06/10 Starting Viramune (Nevirapine) + Kivexa (Epzicom = 3TC / abacavir)

[eric48]

With 4 parameters I can fit an elephant. With 5 I can make it wiggle his trunk

recommended reading
Dynamics of Cancer : Incidence, Inheritance, and Evolution by Steven A Frank
http://tinyurl.com/cm8blnc

Dynamics are generally speaking less known to the public. No need to read in detail, just browse thru
This book emphasize the use of speeds (time derivatives) and acceleration, just as we did in previous posts, as a framework for better model validation.

Having a model would be more fun if it were predictive: let's give it a try

Forecast for upcoming blood draw (aka ImmunoForecast)

CD4 % around 49
CD4 > 1100 but less than 1300; estimated at 1100
CD8 % around 23
CD8 estimated at 520
CD4/CD8 around 2.1

Still open:
Quiz : In CD4, what means C , D and 4 ?

[Hellraiser]

Quiz : In CD4, what means C , D and 4 ?

Cluster of Differentiation 4

[eric48]

We have not finished. Meds have cured noone (*). And that is the problem

(*) with exception of Viscontis and a handfull of others

Thanks ! Yep ... See:
http://en.wikipedia.org/wiki/CD4

No room on a post like this to explain C and D, but maybe one can easily explain the 4 (in relation to ...

Since my previous post included a prediction and blood test was done May 12, I now know the quality of the prediction exceeds my expectations. In order to set expectations right I have published a foreword to put in perspective how a predictive model should be tested and prove its worth.

Here again there is no room here to publish this (too many numbers), so I have published on the Tumblr account. I am new to Tumblr so there is a learning curve. Also I'll wrap this up into graphs , easier to read, but this takes time ...

www.tinyurl.com/HIVPharmaCure-T1

I'll post the graphs here as well.

Visit to Doc:  UD as usual...
He offers Complera, but, no, I want to stay on Viramune. I am starting using generics (Mylan) and I want to report to fellow Viramune users

May 12 started  Boneozard

Quiz : In CD4, what means 4 ?

Stay tuned : @HIVPharmaCure (pls RT)       Cheers ! Eric
pointer : http://tinyurl.com/HIVPharmaCure-24 (please do not copy, do not highjack, thanks!)

[eric48]

just to add : I have kept this thread active for four years : this is the 4 y. anniversary
Also I'd like to change the quiz question from
Quiz : In CD4, what means 4 ?
to Quiz : In CD8, what means 8 ?  Eric

[ad2san]

I think the name CD4 and CD8 is because of there shape ?

[eric48]

I think the name CD4 and CD8 is because of there shape ?

Took me a hell of a time to figure out what you might mean by 'there shape'
I found nice pics to illustrate the 'shape' thing , which I have on another PC. I ll get to it...

[Saintfranciscus]

Hey peeps,

Let's see if anyone is still active on this topic, which was extremely pleasant to read...

I am on this combination of meds for four weeks now. And all goes well, it seems, well, we'll see that in two weeks after the next bloodtests. The two-weeks-test showed that liver and kidney are doing well.

Maybe someone can reflect on the things that keep me busy.

1. I feel scared a lot more then before. Seems I think a lot about things that can go wrong, anxiety. I can see my fear is silly, but that doesn't make it less unpleasant.
- is it related to these meds?
- anything I can do about it? (Preferably not adding other meds)
- suggestions, thoughts?
- does it get better later on?

2. Anyone takes them before going to bed? How is that? I take them at ninet in the morning now, but after one hour I feel a bit drugged for a while. Groggy is the term I think. Can I perhaps solve that by taking the meds at 0:00 hrs?

3. I am supposed to take my meds within 60 minutes from the same moment during the day, says my doctor. What if I want to switch to another moment in the day, take a double dose or just miss a few hours.

No worries, I will always double check questions and answers with my doctor anyway, but I would like to have a channel to reflect on all of it during this process.

Thanks people. Plz be kind.

[ad2san]

Hi there, I was on this combo.

1) no scare or something like it on my side. Maybe should you talk with a counselor.
2) I always take the med in the morning because I am almost always home at breakfast and have the pills in a hand reach.
3) the 60mn stuff is theoreticall. Don't polite your life counting the minutes, just take your pills when you go to bed.

Cheers

[eric48]

1. I feel scared a lot more then before.

2. Anyone takes them before going to bed?

3. I am supposed to take my meds within 60 minutes

Thanks people. Plz be kind.

Hi there,

I have been overall happy with this combo, and I am still on it. no reasons to change.

I have used Viramune 200mg (twice daily) then Viramune 200 mg (all at the same time, 6 months after treatment initiation), then when it became available, I have used Viramune 400 mg XR, and since they became available here, I am using Nevirapine (generic) 2x 200 mg at one dosing a day.

Because 200mg can be taken all in the morning (or night) or 1 in the morning and 1 in the evening, I could play around to see what is causing what.

I did have extra anxiety (it has resolved since) for quite while and attributed it to Kivexa.

Therefore, in order to get a good sleep I take my meds in the morning. At one point I was taking them very early, but, as I said things have come back to normal, so now, I take any time in the morning.

Virumune has a very long half life. In women taking a one time one pill during baby delivery, it has been observed that it was still detectable in blood one month after the one and only dose.

ABC and 3TC (components of Kivexa) both have shorter half lives in serum but higher than (previously) thought intracellular life.

So the rule of thumb is to be strict on schedule at the begining, as your Dr prescribed, until you are UD.
Then, once UD, you can relax and take any time during the designated half of the day.

There are not too many combos that allow this flexibility and do not have meal obligation, so that one fits my lifestyle.

My immunologic response has been excellent. It takes time, of course... But my numbers are in noway different from those of your average HIV negative person.

Of course, I have had my ups and down, but, I have always kept in mind the comment of one poster in this thread
http://forums.poz.com/index.php?action=post;quote=416424;topic=33062.0

Now, consider yourself lucky to be on it... I have been on MANY other combos, .... This one is just .... a dream come through for me.
I surely hope you can stay on it...
xx hermie

I must say, I am grateful to those who encouraged me by posting in this thread.

[Saintfranciscus]

Thank you two. Very clear info, which makes sense.

I think i'll stay connected to this topic for a while. Feels good.

[eric48]

Yes... feel free to do so... You are living in a 'rich' country where lab test are readily available.

This combo is also used in less rich countries and people rely on the internet to learn about this combo, which, is available everywhere, but gets little media attention (since the original manufacturer is not really interested in the promotio of a molecule that has become generic)

It would be nice, therefore, for the benefit of those who do not have access to more modern drug to learn from the experience of users.

This combo is not widely popular. but this thread is the most viewed in this section of the forum (62.000 views as of today)
So it would be nice to revive it a bit 

[Saintfranciscus]

Deal. I'll post my data here. Always good to reflect on it.

[Saintfranciscus]

I will get my results this wednesday.

Anyone experience weight gain due to these meds or am I eating too much?

[eric48]

Not so much of a problem here, at least for the first 2-3 years.

You may want to be careful though. Rats fed with Nevirapine (aka Viramune) had a tendancy to over-eat.

It takes a while for the liver to adjust to the medication.

From your post, I understand that you are not reporting any rash. So most likely you are on the safe side for this by now.
Your doctor will check you liver enzyme and tell you if it is OK to proceed and ramp up to 400 mg / day (the normal dose)

Once you have passed that, most of the good work is done with Viramune. and is unlikely to be a concern in the future.

You should remain on the watch out for Abacavir hypersensitivity reaction that may appear in the first 2 months. But this is very rare...

So let's see what the doc says about the liver and things will proceed from there.
Keep posting the good news !

Cheers! eric

[Saintfranciscus]

Hey there!

I think I'm passed that. They firstly did a test to see if I am allergic for that substance you are aiming at. And then the step from 200 to 400 mg exactly as I read in your previous posts.

About the hipfatties: I think it's spring probably, I eat too much. I will do more sports then.

I heard somewhere that getting to UD takes longer with this regimen. Is there any knowledge on this? And that the viral load figure can be somewhat unsure due to NRA. I dont even know what that is actually, does this ring any bells?

Again, reading this forum feels good. I have decided to tell no one about all this, but this way I feel i'm not alone at all.

I'm very curious for the CD4 and VL.

Banzai!
Greetz,
Francis

[Saintfranciscus]

Hey peeps,

The doctor said the results are excellent.

Viral load dropped from 141000 in feb. to 1040 now.
CD4 grew, allthough I don't quite understand how this figure works, from 0,33 to 0,60. (Apparently the treshold is 0,40)

So the treatment is going well, liver and kidneys are managing well, and weight gain can be the result of a body that no longer needs to fight an infection as much as before. He called an infection 'an unhealthy way of weightloss' since it burns calories.

Okay that's it. All good it seems. Hmmm... I just realised that I haven't had sex since this all started... Djeez, I'm becoming a nun.

Greetings!

[Saintfranciscus]

Hey,

I have the idea my heart has to work a lot harder. Even when I am lying in my bed  resting I have a heartrate of 80 beats per minute. But it's also the first time in months without stress. That and the meds are potential causes I can list...

Anyone any experience with this?

Greetz,
Francis

[eric48]

Yes... I have had that too... I had periods where this happened for a few weeks, then it went away, then came back. Even at rest heart beat was 100 at times. Doc. did not seem alarmed, though

I don't have this any longer ... Last year I had periods were Blood Pressure was higher for a few weeks , but that has gone too...

[Saintfranciscus]

Aha, thats good to know, thanks...

100 per minute? Damn... It's weird though, last week I had 80bpm this week its all calmer. It has it's 'season' apparently.

Greetz

[eric48]

Now 5 years! and still on the same combo.

Can't see any reason for a change... using Dr Cohen's FOTO was a great help and still doing good in the 4 days ON/ 3 days OFF trial. I do know that I am still UD with CD4 in the 1000, So ... HIV is now really on the back burner.

Working on new plans for 2016. We will see...

[Saintfranciscus]

Well, great! So five years, no serious side effects (can I say that) and a relatively normal life. Cool.

I got new results, put them in the footer of this post.

Life has become normal again, I even found a new job and I actually like it very much. Looking on the difference of persoective between februari and now. Djeez. But I have to say being able to do it by myself and not having the PR-task added to the worries helped a lot. The doc suggested it. It works, I think.

Up till now I told one close friend and I told him that if it ever were necessary he should ask himself if it served a positive effect of some kind to share it. Bit weird, he thought so too. But apperently I wanted to tell someone.

Someone wanted unsafe sex a few nights ago and that was weird. Saying that I prefer to use a condom was easy, but I was wondering what to say  if I wanted to find out if the other person has hiv too...

Is there anybody else reading this other then you, Eric? Just curious. Whoever reads this, be good! 

[eric48]

Is there anybody else reading this other then you, Eric?

Yes, you'd be surprised the number of readers and PMs I get ... This is a combo that is used by 1-2 % of patients in 'rich' countries. But in poor 'countries', where people have moderate access to Internet, sometimes language barriers (they can read, but, may find difficult to post) and restricted access to the meds, there are MILLIONS of Nevirapine users.

Just to take the exemple of Nevirapine, not everyone can stand the drug and that is a fact. But for those who can, then it works and is easy to take.

Recently, some longtime users of NVP (Nevirapine aka Viramune) have switched the Dolutegravir (aka Ticicay), sometimes with a reason some times just because, yes, revisiting meds choice is a good policy, because , then you dilute the hidden side effects that may be there without you noticing it.

Further on, as we age, our doctor prescribe other stuff, such as cholesterol owering drugs, glycemia lowering drugs, etc. and you initial choice, should be revisited.

I am considering such a switch myself... I can expect to live well into my 80', so that is another 30 y. to go and I am certainly not married to this combo. I can't even think that I will not change. I will change, one day... Over the next 30 y. there will come reasons to change and I am glad to see that there are more and more good options on the table. Not all testomonies on that switch are adament, and sometimes people just consider going back to their good old combo.

But so far so good ... So, I am fine with it.

I can see you are doing very well to !

VL = 30 means VL < 50 ! So you know it works. This is not <20 and that +10 may sound frustrating but this is not... I also had a 24 ... So you have reached <50 (which is the success cut off) in 2 months !
And CD4 from 330 to 770. In just 2 months...

Question : Which form of Nevirapine are you using ? Generic? Extended release ? Do you still take twice daily or has your doctor allowed for a once daily dose ?

Look, this is very good! Keep working on it... You will reap the benefits ...

[Saintfranciscus]

Hey Eric,

Well, if we're being read I guess it adds to the pleasure of the forum. Hope more people will join us, that would be nice. 😊 thanks for your kind reply. Appreciate it!

The Nevirapine is taken once a day, called Viramune, extended release. I'm not sure how to check if it's generic, since I don't know what it means.

I asked my doctor why he chose this combo and it fits your desciption: it's effective, easy to use, 'forgiving' - as he calls it, because if you take it later or forget it, there isn't an immediate problem. And no side effects if it fits you. I also asked if it's the price, he said it's also part of it, but not the main reason, since he has the freedom to prescribe as he pleases.

Hope I answered your questions, thanks for your answers too. I have some more...
1. Why are you such a strong supporter, because of your extensive study into it?

2. Once I achieve an undetactable viral load, what does this mean for my blood or sperm infecting someone else? Are there studies into this? I want to research this. 

For now, hugs!

[Saintfranciscus]

Update: Last visit to the doc he measured the level of medicine in my blood in the moment just before the new pills of the day started to work. So they measured the amount of medication in my bloodstream at the lowest moment, furthest away from the new moment of intake. (Djeez I hope this is propper english in some way...  )

That wasn't enough, apparently I am a quick metaboliser, which sounds like I know have super powers, but in this case it's a pitty, because the 400 mg with the extended release are not compatible with that. The level of medicine in my bloodstroom during the last moments before the new pills is too low and this could cause resistence against the meds.

So they thought of switching to another regimen, Truvada was discussed, but before they do that they will try 3 x 200mg tablets. The idea behind this is to create a peek of medicine which will then take longer to extract from the blood.

A new bloodtest is planned, to see if this strategy works.

[Pozitivist]

 Hi eric, i am 48 too, and got the v 6 months ago, and due to rapid drop of my t cells 307 to 201 ( some people are like this doc said though they are new to the v; and unfortunately i am one of them) in three months time my Dr started the truvada stocrin ( sustiva ) treatment.  Efevirenz at the begining  was a real shit especially at the very first three weeksbut now we Are happy together after three months.  😜 my vl dropped from 1500000 to 1000 and cd4 s rose from 201 to 430..  Hope you'll get better with your treatment i can only suggest trust your doctor and ignorance him with every change of your body which alarms you.. Take care;  love.

[Pozitivist]

I ment to say inform him... Sorry... Damn the touchpad.. 😁😜😃😃

[eric48]

... to see if this strategy works.

A bit of history migh help you:
Traditionnally, NVP (Nevirapine aka Viamune immediate release) was used in the following fashion:
2 weeks of boot up at 1 x 200 mg / day
then (after liver enzime screening, etc...), if all goes well, 2 x 200 mg, twice daily, (typically one in the morning and one in the evening, 12 h. apart)

There has been 2 evolutions from that:
A- the 2NN and ARTEN trials demonstrated that , for treatment experienced people, 2 x 200 mg, once daily (taking the 2 pills together) was

better than twice daily. But, the manufacturer did not bother refile FDA approval for this. So this is an OFF-Label usage, that most doctors approve of.
(When are you 'treatment experienced' (i.e. no more 'treatment naive') ? There is no precise definition but, say, 6 months after start of treatment seems reasonnable) : so that makes it a once daily (event though you have 2 week boot up and 6 months of bi-daily)
This can be done with generics or the old Viramune (standard relase)

B- 2 y. ago, The Original manufacturer , Bohringer, introduced a once daily pills (aka Viramune XR), which is an impregnated foam, that dissolve slowly though the digestive track. This is FDA approved and makes it a once daily, as per the registered label. This way the manufacturer can compete with other once daily regimen and retain patents rights for another 20 y. This is not a generic.

For the patient, though, it does not make much difference, if you are comfortable with the once daily OFF label. (my doctor offered it, so that is why I used it)

Throughtout the years, Nevirapine (2 x 200mg) has shown very good long term efficacy.
Is this efficacy retained when you go OFF label ? Yes, doctors have thousands of patients to support that
Is this efficacy retained when you go with the new XR pill ? Well... The pill is recent, so doc was right to question the level of drug.

I used the New XR for a while, but since the OFF label had been succesfull for me, was cheaper, and easier to take, I , just like yourself returned back to the good old 200 mg pills.

With the kind of impressive numbers you are posting, the Viramune XR has not failed you... But your doctor is taking a safer route... Why not... Since you are back to the 'old' technique', and since you are not yet 6 months into treatment, then taking your pills bi-daily may be the best for the time being. And then you can discuss with Doc in order to get back to once daily. The Twice daily should only be temporary.

That is for the practical aspects...

Then the conceptual aspects: your levels were 'low', but the results where good. So 'low' compared to what ? 'low' compared to a 'target' : the target is 4000 ng/mL. But when you dig a bit, you find that authors to not agree on the so called 'target' and some higher and some lower values has been proposed...

That shoud not confuse you... The 3x200 mg should resolve that

Then, you will most likely go back to 2 x 200 mg, once daily OFF label, which in practical terms, for the patient, is a once daily and that is it.

The 200 mg  has generics, which is nice. Further on I found that all generics comply with the same high standards, but some manufacturers make smaller pills (for the same amount of drug). You may want to discuss that with you pharmacist. I chose the smaller I could get and they are indeed very tiny.

[Saintfranciscus]

Thanks for the input, it matches, apart from the moment, they want me to take 3 x 200mg at once.

Keep u posted on how this works. Hugs

[Saintfranciscus]

Update!

So what happened was I started with the 3 x 200 mg Nevirapine (next to the Kivexa) at once, but the problem was I was stoned like a bunnyrabbit for 2 hours after I took it every morning. Now, if you are working at home or just off it's not an issue, but if you have a business meeting you feel awkward. I wasn't listening properly and yawning a lot, basically my body wanted to lie down and rest from the meds. It was a bit like using xtc, which I have dome on some osccasions.

Talking to my assistant-doctor helped. First he measured the blood, which showed the effectiveness of the combination itself. But of course this situation wasnt acceptable. So we switched two days ago back to the 400mg with extended release, added with 100mg exented release and now we will measure if the level of meds in the bloodstream on the lowest moment (before taking the pills) is enough to ensure there will be no resistance development.

The effect in my life is already very good, this dosage makes me feel relatively okay. I still sense the meds, but its not a problem. Let's hope the level on the minimum moment will be enough to keep this new dosage going.

I am doing quite well. Sometimes I am a little worried about this extensive drug usage since normally I wouldnt even tale a paracetamol. I would like to know more about the long term effects and side effects of the combi.

But life is good.

Hugs!
Francis

[ad2san]

Hi there. Thanks for the update. Hey dude you're technically UD (VL 30) ... You are reacting perfectly to the therapy. Take care. Cheere

[Saintfranciscus]

Update with some good news,

So the problem was that the amount of medication in my bloodstream wasn't high enough measured at the moment shortly before taking the med's. That can be a problem on the long run, and the reason my doctor likes these med's is because it's positive features. (No side effects when treatment has been implemented, no stomach issues, effective for a very long time and low costs.)

To do something about that I was switched from Nevirapine 400 mg extended release to 3 x 200mg direct release. The result was that I was druggy during the first hours at work. I take my meds at ten to nine en then I was tired and dizzy till half past ten. It was not an option because the morning meetings in my work (I am but a humble consultancy slave) are important to function properly.

Doc agreed and and after a month we tried a different dosage: back to the extented release of 400mg with an extra pill of 100 mg. Works like a charm: there is no peak of 600 mg in my blood to make me sick and during the med-blood-test my medicine level was above par.

This is very pleasant. Next is the viral load test, in a month, and if that goes well,, I believe the doctor has made the best of a nasty situation

Thanks for all the messages, responses and info I got from some of you. The studies about the llong term effect of this regimen are fascinating and studyinng all the shared info is fun. I am becoming a viral expert of sorts... Since I have decided to do this all on my own, this forum and my doctor are the only places to freely communicate about this. It's valuable to me.

Hugs,
Francis

[heartforyou]

I have been on Kivexa, Viramune and Viread for many years with great results.

Due to the possibility  of Viread causing osteoporosis I had a switch to Tivicay and kivexa. But because of intestinal issues I am now switching to Isentress, Emtriva and Viramune.

I taken my meds when I go to bed, between 11.20pm en 1am. If I wake up within two hours of taking them I can feel some signs of neuropathy.

Good luck

Herm

[Saintfranciscus]

Interesting,

11:20 and 01:00, large window. Seems I dont need to be as punctual as I think I need to be now.

What do you mean with 'neuropathy', would you describe the feeling?

[heartforyou]

I have been doing this since I started once daily meds, about 10years ago. My doctor told me it was fine to have more or less then 24 hours between taking  my meds. As long as I took them every day it could be 25 or 26 hours.

Neuropathy is the feeling of needles sticking in your hands and feet, sometimes very painfull. That's why I said " some signs of". I can feel a light pain and  needling in my hands sometimes, but only if I wake up within two hours of  taking my meds.

grtz

[eric48]

I would like to know more about the long term effects and side effects of the combi.

Just like you, I have read accounts of other issues, such, as lipo or face changes, etc. I have never read any such account in the context of this combo, and that did not happen to me either.

In this publication here:

Pharmacokinetics of toxicity... treatment outcome with Nevirapine ...
http://onlinelibrary.wiley.com/doi/10.1111/j.1742-7843.2011.00780.x/epdf



The graph shows clearly that, once you have passed the initial few months, then the drop out rate for toxicity is very low.

Since you are doing well in terms of toxicity and virologic control, it makes sense that your Doc is making sure that the virologic control is not lost, so that you may remain on this regimen.

There 3 major concerns at initiation:
- liver toxicity
- rash
- virologic failure

With Nevirapine, these concerns are concentrated at the initiation period. (as can be seen on graph)
After months of succesful treatment, risk for rash or of virological failure is so tiny you could say zero.

The risk for liver toxicity is also drastically reduced, although this can happen, and you will be monitored for this.

Long time users are at a reduced risk of liver toxicity...
Yet, one should just be aware of chronic polypharmacy. 3 molecules is already a lot.

But occasional aspirin, or what ever, never raised any problem.

[Saintfranciscus]

Latest testresults: VL undetectable!

[eric48]

Wonderfull ! Congrats!

In this thread here, about Atripla: http://forums.poz.com/index.php?topic=58429.0
there is one comment that tears my heart:

i wish i had known about the foto method.

Firstly because I had learned about the FOTO method HERE, in this very forum. See:
http://crine.org/our-research/research-network/foto/
FOTO is one of the dosage reduction scheme, there are many others.

In our vast local cohort, we now have 25 % of patients who are on therapy, but not on TRI-therapy, they are on maintenance therapy: IP monotherapy, dual therapies, Dolutegravir monotherapy, etc. what have you. And the share is growing fast, as doctors gain expertize.

You need expertize, clinical trials and treatment history, so most dosage reduction schemes imply 'older' drugs. Yet, we have dozens of on-going trials with dual therapies and the most recent are based on the very latest : Dolutegravir. Clinical trials include SWORD1 , SWORD 2 , PADDLE, etc.

For the vast majority of users, 'older' drugs is what they have. Period. In China, 80 % of patients are on NVP (nevirapine) ...

Secondly because readers are too quick to believe that we engage in dosage reduction because of toxicity. This needs to be clarified: 'obvious' toxicity is now rare. I have had none: zero NADA ...The hidden toxicities are still there, for some of us, but not me. Toxicity is not the driving force for dosage reduction. The driving force is mileage. We have 40-50 years to go with ARVs.

A typical senior has 4-3 medications a day. We have 3 on top of that ... You have to be savvy and enter your 40s or 50s with as little cumulative dosage as possible. FOTO is 2 years worth of chemical remission for every 5 years of treatment.

Simple.

NVP is not new, but there are news for you... Read it !

Virological Efficacy of a Reduced Dose of Nevirapine in a Small Cohort of suppressed HIV-1–Infected Patients
http://tinyurl.com/nrcrwlr

[...]Our data also reinforcing the hypothesis, suggesting that lower levels of antiretroviral drug exposure are required to sustain viral suppression
once viral suppression is achieved than when initiating therapy [...]

The contradiction with SanFransciscus account above is only apparent. Initiation preceeds maintenance and users should now consider what 'maintenance' scheme will be available to them before they choose treatment.

Once again congratulations for your new UD status

[zach]

you quote me... totally out of context... with a comment from six months ago, in an unrelated thread

you really are a trip eric

returning to my coffee now

[Saintfranciscus]

Hi guys,

Interesting!


While studying all this I saw the FOTO web page mentions FOTO with Efavirenz, so it is possible to do with Viramune ?


I guess while in maintenance the timeframe of taking meds is'nt as strikt as it used to be. A window of two hours plus or minus is what I read to be ok. Any thoughts on streching it to four?

[eric48]

The FOTO trials dates back from 2006. The first trial was made on 30 patients splitted into 10 /10 / 10 (Efavirenz, Nevirapine, PIs respectively):
It was a success and the long term Nevirapine follow up is published here:

http://tinyurl.com/p83298z

Then they moved on to a randomized small trial. 60 patients, under EFV, ramdomized 7/7 or 5/7. This second batch is dedicated to Efavirenz. Why? Well is is easier to find 60 volonteers with EFV that with NVP...

[eric48]

I don't go to the doctor that often, so there is little to report.

Yet, recently he has been bugging me about dropping Nevirapine and replacing it by Tivicay (Dolutegravir).

I don't know. I am fine with this combo and schedule.

He is trying to talk me into it, but I do not see the point.

May be I am not the only one in this case.

Has your doc suggested to switch to Triumeq ?

[ad2san]

Hi Eric! Glad to read you're doing well.

Well I dropped Nevirapine XR for Isentress some time ago. I worked pretty well but I was taking it 1 x 800 (2 x. 400) a day  so not as written on the package ... so my doc did not like it and switched me to Triumeq as soon as it was available here.

Since then my T4 are boosting (never had so many in the last 20 years) and VL stays UD.

I had no side effects at all (nothing on Isentress + Epzicom/Kivexa and nothing on  Triumeq), my labs are excellent ....


Take care.

[bmancanfly]

Hey Eric, glad you are doing well.

As you may remember I'm also on NVP and have been for quite a while.  I got the same pressure from my doc about switching to DTG. 

I eventually relented and switched. I wish I hadn't.   I had some of the worst side effects I've ever had with any HIV med when I was on DTG.  The worst anxiety and insomnia I've ever had.

I gave it more than two months but I couldn't take it any more. I switched back.

And of course I had to go through the boot up when restarting with the NVP as before. 

I wish I never switched.  I was having no side effects, and my labs were fine.  I think my doc was getting a kickback from the pharma rep to get people to switch over.  The whole thing left a bad taste in my mouth.

I'm back on NVP as before, and still having no problems. (Only taking it six days a week btw)

Chances are you will not have any problems if you switch.  The stats are on your side. However, whether it is a newer drug or older drug,  a portion of the people who take it do have side effects.  When starting a new med you never know which group you will be in.

But if it ain't broke......

YMMV

Best of luck.

[bmancanfly]

P.S. If you do decide to go ahead with DTG, I'd pair it with Truvada/Descovy rather than with 3TC ABV.

[Saintfranciscus]

Hey all,

Two years down the path I take my meds daily and all is back to normal. Have to say the only thing I worry about is the longterm side effects of these meds. If there is any study on that it intrests me, but otherwise I cannot complain.

Greetz,
F.

[eric48]

the only thing I worry about is the longterm side effects of these meds.

Thanks guys for chimming in so fast!

These are things I have learned on this forum...

Long term toxicity is an insidious issue. Often neglected by newbees, but, when it appears it can be a challenge.
Now that we have passed the early toxicity, the only thing that remains a concern is longer term toxicity

Ad2san, has reported this:

Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT 

I would like to avoid the stress of a switch...

bmancanfly has me pretty convinced that Tivicay + Truvada is an alternative option that I would rather like to keep it for later (especially after truvada Light is available here)

Back in the days, there was a discussion, here, and even a paper on POZ:
https://www.poz.com/article/hiv-efavirenz-intermittent-16959-8019

Dr Cohen has me pretty convinced that we can use the long half life of NVP (and others in the combo) to our benefit.

Now, I read , in this forum, that bmancanfly is back to NVP/3TC/ABC and has even entered the FOTO schedule

FOTO users are very very few, yet, NVP is right on for this, and as bmancanfly points , this is a matter of mileage. I hope that by using less of the combo I like, I can use it longer: I have another 30-40-50 years to go!

So milage is the new concern (and the only one, for me)

[eric48]

Hey,

Nothing real new... Users of this combo are not that many, but, hey, we are doing good.

so HAPPY NEW YEAR everyone!

[eric48]

News are scarces, but there are some... Here is one...

While browsing through an interesting session at IAS 2017:

Do We Need Triple Therapy for Everyone for Life?

http://programme.ias2017.org/Programme/Session/8

I found a presentation that can be downloaded here:
http://programme.ias2017.org/PAGMaterial/PPT/71_3945/TURKOVA_IAS2017_SCT%204-5%20days%20a%20week_25072017.pptx

This is upmostly interesting for us, under NVP, since it validates FOTO to which we are elligible.

Furtheron, it confirms, on slide 20, what had transpired through the grape vines:

FOTO is now authorized in French HIV Guidelines