Drug side-effects, Atripla, Isentress: ultra-sensitive

[colby]

I'll get to Isentress but want to note that previously I was taking Atripla and ended up literally tripping out (major depression, suicide issues).  My doctor advised me to take a year's drug holiday and to get me emotionally stable with Lexapro and counseling.  I resumed drug therapy two months ago with Istentress and Turvada.  

From night one I went from being a normal sleeper to insomniac.  Perhaps insomnia is not the correct word as I could not sleep period (I went for 78 hours with absolutely no sleep accompanied with extreme fatigue)  I was prescribed Ambien CR:  Still could not sleep for about five days, finally started sleeping but did things without knowing such as potting plants and reading work manuals.  Went for about a month of OK sleeping but still extreme fatigue nonstop.  From time to time I would try a night without Ambien CR to determine if I might be acclimating: Not, those nights were sleepless.  After two and a half months on Isentress I could not sleep even with Ambien CR.  

I am 44 and have looked a youthful 28 all my life.  I am active, athletic and my work is emotionally and physically engaging.  After a month on the Isentress (I assume is the culprit as I would get that shaky, wired yet fatigued feeling within minutes of taking it) my youthfullness seemed to melt and I looked and felt the worst I have ever felt in my life, worse than when I had the effects from the Sustiva in the Atripla.  Fortunately I am in a better place emotionally now than when I was taking the Atripla.  

My doctor gave me the OK to discontinue Istentress and resuming with Norvir/Lexiva following labs.  I would also like to mention that I became very vascular (pronounced veins) both on Atripla and Isentress/Truvada.  I had no weight loss just veins popping out like balloons.  Any ideas as to what causes this and is there any kind of supplementation to counteract this?

Is there anyone else out there who is as ultra-sensitive to drugs as I am who have had similar reactions/experiences?  Any suggestions greatly appreciated as I feel a little lost and scared about where to go from here.

[OutOfDarkness]

Is there anyone else out there who is as ultra-sensitive to drugs as I am who have had similar reactions/experiences?  Any suggestions greatly appreciated as I feel a little lost and scared about where to go from here.
[/quote]

Hi Colby,
Welcome to the forums, I have recently joined as well and have found a lot of support and help and information. 

As far as your problems with your medications, you might want to research online your Lexapro interacting with hiv meds you are taking.  I also take psych meds with Sustiva and Truvada, have had some trouble with sleep and used Ambien as well, but not CR (controlled release).  It worked for a couple of weeks, and then it stopped working.  So I stopped taking the ambien, went for a couple of days of wacky sleep patterns and then finally it seemed to become less and less of a problem, but I still stay up all night once or twice a month.  I have found that if I don't stress about being up all night and just find things to do, that I can stay up the next day and sleep through the next night.  For me it is more about the quality of sleep that I do get when I do sleep and if I stress and get anxious about not sleeping or if I TRY to make myself sleep that it just interferes with my next night's sleep.  You should ask your therapist/psychiatrist about taking an anti-anxiety and anti-depressant as well.  I take all of these meds together at night and have no trouble falling asleep, for the most part.

Oh yeah, the problems with doing things in your sleep are a side effect of ambien and can be dangerous.  So if you notice this happening I wouldn't take it.  What if you got in your car and started to drive somewhere?  I heard of that happening to someone in the news a few months ago. 

As far as your veins, I am not sure what could be causing the enlargement of them and never heard of any supplements to take for it.  Make sure you talk to your doctor before starting any medications/supplements prescribed or over the counter because different meds could have different reactions with them.  You can also ask a pharmacist, but they might not know the correct answer at all times, especially if they are too busy or don't check their computer when you ask them about it.   

[bimazek]

there are so many issues that you do not discuss that are extremely important regarding meds and side effects etc

what were your VL and CD4 counts etc before and after meds?
are all organ functions normal?
did you get testosterone blood test?
how long have you been infected?
what were symptoms before taking meds?
are you small and low body weight or big guy 200 lbs?
how long did you try one med before skipping to next?
have you used any recreational drugs at all in the weeks months before starting meds?
do you drink alot of caffeine? any?
alcohol use?
what were your sleep patterns before meds?
can you tell what symptoms are emotional and which are physical of the side effects etc?
did you have any sleep issues before meds?
did you ever have a heavy rec drug use period even decades before using the hiv meds?
are you free of all hep a, b, c etc?
liver function normal before and after meds?
how many weeks months did you give each regiment?
are you with hiv dr. specialist?  in big city or smaller community?

so many questions i hope your dr. asked you or that you told your doctor.

SLEEP

for sleep there are two things falling asleep and staying asleep

MELATONIN melatonin is great to reset the bio clock and tell you now is the time to go to sleep - it also is very potent anti-cancer natural substance according to italian study where they took 20 tabs every day (deep sleep cures cancer?)

try 1-5 tabs of MELATONIN melatonin an hour before bed and even if you wake up in middle of the night

also tryptophan is fantastic but a bit expensive

both natural

[bimazek]

one more thing about sleep, sometimes extra warmth can help put a person to sleep and body will push away the blanket later in night, if you cant sleep try and extra blanket sometimes that is enough to do the trick esp. with a melatonin

cut out all caffeine all day zero none
this was on the wall of Dr. office i go too
for sleep issues

[eric jensen]

Colby,

I'd be curious to know some of the answers that bimazek asked.

Also, I was on A"trip"la for one year.  Along with the terrible dreams and heavy mental state, I also started noticing the veins starting to become more pronounced in my legs.  I have ultimately lost some of the subcutaneous fat in my legs.  Though, I felt it was a good regimen, I just couldn't take the mental state it left me with, the inability to sleep well, and how I felt it started effecting my body shape (loss of fat in legs/butt).

I moved to Issentress and Truvada this last April/May  I definitely became more fatigued while taking the two meds, and ultimately wanted to sleep all the time.  Being on these meds, I also noticed that my veins became more pronounced (popping).  Very embarrassing, and bothersome.   I have been so unhappy with the combination of meds, I stopped taking the Truvada three weeks after starting the combo.  I did this on my own, not telling my doctor until recently.  Anyway.. I'm still only on Issentress, and I just got a complete blood work and VL back. My numbers were always fairly good, with the exception of slightly higher Cholesterol, an Trig licerides.  Everything has improved, with the exception of VL.  That has increased to 300 copies, though, I was undetectable back in a June VL result.  I'm gonna give it till one more VL test, and see where it's at.  The subcutaneous fat seems to have returned just a little in my butt, and legs, though, my veins still pop.  Mornings are worse.  It seems to be dependant on my state of physical being that they are more pronounced.  After doing a lot of research relating to HIV meds, I've come to the conclusion the meds are messing with our Mitochondria.. I'll come back to finish this.

[atlq]

Colby,


I just started on Isentress last week , so I am interested in reading about the experiences of others on the drug. I think that looking at some of the questions Bimazek raised could be helpful. Please let us know how you are doing. The vascular issue is one I heard read about, but it seems that a couple of months on a drug would not be long enough to begin to see body changes of this type?....

and I am sorry if this is temporarily hijacking this thread but....

Eric-

I am sorry to hear about the issues you are having. Those of us dealing (and dealing and dealing...) with lipo can relate. That said, I think that dropping meds without consultation with your doc is not a good idea man. I am really concerned that you are now taking Isentress alone. The only ARV that has shown long term durability as monotherapy has been Kaletra, and even those results have been mixed. By taking Isentress alone, you raise significantly raise the risk of developing resistance to it (and perhaps to future integrase inhibitors - studies already indicate that the next integrase inhibitor will probably be of little to no use for people with Isentress resistance).

I don't know what your doc would say-and we are all different, but if I came to my doc with your story , he would tell me it would be preferable to be on nothing right now rather than taking monotherapy of the type you are describing.

[trellium]

Colby,

I'd be curious to know some of the answers that bimazek asked.

Also, I was on A"trip"la for one year.  Along with the terrible dreams and heavy mental state, I also started noticing the veins starting to become more pronounced in my legs, especially after a night of smoking some weed, and sometimes taking viagra.  I have ultimately lost some of the subcutaneous fat in my legs.  Though, I felt it was a good regimen, I just couldn't take the mental state it left me with, the inability to sleep well, and how I felt it started effecting my body shape (loss of fat in legs/butt).

I moved to Issentress and Truvada this last April/May  I definitely became more fatigued while taking the two meds, and ultimately wanted to sleep all the time.  Being on these meds, I also noticed that my veins became more pronounced (popping).  Very embarrassing, and bothersome.   I have been so unhappy with the combination of meds, I stopped taking the Truvada three weeks after starting the combo.  I did this on my own, not telling my doctor until recently.  Anyway.. I'm still only on Issentress, and I just got a complete blood work and VL back. My numbers were always fairly good, with the exception of slightly higher Cholesterol, an Trig licerides.  Everything has improved, with the exception of VL.  That has increased to 300 copies, though, I was undetectable back in a June VL result.  I'm gonna give it till one more VL test, and see where it's at.  The subcutaneous fat seems to have returned just a little in my butt, and legs, though, my veins still pop.  Mornings are worse.  It seems to be dependant on my state of physical being that they are more pronounced.  After doing a lot of research relating to HIV meds, I've come to the conclusion the meds are messing with our Mitochondria.. I'll come back to finish this.

Wow. 
I don't know where you have done your research readings at, but I doubt you will find any doc prescribing Isentress (raltegravir) monotherapy.  The genetic barrier to resistance of currently investigated integrase inhibitors is just too low for crazy monotherapy idea.

At this point, you may or may not already have developed resistance mutations to Isentress.
Since you are still only on Isentress after telling your doc, I guess your doc is gonna wait till the VL gets high enough (>500 or 1000) to run a genotype test.  Adding Truvada back at this point seems too risky since there is no knowing which drug of the Truvada + Isentress (or past) combo you may have already developed resistance to since you mentioned in the past you had stopped meds "for a few weeks, to a month, to give my body a rest" ->http://forums.poz.com/index.php?topic=615.msg270253#msg270253  Truvada alone should also never be considered for monotherapy (well actually dual since its TDF + FTC, still a no-no).

I hope your next VL test is sooner than the regular 3 months interval.  Good Luck!

Sorry for the hijack, but just wanna get the message out i.e. everyone on HAART should never drop any HIV meds without consulting your doc ...unless you and doc REALLY know what you are doing.  It really does affect the integrity of your future treatment options.

[Peter Staley]

Agreed -- Eric is playing with fire in a major way.  And over what?  He can see his veins more than usual???  Folks are dealing with nausea, peripheral neuropathy, and worse, and still working with their docs to find a 3-drug regimen that will keep them alive, and Eric decides he'll live fine on monotherapy because he imagines his veins are throbbing.  Eric, have you heard about resistance?  Cross-resistance?

I'm sorry Eric.  No sympathy here.  You need someone to shake you by the shoulders real hard right now, so I've tried to do so with this post.