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Author Topic: Med other than Truvada or Epzicom  (Read 2739 times)

0 Members and 1 Guest are viewing this topic.

Offline GoForIt

  • Member
  • Posts: 126
Med other than Truvada or Epzicom
« on: October 01, 2013, 03:55:51 PM »
It seems the two big meds recommended are Epzicom and Truvada. 

I have tested allergic to Epzicom .......and Truvada has issues with kidneys/bone density.  I am just wondering what other options are there if any if you were not able to take either of these meds? 

Currently Truvada is my only option that I know of and just a little scared if I ever had to go off of it because of kidney damage.  What would the next recommendation be?
08/09/2013   Diagnosed WB positive
08/20/2013   CD4-506(28%)  VL-10,800
09/12/2013   CD4-391(28%)  VL-14,900
09/17/2013   Start ART (Truvada & Tivicay)
10/11/2013   CD4-377(26%)  VL-UD
12/20/2013   CD4-590(??%)  VL-UD
03/18/2014   CD4-660(29%)  VL-UD
07/22/2014   CD4-613(29%)  VL-UD
08/01/2014    Start Phase 3 TAF Clinical Trial
10/09/2014   CD4-498(29.5%) VL-UD
11/06/2014   CD4-600(30.2%) VL-UD

Offline Niceguy2013

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  • Posts: 66
Re: Med other than Truvada or Epzicom
« Reply #1 on: October 01, 2013, 08:37:51 PM »
I'm on atripla. I think kidney problems are a risk with most hiv medicines but your doctor will monitor liver  and kidney function.

Offline buginme2

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  • Posts: 3,292
Re: Med other than Truvada or Epzicom
« Reply #2 on: October 01, 2013, 08:45:01 PM »
After Truvada and Epzicom your gonna start hitting the older combos.  Combivir would be next so your starting to incorporate AZT.

However give it a year or so and TAF will be out on the market and the kidney and bone issues with tenofovir should be diminished (hopefully).
Don't be fancy, just get dancey

Offline newt

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  • the one and original newt
Re: Med other than Truvada or Epzicom
« Reply #3 on: October 02, 2013, 02:36:36 AM »
It is possible to construct a good, effective combo from modern meds without Truvada or Epzicom. Any HIV doc worth their salt will have a few suggestion up their sleeve, since your situation is relatively common. Also, you can use tenofovir at a reduced dose, but this is perhaps complex, since it splits Truvada into it's components and can mean, eg, taking tenofovir every other day.

- matt
"The object is to be a well patient, not a good patient"

Offline Jeff G

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  • How am I doing Beren ?
Re: Med other than Truvada or Epzicom
« Reply #4 on: October 02, 2013, 08:15:25 AM »
HI Go ... do you have a history of kidney or bone issues ? We have talked about this before but Im still having trouble understanding why you are focused on Truvada .

Offline GoForIt

  • Member
  • Posts: 126
Re: Med other than Truvada or Epzicom
« Reply #5 on: October 02, 2013, 09:39:36 AM »
HI Go ... do you have a history of kidney or bone issues ? We have talked about this before but Im still having trouble understanding why you are focused on Truvada .

Do not have a history of kidney or bone issues no.  But I did come up in the 5% who are allergic to epzicom and therefore can never take it.  When most people have kidney issues with Truvada they are switched over to Epzicom.

From the research I've done Epzicom & Truvada are the two main options lately and its hard to find out about a third online. 

I feel like Truvada is taking its toll on my kidney as I pee much less than I used to before starting.  Today I had to give urine for a test and usually I could fill the cup.  I even drank an entire water bottle 30minutes before.  I could only fill it barley to the 1oz line which was like the lowest option.  Sat there for 5 more minutes and couldn't go anymore....just strange for me....



Also after doing a little research the numbers are astounding on how fast Truvada causes kidney damage that has been reported as irreversible.  Right now I am just trying to get as much information as I can.  But it seems when you type "Truvada Kidney" into google all the websites explain how Truvada is linked with irreversible kidney damage. 

At least you can work out with weights, and take supplements like Calcium/Vitamin D/ to try to offset bone issues.  I just don't see anything you can do about the kidney and it worries me to where I want more information.
« Last Edit: October 02, 2013, 09:45:13 AM by GoForIt »
08/09/2013   Diagnosed WB positive
08/20/2013   CD4-506(28%)  VL-10,800
09/12/2013   CD4-391(28%)  VL-14,900
09/17/2013   Start ART (Truvada & Tivicay)
10/11/2013   CD4-377(26%)  VL-UD
12/20/2013   CD4-590(??%)  VL-UD
03/18/2014   CD4-660(29%)  VL-UD
07/22/2014   CD4-613(29%)  VL-UD
08/01/2014    Start Phase 3 TAF Clinical Trial
10/09/2014   CD4-498(29.5%) VL-UD
11/06/2014   CD4-600(30.2%) VL-UD

Offline newt

  • Member
  • Posts: 3,887
  • the one and original newt
Re: Med other than Truvada or Epzicom
« Reply #6 on: October 03, 2013, 12:12:53 PM »
Google is not a good source of health information.

Like other drugs, the tenofovir in Truvada will affect a few % of people's kidneys badly, and a few % of people's bone health, but the long-term studies don't support a view that this is significant if you have healthy kidneys and do normal things to protect your skeleton as you age eg avoid smoking, exercise.

I have dropped tenofovir from my combo because of long-term concerns about bone health, but I took it fine for 7 years. This is not an evidence based decision, but it seems more prominent in poeple I know on tenofovir than kidney problems. Now on a boosted PI and emtricitabine  << emtricitabine  also affects your kidneys...

Routine monitoring should alert you to any concerns. If bone health is a worry insist ona DEXA scan.

- matt
"The object is to be a well patient, not a good patient"

Offline JungleJungle

  • Member
  • Posts: 41
Re: Med other than Truvada or Epzicom
« Reply #7 on: October 03, 2013, 12:52:41 PM »
At a first look my Doctor wanted me to start Complera as i have the right standards: naive with CD4 > 200 and VL < 100k
But even if i am young and healthy (apart being poz my labs are excellent) few days ago i got back my labs and surprisingly my CD4 went back at 450 so my doctor postponed my meds (need to be under 400) and more surprisingly told me she prefers me to start with Kivexa (Epzicom) + Viramune or Edurant exactely due to her concerns about kidneys damages... Now i am waiting to test myself for the HLA gene but she told me the Truvada combos are way heavier....
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline buginme2

  • Member
  • Posts: 3,292
Re: Med other than Truvada or Epzicom
« Reply #8 on: October 03, 2013, 01:04:59 PM »
At a first look my Doctor wanted me to start Complera as i have the right standards: naive with CD4 > 200 and VL < 100k
But even if i am young and healthy (apart being poz my labs are excellent) few days ago i got back my labs and surprisingly my CD4 went back at 450 so my doctor postponed my meds (need to be under 400) and more surprisingly told me she prefers me to start with Kivexa (Epzicom) + Viramune or Edurant exactely due to her concerns about kidneys damages... Now i am waiting to test myself for the HLA gene but she told me the Truvada combos are way heavier....

This sounds more like a cost issue (getting you to take cheaper older drugs) than a genuine concern for kidney damage.
Don't be fancy, just get dancey

Offline JungleJungle

  • Member
  • Posts: 41
Re: Med other than Truvada or Epzicom
« Reply #9 on: October 03, 2013, 01:24:02 PM »
Why? Meds in my country (Italy) are totally free...
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 13,241
  • How am I doing Beren ?
Re: Med other than Truvada or Epzicom
« Reply #10 on: October 03, 2013, 01:33:59 PM »
Why? Meds in my country (Italy) are totally free...

Someone is paying for them and that does impact treatment guidelines even in country's with socialized healthcare systems . I'm not sure about Italy specifically but most country's impose cost cutting treatment guidelines .   

Offline JungleJungle

  • Member
  • Posts: 41
Re: Med other than Truvada or Epzicom
« Reply #11 on: October 03, 2013, 02:24:16 PM »
I am totally aware that someone is paying my meds. That someone being ME, as in socialized healtcare system taxes/fiscal rates are way higher.
But apart from any political or economical consideration, Eviplera is usually prescribed and available in my country since February and more and more people are into it, someone even switching from Atripla, so why not me? I am the "average guideline guy" for Complera, so the cost issue does not make sense for me... 
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline Matts

  • Member
  • Posts: 231
Re: Med other than Truvada or Epzicom
« Reply #12 on: October 03, 2013, 03:01:11 PM »
Which combo do U want?
You still get every combo in the European Union You want- Sometimes you have to fight a bit because the health insurances are forced to prescribe the cheapest crap. But at the end You get what You want.

I would try Eviplera and check the kidneys regularly. My kidneys went terribly south on Truvada and I had to stop it. But this happens only in some percents of patients. Buginme already said it-the new TAF will come soon and this problem will be over.

If You cant stand Eviplera You can switch to Epizcom and Rilpivirine, so far Your doc is right.
triumeq

Offline GoForIt

  • Member
  • Posts: 126
Re: Med other than Truvada or Epzicom
« Reply #13 on: October 03, 2013, 03:15:39 PM »
Which combo do U want?
You still get every combo in the European Union You want- Sometimes you have to fight a bit because the health insurances are forced to prescribe the cheapest crap. But at the end You get what You want.

I would try Eviplera and check the kidneys regularly. My kidneys went terribly south on Truvada and I had to stop it. But this happens only in some percents of patients. Buginme already said it-the new TAF will come soon and this problem will be over.

If You cant stand Eviplera You can switch to Epizcom and Rilpivirine, so far Your doc is right.

What did you go on after Truvada?  From my research we won't see the new TAF until late next year because it seems clinical trials run into the middle of next year.  How long did it take before you saw the Truvada have an effect on your kidney?  Did it cause you pain?  Is it reversible for you?
08/09/2013   Diagnosed WB positive
08/20/2013   CD4-506(28%)  VL-10,800
09/12/2013   CD4-391(28%)  VL-14,900
09/17/2013   Start ART (Truvada & Tivicay)
10/11/2013   CD4-377(26%)  VL-UD
12/20/2013   CD4-590(??%)  VL-UD
03/18/2014   CD4-660(29%)  VL-UD
07/22/2014   CD4-613(29%)  VL-UD
08/01/2014    Start Phase 3 TAF Clinical Trial
10/09/2014   CD4-498(29.5%) VL-UD
11/06/2014   CD4-600(30.2%) VL-UD

Offline buginme2

  • Member
  • Posts: 3,292
Re: Med other than Truvada or Epzicom
« Reply #14 on: October 03, 2013, 03:20:01 PM »
It's one thing if your creatinine levels are off and your doctor recommends dropping Truvada for Epzicom.  It's another thing to recommend Epzicom at the get go when there is no clinical need to.  That sounds like a cost motivation.  Not to mention there is concern that epzicom can cause heart issues so your trading off kidney issues for heart issues.

My real concern is that they recommended viramune instead of rilpivirine.  So they dont want you to take Complera and instead want to put you on an old combo of epzicom and viramune.  That's bullshit.  Why viramune?   Tell me that's not due to price.



Don't be fancy, just get dancey

Offline JungleJungle

  • Member
  • Posts: 41
Re: Med other than Truvada or Epzicom
« Reply #15 on: October 03, 2013, 03:24:20 PM »
Which combo do U want?
You still get every combo in the European Union You want- Sometimes you have to fight a bit because the health insurances are forced to prescribe the cheapest crap. But at the end You get what You want.

I would try Eviplera and check the kidneys regularly. My kidneys went terribly south on Truvada and I had to stop it. But this happens only in some percents of patients. Buginme already said it-the new TAF will come soon and this problem will be over.

If You cant stand Eviplera You can switch to Epizcom and Rilpivirine, so far Your doc is right.

I have read a lot of positive comments on Epzicom, and i guess it is just underrated due to its allergic issues, which i hope not to be allergic.
I really prefer a med that is broken down in the liver instead of kidney, because liver damages are often reversibles meanwhile kidney damages are not!
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline buginme2

  • Member
  • Posts: 3,292
Re: Med other than Truvada or Epzicom
« Reply #16 on: October 03, 2013, 03:26:26 PM »
Why are you guys worried about kidney damage if your labs are normal.

Any HIV doctor worth a nickle should be regularly checking your kidney function.
Don't be fancy, just get dancey

Offline GoForIt

  • Member
  • Posts: 126
Re: Med other than Truvada or Epzicom
« Reply #17 on: October 03, 2013, 03:32:50 PM »
Why are you guys worried about kidney damage if your labs are normal.

Any HIV doctor worth a nickle should be regularly checking your kidney function.

Haven't even had my first check for kidney labs yet reported back to me since I started the Truvada but I do feel like I can feel a toll being taken in my lower abdomen when I take it.  I also urinate less than I used to which makes me wonder.  After reading studies linking Truvada with "irreversible" kidney damage it causes me to look into what are the next logical medications to begin taking if I wanted to discontinue it for a reason such as kidney damage.  Really hope TAF is released soon.  I know that they are recruiting for a clinical trial for it now to have those who have been on Truvada for at least 6 months to see if switching over to TAF from Truvada will be safe.
08/09/2013   Diagnosed WB positive
08/20/2013   CD4-506(28%)  VL-10,800
09/12/2013   CD4-391(28%)  VL-14,900
09/17/2013   Start ART (Truvada & Tivicay)
10/11/2013   CD4-377(26%)  VL-UD
12/20/2013   CD4-590(??%)  VL-UD
03/18/2014   CD4-660(29%)  VL-UD
07/22/2014   CD4-613(29%)  VL-UD
08/01/2014    Start Phase 3 TAF Clinical Trial
10/09/2014   CD4-498(29.5%) VL-UD
11/06/2014   CD4-600(30.2%) VL-UD

Offline buginme2

  • Member
  • Posts: 3,292
Re: Med other than Truvada or Epzicom
« Reply #18 on: October 03, 2013, 08:34:29 PM »
Maybe the best thing to do is not look up all the bad things that can happen to you when you take a particular medicine and instead focus that energy on researching the best doctor in your area who you trust will look out for such things and handle them appropriately.   That way when you take something and pee less you don't jump to such conclusions or worry.

Research all the bad things that can happen to you when you take aspirin. 

Why put yourself through that?

Don't be fancy, just get dancey

Offline GoForIt

  • Member
  • Posts: 126
Re: Med other than Truvada or Epzicom
« Reply #19 on: October 03, 2013, 08:38:32 PM »
Maybe the best thing to do is not look up all the bad things that can happen to you when you take a particular medicine and instead focus that energy on researching the best doctor in your area who you trust will look out for such things and handle them appropriately.   That way when you take something and pee less you don't jump to such conclusions or worry.

Research all the bad things that can happen to you when you take aspirin. 

Why put yourself through that?

Because you don't take aspirin every single day for the rest of your life.  I appreciate you replying but really I'm just looking to hear what other med options are out there after Truvada/Epzicom.  I think I have one of the best doctors in my area who I did research a lot to get to.  I will be asking him the same question when I go to see him next week.  Just thought this forum has a valuable lot of people who are experienced in this situation where I could gain some knowledge BEFORE anything happens.  Thanks for all your answers though.
08/09/2013   Diagnosed WB positive
08/20/2013   CD4-506(28%)  VL-10,800
09/12/2013   CD4-391(28%)  VL-14,900
09/17/2013   Start ART (Truvada & Tivicay)
10/11/2013   CD4-377(26%)  VL-UD
12/20/2013   CD4-590(??%)  VL-UD
03/18/2014   CD4-660(29%)  VL-UD
07/22/2014   CD4-613(29%)  VL-UD
08/01/2014    Start Phase 3 TAF Clinical Trial
10/09/2014   CD4-498(29.5%) VL-UD
11/06/2014   CD4-600(30.2%) VL-UD

Offline buginme2

  • Member
  • Posts: 3,292
Re: Med other than Truvada or Epzicom
« Reply #20 on: October 03, 2013, 09:08:12 PM »
If Truvada causes you an issue where you need to stop, and you can't take Epzicom I would then insist on being placed on a non NRTI combo (which is not a recommended treatment plan per the government).  Something like boosted Prezista and Isentress (Yes dual therapy) or another combo sans NRTI.

If your doctor countered with a combo that included Combivir or an older NRTI I would refuse even if it meant staying on Truvada for six months or a year to ensure a undetectable viral load then switch to a non approved Prezista/Isentress combo.  I'd insist.
Don't be fancy, just get dancey

 


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