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Author Topic: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???  (Read 9130 times)

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Offline wishful

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  • I am pretty content nowadays..Life is gud..
Im TERRIFIED..I have been taking the same combo for over 7 years now and my cd4 are 1400 (last count) n ive Been UD just as long..WTF??..If it aint broke dont fix it right??...Im scared of being on Protease Inhibitors...:-(..Not feeling this change at ALL..I told doc i was scared tho..but i also trust him but im worried to death.....Will body change now??..Will I be still reamin ud and with such a high cd4 count??..i dont want to change but he swear that this new combo is better for me in the long run eventho nothing is wrong with any of my organs now.....UUGGHH... I aslo want to eithe get my tubes untied or have IVF n idk how this combo will affect my potential baby......
Live life to the fullest...

Offline Ann

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #1 on: February 08, 2011, 12:21:48 pm »
Hi Wishful,

I hope you don't mind, but I moved your thread from the Women's forum into the Treatment forum because you'll get more replies here.

You can read about which meds are used in pregnancy by clicking here.

You can read about all the meds by clicking here.

Is your doctor talking about putting you only on Prezista/Norvir? That's essentially monotherapy. You should be keeping the Truvada.

Hopefully Newt will see your thread - he really knows his stuff when it comes to meds.

Ann
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Offline Billy B

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #2 on: February 08, 2011, 02:05:15 pm »
Im TERRIFIED..I have been taking the same combo for over 7 years now and my cd4 are 1400 (last count) n ive Been UD just as long..WTF??..If it aint broke dont fix it right??...Im scared of being on Protease Inhibitors...:-(..Not feeling this change at ALL..I told doc i was scared tho..but i also trust him but im worried to death.....Will body change now??..Will I be still reamin ud and with such a high cd4 count??..i dont want to change but he swear that this new combo is better for me in the long run eventho nothing is wrong with any of my organs now.....UUGGHH... I aslo want to eithe get my tubes untied or have IVF n idk how this combo will affect my potential baby......

Hello Wishful- Why is your doc wanting to change your meds?
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 wishful

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #3 on: February 08, 2011, 02:15:36 pm »
Hey guys, Ann disregard pm..lol...Umm yeah he just said the 2...and that one boosts the other..he did say its like takin one med...

He says in the LONG run this is better than the viread in the truvada as it causes bone and liver damage..eventho all cbc have come back normal..u/d and high cd4.. but im waaay skeptical>>>
Live life to the fullest...

Offline Miss Philicia

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #4 on: February 08, 2011, 03:23:47 pm »

He says in the LONG run this is better than the viread in the truvada as it causes bone and liver damage..eventho all cbc have come back normal..u/d and high cd4.. but im waaay skeptical>>>

Uh, well it can cause this but seeing as how the large majority of patients are on Truvada (in the industrial world) he's being way overly alarmist.

There was also just today this blurb (note small study) showing that it's possible that it's just HIV itself causing bone issues and not one particular medication.  It's just that with so many patients on this one medication it's easy on the surface to make a connection without proving it to be so.  I've been on the viread component of Truvada for almost a decade with no problems, as have many other people.

http://www.aidsmap.com/page/1637230/

But anyway if he's just switching you to Prezista and Norvir with no NRTI class med that's not a complete recommended regimen.  Are you sure you're really clear on what your doctor told you?
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Offline eric48

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #5 on: February 08, 2011, 07:07:28 pm »
Hi,

I fully sympathizes with your concern.

That being said, my general experience with doctors is that they have a true and genuine concern about their patient's health.

Therefore, reassessing your long term risk in view of your personal (and changing) profile and new science about the long term risk associated with any combo, is, per se, not such a bad idea.

From time to time asking yourself what other job you would like if you'd loose your current one (or house or whatever) is not such a bad idea since it leaves you time to review the meds, their risk profile, etc.

Where I live, being on V&T would grant you a yearly follow up (actually more than yearly for some markers) on some parameters in order to reassess the risk/choice

Viramune grants me all these labs on ALT, AST, and other liver makers
we are also checked for lipids, sugar, infections, (VHC, ...), bone density, Vitamin D, etc. etc.
and more extra cool stuff from a cardiologist (since I am using abacavir)

The list of markers under surveillance maybe 20 to 30. That gives a baseline and any evolution can be monitored and risk management reconsidered on a personalized basis.

I do not know if you have such a close and complete surveillance.

If you do (or have in the past), it is worth collecting these on a chart or table and discuss calmly with your doc.

Most likely he is not ORDERING but considering a switch. Here, where I live, at least, patients have the final say...

You are under shock. Recollect yourself. Prepare for your next doc visit: make (or update) a list of your current concerns, risk profile.

put things in writing. Have a page with your questions and write down your doc's answers.

If this switch (or any other) is a bad idea (or a good one) a proactive, documented discussion with your doc will help you and he adjust and reconcile your views.

Personally, almost like you, I am on Viramune and Kivexa. Currently, I know that my switch options (as of today) are viramune/Truvada or Isentress/Kivexa.

I try to educate myself as much as I can on MY current combo, keeping an eye on these 2 alternatives.

I like my combo because it matches my profile and concerns. With my profile, I would feel very comfortable with your combo too... so I understand the feeling and emotional stress.

a switch (especially a switch of class, as opposed to a switch within the same class) always carries a risk (virological/tolerence, etc).

Should you want to corner your doc and oppose the switch, you have the option to wave the red flag of virological/tolerence risk and ask (or search by yourself) for hard data on switch studies before making a decision.

Quite a few posters on this forum complain that they hardly get any attention from their doc. At least you do (apparently).

This is a good start

Cheers!

Eric
« Last Edit: February 08, 2011, 07:13:44 pm by eric48 »
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline drew50

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #6 on: February 11, 2011, 06:15:07 am »
I've recently been switched also and have dropped Truvada from my regime - no triple therapy any more for me but a sort of reinforced double therapy. I now just take Prezista 600 2x a day, Norvir 100 2xday and Isentress 400 2x a day and it seems to be going well.
THE REASON for my switch was that Truvada was causing noticeable damage to my kidneys and is not quite as innocent as the manufacturers and many doctors make out. Since I stopped the Truvada my kidneys have recovered to normal levels.
Hope this helps with the overal picture.
PS In the Netherlands more and more patients are being transferred successfully from triple therapies to similar regimes as i have - it seems to be a trend!
« Last Edit: February 11, 2011, 06:17:34 am by drew50 »

Offline newt

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #7 on: February 11, 2011, 09:32:40 am »
Hello wishful

In the long run who knows...

There is not long run data for Prezista and no long run data for reduced therapy using just a boosted PI, indeed the short run data on this shows an ever so marginal increase in CNS viral load, so who knows where that will go.

If you current blood test results are fine, and your kidney function good, and bone chemisty profile good, then changing is a moot point.

I see no pressing evidence that this is a really important change to make, unless you want to do it.

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

Offline wishful

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #8 on: February 11, 2011, 01:55:51 pm »
Thank You All!! I called my doc back and asked for sure he wants just the Prezista nd Norvir...I even asked his nurse..( ive gone to this doc for almost 8 years and even known him longer as my mother was also poz and treated by him) I trust him...But i was very scared of the CLASS change...Liike my body changing , etc. etc. All my lab tests are normal...no problems or even symptoms of HIV EVER...He says its ok if I continue on my current regimine..n i go every month to I am very closely monitored...From the research ive done, Monotherapy is an up n coming trend that patients seem to be doing well on....But i was already doing well so thats my biggest problem....I am going to continue with my regimine and write down my concerns n issues for our next visit....Dr. Karabalut is a wonderful doc tho...Thanks again for all your replies and i will def update if i make the change and let u know how it goes....idk y but PROTEASE INHIBITORS..just scare me..lol
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Offline newt

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #9 on: February 11, 2011, 04:19:41 pm »
Protease are not necessarily horrible. It really does (I have concluded, so there) depend on the person. Some people get on with NNRTIs some with PIS.

Sure the early PIs were horrid but the new ones are pretty good. I have only ever taken a PI and have never had the squits (bar the odd day), me cholesterol is normal and I have not turned into Mr Burns (apologies to people tied to the loo etc).

To be honest if you have a working combo (which you do) and there are no tests throwing up concerns, for me, a change would be a hard sell.

PI monotherapy is an interesting concept which I hope will be proved workable as long-term option. It is currently the subject of further study, including a large trial in the UK. When the results are out from this, if I like them, I may go for it. I may even enrol in the study if I can get out the lumbar puncture bit of the testing.

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

Offline Matt39

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #10 on: February 20, 2011, 05:55:15 am »
Thank You All!! I called my doc back and asked for sure he wants just the Prezista nd Norvir...I even asked his nurse..( ive gone to this doc for almost 8 years and even known him longer as my mother was also poz and treated by him) I trust him...But i was very scared of the CLASS change...Liike my body changing , etc. etc. All my lab tests are normal...no problems or even symptoms of HIV EVER...He says its ok if I continue on my current regimine..n i go every month to I am very closely monitored...From the research ive done, Monotherapy is an up n coming trend that patients seem to be doing well on....But i was already doing well so thats my biggest problem....I am going to continue with my regimine and write down my concerns n issues for our next visit....Dr. Karabalut is a wonderful doc tho...Thanks again for all your replies and i will def update if i make the change and let u know how it goes....idk y but PROTEASE INHIBITORS..just scare me..lol

If you feel fine on your current meds, and all your relevant bloods are fine, then it is *your* health and *your* body, so if you want to stay on your current regime then stay on it.

Just on the question of Tenofovir (Viread) and bone mineral density loss, Protease Inhibitors are equally implicated with Tenofovir for BMD loss and that was made plain by Professor Mullen at the 2010 Worlds Aids Conference in Vienna.

If you haven't had one in the last 12 months, then get your Doctor to order a DXA (Dexa) scan - it is the *only* way to get an accurate picture of your bone health and everyone on ARVS (and especially PIs and/or Tenofovir) should have that scan every 12-24 months.

If your liver function tests are consistently normal, then clearly you shouldn't worry.
However, if you want to assist the day to day detoxification of your liver in a natural way, then use either Milk Thistle (Silymarin) in 80% liquid form by mixing 1ml with a little water and take with meals 2-3 times a day, or a tea infusion or tincture of Liquorice Root once or twice a day.

Offline newt

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Re: Being Switched rom Truvada/Viramune Combo to Norvir n Prezista???
« Reply #11 on: February 21, 2011, 01:49:42 pm »
Quote
Thank You All!! I called my doc back and asked for sure he wants just the Prezista nd Norvir...I even asked his nurse..( ive gone to this doc for almost 8 years and even known him longer as my mother was also poz and treated by him) I trust him...But i was very scared of the CLASS change...Liike my body changing , etc. etc.

He may be smart, he may be 1 cent short of a dollar. What are you happy with?

You will not turn into Mr Burns on Prezista monotherapy.

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

 


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