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Author Topic: Review my stats and comment on treatment options (please! ;D)  (Read 3601 times)

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Offline blue1

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  • Posts: 15
I got my genotype results today and I'm kinda upset about it.  Here they are:
Resistance associated RT Mutations: M41L, E44D, L210W, T215D
Resistance possible to:
- stavudine
- tenofovir
- zidovudine

See my signature for VL/CD4 stats.

I was really hoping that Atripla would be an option for me.  Why?  Because it is 1 pill a day, I've read that the side-effects are much less severe than other options, and that it is readily available online in generic form if all else fails (as far as affording meds).  But since I have POSSIBLE resistance to tenofovir then Atripla is not an option.  So what are my options?

My doctor is mulling over the pros/cons of starting treatment with her colleagues and will let me know in 2 weeks.  Her first line of defense is usually Atripla .... DOH.  She said next up would be something like: Abacavir, lamivudine, and efavirenz.

She said that I did not have hypersensitivity to Abacavir according to the test results.

A friend of mine recommends raltegravir, ritonavir/dauranovir, and Epzicom.  He says that I might also have a sequestered 184 mutation that is showing no mutation now because it has been a while since infection.  So, abacavir, lamivudine, and efaveranz combo will only have 2 active drugs and that isn't good enough to prevent further resistance.

I'm very confused now... Atripla seemed so straightforward ...but now that is not an option on the table, I'm left scrambling trying to understand the other options available to me. 

I've also been told that mutations can REVERT! to wild-type.  So does that mean that perhaps sometime in the future I can take Atripla if the mutation I have reverts and the HIV I have is no longer resistant to tenofovir? 

Seeking advice from people who have been there and know what I'm talking about :P

Thanks  :D
 :o

« Last Edit: March 12, 2012, 05:38:39 AM by blue1 »

Offline buginme2

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #1 on: March 12, 2012, 02:34:41 AM »


My doctor is mulling over the pros/cons of starting treatment with her colleagues and will let me know in 2 weeks.  Her first line of defense is usually Atripla .... DOH.  She said next up would be something like: Abacavir, lamivudine, and efavirenz.


Thanks  :D
 :o

What is your doctor mulling over?  If your in the United States treatment guidelines are that you start at <500 cd4 count (even UK guidelines are <350) so you've been at the "need to start meds" stage for quite awhile.

I have heard of people starting with wild type virus and then discovering a later resistance due to the medication suppressing all the wild virus but leaving the resistant virus to replicate.  It sounds like you are asking if the opposite can happen.  I would think that would be unlikely. 
Don't be fancy, just get dancey

Offline blue1

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #2 on: March 12, 2012, 02:55:40 AM »
What is your doctor mulling over?  If your in the United States treatment guidelines are that you start at <500 cd4 count (even UK guidelines are <350) so you've been at the "need to start meds" stage for quite awhile.

Yes, I know :(  I'm in Australia.  Still even here the cuttoff is 350 so I don't know why she is hesitating.  I will return home to the USA in 2013 and have no income during the transition.  I'm semi afraid that I will have trouble obtaining meds during this transition...unless I can buy from a website recommended on pharmacychecker just to have backup supply during the transition/move...  Stressed about it :( 

Offline Matty the Damned

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #3 on: March 12, 2012, 03:00:21 AM »
Yes, I know :(  I'm in Australia.  Still even here the cuttoff is 350 so I don't know why she is hesitating.  I will return home to the USA in 2013 and have no income during the transition.  I'm semi afraid that I will have trouble obtaining meds during this transition...unless I can buy from a website recommended on pharmacychecker just to have backup supply during the transition/move...  Stressed about it :(

Yo. Skippy here.

Are you a permanent resident or citizen?

MtD

Offline blue1

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #4 on: March 12, 2012, 05:32:48 AM »
Are you a permanent resident or citizen?

I am neither of Australia.

I am a citizen of USA living in Australia.
 :o

Offline Matty the Damned

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #5 on: March 12, 2012, 05:41:42 AM »
I am neither of Australia.

I am a citizen of USA living in Australia.
 :o

Are you able to access Medicare or are you getting your HIV services through a Sexual Health Clinic?

Eligibility for PBS medications maybe what is fucking you up here.

MtD

Offline blue1

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #6 on: March 12, 2012, 05:56:14 AM »
I have private health insurance as required by my visa.   They pay a maximum of $1000 per year for prescription meds.  That is laughable I'm guessing.

Not eligible for Medicare because I'm not Aussie (citizen or PR).  Not eligible for PBS probably either for same reason.  So, I will probably return to USA in 2013.  In the meantime I can try to buy generic meds online ... if only I could figure out what would be my best option..  which is why I started this post to get some ideas about what would work for my particular situation.  I know that I will highly consider the advice of my doctor, but would also like more opinions from fellow forum posters because you guys are more likely to tell me how it is..and tell me things my doctor might not mention for various reasons.

Offline Matty the Damned

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #7 on: March 12, 2012, 06:02:36 AM »
I have private health insurance as required by my visa.   They pay a maximum of $1000 per year for prescription meds.  That is laughable I'm guessing.

Not eligible for Medicare because I'm not Aussie (citizen or PR).  Not eligible for PBS probably either for same reason.  So, I will probably return to USA in 2013.  In the meantime I can try to buy generic meds online ... if only I could figure out what would be my best option..  which is why I started this post to get some ideas about what would work for my particular situation.  I know that I will highly consider the advice of my doctor, but would also like more opinions from fellow forum posters because you guys are more likely to tell me how it is..and tell me things my doctor might not mention for various reasons.

$1,000 per annum? And you're outside the system?

That's gonna buy you five-eighths of fuck-all, my friend. :(

I'm no legal expert, but my guess is trying to import prescription medications into Australia is going to earn a "Whiskey Tango Foxtrot?" from Her Majesty's Quarantine and possibly the Federal Police.

Two thoughts occur:

Contact the US Embassy;
Contact The Australian Federation of AIDS Organisations

I've no doubt that they can advise you on ways forward through this.

If needs be, drop me a PM and I'll see what I can do to assist you. :)

MtD
(Who is connected)

Offline BM

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #8 on: March 12, 2012, 06:17:16 AM »
I've also been told that mutations can REVERT! to wild-type.  So does that mean that perhaps sometime in the future I can take Atripla if the mutation I have reverts and the HIV I have is no longer resistant to tenofovir? 

It doesn't work like that. HIV inserts its genetic material in our cells, occasionally very long-lived cells, so that drug resistance can become "archived". Many resistance mutations make the virus less fit so that it replicates slower. In the absence of drug therapy, the virus can revert to wild type, but the genetic material for resistance will still be archived away, only showing itself in the presence of therapy. This is most likely what happened with my first combo.

Offline blue1

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #9 on: March 12, 2012, 07:53:08 AM »
It has been very informative to read the "Preferred and Alternative Antiretroviral Regimens for Antiretroviral Therapy-Naive Patients" at http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf

I recommend the tables on page 43/44 to anyone wondering about treatment options.

Unfortunately for me, due to my possible resistance to tenofovir, I am not able to use any of the preferred treatments because they all include tenofovir :(  So, I'm stuck with the "Alternative" choices. 

Seems like Epzicom (ABC + 3TC) and Sustiva (EFV) will be my poison of choice.

I'm not happy about the neurological side-effects of Sustiva.  I am generally low energy and high anxiety (social nerves).... so Sustiva might intensify my general bleh-ness to full on depression or make me feel more anxious around coworkers tec.  But, I also read that these SEs tend to subside after a few weeks.  So I think it is worth a shot to try ABC + 3TC + EFV.

Thoughts?


Offline newt

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  • the one and original newt
Re: Review my stats and comment on treatment options (please! ;D)
« Reply #10 on: March 12, 2012, 08:01:29 AM »
Hello

The mutation sequence you describe confers some reduced effectiveness for all nukes. Whether this matters for tenofovir is a moot point. There is a more than good chance it will work. But it may not, which in the long term will make the resistance to similar drugs get worse.

You may indeed have an archived 184 mutation. If this situation it would be an advantage since it makes tenofovir extra powerful and may therefore negate the effect of the other mutations.

So, how much do you want to bet?

If you want to try efavirenz/tenofovir/3TC (Atripla) or efavirenz (Sustiva) plus abacavir/3TC (Epzicom) first line this is an option, but be prepared for it not to work well enough, and for a swift (like within 1-2 months) change if your viral load doesn't drop below 500-1,000.

Alternatively a strong PI like darunavir (Prezista) as the key drug may work better, and as has been suggested raltegravir (Isentress)/darunavir as the key drugs is also an option << you will want 1 or 2 nukes with this I guess.

Hope this helps.

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

Offline blue1

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  • Posts: 15
Re: Review my stats and comment on treatment options (please! ;D)
« Reply #11 on: March 12, 2012, 08:20:44 AM »
If needs be, drop me a PM and I'll see what I can do to assist you. :)

MtD
(Who is connected)

Thanks  :)  It is good to have a feeling of support and that I have lots of options  ;D

Offline Matty the Damned

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #12 on: March 12, 2012, 08:30:18 AM »
Thanks  :)  It is good to have a feeling of support and that I have lots of options  ;D

Anything I can do. I should add that may be limited, but let's see. :)

MtD

Offline blue1

  • Member
  • Posts: 15
Re: Review my stats and comment on treatment options (please! ;D)
« Reply #13 on: March 12, 2012, 06:29:40 PM »
Hello

The mutation sequence you describe confers some reduced effectiveness for all nukes. Whether this matters for tenofovir is a moot point. There is a more than good chance it will work. But it may not, which in the long term will make the resistance to similar drugs get worse.

You may indeed have an archived 184 mutation. If this situation it would be an advantage since it makes tenofovir extra powerful and may therefore negate the effect of the other mutations.

So, how much do you want to bet?

If you want to try efavirenz/tenofovir/3TC (Atripla) or efavirenz (Sustiva) plus abacavir/3TC (Epzicom) first line this is an option, but be prepared for it not to work well enough, and for a swift (like within 1-2 months) change if your viral load doesn't drop below 500-1,000.

Alternatively a strong PI like darunavir (Prezista) as the key drug may work better, and as has been suggested raltegravir (Isentress)/darunavir as the key drugs is also an option << you will want 1 or 2 nukes with this I guess.

Hope this helps.

- matt


Yes, that does help.  Thanks. 

The Stanford Database (http://sierra2.stanford.edu/sierra/servlet/JSierra) confirms what you said about intermediate resistance to nukes.  That really scares me now.

My friend is still recommending raltegravir + dauranavir/ritonavir (or atazanavir/ritonavir) + Emtricitibine/tenofovir.

He says it is best to go with the most potent option first.  My doctor said she saves the intagrase inhibitors for a last line of defense.  My friend says that is an old way of thinking.  I'm not sure what to think but I do trust my friend (who is a HIV specialist) more than a random doctor (who is a sexual health specialist).

I'm worried that if I start with the RAL first and it stops working then I'm left with no good options except things that make me shit myself or vomit all day...  very sad today   :'(  and now I get to go to work.. YAY!

Offline newt

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  • the one and original newt
Re: Review my stats and comment on treatment options (please! ;D)
« Reply #14 on: March 12, 2012, 06:45:41 PM »
darunavir/norvir plus tenofovir/emtricitibine is very strong, your viral load is modest and this should be good enough. The tenofovir resistance, while details are unknown, is likely to be 80-90% in favour of this drug working well enough/10-20% not. It's utility will be higher in a combo, especially with a strong drug like darunavir.

Adding raltegravir at the beginning is a good and modern choice. Agree, tis a valid point saving something that will work for later. But more agree tis best to use the most potent option first, for this will work better and therefore endure. Also, in terms of limiting further resistance, a darunavir/raltegravir combo will bring your viral load down real fast and this is a key thing to do. On this combo, once your viral load is undetectable you can think about simplifying if you like.

- matt


Edited for missing raltegravir
« Last Edit: March 13, 2012, 04:01:30 PM by newt »
"The object is to be a well patient, not a good patient"

Offline blue1

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  • Posts: 15
Re: Review my stats and comment on treatment options (please! ;D)
« Reply #15 on: June 20, 2012, 06:30:15 AM »
Just a quick update on my meds status..I'm an American living and working in Australia.  Since I'm a temporary resident, I cannot get meds through their health system.  I do get free doctor visits at a Sexual Health Clinic.  And I have $1000/year limit on prescription meds from my private health insurance.  Luckily, I have a friend who is able to provide medications for me from USA.

This week has been rough for me.  I nearly freaked out (felt like crying for no reason just when it was my turn to talk) during a meeting at work.  Then, I met a new (very attractive) coworker and when he asked me what I do, I blushed so bad and wished I could escape LOL  These social speedbumps (not failures!) have made me feel awkward at work.  So, I skipped work today because I've noticed I'm not responding to social stress very well... must be because of underlying stress...so I decided it is maybe best to just stay home.  But, I cannot avoid work forever.   I'm afraid that tomorrow I'll start crying at the after-work party.  I'm a guy...so crying in public is doubly bad... crying at work would be a nightmare....  But, I'm going to force myself to go.

I got the results of my most recent blood work today... CD4 is 270  :'(

I have truvada in my medicine cabinet, that I ordered online.

I'm waiting on the other meds (raltegravir, darunavir, norvir) which have been held up in customs.  They might try to charge me taxes/duty on importing them, although, after studying the Australian customs website for hours, I believe that importing meds <3 month supply for personal use is duty free.  We'll see.  At this point I need to start ASAP.

I'm kinda freaked out right now that my CD4 is so low.  It is past due to start ART!  I've been told that the combo I'm starting with is strong and really good... Truvada + Prezista + Norvir + Isentress.  I hope to start within the next week.  Please wish me the best..

 ::)

I don't respond to many posts, but I do read them and I just have to say that you all are so supportive :)

Offline blue1

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #16 on: July 03, 2012, 05:06:38 AM »
Started meds today!

Taking  Isentress + Prezista/Norvir + Truvada.
« Last Edit: July 03, 2012, 05:11:59 AM by blue1 »

Offline Lad_Liam

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  • it's a hitchhiker, not a hijacker
Re: Review my stats and comment on treatment options (please! ;D)
« Reply #17 on: July 04, 2012, 09:07:30 AM »
Hi blue1,

Thanks for sharing your story. Glad you got the pills. Dr Slap for the delay.

Welcome to the bug killer cocktail party.  8)

I'm on Isentress + truvada, day 14 now. Loving it. I have had no major side effects just a bit of farting for the first week, I think from the truvada. But it only lasted a week.

good luck  ;D
a new dark passenger joins the ride

Offline blue1

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #18 on: July 12, 2012, 12:21:05 PM »
I'm on day 10.. so far so good.  No side effects that I've noticed.  *knock on wood*
 ;D ;D ;D


Offline Mrmojorisin

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Re: Review my stats and comment on treatment options (please! ;D)
« Reply #19 on: July 12, 2012, 01:12:38 PM »
Good to hear that, I am on almost the same meds for a little over two m.onths now....a little gas from time to time are the only side effecfs
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%--Dropped the Bactrim
05/01/20140CD$-370/VL-UD       23.5%

"arrrrhhhhh ahhrrhhhhh aaaarrhhh"- Chewbacca

 


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