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Author Topic: Stopping Meds? Or?  (Read 3562 times)

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Offline Buckmark

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Stopping Meds? Or?
« on: February 14, 2008, 06:53:58 PM »
Folks,

I have a bit of a dilemma here that I could use your assistance with.  I am considering stopping meds for a period of time, to see if it is the Sustiva that is make me so fucking depressed (I am on Atripla).  While I know it's not the only contributor to my depression, I'd like to know if it is a significant contributor.  I have been seeing both a therapist and a psychiatrist for over a year.  I've made some progress with therapy, but working with my psychiatrist on different anti-depressants and "mood stabilizers" hasn't made a lick of difference in my depression.

You may be wondering why I don't switch from Sustiva to Viramune.  I tried this about a year ago, and had a severe allergic reaction to Viramune, which basically means it is not an option for me any more.  I had considered switching me to a PI (probably Reyataz + Norvir) which my doc would support.  He also suggested switching me to Isentress, which kinda surprised me.  But his last suggestion was just to stop meds for 6-8 weeks and see if my mental health improves.

The doc feels that stopping meds for that period of time is a reasonable option for me.  I've been undetectable for the last 4 years on Atripla, and have a CD4 count of 588; prior to this I did not need meds for 14 years (so I know I'm very fortunate).  I would stop in a controlled fashion to try to prevent resistance (i.e. stop Atripla, but continue Truvada for 7 days due to the long half-life of Sustiva). 

The idea behind stopping, rather than switching to a new class of drugs, is that it might (might) preserve other options / classes of drugs for me in the future.  Theoretically.  Doc says he is not too terribly worried about mutations by stopping.  I'm somewhat torn between stopping altogether (temporarily), and swapping out Sustiva for another drug.  But right now I'm leaning toward the former.

I'd appreciate any experience or thoughts you can share.

Regards,

Henry





"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Matty the Damned

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Re: Stopping Meds? Or?
« Reply #1 on: February 14, 2008, 07:04:17 PM »
Well Henry,

I achieved an undetectable VL in July last year on a combo of Trizivir/Reyetaz/Norvir. I swapped the Trizivir for Kivexa and remained undetectable.

In November (my CD4 count was 204 (12%) my VL undetectable) I took about a month off the combo. Stopped altogether.

My VL shot up to 60,500 and my CD4's dropped to 140 (7%).

I don't know if that info is any use to you and it certainly isn't meant to contradict or replace the opinion of your doctor.

MtD

Offline Oceanbeach

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Re: Stopping Meds? Or?
« Reply #2 on: February 14, 2008, 10:20:53 PM »
Hey Henry,

I attended a conference about 5 years ago in Lake County.  The speaker was Anna Baylor MD, an ID doc from a Sonoma County clinic where I am now being treated.  Her topic was being able to stop taking meds, when and why.  She said at that time, the worst thing which could happen was your T-cells and VL would go back to where they were before beginning medications.

Two years ago, Mark Netherda MD, Medical Director of our clinic and boss of Anna Baylor MD brought a report to the Sonoma County Commission on AIDS meeting which stated in a nutshell stopping meds was hazardous to the liver and med vacations should no longer be an option.  Neither Mark nor Anna are or were my ID doc but they are both brilliant and dedicated doctors.  Dr. Netherda took a leave of absence for 1 year to help run a clinic in Africa, while Dr. Baylor was Acting Medical Director in his absence.

I have asked my ID doc, Marshall Kubota MD for a supervised vacation of medications, he works with Mark Netherda and Anna Baylor every day and he said, absolutely no way.  I have not been on depression medication since I left Los Angeles, (eight years ago) and have not seen a therapist since mine was terminated at the clinic in Lake County (5 years ago), so in my personal experience, depression is not in the equation but, three varying opinions from respected medical professionals in the same clinic would suggest a second opinion from a different ID doc would be in order before making any new changes.  Have the best day
Michael

Offline Buckmark

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Re: Stopping Meds? Or?
« Reply #3 on: February 14, 2008, 10:48:55 PM »
Matty, Michael,

I appreciate your responses.  Some more for me to think about.

Also, I had actually intended to post this questions in the "Treatment & Side Effects" forums, so I am going to ask one of our Goderators to move it.

Thanks,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline thunter34

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Re: Stopping Meds? Or?
« Reply #4 on: February 14, 2008, 10:49:33 PM »
This thread screams for Newt and Mother Mark.

My thoughts (based on gut feeling alone) would be for the stop.  Why?  Because of the long time at undetectable and relatively high CD4 counts.  For that short of time period, you've got some "fall space" for the CD4 counts and VL rise.  Plus, you are doing the stop in a careful, controlled fashion.  There is a very good chance you will not have resistance when you resume, and if you do...well, you were considering a swap out already.  Med wise, it might be a decent gamble in an effort to save the med option.

But I'm no doctor, seek a professional, etc etc...

What I do know without question is that I love you dearly, Henry.  I fully support whichever path you choose because I want some sort of relief to open up for you and help light you way out of this situation because you deserve it.

No disclaimers required for that part.
AIDS isn't for sissies.

Offline Queen Tokelove

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Re: Stopping Meds? Or?
« Reply #5 on: February 14, 2008, 11:05:00 PM »
I am glad that you started this topic, Henry. I hope it doesn't get moved since I don't go into the other forum and probably never would have spotted it. I am on Atripla and for the time being I am going to stay on it for awhile. As you know, I am dealing with depression but feels that Atripla is the cause but me and my ID doc are working together to see if this is the case for sure. Who knows, one day I may need to take a med vacation and would like to know the reprecusions of doing so. And what options I may have. Thanks again for starting this thread.

I hope whatever you decide will work for you and you have the best results.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Miss Philicia

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Re: Stopping Meds? Or?
« Reply #6 on: February 14, 2008, 11:08:48 PM »

The idea behind stopping, rather than switching to a new class of drugs, is that it might (might) preserve other options / classes of drugs for me in the future.  Theoretically. 

This "might" and "theoretical" stuff really makes no sense to me, and seems not to be very practical in your situation.  It's not like 10 years ago when there were less drug combos.  We've seen many new drugs enter the market in the past 15 months, with another due soon.  It's not like the dearth of new meds that we found ourselves in as recently as a few years ago, unless I'm missing something in your past history and that you have wild resistance issues.

And I hope that this doesn't offend you, but going from previous postings of yours it seems to me that your depression issues predate the 4 years on Atripla, or have I read things wrong?  Or are you saying they've simply increased by some extreme amount?  Personally if I'd been prone to depression issues I'd not have chosen Atripla in the first place and gone the PI route.

At any rate, I understand your need to find out if Atripla is aggravating your situation, but I just think that you're considering a very unnecessary role of the dice and I see no benefit whatsoever in doing it.  Sure, at most you'll "lose" a year or two worth of gains in terms of lab numbers -- are you really willing to do that for no apparent reason?  I swear I'd consult with a 2nd doctor.

Frankly I'd take your doctor up on his offer of Isentress, as they're not offering this generally unless you have resistance issues.  The drug works VERY well, and has virtually no side effects. 
« Last Edit: February 14, 2008, 11:10:28 PM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

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Re: Stopping Meds? Or?
« Reply #7 on: February 14, 2008, 11:43:51 PM »
Hey Henry,

I know you went 14 years without meds. I don't know what your numbers were like when you did begin.

From the research I have read, and which I would quote if I could remember exactly when and where I read it, someone whose CD4s were reasonably good prior to starting meds usually has a better chance of taking a drug holiday without having his or her immune system rapidly crashing and burning.

Obviously your doctor, who does know your history and your previous numbers, is comfortable with recommending this brief respite from the meds and he is only recommending it for a specific and relatively brief period of time.

He also knew to continue the Truvada after stopping the Atripla to prevent the development of resistance to Sustiva.

I know Sustiva did a number on me. I found myself with both a minor degree of depression and a rather substantial amount of anxiety and moodiness. A couple of friends also pointed out I started exhibiting obsessive/compulsive tendencies. Of course, I tend to have those anyway, or so I'm told.

I would take your doc up on the holiday to see if the stoppage of Atripla will lessen your depression. If it does, then I would agree a med switch is definitely in order. I had very good luck with Reyataz coupled with a Norvir boost and it also is a once-a-day regimen that should work just fine with Truvada.

If the drug holiday doesn't help the depression, the likelihood is no harm would be done because you stopped the meds properly and could go right back should that be the best course for you to take.

Hope this helps.

HUGS,

Mother Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Jacques

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Re: Stopping Meds? Or?
« Reply #8 on: February 15, 2008, 02:19:47 AM »
Just to say that I fully agree with Philly's position.

Henry, why risk to end off 4 years of virology suppression success ?  It is quite possible indeed that Sustiva could be aggravating your depression symptoms. Discarding Sustiva is certainly a good move but I really don't agree with your doctor suggesting to quit all medication. Soon or later you will have to get back on meds anyway. 
Sustiva can be replaced advantageously by an IP or, as offered by your doctor, Isentress.

just my thought

regards
Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline allanq

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Re: Stopping Meds? Or?
« Reply #9 on: February 15, 2008, 02:35:32 AM »
I'm not so sure that stopping the Sustiva and continuing with the Truvada for a week is the best way to get off Sustiva. I remember reading that the best way to quit your drugs when you're on Sustiva is to substitute another drug with a shorter half-life than Sustiva (such as Kaletra), stay on that for a period of time, then stop all the drugs at once. I wish I could remember where I read that.

If you stop the Sustiva and continue with Truvada, then during the period when you are just on Truvada, there would be some Sustiva in your system, but not the full therapeutic dose. From what I've read, this is an invitation to resistance.

I agree with Philly about getting a second medical opinion on this. Consider submitting a question to one of the doctors on thebody.com in the "Ask The Experts" forum. That would be a start. Doctors have been known to make mistakes, and I think the possible consequences of this decision warrant getting a second opinion.

Allan

Edited to add this:

I was just thinking that switching to Isentress really does make the most sense.

If you find that you are less depressed on Isentress, then the switch was a good one. If you find it makes no difference in your depression then you can either stay on Isentress and keep the Sustiva in reserve, or you can switch back to Sustiva and keep Isentress in reserve. As long as your viral load remains undetectable during this period, there shouldn't be any resistance issues.

But, again, I think you should get a second opinion from another HIV doctor.

« Last Edit: February 15, 2008, 02:51:17 AM by allanq »
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline newt

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Re: Stopping Meds? Or?
« Reply #10 on: February 15, 2008, 06:27:32 AM »
First, stopping protocols

Truvada is not enough to prevent Sustiva resistance, it would be standard in the UK to replace the Sustiva with a PI for 3 weeks and stop the Truvada 5 days before the end of using the PI.

In which case, why not try a PI right now? Even for 3-4 weeks.  This will be long enough for the Sustiva to wash out your system and prob let you know if it's the cause.

Second, about stopping

In the SMART study, a big trial of continuous treatment v CD4 guided breaks, people with the lowest viral loads (read undetectable) did worse in terms of unforeseen heath events (ie heart attack/CV problems) compared to people with low level viremia. It is not clear why. Perhaps some aspect of inflammation following viral replication starting up. However, the absolute risk is still low. Despite more encouraging results from other stop-start studies I personally would be cautious about stopping without a really good reason, like drug toxicity where there is no other option for management, or unsuppressed viral load.

If your CD4 was ever below 350 or your viral load above 100,000 I personally would be inclined to switch not stop, based on the picture presented by current research.

Third, switching

There is probably nowt to choose between boosted Reyataz and Isentress, except to say Isentress is newer and less understood in practical use than Reyataz.

Hope this helps.

- matt

Now playing: the seaguls on the chimney pots (early start of nesting season it seems)
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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Re: Stopping Meds? Or?
« Reply #11 on: February 15, 2008, 11:08:10 AM »
Yes, I had that SMART study in my head but couldn't recall the details.  Henry you should really bring that up with your doctor.  I think a summary article is buried somewhere in the poz.com treatment news section if you want to go search for it.
"Iíve slept with enough men to know that Iím not gay"

Offline Buckmark

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Re: Stopping Meds? Or?
« Reply #12 on: February 15, 2008, 02:59:05 PM »
I've read about the SMART study, and the fact that it was stopped due to too many "adverse health events" in the folks who stopped treatment.  But as I understand it, this study was about "episodic" treatment:  on treatment when CD4s dropped to a certain level, off treatment when CD4s climbed to a certain level.  In other words, multiple interruptions.  I'm only talking about one interruption.  Still, it does make me take pause to consider.

I appreciate everyone's responses -- I knew I would get a variety of opinions, and that ultimately I have to make the decision that is best for me.  I just wish I knew which one that was.  I'm also trying not to let my depression cloud my judgement here.

Thanks,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Assurbanipal

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Re: Stopping Meds? Or?
« Reply #13 on: February 17, 2008, 08:03:12 PM »
Henry

Based on your background, you might find it handy to lay out the decision process as a programming outline.  I tried it (based on my recollections from a looong time ago) and it appears to argue pretty strongly for the switch vs stop method, but you may weight the consequences differently

CASE
The Sustiva is the problem.  In that instance you will need to switch anyway and is there a harm in switching early?

The Sustiva is not the problem.
Subcase A -- You decide you like the new regimen better anyway
Subcase B- The new regimen fails and you need to go back to Sustiva -- if it fails now wouldn't if probably fail in the future?  So it is not as if you lost a future line of meds
Subcase C -- you prefer the prior meds but the new ones work as well.  In that case you have to look at the chance of developing Resistance because you switch from one working regime to another while the virus levels are quite low and potential replication rates of any mutations are based on an undetectable sample.  These risks seem minuscule.

No doubt the above misses some of your concerns, but you seem an analytical type and I thought you might find this approach helpful.

Best wishes

Assurbanipal

(edited because I accidentally hit a key that posted when only part way through writing)
« Last Edit: February 17, 2008, 08:13:47 PM by Assurbanipal »
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Buckmark

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Re: Stopping Meds? Or?
« Reply #14 on: April 10, 2008, 04:12:52 PM »
Folks,

Here's a follow-up on my decision about whether to switch meds, or stop meds, in order
find out if Sustiva was the cause of my mental health concerns.  Back at the beginning of
March, I stopped Atripla (of which Sustiva is a component), and started taking Viramune
and Truvada.  That was somewhat of a gamble, because I had tried Viramune before (under
a different physician) and developed a rash.  But my current doctor didn't feel that alone was
a life-threatening condition, because it never affected my liver function.  So he agreed to
let me try it again.

I just got back from the doctor, and received the result of my first labs after 6 weeks on
Viramune and Sustiva:  viral load is undetectable and my CD4 count is 598.  This new combo
appears to be working against HIV, so I'm relieved.

How is this working on my mental health issues (i.e. depression)?  Well, I can't say that I've
noticed too much of a change in that respect.  My head is a bit clearer.  I don't have to
worry about the drowsiness associated with Sustiva.  Oddly, my vivid dream have *not*
gone away, which makes me wonder if it is possible that Sustiva may result in some lasting
changing to brain chemistry and function.

Was this switch worth it?  I think so, if only to get rid of the drowsy and foggy side-effects
of Sustiva.  Perhaps it was too much to ask that ditching Sustiva would help my depression.

One benefit is that I now have a nearly 9 month supply of Atripla to give away.  Can someone
remind me who on the forums is the individual who hooks up people with extra meds, and those
who are in need of meds?

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline newt

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Re: Stopping Meds? Or?
« Reply #15 on: April 10, 2008, 05:03:50 PM »
You may have a drug class response to (current) NNRTIs. A small number of people get mood disturbance on Viramune (as reported in a seminal but not followed up paper by Nelson (Chelsea and Westminster Hosp. London) et al). Plus Sustiva can take a looooooong time to get out your system.

The merits of a break vs change are moot at your CD4 count, provided you start again before your CD4 falls to 350 and depending on your baseline -- I personally would be cautious about a break if my count was ever less than 350 these days (a la SMART study).

Plus, do not discount that the mood change is a type of fatigue and therefore related to other meds you haven;t changed, and perhaps (alas) regardless of combo a fact of life.

Somehow, strangely and without scientific explanation based pureply on observing others who have switched,  different drugs can suppress/release energy -- it's a very personal thing and hard to predict. Me not one to mess with a working combo/change too often, but this is often a question of finding what's best for you.

The "using up options" thing I don't buy.

All the best

- matt

Now playing: pasta saucepan


Edited for spelling x 2
« Last Edit: April 10, 2008, 11:35:44 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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Re: Stopping Meds? Or?
« Reply #16 on: April 10, 2008, 05:09:17 PM »

One benefit is that I now have a nearly 9 month supply of Atripla to give away.  Can someone
remind me who on the forums is the individual who hooks up people with extra meds, and those
who are in need of meds?



Lisa does.  But frankly most any ASO will hook you up with something to do with them.  I'm about to take in 3 months worth of Fuzeon and 2 months of Norvir to my HIV clinic, once I can hit up a friend with a car.  Just the Fuzeon is worth a whopping $5000
"Iíve slept with enough men to know that Iím not gay"

 


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