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Author Topic: seeks feedback on suggested regiment from a 2nd opinion Dr  (Read 1523 times)

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Offline Lad_Liam

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seeks feedback on suggested regiment from a 2nd opinion Dr
« on: June 19, 2012, 12:10:12 AM »
Hi there
Iím recently poz and last week went and saw a seroconversion specialist for a second option on treatment. Iíd like some feedback on the ideas, drug suggestions and especially if anyone has been on these combos.

Here is the background to my status story:

1995 - 2011     17 years of HIV Negative tests since aged 17
                       Exclusively homosexually active for the past 20 years
                       Great adherence to protected sex practices
16 Nov 2011    Tested HIV Negative
1-5    Mar í12   Mardi Gras 2012 - likely exposure period, aged 34
10-17 Mar Ď12  Acute Seroconversion illness
03 April 2012   Indeterminate test returned
11 April 2012   Indeterminate test returned
03 May 2012   Positive status confirmed
05 June 2012  Genotype/Resistance testing, pending
15 June 2012  Secondary Genotype Assay (alternate technique) and HLA5701, pending

Y       M  D    CD4  CD4 %  VL       HIV log10 (copies /mL)
2012 04 12   1288 (28%)     25,500   4.41
2012 06 06     891 (33%)     81,300   4.91

The Doctorís Opinions:

My diagnosing Dr is a HIV specialist with ~20 years experience and was proceeding according to Australian CD4 based guidelines. She believes the debate is still out on early treatment. Her range to begin treatment (without major symptoms) is around 350-500.

The seroconversion specialist has ~30 years experience and wants to treat me immediately to preserve my immune and gut architecture and minimize formation of reservoirs. He believes that at my stage of infection immediate treatment is worthwhile and clearly evidenced. But that time period (eg. since my infection) is limited, closing, so to start now for potential benefits.

He has prescribed me a three staged approach using multiple pill combinations in sequence, eg. progress based on VL and my body being able to cope with the drug he said? Issues about administering Nevirapine, eg. he said canít use it in patients with >400 T cell counts due to hyeper-sensitivity issues.

Apparently the third combination will become available in a once a day pill in Oz in 2013 or 2014, so he is lining me up for that once a day pill.

He says the eventual combo is good for decreasing VL in semen as the ureteral tract is targeted by Nevirapine.

Help wanted:

Has anyone got any info on this stuff, I took notes in the appointment, but itís kinda a bit jumbled in my head and confusing now.

The Seroconversion Drís suggested 3 stage course is:

1 Start now on Truvada / Raltegravir (brand name Isentress)
   once VL= stable UD for a weeks/few months, switch to:
2 Kivexa & Raltegravir (RAL) 
3 When known to be tolerated, switch to  RAL to Nevirapine, keep the Kyvexa.

I think this translates to:

1 RAL / Truvada
2 RAL / Kivexa
3 Nevirapine / Kivexa

Any thoughts appreciated... Iíve just been reading the patient information about the drugs and itís obviously pretty full on. Cheers.
a new dark passenger joins the ride

Offline buginme2

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #1 on: June 19, 2012, 12:26:26 AM »
Go on treatment now but insist on starting with and >staying< on Isentress/Truvada.

Sounds like they want you to be on Nevirapine but cant start you on it because your cd4 count is too high.  If they were to do that it has some pretty nasty side effects.  However, I/T is a newer combo, less side efffects, and pretty outstanding efficacy.

The other thing about nevirapine is there was a recent review of like 20,000 patients in the US and EU comparing Nevirapine versus Atripla and they found those on Nevirapine had a "significantly higher risk of death.". I can post a link to the study (cant right now as im on my phone).

If you want a one pill oncer per day. Start with Atripla.

Thats just my opinion, good luck with what you choose.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Lad_Liam

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #2 on: June 19, 2012, 02:44:48 AM »
thanks buginme2,
yes he eventually wants me on Nevirapine because of its efficiency and apparent ability to reduce VL in semen and its brain penetration.

He doesn't like one of the ingredients in Truvada long term due to bone density stuff, think that was his rationale for not using a once a day pill.

I way appreciate if you can post the link to the comparative study you mentioned.

thanks for your efforts via iPhone typing to address my post! 8)
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Offline buginme2

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #3 on: June 19, 2012, 03:35:07 AM »
Here is a link to that study
http://aids-clinical-care.jwatch.org/cgi/content/full/2012/521/1

Paul Sax (the HIV Program director of Bringham and Women's hospital in Boston and  Harvard professor) recently wrote about Nevirapin in his blog.  Read sections 4, 5, and 8 and his summary at the end. 

http://blogs.jwatch.org/hiv-id-observations/index.php/generic-nevirapine-now-available-but-the-big-one-is-next-year/2012/05/25/


Personally I don't buy your doctors reasoning about avoiding Truvada (unless you already have measurable bone loss) and his reason for selecting a 16 year old drug (nevirapine) when there are better options.   You don't think other newer drugs (like any of the options listed as "preferred" US treatment options reduce viral load in semen? That just doesn't make sense.  I would bet its a cost issue more than anything.

By the way.  Here are the US preferred options

The preferred choices for first-line HIV treatment remain unchanged: Atripla, Norvir-boosted Prezista plus Truvada, Norvir-boosted Reyataz plus Truvada or Isentress plus Truvada. Kaletra plus Combivir remains the preferred regimen for pregnant women living with HIV.

http://www.aidsmeds.com/articles/hiv_treatment_guidelines_1667_22162.shtml


« Last Edit: June 19, 2012, 03:40:41 AM by buginme2 »
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline newt

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #4 on: June 19, 2012, 03:46:08 AM »
Ho hum, doctors with pet theories

Chopping and changing combos means facing more potential side effects, and the particular advantages of individual drug's penetration into various body compartments is of completely unproven importance long term, indeed if anything it seems not to matter that much, its the length and consistency of therapy that counts. Clearly, future research may shed a more definitive light on this, but the light bulb ain't brightening quickly here.

It is kinda late in the day too for beginning a primary infection treatment strategy

But it won't hurt, and may even be good if you are up for it.

This said, I think raltegravir is a very good choice for initial therapy as it brings down viral load very quickly. But I'd still rather be on Truvada than Kivexa, even with the concerns about bone density. Nevirapine is under rated especially as a maintenance drug for use when viral load has been undetectable for 6+ months.

Me, my off piste option would be to start with raltegravir and Truvada and switch to boosted darunavir + FTC (ie one half of Truvada, no tenofovir) cos this I personally think is the bees knees off piste option at present and will work for me. But this is also a pet theory even if my doc agrees with it.

1. Doctors can be smart and right, and HIV treatment is not always clear cut in terms of the best vs the good enough

2. I like guidelines because they have lots of research to show the options are safe and effective, and this is definitely non-guideline compliant

3. I have never been on a guideline compliant treatment option except by accident.

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

Offline mecch

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #5 on: June 19, 2012, 05:46:53 AM »
 In my opinion, you are considerting T.M.I. (too much information) from the second doc.  Your important choice is simply - start now, or wait till CD4 protocal.  Make that choice and just go with it.  There are different things involved in that choice, not the long list of h.a.a.r.t. long term considerations in the TMI from the 2nd doc.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Lad_Liam

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #6 on: June 19, 2012, 07:31:28 AM »
thanks, guys. it is TMI... cheers. your suggestions on how to clarify my thinking are great. i'm gonna take the laptop in with this page open and discuss it with the original dr tomorrow.

update: start now Dr has advised by email sent at 9pm to start before Geno And Resistance Test results are known, as it's a week away... hmmm. but earlier tonight i'd been told by my other dr the first genotype testing should be back tomorrow. all this blood of mine out there bouncing around labs. anyway, big convo with the diagnosing dr tomorrow. about long term regiments based on the replies here already. thanks guys
« Last Edit: June 19, 2012, 11:04:55 AM by Lad_Liam »
a new dark passenger joins the ride

Offline Lad_Liam

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #7 on: June 20, 2012, 06:59:37 AM »
Big day. Decided to start tomorrow with the Truvada / Raltegravir and go from there. Feeling more in control. Time to hit Harry the virus on the head. Thanks for the feedback and support once again.  :o  8)
a new dark passenger joins the ride

Offline eric48

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #8 on: June 21, 2012, 05:57:56 PM »
Hi,

1 RAL / Truvada
2 RAL / Kivexa
3 Nevirapine / Kivexa

sounds a pretty nice course of action. I am on Nevirapine / Kivexa. No (much) complaints. I think it is a reasonnable 'maintenance' combo (since anyway, you can not start on this one combo since your CD4 exceed 400)

That being said, there is no (yet) a one combo that makes everyone happy. All have their pros and cons.

Some of the pros for Nevirapine / Kivexa are:
- low cost
- once daily
- (proven) long term tolerability (if you can tolerate)
- best penetration of all
- favorable lipids profile

This once demoted combo is becoming more fashionnable as doctors not only have patients that are treatment naive, but also have a long list of 'older' follow ups.
Doctors who have been following many patients with many different combos, will certainly get a 'sense' of which (older) combos work best on the long run.

My own doc had Never initiated anyone on that combo, but he did based on the very good feedback he gets from those who have been many years on it. 

Many docs do not like it because, the (very rare) adverse effects are pretty bad (albeit reversible). Those docs who are familiar with the management that this combo requires will only recommend to the ones who have the best chances to pass the AE phase.

Consider yourself as a member of the happy few ;-)

Most importantly, take whichever road seems appropriate to you, ONE STEP at a time. there is no rush.

Hope this helps

Eric
« Last Edit: June 21, 2012, 06:00:07 PM by eric48 »

Offline Lad_Liam

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #9 on: June 24, 2012, 08:59:19 AM »
Thank you Eric and other guys for your posts and insight.

I am on day four of truvada and RAL. The first few nights after I took the truvada (blue pill) I had enlarged pupils and felt a bit trippy. Maybe some flatulence for first few days but nothing terrible at all. The RAL (pink pills) are twice a day, and I don't notice anything at all from them apart from feeling fantastic and like I'm sending bad Harry the virus to go sit and be quiet in the corner.  8)

I have an appointment with my dr in a fortnight or so. I'll keep you updated but I am planning to have no serious or permanent side effects, for my body to respond really well to the treatment, and for things to get a whole heap more cheery around here  8)
a new dark passenger joins the ride

Offline mecch

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #10 on: June 24, 2012, 11:12:04 AM »
Good to hear. Thats the spirit!
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Billy B

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #11 on: June 24, 2012, 01:23:42 PM »
Thank you Eric and other guys for your posts and insight.

I am on day four of truvada and RAL. The first few nights after I took the truvada (blue pill) I had enlarged pupils and felt a bit trippy. Maybe some flatulence for first few days but nothing terrible at all. The RAL (pink pills) are twice a day, and I don't notice anything at all from them apart from feeling fantastic and like I'm sending bad Harry the virus to go sit and be quiet in the corner.  8)

I have an appointment with my dr in a fortnight or so. I'll keep you updated but I am planning to have no serious or permanent side effects, for my body to respond really well to the treatment, and for things to get a whole heap more cheery around here  8)


Liam- Hello and I am glad you took the leap. As you see in my sig I also use I&T and I have had very little problems. I used to take the Truvada in the a.m. but I switched to the evening because it made me a little tired for a few hours. I take the meds and hit the bed.
Peace,
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

Offline Lad_Liam

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #12 on: July 04, 2012, 08:46:58 AM »
Thanks Billy and Meech  8)
My mate has nicknamed me 'killer' since staring meds and I like it.  8) ;D

Day 14 today and all going well.  I had some farting issues in first week but that has gone away now. Just settling in kind of symptoms, nothing to worry about. Plus my resistance test came back "fully susceptible" so this bug is set to crumble.

I have been taking the truvada in the evening, but find it hypes me up a bit and keeps me awake I think. Asked my Dr today and she says it's OK to switch it to morning dosages.

I've asked some other members for their experience to come up with the below:

I plan to stagger the time shift, eg. take the usual evening dose today, then two days at noon before moving it to 8am on Saturday. Having just read Billy's comment I'm wondering if it moving it is a good idea, don't want to all asleep in the morning, and I'm not certain it's  what is behind my staying up late at the moment... 

But My pupils are dilated tho after taking the blue pill, bit like a mild party pill, so I kinda figure it might as well be during the day when I can get paid for it and be productive at work.  ;D Plus an ASO treatment officer told me the kidneys can process the truvada easier/better during the day, eg while I am awake and going to the toilet... Blah blah...  I think it could be OK for how I experience the side effects. I think the side effect is decreasing anyway...

Anyhow, it feels great to be nuking Harry the virus and I'm looking forward to seeing an undetectable, or severely slashed result at least, when bloods go out 26 July. 8)

Cheers, Liam
a new dark passenger joins the ride

Offline newt

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Re: seeks feedback on suggested regiment from a 2nd opinion Dr
« Reply #13 on: July 04, 2012, 01:44:38 PM »
Quote
an ASO treatment officer told me the kidneys can process the truvada easier/better during the day

Based on what? This is back of the ceral packet treatment info.

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

 


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