it now, I'm not sure long term. Reading about dolutegravir seems positive but I was hoping the government would cover all the expenses. What do you guys think?

On the plus side I asked if my rashes are KS. She said no without batting an eye or further inspecting my rash so idk.

Offline Jim Allen

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Re: Managing with Atripla
« Reply #5 on: October 21, 2020, 07:20:50 am »
Sorry to hear about the rash, I hate rashes.

From a treatment point of view, this can happen and there are other treatment options.
DTG is a solid drug, it's currently first-line treatment.

I can't comment on the cost though, prehaps someone more local to your area can jump in on that.

Best, Jim

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Offline Fareast4116

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Re: Managing with Atripla
« Reply #6 on: October 21, 2020, 08:34:55 am »
Yeah the rash unfortunately decided to start on my face and work its way downwards and i had a hard time telling/lying to my family what tainted seafood i could've eaten to cause this. As of right now, i'm just afraid to look at the mirror because i know it's still spreading. I'm just hoping the antihistamine is gonna minimize the damage as much as possible.

Through my ID and some quick search, I know EFV is the cause for sure. I'm just hoping i can weather through this seemingly endless side effects. Hopefully my blood test on Friday is relatively positive and i can still be on EFV until the generic DTG is available here. Otherwise i'd need to budget for new meds and add to the already burdenful experience.

Offline virgo313

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Re: Managing with Atripla
« Reply #7 on: October 21, 2020, 08:57:40 am »
A quick question. You are seeing private or government Dr?
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline virgo313

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Re: Managing with Atripla
« Reply #8 on: October 21, 2020, 10:18:22 am »
Here is the guideline for HIV treatment in M’sia (2019)

https://www.moh.gov.my/moh/resources/auto%20download%20images/589d71c4dd799.pdf

1st line is free in govt hospital. Page 13 is all the list of medication.
Page 38 says that suggest NVP could replace EFV. However, Dr should decide for u.

As for cost, if NVP works for you then you could save USD120 per month. I will not be able to decide for you but bear in mind that hiv med is for whole life & the cost will be a lot.

RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Fareast4116

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Re: Managing with Atripla
« Reply #9 on: October 21, 2020, 10:26:45 am »
@virgo313
I'm getting treated with Sg Buloh now. Even my case worker is Jeff in HSB if you know him.

Basically the DTG is something she asked me to consider should i be tested allergic to Efavirenz this Friday. She has other government subsidized combo but those are even more likely to  trigger allergy. I am hoping it's just a drug rash that will go over with time. And i agree, for now the cost is quiet staggering in a long run. Maybe in future when DTG generic is available at fraction of the cost, I might consider but right now it's too expensive.

Offline virgo313

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Re: Managing with Atripla
« Reply #10 on: October 21, 2020, 10:53:24 am »
Just be frank with ur Dr & say you will not be able to fork out money for long term.
I am sure she is aware of this. Suggest to try out other combo first. Also wait for result first, it might not be due to medication & could be allergies from something u eat.

Ur numbers is not low & there is no rush to go for “paid” med when other free combo is available. Just discuss further with them.

Yes, I was wait Sg Buloh & spend lots of nights there. In/out at least 7 times carrying a travel luggage. It my resort back in 2015. Now, I have just “move” to a clinic near my house.

Sg Buloh is out of town. Do you know that you can collect ur monthly meds at a hospital nearest to ur house?
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Fareast4116

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Re: Managing with Atripla
« Reply #11 on: October 21, 2020, 10:58:43 am »
Haha, I'll bring that money issue up again on Friday when i get the results. fingers crossed.

Within this 3 weeks i've been in and out of that hospital so often AS IF there is no Covid and AS IF that place isn't a hub for Covid treatment. Frankly I'd choose to go to the nearest KK if I could but it's still to early for that. Eventually I'll ask to collect my meds somewhere else (because I'm pretty sure I have some doctor friends in Sg Buloh). From my place, the distance to either HSB, Selayang, KK Jinjang, KK Batu and etc is pretty much the same. The deal breaker is probably going to be, which place is least packed.

Happy that there is a fellow experienced Malaysian here like you. Makes navigating through this easier.

Offline virgo313

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Re: Managing with Atripla
« Reply #12 on: October 21, 2020, 11:10:11 am »
Haha... ur in/out compare to mine is slightly different. Mine comes with 3 free meals  ;D
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Fareast4116

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Re: Managing with Atripla
« Reply #13 on: October 21, 2020, 11:19:00 am »
Haha I don't envy that.

In fact my dear ID brought up the topic that they usually wanna Ward me if I have rashes like this to monitor but they are short on beds and staff so I just have to go in a few times and I'm SUPER GLAD. Not only will staying in the hospital affect me mentally but wtf will I tell my family?

Offline MitchMiller

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Re: Managing with Atripla
« Reply #14 on: October 22, 2020, 02:03:54 am »
Atripla contains a 600mg dose of EFV.  The WHO now recommends a 400mg dose.  It works equally as well for me with fewer neurological side effects.  You might want to discuss with your doc.


Offline Fareast4116

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Re: Managing with Atripla
« Reply #15 on: October 22, 2020, 03:12:28 am »
@MitchMiller
Thanks for the advise. I'll bring this up with my ID tomorrow. Will see what she says. When you say lesser side effects, what do you mean by that?

Side note, did you also get rash/drug eruption from EFV?

Offline MitchMiller

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Re: Managing with Atripla
« Reply #16 on: October 22, 2020, 03:38:46 am »
Here's a link to an abstract on the data from the two WHO trials that compared 400mg to 600mg EFV a few year ago.  I switched to 400mg after the 48 week trial results were posted.  I've been taking it since 2002.  If you do some research, you'll find lots of articles on the 400mg dose.  I'm surprised your guidelines still state that a 600mg daily dose of EFV should be prescribed. 

https://pubmed.ncbi.nlm.nih.gov/25877963/

I never had a rash, although I remember reading a few posts here from people that did have a rash.  It typically goes away and you won't have any more problems.

I always had neurological side-effects from the 600mg dose.  It made me sick if I took it on an empty stomach (as it is recommended).  It caused heightened anxiety and that anxiety then caused insomnia.  The first time I took it, it felt like I was standing on a rocking ship and the light was a pale shade of green.  I met a couple people that had hallucinations from it.  The side effects lessened only a small amount for me, while for others, they went away entirely after a few months.  I would also sometimes have instances of "brain freeze".. something like occurs if you panic when you're doing a public speech in front of a lot of people.  I remember multiple times when a retail clerk was asking me for my phone number or address, and it was embarrassing because I couldn't remember them.  My brain froze.  I also had times when I couldn't concentrate or focus.  I had to structure my work, so I did all the "easy" stuff in the morning when my brain was still foggy; leaving the "harder" work for the afternoons and evenings.  I was a computer programmer.  And it sometimes made me "hot" as you stated.  I remember my doc noticing my body was hot to the touch during a morning examination.  I told her it was the EFV.  And when I was really high from the EFV, I also had bouts of irregular heartbeat, has you stated.

With the 400mg dose, I would say those side effects have been reduced by 50%.    That makes sense since the 600mg dose is 50% higher than the 400mg dose.  It still makes me groggy and dizzy if I take it on an empty stomach, but it doesn't make me feel horribly ill, like the 600mg dose would.  I don't have bouts of brain freeze the following day like I used to.  I like taking the 400mg dose with food about 3 hours before I go to bed.  It helps me sleep, especially if I combine it with melatonin.  I retired from working just as I switched doses.  I would have probably worked longer if I had switched sooner.  I had anxiety from work that was elevated by EFV. That anxiety then caused really bad insomnia.  I slept 12 hours/day after I retired for 30 days before I felt caught up on sleep.  Now all is good... and no more hot flashes, but I still have occasional irregular heartbeat, but not anywhere near as frequent as I used to.
« Last Edit: October 22, 2020, 04:09:31 am by MitchMiller »

Offline virgo313

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Re: Managing with Atripla
« Reply #17 on: October 22, 2020, 12:22:25 pm »
Totally agree that 400mg works as well as 600mg. However not all countries have the same “level” of medical care & practice the latest “method”.

Our country (gov) has never brought Atripla. I mean as a single pill for treatment. When generic was brought to treat us, many Dr then were just teens. Local train Dr were thought without knowing the non generic names.  ;D

Here are my experience. Dr asked what med I am taking, I say Atripla. They look dumbfounded. Ok ok... then I hv to say those long... words teno... efav...
Dr asked if I take them on time. When I say +/- 1 hour apart, they say “must take on time. Have u missed a doses? I say once or twice, again that look I get.  ;D
So, now I will reply what they want to hear. Hahaha

So, basically this explains how some country is not as updated as other country. How I wish that we can move at same pace as country like US. Reality is that we will never be able to be the same level. But we are still one of the lucky country that have excess to HIV meds equal living healthy. I envy those taking latest meds but same time glad not in situation like country with no excess to meds.
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000

Offline Fareast4116

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Re: Managing with Atripla
« Reply #18 on: October 22, 2020, 11:29:16 pm »
I do agree we have an antiquated treatment. While it's free and fully accessible, wish they'd update their method a lil bit to be in line with Who recommendation. I also mentioned Atripla and the ID also gave me a dumbfounded look until I mentioned the component. One thing I dislike is that I don't have a dedicated ID and I'm always meeting one of the ID so it's harder to establish a interpersonal dr patient relationship.

A good update (I hope) because of my rashes the doctor told me to reduce my EFV to 400g. Only inconvenience is that I'd need to take additional pill.

 


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