Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 As long as we are sharing... It has always been my understanding that the dosages for meds is based on generalities. Since we are all different, sometimes we have to get creative in our dosing. I started on sustiva two months ago after being on a STI for over a year and a half. I, too, had the foggy side effects and spent most of the day feeling like I was hung over, slept through my alarm every morning and,therefore, was always late for work. After the first month of " sticking it out " and despite the fact that my vl is undetectable, I told the doctor we needed to do something NOW. She agreed and felt that since I am very petite, we would try lowering the dosage to 400 mg/day instead of the 600 that is standard. I wholeheartedly agreed since my previous doctor always adjusted the dosage of my meds to suit my body weight. That was 2 weeks ago and boy has it made a difference. I go back in for test in a few weeks to see how the lower dosage is performing. By the way, I have a friend who adjusted to taking 200 mg 3 times a day and he is doing just fine on it. Judi Sustiva > My experience with Sustiva was truly life-changing. > I switched from my PI (Viracept ) regimen because of the appearance of > lipoatrophy in my face (the sunken cheek, veiny arm and leg syndrome). My > doctor warned me about the possible CNS effects which would apparently > diminish within a month or so, but nothing could have prepared me for what > was to come. > I immediately felt completely strange, spending each day in a stupefied state. > I did not get any of the vivid dreams/nightmares, but I was disoriented all the > time. Needless to say I was forced to take time off work as an aircraft engine > design engineer. After a month of suffering through the " sustiva fog " , as I like > to call it, I begged my doctor to change me to something...anything else. He > strongly urged me to stick with it, since the Sustiva was having the desired > effect on VL and CD4 counts...so I reluctantly and sadly agreed. Months went > by, Short term disability turned into Long term disability, then to Permanent > disability and Social Security. I was so disoriented and so depressed I felt like > life was not worth living. After nine months of " toughing it out " and searching > for a way out of this depressive fog, I finally found the inner strength and told > my doctor and my long-time partner that I'm dumping Sustiva and switching to > Viramune even against their advice. > Within a few days my whole mental landscape changed back to old familiar > patterns. The fog lifted, despair disappeared, life was again sweet. > If there is a bright side to any of this, I feel lucky now to be categorized as > " permanantly disabled " . The Sustiva fog pushed me into a whole new way of > life. However another way of looking at it is that Sustiva destroyed my 25 year > career, but I don't think that any more. > So, if there is a moral to the story, it is : Trust your own instincts when starting > any new regimen, particularly one involving Sustiva. Don't be pressured by > your doctor or partner or friends. Be afraid of the serious negative cognative > effects of Sustiva. By comparison, for me the Viracept diarrahea and the > Crixavan itch were a picnic. > I read this page every day and I learn a lot from all your postings. This is the > first time I've actually posted a message and I hope it helps some of my > brothers and sisters who struggle and search with me. > > > > If you received this email from someone who forwarded it to you and would like to join this group, send a blank email to lipodystrophy-subscribe and you will get an email with intructions to follow. You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the group. > > For those of you who are members already and want to switch from single emails to digest or viceversa, visit www.yahoogroups.com, click on lipodystrophy, then on " edit my membership " and go down to your selection. The list administrator does not process any requests, so this is a do-it-yourself easy process ! > Thanks for joining. You will learn and share a lot in this group! > > Forward this email to anyone who may benefit from this information! Thanks! > In Health, > > Vergel > Interim List Administratory benefit from this information! Thanks! > In Health, > > Vergel > Interim List Administrator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 hi it is so interesting to hear your story about taking Sustiva. I have been taking Sustiva for long time now and my life has not changed at all. My work requires a lot of concentration and since I have been taking Sustiva I perform my work in the same fashion I used to perform before and after the disease. It is true about the dreams since I have been taking Sustiva I dream a lot but I am probably one of the few lucky person that taking Sustiva has not effected my way to perform my life. This is my experience with Sustiva that like you I am posting on on this great site to share our emotions and experieces. Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 She agreed and felt that since I am verypetite, we would try lowering the dosage to 400 mg/day instead of the 600that is standard. I wholeheartedly agreed since my previous doctor alwaysadjusted the dosage of my meds to suit my body weight. That was 2 weeks agoand boy has it made a difference. I go back in for test in a few weeks tosee how the lower dosage is performing.By the way, I have a friend who adjusted to taking 200 mg 3 times a day andhe is doing just fine on it.Judi ********* Judi: Good point, but PLEASE tell your doctor to measure your Sustiva blood levels right before the next dose (it is called TDM- therapeutic treament monitoring). You need to make sure that you have enough medicine in your blood. It is very easy to get non nuke resistance! Also, try to take your Sustiva on an empty stomach or at least two hours after eating since food may increase its levels. VergelDirector, Program for Wellness Restoration (PoWeR)An all volunteer non profit organizationwww.powerusa.org AIDS is not over. There are 42 million people infected with HIV and 20 million people have died so far while 14,000 people are infected every day. 8,000 people die everyday of AIDS while rich nations and pharmaceutical companies watch. Only 5% of those needing treatment get it. We will be remembered by future generations as the people who allowed greed and profits to be more important than human suffering and lives. Let's not turn our backs to the new holocaust! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 In a message dated 07/30/2004 4:39:47 AM Pacific Daylight Time, thadd1@... writes: > What did you switch to? I feel I have similiar problems. > Thad Like many, I couldn't tolerate Sustiva (nightly nightmares that someone was trying to kill me--not pretty) I switched to nevirapine (Viramune) and had no problems, and it was just as effective in keeping my viral load undetectable. Look up the " 2NN study " if you or your doctors need proof that's it's just as effective as Sustiva. It can cause a rash in the first 6 weeks or so, and women and those with CD4s over 250 should be on the lookout for changes in their liver function tests (see Al's post.) But it seems most people tolerate it fine--I know it sure saved my sanity. Good luck! Jeff in San Diego Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 I have been on Sustiva for a week and it is having a very strange effect on me. Depression and severe mood changes. Will they wear off? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.