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Author Topic: Descovy Sleep  (Read 295 times)

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Offline bmancanfly

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Descovy Sleep
« on: April 17, 2017, 03:23:34 PM »
I started a Descovy  about six weeks ago and my sleep has not been the same for most of that time.  I realized that sleep can be a complicated issue, but nothing in my life has changed appreciable since I started the drug and the sleep issue began.  It's not horrible (I've been on MUCH worse drugs) but I can't seem to sleep for more than 5 hours.  I can still function, but I don't feel like I'm getting enough sleep.

I must say that I feel pretty good physically, even though I did't think I was having any side effects from Truvada.  I feel, in a very general way, better.  It's hard to describe.  If the sleep issue would resolve I'd be golden.

So, I'm just curious, has anyone else noticed a change in sleep since starting Descovy (or one of the all in one pills containing it).

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline eric48

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Re: Descovy Sleep
« Reply #1 on: April 18, 2017, 04:51:43 PM »
Hi,

How are you doing? So you kept the Viramune (after a short (bad) trip into Tivicay) and are now changing Truvada for Descovy...Is this correct?

Do you still do the FOTO-like strategy pf skipping the Sunday ? Are you doing the same with Descovy ?

BTW, did you know that French guidelines have just made it possible for a Doctor to consider the FOTO schedule, as long as it is done under the same procedure as the original trial ? The original trial was done with Truvada, not Discvy, too new...

Take care

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline bmancanfly

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Re: Descovy Sleep
« Reply #2 on: April 18, 2017, 10:28:13 PM »
Doing well, for the most part, thanks for asking.

Yeah, I'm still taking Viramune but now with Descovy rather than Truvada. No complaints about the Descovy except that my sleep is off.  It's nowhere near as bad as it was with Tivicay - that was dreadful.

FWIW, Viramune has been the easiest HIV med I've ever taken - zero side effects ever.

I still skip my meds in Sundays.  Still undetectable, no blips.  However, I have never felt comfortable going full on FOTO by skipping two days.

I just wish I could put this sleeping situation behind me.  It seems to correlate directly with the timing of the med change.  This doesn't proove cause and effect, but I'd like to hear if anyone else might also be experiencing this.

I'm hoping it resolves on its own soon.

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline sillyrabbit

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Re: Descovy Sleep
« Reply #3 on: April 19, 2017, 11:11:15 AM »
hi...do you have more information regarding this 'FOTO' study? what did it prove?
Also...for how long have you been skipping doses on Sunday? i have been on meds for 6 months and they really tire me a lot... thanks!
09.08.2016 Start meds during acute infection
VL : 3.500.000  / CD4 760
Kivexa (ABC+ Lamivudine)+Tivicay (DTG)
03.11.2016 Swtiched meds to Viread (TDF) Emvira + Tivicay (DTG)
14.03.2017 VL 56 CD4 560 Swtiched meds to Viread (TDF) Emvira + Isentress (RAL twice a day)  due to side effects of DTG

Offline eric48

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Re: Descovy Sleep
« Reply #4 on: April 19, 2017, 12:24:14 PM »
change in sleep since starting Descovy (or one of the all in one pills containing it).

We do not have Descovy here yet, but the lack of sleep discussion has emerged in our local group since the herd move from Stribild to Genvoya...

@ Sillyrabbit: the FOTO study and its long term follow up is reported here:
http://crine.org/our-research/research-network/foto/

This group is in Boston... It has a very long follow up (10y.? ), now... It was done with the 'older' Truvada, obviously...
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Online JimDublin

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Re: Descovy Sleep
« Reply #5 on: April 19, 2017, 01:13:52 PM »
hi...do you have more information regarding this 'FOTO' study? what did it prove?
Also...for how long have you been skipping doses on Sunday? i have been on meds for 6 months and they really tire me a lot... thanks!

Hi  Sillyrabbit,

I just add as a word of caution that you do need to talk and work with your doctor on this, don't play doctor yourself with this one is what i am saying. Its really not suited for everybody.

I also know you have been having a really hard time and switched meds a few times already in a short time-span and could have underlining concerns, so discus this with your doctor before any changes to your routine.

Jim
 
« Last Edit: April 19, 2017, 01:18:48 PM by JimDublin »
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Offline CaveyUK

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  • Posts: 979
Re: Descovy Sleep
« Reply #6 on: April 23, 2017, 07:38:39 AM »
Seriously? People are using interruption strategies with modern HIV meds???

Anyone who isn't, and is considering it....don't. At least not before discussing with your doctor. With the half-life of drugs you are not really likely to reduce any side-effects significantly and anything which breaks the routine of taking meds could potentially lead to adherence problems and subsequent drug resistance etc. I could understand it in the 'old days' with the really nasty effects of the meds, but in 2017?

My own personal view obviously.

bmancanfly - Perhaps a good idea is to keep a sleep journal, listing the times you sleep and anything you were doing immediately before - be that an activity or food/drink. It may help narrow down if anything else is having an effect (or is even interacting with the new meds). There are also some smart-devices which monitor sleep by fitting a sensor under the sheet...not particularly cheap but may also provide info about how many times you are waking during the night or if sleep apnea is a problem. If it is Descovy causing the problem, then you will also be armed with more detailed analysis when you discuss with your doctor. Just a thought.
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL  - UD (<40), CD4% 22
5th July 2016 - VL - UD (<40) (no CD4 taken)
13th September 2016 - CD4 432, VL - UD (<40), CD4% 28
13th December 2016 - VL - UD (<40) (no CD4 taken)

Offline sillyrabbit

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  • Let's learn how to live again!
Re: Descovy Sleep
« Reply #7 on: Today at 05:24:13 AM »
Hi Jim, Cavey, thanks for your input!

I just wanted to read more about it .... I wouldn't want to adventure myself in skipping 2 doses per week... as I am freaked our right now, I wouldnt miss not even one. Ever since I started therapy (in august 2016) I missed only two doses.(and that with the consent of the doctor). I am still having trouble with my regimen, but I am sticking to it..I just hope these side effects will eventually wear off...

bmancanfly, I have been on Tivicay for a while and indeed...it does give some sleep disorder - I don't know about Descovy as it is not available in my country. However, for sleeping disorder I would recommend melatonin and also anti anxiety meds (that need to be prescribed by your doctor)..they seem to work for me. (I am sleeping around 7 hours per night which I believe it is good)


09.08.2016 Start meds during acute infection
VL : 3.500.000  / CD4 760
Kivexa (ABC+ Lamivudine)+Tivicay (DTG)
03.11.2016 Swtiched meds to Viread (TDF) Emvira + Tivicay (DTG)
14.03.2017 VL 56 CD4 560 Swtiched meds to Viread (TDF) Emvira + Isentress (RAL twice a day)  due to side effects of DTG

 


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