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sunkyst
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Reged: 03/22/06
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Drug Holidays may be over for HIV patients.
#216577 - 12/01/06 10:06 PM
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Good article on a new study about HIV drug holidays.
http://abcnews.go.com/Health/ReproductiveHealth/story?id=2687714&page=1&CMP=OTC-RSSFeeds0312
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Blixer
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Legend
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Reged: 01/10/06
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Posts: 599
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Loc: Missouri
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Even though the SMART study is a very important one and was stopped very early on because of the significant issues, it had parameters that set the "holliday" at a CD4 count of around 350 and the restart at a CD4 count of around 200 or so. The study demonstrated that those parameters definately don't work for treatment interruptions. But there have been some much smaller studies that set the limits much higher... for instance in one, I believe the starting point was like 500 or above and the restart point was like 350. The results from that study were not nearly as dismal as the SMART study. It was too small to really draw any conclusions but it may be that starting with a less damaged immune system could allow for drug holidays. Lots of area for cautious research with those different parameters. And of course, everyone's body tends to react differently. Just some thoughts.
Here is a quote from an article posted on Aidsmeds about the whole situation: "It is important to note, however, that other studies evaluating treatment interruptions of this nature have reported more encouraging results. In the August 5 edition of The Lancet, for example, the STACCATO trial found that treatment interruptions reduced the risk of side effects compared to those on continuous treatment. The study, enrolling 430 HIV-positive patients, used a CD4 count of 350 to signal the restart of treatment, which differs significantly from SMART's 250 CD4 cell count cutoff."
It discusses the SMART study and some of the other parameters. Here is the link to the entire article. http://www.aidsmeds.com/news/am20061130.html
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David
Sustiva, Epivir, Videx EC
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i belive this would be more feisable if not just in my mind but in a reality,why would someone risk doing it when there numbers ae low and risk making them lower,and then hoping for the drugs to hurry up and jump into their system,and regain their effectiveness?and there are resitance issues if they didnt jump right back into the system and work,risking many to have lower numbers than they ever had.even though they are trying i myself wouldnt do it,even though it wouldn be a pleasant thing for those of us like myself who are the ones who need the break from the drugs,because of the side effects.th eonly way it would make any sence is to do it with people who do have much higher numbers this way they dont get to a point of no return waiting for the drugs to start to become effective again,although wouldnt it be great if there was a way to do it without inpinging on the quality of the meds?take care
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ScotCharles
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Reged: 05/06/05
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Posts: 924
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I just did a month long drug holiday to give my liver a break. My liver test improved markedly. Bilirubin returned to normal, ferritin levels normalized, amylas/lipase normalized, and my thrombocytopenia went away. I am back on my regimen now and am awaiting results of my recent blood work. I hope all will be well. Unfortunately, my painful neuropathy did not improve which I was desperately hoping it would. Elavil helps with the pain but is making me very drowsy alll the time and even at 20mgs the pain continues on and off. The muscular weakness in my legs and arms is not going away which is beginning to worry me. I am all for drug holidays as I believe they prolong the healthy time with HIV/AIDS.
The meds for all their wondrous prolongation of life have very severe long term consequences such as liver disease, nerve damage, and heart disease. AIDS is one son of bitch over the long term, my friends.
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Life is a river.
Carpe diem.
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Blixer
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Legend
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Reged: 01/10/06
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Posts: 599
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Loc: Missouri
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Scot, glad your liver numbers improved. And yes, HIV/AIDS is still a bitch over the long haul. I believe that. Some of you who are long term survivors probably got the brunt of some of the more nasty effects of early drugs. Hopefully we will continue to see improvements in the drugs and less toxicity. I know that isn't much help for those of you already dealing with the other long term effects.
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David
Sustiva, Epivir, Videx EC
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hey ,scotcharles do you take neourotin?i take it for neouropathy,1800 mg a day.it doesnt make it stop but it does seem to help the throbbing in my feet,but the tired muscles in your legs i was told to walk as much as possible for that but i dont know if its adviseable for you to do thatr if your not sure the problem.has your doc had you get a nerve induction test?to see if its nerve damage due to neouropathy or if in deed it is the muscle tissue,or both.take care
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ScotCharles
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I'll ask about neurotin today when I see the neurologist. I had the nerve induction tests last week. What an SOB those were. I felt as though I was hooked up to a wall socket the whole time. Little reaction in my left hand and both feet. Shit. Weakness comes and goes. Today is no bad. The loss of peripheral vision in my left eye is bugging me as I feel as though I am looking at the world through only my right eye.
Had a follow-up MRI as well last week. Cross fingers that is clear.
Cheers, mates,
ScotCharles
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Life is a river.
Carpe diem.
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ScotCharles
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Legend
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Even the new ones cause loss of mitochondrial DNA and the long term significance of that loss is completley unknown. Seems to make women infertile, however, so that's not good.
Is anyone having trouble with Truvada? My HIV doctor told me that there is increasing anecdotal data that the binding agent in Truvada causes neuropathy and pancreatitis.
Glad to see you're doing well. My hands are starting to shake too much to type.
Cheers,
ScotCharles
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Life is a river.
Carpe diem.
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There are some drug holidays that can be done. This is one study. Alll though have a risk. This study just showed clearly what risk there was. If you had a high baseline CD4 count and you take a break and start meds before your CD4 falls below 350 then you should be ok. Otherwise you are taking too big a risk.
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i hope all goes well for you,i had an mri done and the docs said they cant rule out leukoencephalopathy,because of abnormal matter on brain.hope you have a pass on that,good luck.keep us informed.take care
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scotcharles,now thats an answer i can give you with certain positivity,yes,i and my doc feel thats how i got it.on my first regime i used sustiva with it and sustiva made me sick as a dog.but i kept on with the truvada because i didnt want to lose the use of both of the meds,thats why i now or have been i should say,have to take the neorotin,for the neouropathy,by the way did you ask your doc about it?just wondering,take care
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ScotCharles
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Legend
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Reged: 05/06/05
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MRI shows no significant loss of cortical tissue, but the neurologist wants me to have repeat MRIs done every year for the rest of my life to establish a trend line, nonetheless.
So far no ill effects of Neurotin, other than sleepiness which improves day by day. The other drug I was taking for the pain, Elavil, was awful and at 40 mgs a day made me dopey and stupid.
I hope to walk without a cane in time for New Year's.
Cheers, mates,
ScotCharles
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Life is a river.
Carpe diem.
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good deal man,glad its helping you,you have it in you to get up and walk then set the bar higher,get thinking about walking somewhere not so close to home,but just not till your ready,good luck,take care
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antibody
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Regular
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Reged: 01/28/06
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Loc: san diego, california, usa
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i refused Neurontin. no way! the dose they expect you to take is huge! not too mention the toxic hiv meds together. i'm not blowing out a kidney. the Neurontin dose is like 1800 mg 3 times a day! crazy! i have had neuropthy before ever starting the meds. i am on Atripla now. it has gotten better. i am so glad i didn't take Neurontin. i don't know if holidays are ever going to be possible for me. i would love it! my numbers never dipped below 500 so i always could. i take alot of thought of what i put into my body and lemme tell you it took alot, i mean alot to go on treatment. i have taken 100% of my pills. it's much too early for me to think about a break. i am going on 5 months on treatment. i told my Doc i would give it 2 years and go from there....
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ScotCharles
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Legend
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Reged: 05/06/05
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I understand not taking neurotin with the meds, but my neuropathy was so bad I found it hard to walk most days without excrutiating pain. Elavil was a no go as it drugged me too much. My neurologist says neurotin is much safer than the HIV meds and so far the drowsiness is abating quickly, something that never happenned with Elavil.
I also understand about the HIV meds. The side effects no matter what some say are awful in the long run. I've been taking one or the other since 1995 and have watched as one after the other, AZT, then DDI and DDC were found to have untenable toxic effects. I watched as Crixivan caused a healthy 40 year old man to swell and then have a massive heart attack that killed him instantly.
Sustiva is dreadful, casuing a sort of waking dream state with psychotic episodes.
Hang in there, sooner or later a therapy will be found that doesn't kill us after twenty years. My hope springs eternal.
Happy Christmas,
ScotCharles
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Life is a river.
Carpe diem.
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