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Author Topic: There is a change afoot  (Read 4346 times)

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Offline aztecan

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There is a change afoot
« on: May 20, 2009, 10:33:55 AM »
After much discussion, I have in my hot little hand a prescription for new meds.

Surprisingly, my doctor went further than I thought he would.

I am switching from Lexiva/Norvir/Combivir to Isentress and Truvada.

The Truvada was the surprise. I have been on Combivir for a long time - 13 years. But, the doc researched things and decided that, in my case, Truvada would be better.

For those unfamiliar with my situation, I don't have resistance issues, the normal reason to choose Isentress. But I do have hyperlipidemia issues that I can't control with statins because I get severe side effects from statins.

I also have been diagnosed with Non-Alcoholic Steato Hepatitis, an outgrowth of hepatic steatosis, probably caused by many years on meds, so the doc thought the Truvada might be a bit easier on my liver.

So, I will drop this slip off at the pharmacy this morning and will probably pick up the new meds Friday.

Wish me luck folks.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BM

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Re: There is a change afoot
« Reply #1 on: May 20, 2009, 12:24:45 PM »
That's great! Did your doctor say whether your liver problems were likely to improve on this combination?

Online Miss Philicia

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Re: There is a change afoot
« Reply #2 on: May 20, 2009, 01:46:07 PM »
This is the combo I've been on and it's like a walk in the park. (but due to resistance profiles I'm also on Prezista and a Norvir booster).

Best of luck Mark.  Don't wait 6 months for your next labs. :)
"Iíve slept with enough men to know that Iím not gay"

Offline mjmel

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Re: There is a change afoot
« Reply #3 on: May 20, 2009, 02:28:49 PM »
Best of luck to you.
You, who's always helping others, deserve a BIG break...
like years and years with no further issues and complications.

Mike

Offline Robert

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Re: There is a change afoot
« Reply #4 on: May 20, 2009, 05:18:16 PM »

mark

the truvada isn't too bad.  I have gas and i've heard tell by some here it's the truvada that causes it.  It can be annoying.

but is sounds to me like your Dr is on to something.  let's keep our fingers crossed.

robt
..........

Offline aztecan

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Re: There is a change afoot
« Reply #5 on: May 20, 2009, 11:17:08 PM »
Thanks BM, Miss Philicia, Mike and Robert.

I am actually rather excited about this change. I don't really know why, outside of going from three to two HIV meds (no more Norvir!).

Best of luck Mark.  Don't wait 6 months for your next labs. :)

Don't worry. The doc wants me to have followup labs in a month, then we'll probably go three months as long as things look OK. At some point, we will probably go back to every six months for the HIV labs, which will be fine by me as long as all is working well.

I also am very hopeful I will be able to keep my lipids in better check without the influence of my previous regimen.

That's great! Did your doctor say whether your liver problems were likely to improve on this combination?

No, not directly. But, we did discuss this briefly and, if it causes a drop in my lipids, then it would, as a side effect, be better for my liver, or so we hope

I'll keep you posted.

HUGS,

Mark


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Ann

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Re: There is a change afoot
« Reply #6 on: May 21, 2009, 06:33:25 AM »
Good luck Mark! This is my number one choice of combos, but until it's approved for first-line therapy, my actual choice will be Reyataz/Norvir/Truvada. I'm hoping to hold out until Isentress is included in first-line.

I really hope this takes care of some of your issues for you. You certainly deserve a break!

Hugs,
Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online J.R.E.

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Re: There is a change afoot
« Reply #7 on: May 21, 2009, 07:55:46 AM »


Wishing you the best Mark !


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Online Miss Philicia

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Re: There is a change afoot
« Reply #8 on: May 21, 2009, 09:33:01 AM »
mark

the truvada isn't too bad.  I have gas and i've heard tell by some here it's the truvada that causes it.  It can be annoying.

Yes, that is truvada that does that.  I have found that taking a pancreatic enzyme alleviates most of this, plus it just generally allows for better GI absorption issues.
"Iíve slept with enough men to know that Iím not gay"

Offline Inchlingblue

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Re: There is a change afoot
« Reply #9 on: May 21, 2009, 12:34:55 PM »
Good luck Mark! This is my number one choice of combos, but until it's approved for first-line therapy, my actual choice will be Reyataz/Norvir/Truvada. I'm hoping to hold out until Isentress is included in first-line.


Ann, you've held out very impressively I must say. I've read Isentress will be approved for first-line here in the US in the next few months (one article specifically said July 2009).

Does that mean you're planning on starting meds at that point or that you'll change your choice to Isentress/Truvada (from Reyataz/Norvor/Truvada) for when the time comes for you to start?

Offline BT65

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Re: There is a change afoot
« Reply #10 on: May 21, 2009, 06:38:20 PM »
Wow, good luck with that new combo, Mark, and please let us know how it's going. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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Re: There is a change afoot
« Reply #11 on: May 21, 2009, 07:18:19 PM »

I've been on both Isentress and Truvada since MARCH 2006.......Mark, I think the time is right for you, and I think you'll do just fine  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Assurbanipal

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Re: There is a change afoot
« Reply #12 on: May 22, 2009, 07:33:36 AM »
Good luck with the new combo -- hope it will help with the cholesterol.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Ann

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Re: There is a change afoot
« Reply #13 on: May 22, 2009, 08:21:02 AM »
Ann, you've held out very impressively I must say. I've read Isentress will be approved for first-line here in the US in the next few months (one article specifically said July 2009).

Does that mean you're planning on starting meds at that point or that you'll change your choice to Isentress/Truvada (from Reyataz/Norvor/Truvada) for when the time comes for you to start?

No way am I going to start treatment just because a new combo has been approved. I'm just hoping it's approved in the UK before I need to start - and preferably also approved for once-a-day-dosing. Otherwise, it's the boosted Razamataz and Truvada for me.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline AndyArrow

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Re: There is a change afoot
« Reply #14 on: May 23, 2009, 02:42:53 AM »
Mark,

I just wanted to wish you well on your new combo.

I have no complaints taking either one of them although like Philly I have the added joys of Prezista & Norvir.

Hugs,
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline aztecan

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Re: There is a change afoot
« Reply #15 on: May 23, 2009, 11:41:59 AM »
I am staring the new regimen today. I don't anticipate any problems.

What was a shocker was when I picked up the new meds and went to pay the copays.

The Truvada was the usual $20. I was curious to see whether the Isentress would be $20 or the higher $40.

I forgot there was another option. Apparently, it is considered a specialty medication for which I must pay 20 percent of the cost.

So, my copay was $177.45.  :o That puts the cost of the Isentress at about $888 a month.

Hey, it could have been worse. I could be taking Atripla, which costs about $1,800 a month.

This is going to cause me to rework my budget a bit, at least until my flex account kicks back in July 1.

One thing you must admit, when it comes to HIV care and treatment, there are always surpirses.

HUGS,

Mark

(Who is poorer but wiser this weekend.)

« Last Edit: May 23, 2009, 11:46:01 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Inchlingblue

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Re: There is a change afoot
« Reply #16 on: May 23, 2009, 12:39:46 PM »
I wonder why it's considered a "specialty" medication and Truvada, which is for the same thing (i.e. HIV) is not?

Merck does have an assistance program for co-pays, you might want to check out their website.

Offline aztecan

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Re: There is a change afoot
« Reply #17 on: May 25, 2009, 10:28:49 AM »
I'm going to check, but I think the reason is it wasn't on my insurer's formulary.

Since Isentress was only approved about 18 months ago, it may not have made it onto the formulary yet. It is weird, since it is still considerably cheaper than some of the other meds.

I am going to try to get a copy of the formulary to see what's what.

Aside from that, no problems with it as yet.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

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Re: There is a change afoot
« Reply #18 on: May 25, 2009, 11:57:43 AM »
I'm going to check, but I think the reason is it wasn't on my insurer's formulary.

Since Isentress was only approved about 18 months ago, it may not have made it onto the formulary yet. It is weird, since it is still considerably cheaper than some of the other meds.

I am going to try to get a copy of the formulary to see what's what.

Aside from that, no problems with it as yet.

HUGS,

Mark



Mark, I have Medicare Part "D" and it's been covered for the last 3 yrs. I've been on it since 2007, not sure about any New Mexico State Formulary, as that doesn't apply to me...........I haven't been on State ADAP since March 2006, due to the New Medicare part "D" taking affect......in a way I'm greatfull for Part "D" as, I wasn't able to get anything other than what was State Formulary, back then.......
« Last Edit: May 25, 2009, 12:01:22 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

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Re: There is a change afoot
« Reply #19 on: May 26, 2009, 12:49:59 PM »
Wow, Mark.  That co-pay is like a whole month's worth of groceries.  Geesh.

I'm glad things seem to be going alright with the meds.  When do you see your doc again?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline YaKaMein

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Re: There is a change afoot
« Reply #20 on: May 26, 2009, 06:10:00 PM »
Mark,
Glad to hear a meds change is in tow for you ... sorry that it comes with a new cost to ya. Here's hoping it's a breeze and does the trick to better overall health. Keep us abreast. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline aztecan

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Re: There is a change afoot
« Reply #21 on: May 26, 2009, 11:34:26 PM »
Thanks all. Yep, that copay took me aback for a bit. I even asked the pharmacist to make sure they had run it through my insurance, even though I knew the cost would be too low for them to not have.


Wow, Mark.  That co-pay is like a whole month's worth of groceries.  Geesh.

I'm glad things seem to be going alright with the meds.  When do you see your doc again?

Hey Betty,

I will see the doc at the end of June. Well, I actually saw him today, but you know what I mean.

He wants to give it a month to see if there is any change in the lipids. I will continue to take 500 mg Niaspan and 6,000 mgs of fish oil.

I also will stick to my new way of eating. I have found that I rather like it and that fatty foods don't really attract me any more - with the exception of cheese and the occasional beef steak or pork chop. ;)

So, in other words, so far, so good. ;D

HUGS,

Mark

« Last Edit: May 26, 2009, 11:36:04 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Assurbanipal

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Re: There is a change afoot
« Reply #22 on: May 27, 2009, 07:53:57 AM »
Most drug plans have a formal appeals process, where you can challenge a decision to put a drug into the highest copay tier.  It might be worthwhile to call the 800 line for your plan, ask how to file an appeal and to draft a letter and ask your doc to send one as well.  All it costs is some time and a few stamps.

I'd include a summary of your lipid issues and trial of various statins and exercise, that you are treatment experienced and the lower cost versus other antiretrovirals.

Even if it doesn't work retroactively, it will serve as a prod for them to add it to the formulary in the future.

If this is a self insured plan, and you are comfortable sharing the info with the human resources staff, ask your benefits rep how they protect HIPAA privacy rights and then copy them (in the approved HIPAA format as well )  But this is a large employer play, if your employer is small and only buying insurance for a few people this may not actually do anything for you.

Good luck
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Inchlingblue

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Re: There is a change afoot
« Reply #23 on: May 27, 2009, 12:39:55 PM »
Mark: I was wondering, is your Isentress dose 400 mg. twice a day?

I have not yet filled my Rx for it but I went online to check my insurance coverage and they consider 30 qty. 400 mg as "one month's supply" which it clearly isn't since it needs to be taken twice a day so one month's supply would be 60 qty. I hope I don't have a hard time getting 60 pills instead of the 30 that they consider to be one month's supply.......we'll see.

Offline aztecan

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Re: There is a change afoot
« Reply #24 on: May 30, 2009, 12:18:45 AM »
Mark: I was wondering, is your Isentress dose 400 mg. twice a day?

I have not yet filled my Rx for it but I went online to check my insurance coverage and they consider 30 qty. 400 mg as "one month's supply" which it clearly isn't since it needs to be taken twice a day so one month's supply would be 60 qty. I hope I don't have a hard time getting 60 pills instead of the 30 that they consider to be one month's supply.......we'll see.

Yes, I take a 400 mg tablet of Isentress twice a day, so you will indeed need 60 tablets.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online Miss Philicia

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Re: There is a change afoot
« Reply #25 on: May 31, 2009, 06:58:22 PM »
Mark: I was wondering, is your Isentress dose 400 mg. twice a day?

I have not yet filled my Rx for it but I went online to check my insurance coverage and they consider 30 qty. 400 mg as "one month's supply" which it clearly isn't since it needs to be taken twice a day so one month's supply would be 60 qty. I hope I don't have a hard time getting 60 pills instead of the 30 that they consider to be one month's supply.......we'll see.

I'd have to consider that some sort of error on their website.  If you are overly concerned, ask the pharmacy to check before they fill it.  I know they'll do that were I go, but then the place I go to caters to HIV folks (specialty pharmacy).
"Iíve slept with enough men to know that Iím not gay"

Offline risred1

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Re: There is a change afoot
« Reply #26 on: June 08, 2009, 10:16:55 AM »
Mark, how's it going?

:)
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline aztecan

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Re: There is a change afoot
« Reply #27 on: June 09, 2009, 10:02:13 PM »
Mark, how's it going?

:)

So far, so good. No noticeable side effects from either the Truvada or Isentress.

I will go for labs at the end of the month, or thereabouts, to see how things are going both with the CD4/viral load and the lipids.

Thanks for asking.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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