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Author Topic: FOTO...  (Read 1343 times)

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Offline SouthSam7

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  • Posts: 428
FOTO...
« on: April 21, 2014, 01:43:45 PM »
I have had extreme fatigue, tiredness, sleepiness, hypersomnia since I started meds, but lately it's been a lot worse.  I've gone to the doctor with my complaints many times and they haven't given me anything to help. 

While awaiting my sleep study (I don't have much hope), I am again interested in FOTO to possibly reduce medicine-related fatigue.  FOTO stands for four on, three off, or five on, two off, strategy for taking medicine. 

Does anyone in here have any personal experiences with FOTO and/or extreme (debilitating) fatigue and/or treatments?

Thank you very much.

Sam
« Last Edit: April 21, 2014, 01:54:27 PM by SouthSam7 »

Offline SouthSam7

  • Member
  • Posts: 428
Re: FOTO...
« Reply #1 on: April 21, 2014, 01:59:52 PM »
I hope to get some real-life experiences from you all, but until then, here is an article about a FOTO study that seems promising: http://crine.org/wp-content/blogs.dir/28/files/2013/11/2004-FOTO-abstract.pdf

Offline zach

  • Member
  • Posts: 1,380
  • not fade away
Re: FOTO...
« Reply #2 on: April 21, 2014, 02:20:01 PM »
the reply i left i edited away. a mod deleted it appropriately. i don't know enough about that strategy to comment

Offline AusShep

  • Member
  • Posts: 207
Re: FOTO...
« Reply #3 on: April 21, 2014, 02:51:09 PM »
I've had many of your symptoms, in the end I think depression was probably more to blame than my meds.  I'd have fatigue, followed by insomnia, followed by being in bed for 14 hours, then tired and weak all day, before crashing early and sleeping another 12 hours to be tired again all day... This went on for about 6 months, with no treatment change before/after.  You've had these symptoms for years though...?

Some doctors seem so afraid of drug seeking behavior that they shy away from treating legitimate issues...  Have you tried switching HIV meds or to another doctor who will listen to your problems?  This would be my first and second choice after ensuring it's not really depression or another medical issue.

FOTO kind of scares me, mostly due to some friends drug holiday failures, so I realize that isn't a legitimate reason to dissuade one from a legitimate on/off approach.  But newer studies that also suggest low level resistance may build up on good but less than perfect adherence also gives me pause. 

Some follow ups to FOTO have shown that side effects didn't really diminish, which is what you're looking for, although they were much more preferred as far as dosing by the patients, and treatment failure wasn't statistically worse.  I haven't seen anything new on this in so long, it seems like the one pill a day better tolerated combinations are getting a lot more emphasis than the short drug holiday approach (notwithstanding the long term infrequent dosing schedules) 

Whatever you do, good luck with getting improvements to your side effects, I know how miserable they can be.


Offline BoiBoy

  • Member
  • Posts: 33
Re: FOTO...
« Reply #4 on: April 21, 2014, 02:59:49 PM »
I have had extreme fatigue, tiredness, sleepiness, hypersomnia since I started meds, but lately it's been a lot worse.  I've gone to the doctor with my complaints many times and they haven't given me anything to help. 

While awaiting my sleep study (I don't have much hope), I am again interested in FOTO to possibly reduce medicine-related fatigue.  FOTO stands for four on, three off, or five on, two off, strategy for taking medicine. 

Does anyone in here have any personal experiences with FOTO and/or extreme (debilitating) fatigue and/or treatments?

Thank you very much.

Sam

I don't have any experience with meds but I hope that this is something I can avoid once I start taking them.
I hope you find relief as well. I will be praying for you and your overall well-being.
No one should have to feel horrible just because they're trying to get better... especially with sleep issues.

Offline Theyer

  • Member
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  • Current ambition. Walk the Dog .
Re: FOTO...
« Reply #5 on: April 21, 2014, 04:01:47 PM »
Have you had treatment for depression at all?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline leatherman

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Re: FOTO...
« Reply #6 on: April 21, 2014, 08:44:57 PM »
I have had extreme fatigue, tiredness, sleepiness, hypersomnia since I started meds, but lately it's been a lot worse.  I've gone to the doctor with my complaints many times and they haven't given me anything to help. 
First off, I would suggest documentation. It's hard for a doctor to poo-poo your complaints when you wave a calendar in his face detailing exact dates, times and extent of the side effects.

which leads to my second suggestion, with that documentation to guide the discussion, perhaps you and your doctor could consider a totally different regime.

and finally, just what did you expect your doctor to give you? You listed a lot of symptoms that could be anything (HIV, the meds, stress, depression, another illness, anemia, etc. heck those things on your list are also simply symptoms of getting older) and then you imply the doctor isn't giving you a solution to those woes. Quite frankly, there's a whole lot of things that could be problem so rather than ask the doctor for something to help with a myriad of nebulous side effects, maybe you need to just push your doctor to find out the cause. Then he and you might be able to find a solution.

glancing through your past posts I was a little confused about a few things
I waited too long and my cd4s will never go up above around 400 because of that
do you still have low cd4 counts? a weak immune system can produce some of the side effects you mentioned.

and on another note, why do you think yours will never go above 400? without having a pre-HIV cd4 count, how do you know that your normal wasn't around 400 anyway? ;) just something I like to point out when people worry about low cd4. it's not the amount so much, as how well the cd4s you have do their work. My 315 kept me from dying with PCP and out of the hospital for 16 yrs. While saying I have 600 would "feel" and sound nice, obviously I only need 300 to stay alive and fairly healthy

My numbers have never been better.  The side-effects are less than my previous regimens, including lipid side-effects.
what changed since Oct? you didn't seem to be having as many issues back then

While awaiting my sleep study
is this study for a previous reason, or it is to determine if a sleeping/breathing issue could lie at the root of your symptoms you're having now?
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline SouthSam7

  • Member
  • Posts: 428
Re: FOTO...
« Reply #7 on: April 22, 2014, 02:07:06 AM »
Jesus Christ I typed a long response and it's gone.

My CD4 stays around 500.  Zero VL.  I've been taking lexapro for about 5 years.  I never get down more than anyone else.  I don't think it's that.  Today the doctor changed my meds from Truvada to Prezista and Norvir.  She also ordered a sleep study.  I'm not significantly overweight and I don't snore but I guess they need to rule things out.

My best friend and my family were the ones who said I needed to go to the doctor since they were shocked at how much I need to sleep.

They checked my b12, thyroid and other things via blood tests months ago.  All normal.



« Last Edit: April 22, 2014, 02:16:39 AM by SouthSam7 »

Offline bufguy

  • Member
  • Posts: 161
Re: FOTO...
« Reply #8 on: April 22, 2014, 11:16:29 AM »
FOTO was a study that specifically tested Five days On, Two days Off for atripla, not other meds. It was an extremely limited sample of people so Doctors look at the result cautiously.
I talked to my doc about it and he said that it appears to work because of the very long half life of the efavirenz component int atripla. It stays in the blood stream for an extended time. That's why he liked atripla so much in that if a person were to miss a dose now and then it was no big deal.
He had one patient who had kidney issues due to the truvada in atripla so he told the patient to take weekends off to lessen the toxicity of a seven day schedule. He did stress that adherence would have to be 100% because that "forgiveness" of atripla would be gone.
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline Jeff G

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  • Member
  • Posts: 11,350
  • How am I doing Beren ?
Re: FOTO...
« Reply #9 on: April 22, 2014, 11:25:46 AM »
Hi Sam ... I hope that you do not tinker with your med dose without your doctors approval ... which is doubtful to happen . I would think there is allot of extra care with labs and no wiggle room for mistakes . Hopefully the new med change will take care of the problem as I would hate to see you go this route personally .

Truvada is the backbone of many combos and you do not want to lose it or any med for that matter, you may need every weapon in the arsenal to fight with if you take the long view .   

Offline thunter34

  • Member
  • Posts: 7,310
  • His name is Carl.
Re: FOTO...
« Reply #10 on: April 22, 2014, 02:57:53 PM »
I absolutely would NOT jigger with my meds.  I agree with others that depression and the like are likely culprits; however, it has been known that HIV infection in and of itself can screw with sleep cycles.  Even when I got depression under control, I still had feelings of tiredness in my limbs all day every day, and I also felt sort of winded. 

I've dealt with this and now have some stuff called Provigil that helps keep the engine running.  This is similar to something like Adderall, but not as strong.  It is also metabolized in the body in roughly eight hours, so it doesn't keep me up around the clock.

Still, doctors may be hesitant to prescribe something like that if you have a history of stimulant abuse.
AIDS isn't for sissies.

Offline Joe K

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  • Member
  • Posts: 3,616
  • 31 Years Poz
Re: FOTO...
« Reply #11 on: April 22, 2014, 03:14:44 PM »
I've dealt with this and now have some stuff called Provigil that helps keep the engine running.  This is similar to something like Adderall, but not as strong.  It is also metabolized in the body in roughly eight hours, so it doesn't keep me up around the clock.

I take major doses of antidepressants as well as HIV meds and I used to feel like "dead man walking."  What changed for me is adding Methylphenidate (Ridlin).  It comes in doses starting at 5mg and you can taper the dose as needed.  I take a sustained release in the morning and a 10mg fast acting in the afternoon if I need it.  What I like about the drug is it DOES NOT make you feel like you are on speed, instead it increases your clarity of thought, making it easier to concentrate and be active, without your face dragging on the ground.  I use Trazadone to sleep, so I don't know if it would affect my sleep patterns.

Joe

Offline thunter34

  • Member
  • Posts: 7,310
  • His name is Carl.
Re: FOTO...
« Reply #12 on: April 22, 2014, 03:28:31 PM »
I take major doses of antidepressants as well as HIV meds and I used to feel like "dead man walking."  What changed for me is adding Methylphenidate (Ridlin).  It comes in doses starting at 5mg and you can taper the dose as needed.  I take a sustained release in the morning and a 10mg fast acting in the afternoon if I need it.  What I like about the drug is it DOES NOT make you feel like you are on speed, instead it increases your clarity of thought, making it easier to concentrate and be active, without your face dragging on the ground.  I use Trazadone to sleep, so I don't know if it would affect my sleep patterns.

Joe

I just got put on Trazadone, and I can barely take it.  Half a pill if I really feel I need it, maybe.  A full one will knock my butt in the dirt, unable to do much of anything.  It's potent enough that even with the Provigil I still feel woogy.  Without the Provigil, I am all but bed bound.  Not too keen on it.

Oh...but the Provigil for me is just like that - not speedy, just focused and with a bit of a can-do attitude.

I am very happy that my psyche doctor listened and put me on it.  It seems to me like a lot of people dismiss fatigue since it is something you can't readily see.
AIDS isn't for sissies.

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: FOTO...
« Reply #13 on: April 22, 2014, 04:16:38 PM »


  I take a low dose of Remeron.   It helps both in sleep and appetite, which are merely side effects of this antidepressant.
I despise the song Love is in the Air, you should too.

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,616
  • 31 Years Poz
Re: FOTO...
« Reply #14 on: April 22, 2014, 05:28:00 PM »
I just got put on Trazadone, and I can barely take it.  Half a pill if I really feel I need it, maybe.  A full one will knock my butt in the dirt, unable to do much of anything.  It's potent enough that even with the Provigil I still feel woogy.  Without the Provigil, I am all but bed bound.  Not too keen on it.

Oh...but the Provigil for me is just like that - not speedy, just focused and with a bit of a can-do attitude.

I am very happy that my psyche doctor listened and put me on it.  It seems to me like a lot of people dismiss fatigue since it is something you can't readily see.

Tim,

You do know to take your Trazadone, right before you sleep and not when you are awake?  The nice thing about Trazadone is that it has a 4 hour half-life, meaning the drug is gone from your system in 8 hours and usually does not produce the "hangover" you can get from other sleeping aids.  I would suggest you talk with your psychiatrist about some of these drugs, as you might need a little fine tuning to alleviate some of these issues.

Joe
« Last Edit: April 22, 2014, 05:34:07 PM by Joe K »

Offline zach

  • Member
  • Posts: 1,380
  • not fade away
Re: FOTO...
« Reply #15 on: April 22, 2014, 06:30:08 PM »
i like trazadone, i love remeron, skeeb, do you take the dissolving tabs that melt on your tongue? anything that helps to gain a little weight is appreciated. that is why i liked seroquel so much, fantastic results, and i packed carbs like you wouldn't believe, craved french fries, xtra large yes thank you

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: FOTO...
« Reply #16 on: April 22, 2014, 06:55:10 PM »
i like trazadone, i love remeron, skeeb, do you take the dissolving tabs that melt on your tongue? anything that helps to gain a little weight is appreciated. that is why i liked seroquel so much, fantastic results, and i packed carbs like you wouldn't believe, craved french fries, xtra large yes thank you

  No, I take the regular tablets at 30 mg..  Weird thing happened about two months ago when I ran out.  I fell in love with Belinda Carlilse and would tear up when I heard the song Vacation by The Go Go's.   I still find it to be a sad song of sorts.

 Strange..
I despise the song Love is in the Air, you should too.

Offline SouthSam7

  • Member
  • Posts: 428
Re: FOTO...
« Reply #17 on: April 22, 2014, 11:07:41 PM »
I found the original reply although it's not as timely today. 

Thank you for your response!

The sleep study is for my fatigue (she ordered it today).  My CD4s did go up to around 500 where they stay. 

Fatigue was always bad but in the past few months it's terrible.  I take testosterone and it helped a little bit but I can hardly function the fatigue is so bad now.  Zero viral load.  She changed me today from Truvada to Prezista and Norvir.  I haven't found anything suggesting that will help but I will do what they tell me. 

I think the medicine is contributing to my fatigue and that's why I am interested in FOTO.

First off, I would suggest documentation. It's hard for a doctor to poo-poo your complaints when you wave a calendar in his face detailing exact dates, times and extent of the side effects.

which leads to my second suggestion, with that documentation to guide the discussion, perhaps you and your doctor could consider a totally different regime.

and finally, just what did you expect your doctor to give you? You listed a lot of symptoms that could be anything (HIV, the meds, stress, depression, another illness, anemia, etc. heck those things on your list are also simply symptoms of getting older) and then you imply the doctor isn't giving you a solution to those woes. Quite frankly, there's a whole lot of things that could be problem so rather than ask the doctor for something to help with a myriad of nebulous side effects, maybe you need to just push your doctor to find out the cause. Then he and you might be able to find a solution.

glancing through your past posts I was a little confused about a few thingsdo you still have low cd4 counts? a weak immune system can produce some of the side effects you mentioned.

and on another note, why do you think yours will never go above 400? without having a pre-HIV cd4 count, how do you know that your normal wasn't around 400 anyway? ;) just something I like to point out when people worry about low cd4. it's not the amount so much, as how well the cd4s you have do their work. My 315 kept me from dying with PCP and out of the hospital for 16 yrs. While saying I have 600 would "feel" and sound nice, obviously I only need 300 to stay alive and fairly healthy
what changed since Oct? you didn't seem to be having as many issues back then
is this study for a previous reason, or it is to determine if a sleeping/breathing issue could lie at the root of your symptoms you're having now?

Offline buginme2

  • Member
  • Posts: 2,834
Re: FOTO...
« Reply #18 on: April 22, 2014, 11:45:58 PM »
FOTO was only studied using Atripla.

ARV's don't cause extreme fatigue in most others.  Why are you assuming that it is in you?  Low T is a known cause of fatigue and you obviously have that if your on T replacement.  There are numerous causes of fatigue.

So your doctor changed your hiv meds?  That should tell you if it's caused by your meds.  If your still fatigued after the change, wasn't the meds.  If it goes away, it was.


Offline friskyguy

  • Member
  • Posts: 105
Re: FOTO...
« Reply #19 on: April 23, 2014, 04:24:10 AM »

ARV's don't cause extreme fatigue in most others.  Why are you assuming that it is in you?  Low T is a known cause of fatigue and you obviously have that if your on T replacement.  There are numerous causes of fatigue.

So your doctor changed your hiv meds?  That should tell you if it's caused by your meds.  If your still fatigued after the change, wasn't the meds.  If it goes away, it was.



The above post by Bug is sound advice....take it easy and introduce drugs and changes in therapies one at a time......if mix and match all at once u will never know what u really need and what is the cause.

I agree this approach may be easier said than done when ur desperate to resolve your health issues. Perhaps try to incorporate some limited exercise into your routine and maybe review your diet......all have an influence on energy levels.

I remember back in the 90s there was an illness called chronic fatigue syndrome....my ex had it......not sure if it still validated today or if it is called something else....but maybe worth to google.

good luck
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

Offline eric48

  • Member
  • Posts: 1,157
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Re: FOTO...
« Reply #20 on: April 23, 2014, 06:12:41 AM »
FOTO and Atripla

The original paper (table one)
http://crine.org/wp-content/blogs.dir/28/files/2013/11/2004-FOTO-abstract.pdf

does not list an single patient on Atripla (tm) (EFV/TDF/FTC)
(10 patients on EFV; 10 patients on NVP and 8 on PIs)

It actually mentions that the authors WILL proceed to a trial with (EFV/TDF/FTC)

In the paper here:
Durable suppression possible with FOTO treatment schedule in subjects on nevirapine-based regimens.

http://thomasland.metapress.com/content/c2752133j0102522/fulltext.pdf

They confirm the favorable outcome on NVP (Viramune(tm))

I haven't found any lit. concerning Foto and Atripla (yet...)

Fatigue

My doc completly ignores it.
I went to a 'users club' kind of event and lost of people were complaining about ... Fatigue ...

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline SouthSam7

  • Member
  • Posts: 428
Re: FOTO...
« Reply #21 on: May 11, 2014, 08:44:00 PM »
Update: Extreme fatigue and profuse sweating was caused by lexapro. Doc took me off it and I've never felt better. I suffered for almost 10 years with that. Peace.

Offline AusShep

  • Member
  • Posts: 207
Re: FOTO...
« Reply #22 on: May 11, 2014, 10:02:34 PM »
Glad you got it worked out.

 


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