Meds, Mind, Body & Benefits > Mental Health & HIV

Mental health and sustiva

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Dachshund:
Mark I was one of those who suffered for almost two years with severe Sustiva side effects. I convinced myself that the "good" numbers justified my misery and tried to gut it out. One day I told my doctor, "either switch my meds or else!" I guess the tone of my voice and the look in my eye convinced him...we switched to Kaletra that very day. It might be time for you to have a serious talk with the doc.

I am convinced that for some of us Sustiva is just too potent to tolerate and I hear stories like yours over and over again.

Hal

antibody:
i had to drop sustiva because of the depression and sleep problems.

ademas:
The vivid dreams, sometimes nightmares, fatigue, and depression have definitely been a big part of my experience with Sustiva (6-7 years now?  I can't remember...but it's been a long time).
I still prefer it to the PI's, and my numbers have certainly improved on it.
Seems there's always something, though, eh?

leatherman:
I quit Sustiva after almost a year for the opposite reason. I was sleeping away my life - even when I was awake! Each night came vivid nightmares of zombies (obviously my subconscious struggling with the concept of my infection). Each day I stumbled about my house, banging into walls liken a drunk, barely awake. Four months onto the drug I had to quit my job - I was afraid I'd kill myself trying to drive into work due to these side effects. Finally, when I fell down the stairs one morning leaving my bedroom, still under the Sustiva effects after sleeping for over 14 hrs, I called it quits. My doc still occassionally tries to recommend again; but my reaction to all the meds has been to take quality of life over quantity. If the drugs are going to make me puking sick every day, I rather not take them regardless of even the most dire consequence. If the med is going to keep me too disorientated to even safely walk within my own home, much less trying to go outside anywhere, then I'll suffer the consequences of NOT taking the meds.

Luckily, my doctor worked with me through several other combinations of meds (a very hard two years of various side effects) until we got something that not only doesn't make me puke every day; but lets me stay awake through life without those horrible nightmares.

I give you guys major props for living through those side effects for so many years; but I just couldn't accept living like that with Sustiva.

simon2:
I have just done exactly what one of you guys wrote he did: told my doctor "Take me off Sustiva! Now!"
I had been on it for two years and felt it was driving me mad....anxiousness, depression, disorientation, dreams, etc. I actually didn't know myself.
I was taken off immediately upon request and felt better from that day...am now on Reyataz for the last four weeks...no ill-effects so far.
Shouldn't we be discussing the quality of life we can expect to have on these drugs?
So many have written in anti-Sustiva....shouldn't the side-effects be a little more spoken about? Why did it take me two years to say I could not take it anymore?
Would love to hear others' experiences.
I think the moral is: if it doesn't feel right, speak out!
Love to everyone,
Simon

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