Switching from Epzicom + Sustiva to Reyataz?

[komnaes]

Hi guys,

I have been on Epzicom + Sustiva for about 2 years now.. very good numbers since (see my chart below) and stable. Now the only issue seems to be side effects - mood swings, nightmares and problems with sleeping in general. They are not as bad as when I first started and to make sure I am fine I have been seeing a therapist; but I gotta say I am not entirely sure I have those mood issues under control - like being very irritable, difficult to concentrate, and though rarely sometimes depression - and I am also not entirely sure if they can all be blamed on Sustiva.

My doc now suggested maybe it's time to consider switching, and he recommended 400mg of just Reyataz (no booster, just 2 200mg capsules daily). My questions are:

- Has anyone done this switch (Epzicom/Sustiva to Reyataz)? What is your experiences?

- For those that are currently on this regiment (i.e. just 400mg daily of Reyataz), what are the side effects?

- What should I pay attention to when deciding to switch? Are there any (better?) options while having no resistant issues to switch to from Epzicom + Sustiva?

Thanks, Shaun

[Ann]

Shaun, are you talking about unboosted Reyataz monotherapy? There was a thread here about it in '07 - Reyataz monotherapy but this was Reyataz boosted with ritonavir (Norvir).

Personally, I wouldn't trust Reyataz monotherapy boosted and definitely not unboosted. Could you not switch to Reyataz and keep the Epzicom? I think that would be safer.

[Ann]

Also - Gemini was on boosted Reyataz monotherapy for a time, but she stopped due to kidney stones. (link here)

There are other mentions of boosted Reyataz monotherapy here, and here, and a study cited at aidsmap here.

It kinda sounds promising, but I don't think I'd trust it - particularly unboosted.

[komnaes]

Hugs to you and thank you so much Ann,.. I didn't have the time today to go through old posts, so a BIG thanks for digging them up for me.

Yes, my doc was talking about unboosted monotherapy of just 400mg (2 capusles) of Reyataz. We didn't touch on the boosted and other options as I didn't have the information with me; so we just agreed to revisit the issue after my next round of test in 2 months.

I did ask him whether it would be enough without any "booster", but my doc just said since I have no resistant issue at all so it could still be a safe option. Now I wonder if he's in that school that believe a boosted single drug monotherapy should be enough to keep my VL < 50. I also noticed other side effects the kidney stone issue, but it seems it can be mitigated with a lot of water while taking the pills.

In any case, I want to investigate the next few weeks on what other options (other than Reyataz) I have if I want to change from not taking Sustiva.. any more inputs?

Thanks in advance, Shaun

[newt]

Hello

Several thoughts...

Unboosted Reyataz on its own is almost certainly a very bad idea. I am surprised a doc even suggested it.

Even boosted Reyataz on its own is not such a good idea.

In both cases, additional drugs are needed to penetrate the central nervous system, cos Reyataz isn't so good at this, and long-term this is likely to be important.

I can't see what's wrong with unboosted Reyataz plus the Epzicom. Or even boosted for that matter.

Unboosted Reyataz is probably better taken 2 x day. There is a small but persuasive study on this where 22% of people (6 out of 27) did not achieve viral suppression. Furthermore, 2/3rd of the people on the once a day dosing had very low drug levels, some below the recommended effective level at the end of the dose. See: http://i-base.info/htb/14243

There are two monotherapy options that are probably sound for maintenance in many people with careful monitoring, but they both involve boosted PIs . Namely Kaletra (hmm...) and boosted Prezista.

There are many straight switches for Sustiva, some fashionable, some not. What exactly is your doc, and more importantly you, trying to achieve by the switch?

- matt

[komnaes]

Just one of the few I needed to hear from.. thanks Matt.

My issue with Sustiva is mainly the continuing nightmare problem and how it affects my sleeping.. and very possibly depression and personality changes, though the latter I am not sure I can blame Sustiva conclusively. I have been seeing a therapist for over 2 years now with significant improvement, but the dreams are still troubling. I almost never have a dream I can remember after waking up that can be considered "neutral" (i.e., not containing either weirdly gruesome "visual" elements or "feelings" that not just reflect but also magnify fears, anxieties that I am struggling with in real daily life), not to mention pleasant.

Like many I used to enjoy taking naps on Sunday or holidays, now I just can't for the fear of having dreams. So after two years, even with the therapy, I do feel I am still getting more irritable, jumpy, etc. My worst fear is the potential personality changes that I may even not aware of, yet.

So would you think it's worth trying to get rid of Sustiva, and as you said replace it with Reyataz?

Thanks, Shaun

[newt]

Yes, I think it's worth a shot to swap the Sustiva for something else and see what happens. If you swap without a break then you can always go back on it if need be.

Since you have no resistance issues the choice of drugs is mainly going to be governed by your current liver, kidney and heart health.

The simple alternatives to Sustiva are:

Unboosted Reyataz (probably 2 x day unless you have access to therapeutic drug monitoring to test drug levels), 400mg total dose
Boosted Reyataz 1 x day, 300mg total dose
Boosted Prezista 1 x day, 800mg total dose

These boosted PIs use 100mg Norvir, and it is possible to use less for Reyataz.

Viramune 1 or 2 x day if you have no liver issues (an under-rated drug)

Isentress 2 x day
Selzentry 2 x day if you have the right type of HIV (there is a test, called a tropism test, to work this out)

There are more options but that's enough I reckon, and the most up-to-date options.

Personally, having done Reyataz and Prezista, I find Prezista easier, and even with Norvir my lipid profile has improved slightly since I switched to Prezista.  I have many friends who swapped Sustiva for Viramune and really like it, doing well, had no rash (there is a caution with Viramune when starting this drug with higher CD4 counts but doesn't seem to apply to people with undetectable viral load).

If you start with unboosted Reyataz and it isn't quite good enough (ie viral load don't stay 50 or less) you can always add Norvir in or switch to boosted Prezista or something else. The risk of resistance is practically nil with a 3-4 month viral load monitoring cycle.

I would deffo keep some nukes, Epzicom or Truvada according to taste. I would only do monotherapy with boosted Prezista just now.

Hope this helps.

- matt

[eric48]

Hi,

If you would go for Epzicom and Viramune you would become one of my pill buddies.

http://forums.poz.com/index.php?topic=33062.0

Just a quick note as I am on the road...

1- for treatment experienced, viramune has shown better outcomes when taken once daily, so most likely you can discuss this option with your doc.

2 - I never had bad dreams with Viramune, and, some have reported strange dreams with sustiva (Aka efavirenz). It seems to make sense to point to it as a likely suspect.

Nonetheless, whereas, in my own experience, I have never suspected Viramune to give me some CNS effects, I am still a bit suspicious about Epzicom, as I suffer stress like effects. It is thought to be post traumatic, but, hey, the trauma is already 9 month old, so, I do not know any more...

On a regular basis I post new stuff related to the combo I take, and , should you become a pill buddy, you are very welcome.

At any rate, I hope you'll be successfull

Cheers

Eric

[komnaes]

Thanks Matt and Eric!

I would go through all your suggestions/issues with my doc when I see him again in 2 months.

I was hoping the CNS side effects with Sustiva (bad dreams, etc) would in time go away.. but with increased stress at work and family taking it really seems to be getting more difficult.

Shaun

[eric48]

Hi,

a quick additions to the meds I know (I only collect info on my own combo, which already quite a bit of work...)

the 400 CD4 cut off is ONLY for treatment naives. it DOES NOT apply  to treatment experienced people, so this should be of no (or little) concern)

one trial that relates to your case is this one:

http://www.ncbi.nlm.nih.gov/pubmed/20149984

I am sure you will find it interesting !

My gutt feeling (and note this is barely a hunch) there has been more satisfaction in people switching to Viramune than people starting with Viramune.

Should you consider that option you'd be a pill buddy. Cool!

It is not for everyone since some people can't bear it (liver concerns, rash...). Therefore I have read patient comments that expressed their disappointment with the drug (to say the least). On the other hand, from those whose who could pass successfully the initial period, I have yet to read some complaints.

Seems to be either:
- you can stand it and be pleased
- you can't

There do not seem to be a grey area.

I think this is one reason I was so anxious at the beginning. But, now that everything went fine, I can only confirm that I can stand it and am pleased with it.

Wishing you good success whichever way you decide to go

Cheers

Eric

[komnaes]

Thanks Eric!

I will bring the info to discuss with my doc.

Hugs, Shaun

[komnaes]

Just to update.. and if anyone has done the same switch please share your experiences.

So, Sustiva is out. The new regiment is:

1. Keep the daily Epizcom
2. Daily 300 mg Reyataz
3. Boosted with daily 100 mg Norvir

I saw the senior doctor (we don't get to pick which doctor to see..) today and he told he's not "a fan of Viramune", but think this change would work fine.

So hopefully the sleep problems and nightmares/walking dreams will be gone in no more than a month. He's asked me to come back to see him in 3 weeks, just to check on me.

And thanks for all the inputs.. a bit of researches work wonders with those doctors here.

Hugs, Shaun

[Ann]

That's great news, Shaun. I'm glad you finally got to switch. Good luck!

[komnaes]

Thanks Ann!

The first night of switching was a bit, er, uncomfortable.. not sure why. I took the new pills around 10.30pm, a bit earlier than in the past with Sustiva. The reason being I had a late dinner so by 10.30pm I was still feeling full.. so I didn't want to wait til I began to feel like eating again.. (as we're all advised to eat something with Norvir). Not sure if it had anything to do with the new pills I was so tired and sleepy by 11.00pm that I needed to lay down and just fell asleep.

Didn't wake up til 10.00am.. (yes, already missed the work day) and even with coffee an hour later I am still feeling sleepy.. and the dream last night was one of the most vivid I could remember... one of those "walkng" dreams again.. I was dreaming that I needed to buy some olive spread and cheese (yes, I know..) for lunch and went into a supermarket, only to be told that they could only be found in another section..

It turned out (in my dream) the other section was in another store .. which was several blocks away up the hill.. and then when I got there I was told they were in another section,.. then I was stopped by two staffers who told me someone reported that I was acting suspiciously and they needed to take me to a "tribunal" operated by the supermarket to determine that I wasn't stealing anything from them... and of course the "tribunal" was in another part of my "dream" town which again was up the hill several blocks away.

So right before I woke up I was walking and walking and walking in my dream, and no doubt twisting and turning in my bed as I "walked" mostly up hill in my dream. So needless to say my legs now are still feeling a bit cramped.

My doctor said it could take up to 2 weeks for my body to clear out all the sustiva (the level was way high..)..

As for the Norvir, I did feel my stomach beginning to rumble a bit almost immediately after I took it.. but thankfully didn't need to go to the toilet. and the yellowing of the eyes is very noticeable.

Otherwise I am feeling OK... but then again, with the dreams and sleep disruption, I really should have switched long time ago.

Shaun