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Author Topic: Still not quite sure about Discovy  (Read 4030 times)

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Offline Billy B

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Still not quite sure about Discovy
« on: June 22, 2017, 01:04:10 pm »
I switched from Truvada to Descovy in late September 2016. I have posted about feeling warm a little while after taking it, but now I am now getting that jittery jacked up warm buzzy high feeling that is similar to when I was taking Atripla.
I switched because I am an older one and wanted to protect my bones and kidneys although I had no damage from the almost six years of Truvada along with Isentress.
I am really thinking about switching back to Truvada since it was SE free.
I was wonder if others were experiencing similar SEs as me?
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13
VL  UD   CD4 450 CD4% 29.8 09/10/13
VL  UD   CD4 430 CD4% 31.0 04/29/14
VL  UD   CD4 520 CD4% 34.8 11/05/15
VL  UD   CD4 440 CD4% 33.5 03/10/15
VL  UD   CD4 450 CD4% 30.5 08/23/16
VL  UD   CD4 510 CD4% 34.0 07/21/20  (Biktarvy)

Offline Wade

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Re: Still not quite sure about Discovy
« Reply #1 on: June 24, 2017, 10:13:08 am »
Hi Billy, I was on issentress and truvada for years also. I switched over a year ago to Genvoya and noticed nothing you described.
I also just figured out what SEs are  :)

Wade
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Offline floridartist

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Re: Still not quite sure about Discovy
« Reply #2 on: July 13, 2017, 09:56:45 am »
Hi there, about Discovy, I really don't like them messing around with my meds, seems to me the Truvada was working fine, my t-cells kept climbing up, I was at 675 t-cells 6 months ago, then they put me on the Discovy , and now the t-cells dropped to 555, it worries me, actually it freaks me out. those t-cells were hard to earn throughout the years.
 As I understand, the Discovy is less harmful to the kidneys and bones and such, and myself as a 58 year old person that started HIV meds in 1996, new meds come up and they want to try them out to see what happens, but for myself, really I don't like change to Discovy  while the truvada seemed to be working just fine. so far no Discovy side effects other than it stole a bunch of t-cells from me, is that a side effect ?.
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Offline leatherman

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Re: Still not quite sure about Discovy
« Reply #3 on: July 13, 2017, 10:42:30 am »
I was at 675 t-cells 6 months ago, then they put me on the Discovy , and now the t-cells dropped to 555, it worries me, actually it freaks me out. those t-cells were hard to earn throughout the years.
cd4 counts can change by 100 pts within a single day. the change in yours is just a bit past that, and you're still well within the "normal" range, so don't stress too much. ;)

of course, cd4 count is not a measure of health, so having more or having less (when in the normal range) doesn't mean you're doing worse or better on the new med. After you get your VL suppressed for a while, the cd4 count becomes just a number and not a very important number once past the advanced HIV/200 mark.

6 months ago
what have your other results been like in the last few years? You could be at a point of having only a once-a-year cd4 test . . . or it could even be optional. :D

interestingly, I just returned from a 2-day Project Inform: Core training where one of the modules was about the frequency of laboratory testing. The most current HRSA/HAB guidelines recently extended the testing range for those who are virally suppressed to once every 6 months in a 24-month period. The word is that the next update will extend VL testing to once a year with cd4 testing optional for PLWH with consistently suppressed viral loads. We should probably see these changes to the Ryan White Core Measurements in the 2016-17 cycle. (Hopefully that change will also standardize the time periods across the measures to be more consistent. ;) )

the current guidelines are:
After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)


These guideline changes reflect the science of monitoring patients (who are and are not virally suppressed) to decrease the lab visit burden to patients and the associated costs of those tests (lab work and doctor appts). While that's a win-win for patients (less trips to the doc, less jabs with a needle, and less money spent to health care), in cases where these services are covered through a state's ADAP or Medicaid program, these cost savings will help states to provide more services for even more people.

Of course, any clinical changes or med changes puts a patient at a different testing level with has more frequent testing based on the situation until patients are once again virally suppressed for the recommended length of time.
leatherman (aka Michael)

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You were leaning in to speak to me
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Offline AusShep

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Re: Still not quite sure about Discovy
« Reply #4 on: August 05, 2017, 03:50:08 am »
I've had no side effects switching from Truvada to Descovy.  Have you had a DEXA scan to check for bone loss?  That's what I'd be mostly worried about. 

Had an osteoporosis Dx at 50 on Truvada.  Past due for a follow up scan which I'm hoping will show improvement after switching to Descovy over a year ago and taking bone density meds for a couple of years.

I'd stick with the new meds...

I've also had CD4s drop from the 600s to 400s, It is frustrating. I think I blamed mine on Tivicay, but shit happens.   Mine came back after the dip, and I seriously doubt Tivicay was the reason, it just happened to be something else changed at the same time.

Offline CaveyUK

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Re: Still not quite sure about Discovy
« Reply #5 on: August 05, 2017, 09:29:53 am »
CD4 counts are not directly related to meds. All the meds can do is suppress the virus (VL) and your body takes care of CD4 production.

Your CD4 level can be affected by so many mundane, benign things that it isn't really the best guide to be closely watching once you are in 'normal' range and your virus is suppressed. It was far more important years ago when a trend of reduced CD4 numbers signified progression of the disease, or in people newly diagnosed.

As long as the meds are keeping the VL undetectable, the CD4 count will do what it will and there is little/nothing you can do about it.
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Offline kylesweet

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Re: Still not quite sure about Discovy
« Reply #6 on: August 07, 2017, 08:39:21 pm »
The new form of tenofovir in descovy is better for your kidneys and bones but it's absorption can vary dramatically. That's why if you take it with darunavir you have to take the smaller dose. I took descovy with fish oil once and it boosted the tenofovir just like darunavir can. I felt really ill because it boosted the drug by 2.5 X. Maybe you're eating something that is boosting its absorption? Only way to get round this is to switch back to Truvada as the tenofovir in that can't be boosted. Or figure out what's boosting it.
« Last Edit: August 07, 2017, 08:41:27 pm by kylesweet »

Offline Jim Allen

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Re: Still not quite sure about Discovy
« Reply #7 on: August 08, 2017, 02:44:48 am »
Quote
I took descovy with fish oil once and it boosted the tenofovir just like darunavir can. I felt really ill because it boosted the drug by 2.5 X.

Links on fish oil boosting this HIV med by 2.5 x / that level ?

I'm aware meals boots the blood plasma levels of the meds from absorption, when it comes to absorption it's important to follow the directions given be  a it taking with a meal, empty  a stomach or with plenty of water.

however i found no published sentific or medical journal indicating HIV med absorption / blood plasma levels boosted in anyway by omega 3 or fish oil. So if you can provide this please.

Jim
« Last Edit: August 08, 2017, 04:22:37 am by JimDublin »
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