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RayZ
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Reged: 07/18/08
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Posts: 4
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Hey folks - Bummed out and need your help!
#240766 - 07/18/08 03:44 PM
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Hey-Been using this site for a long time, but never posted before. I have been POZ since 1987, which was contracted in 1984. And, I am still here!!
I have been on EVERY antiviral drug approved by the FDA. Recently, I had to change my meds because Atripla (ONE a day) wasn't working any longer. So, guess what - now I have FOUR different meds I have to take...and you know how it goes.
Now, I will be taking INTELENCE 120, VIREAD, NORVIR and PREZISTA. The problem - side effects. After ALL these years, I have NEVER read the side-effect labels. This time I did and had a big time meltdown.
Because of everything I read, I haven't started these yet. Can anyone shed some light on these drugs (my HIV Specialist said a couple were so new that I was the first she had prescribed).
And, if anyone has any words of encouragement, that would be great too!
Apologize for the long email....just dealing with a big blow!
Ray
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Bear60
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Legend
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Reged: 12/21/05
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Posts: 1390
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HI Ray
As you know this is not an "Ask the Experts" forum, so no one can give you medical advice except a doctor , including your doctor.
I am here just to give encouragement and to tell you that there are people here who may be able to comment on the specific drugs you mention. I cannot.
So I guess what I can say is this: in my experience people who look up stuff on the internet and read labels, then think they have all the symptoms described are doing themselves a big disservice. If you have been at this since 1987, you know that stress can cause a lot of problems. If you have a complaint you take it up with your doctor. Now you dont mention that you have had problems with side effects in the past. But having been on so many drugs you surely know a side effect when you see/feel one. I say relax and hope the new combo works for you. Dont most Doctors recommend that you give a new combination more than a few weeks to work before assuming that side effects are a problem?
I know I have a friend who stopped taking his blood pressure medication because he didnt like the side effects ( which by the way were not serious) and had a stroke. He should have continued to take the drug until his doctor could change it.
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6 ft tall poz bear in Philadelphia
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Jv40
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Reged: 04/17/08
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Posts: 14
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Loc: Kent, UK
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Hi RayZ,
Well like Bear said it about Doctors, they are the only ones to properly advise and answer all your questions. But I am on a similar quad regime to the one you have been prescribed so I thought I'd let you know how its been for me.
Last year I got ill very quickly, from complete health and no meds in March I had degenerated to not being able to walk, talk properly, no strength to hold things, terrible shakes, numbness down one side, constant dizziness & nausea by September. MRI and lumbar puncture gave me a diagnosis of PML. My consultant was getting advice from a Professor who had been in HIV from the start of it, and I know they also sought advice from clinics in the USA. They immediately put me on Prezista (3 x 300mg tabs Danunavir); Truvada which is a duo combination of Emtriva & Viread (Emtricitabine 200mg/Tenofovir 245mg), & Ritonavir (Norvir). They acted fast and put this comination together the day after my diagnosis. Within four days I was starting to recover, and 9 months later I am almost fully recovered and back working again as a decorator. My memory isn't great and there are gaps there now so as well as all the physio I was doing, I've also had to work on brain exercises.
I decided to take my regime in the morning as I was concerned about not sleeping well if I took them at bedtime. Initially I did not notice anything apart from bad dreams. And had no other side effects at all - I could hardly believe it. The abrupt halting of the symptoms, and the swift reversal led my consultant to believe that it was not PML, and had in fact been brain disease of some sort that was brought about by my CD4 dropping sharply due to a very bad cold and bad ear infection.
A 2nd MRI showed conclusively that it was not PML, and although I tried to come off the dizzy/sicnkess tablets, I ended up staying on 4 a day to counteract effects of meds.
All liver, kidney function been good throughout with testing every 3 months. Cholestrol slightly up which is a side effect of one of them, can't remember which. Another bonus I put on some weight after looking too thin for years.
To conclude I would say I was so ill and my life was so desperately awful in that state that I cannot allow myself to think about the toxicity of the drugs. You said you're still here since a contraction from 1984. Mine was 1986, and there's no doubt I'm only here because of the drugs.
Don't hesitate to start on them. You've tried and tested a lot more drugs than me so you must have an even greater need for them. I hope they work well for you. Let me know, you are the first person I've read of who has been prescribed a quad combo. Oh yeah I took AZT in the early 1990's and for all the anti-sickness tablets I was taking, nothing got rid of that dreadful permanent sick feeling. This regime doesn't compare to that - for me anyway. I hope its the same for you. Being well on the meds means you can to a large degree forget about being on them.
Good luck to you, and please let me know how its going.
Julia
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420bmxer
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Reged: 07/19/08
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Post deleted by TheBody
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Brandy
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Guru
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Reged: 01/19/06
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Loc: Oklahoma,USA
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Im with Bear although Im not on the same meds as you will be all I can say is that everyone reacts differently Ive taken meds that had all kinds of side affects but I never had any myself I have also taken some that had little side affects in most people and I couldnt take them at all. what Im getting at is each person is different although we have the same disease our bodies process things like meds in very different ways. DONT let the side affects warning scare you off I know if I had done that I wouldnt be here today Im sure most of us could say the same thing. I would psych my self out if I read the lables before taking them  so I personly dont until Ive been on the meds for a while or I need to take something and I need to check for med reactions with over the counter stuff (cold meds ect)I will keep you in my thoughts
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take care and be sooooo safe love,
Brandy
Live in the Moment!!!!
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RayZ
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Reged: 07/18/08
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Posts: 4
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Hello - Thanks for the link. I started watching today and will wrap it up by Monday. How are you doing? What's your status, and are you coping OK?
I am finding out it is so very important to have people that know and can relate to this serious disease. My parents have been concerned for me all these years, but can't actually be there for me in certain circumstance. Does that make sense?
Ray
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Jv40
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Reged: 04/17/08
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Posts: 14
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Loc: Kent, UK
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11 posts of this moronic video from 420bmxer within half an hour. There are people who read this forum who do need protecting from this crap because they are desperate enough to believe it. I'm starting to really wonder about the benefits of coming onto forums like this where I have to share space with the lunatic fringe.
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I don't understand people like you that refuse to look at every aspect of HIV/AIDS, you just believe what you are being fed by the big pharma's and the billions of dollars they are making out of you and me, I believe the drugs are nessesary to keep us alive but I also believe it is one big money making scam, there are other things contributing to AIDS in the body that are being selectively ignored, do you really think for one minute that the pharmas want a vaccine or a cure ?????? all they want is to keep us alive and taking expensive meds every day.
The whole thing is tragic, it wouldn't surprise me if HIV was man made as a money spinner.
These drug companies get grants from government to develope drugs then they charge an absolute fortune for them, HIV AIDS has made many people a great deal of money and that just stinks.
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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oldwoman
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Guardian
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Reged: 05/12/07
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Posts: 435
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Loc: Phila,Pa
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I don't have a problem with somebody expressing their opinion or having a different one than I do,but I do think that it's ridiculous to post the same thing over and over on every page of the board.
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Jv40
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Reged: 04/17/08
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Posts: 14
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Loc: Kent, UK
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Duh here we go, another conspiracy theorist! Come off it. If you really think it might be a man-made money spinner you are perilously ill informed although I've seen on other posts that somebody took a great deal of time and trouble to provide you with a lot of information - I guess you need a whole lot more along with a bit of basic education. I don't pay a penny for my drugs and judging from what I've cost my government in treatment and tests the very idea is so laughable as to be absurd. So its laughable and you're absurd.
People like me who have had 20+ years to look at every aspect of HIV/AIDS are just a little ahead of you. If you'd spent every minute since you found out, which you evidently have not, you still wouldn't be close to my degree of searching.
Do please explain what other contributing factors to HIV being in the body it is you are referring to.
You don't like the drugs companies making money? Well why else would they make them? I thought it was a very expensive business they are in but you obviously know different.
God what is it with your poster name?
And I'll tell you what I think is tragic. I came on this forum looking for something, people in a similar position to me, and instead I find people like you who just want to fight, and people like that video-spreading moron who want us to just stop taking our drugs and essentially die sooner rather than the intended much-later.
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There is no actual debate here, this is a forum for support, education and information, if those are not interest please keep going. Sometimes it is better to realize who you are talking to and the mentality of the people that you are dealing with then trying to force your views upon others... I know you guys in 20+ years have dealt with worst than a heckler......just my six sense..................... although I have not been infected for 20 years I have been affected for at least that long. I have been involved in a couple of quilt displays, did my share of volunteer work with the local pantries, and involved in many organizations who raised money for HIV/AIDS, and people are still dying from this disease. Without the drugs where exactly would we be, would we be like those folks that I delivered food to, who where frail and listening to the horror stories of horrendous deaths? My first real boyfriend 17 years ago ended up finding out his positive results while we were together. Just 13 years ago medication was introduced that slowed down the blood bath, but the drugs were not that tolerable for long periods of time which I think is the AZT. People continue to die, I have lost many friends to organ malfunction who have died from the effect of those medications. The medications today, although they are tolerable they are expensive (I spend 230/mo for insurance and my copay for my drugs is usually around 550/mo) the drugs have side effects like rises in cholesterol and triglycerides. I have to have faith, that we are on the path to a cure. We have in 25 years of actually understanding what this disease is and how it affects our human bodies. In the meantime, I totally appreciate you guys that have been infected for 20+ years, because if I can make it those 20+ who knows where we will be with this disease. Medicines are unknown, that is why they call it the practice of medicines. I will agree that the government owns a lot of the responsibility, in the spread of this disease. The United States still only funds abstinence only education in schools, and look where that has gotten us. The spread of HIV is up dramatically and basic sex education really does not teach the basics of safe sex, and why it is important. The drug companies may not be needing to sell the drugs to us at such a marked up rate, but they are the only ones really involved in research for a cure. I can only have faith, and live my life for me. D
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Jv40
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Reged: 04/17/08
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Well who are we supposed to be supporting? Some of the threads I'm reading, and you are actually responding to, are some of the most stupid questions I have ever seen. It can't be possible to have so many idiot people in the world.
As you kindly suggest, I shall 'move on' and let you get on with whatever it is you're doing here, on your forum.
My last pennys worth, if this forum is to educate & inform, then how is it educational to all those extremely silly people out there to allow absurd opinions such as not taking meds and HIV being a man made money spinner (how, how, how can anybody think this) to fly freely, not to mention all the other crap I've had to read on here.
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You take it all with a grain of salt, this board is not moderated. The questions may be stupid to you, a seasoned person living with HIV, but most people are really not educated on what this disease is nor have they seen the effects of dealing with the pandemic. Most people are afraid of what they do not understand, almost like yourself. You are afraid to allow yourself to become involved with educating others, because you do not understand how it is done. There will always be ignorance in dealing with people, it is your job to educate and help. However, if you must leave, then good luck. You should try one of the more heavily moderated boards, they do exist. D
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Jv40, I really don't care how long you have been reading and researching, you choose to believe what you will and I don't fault you for that, I like to keep an open mind and although I am currently on medication for HIV, I don't close my mind to some of the very smart people out there that question the science and the validity of what we are being told by the establishment, the fact that you have lived 20 years or so and some don't see past 2 makes me think there are other factors, I was infected as little as 12 months ago and had a CD4 of 140, there is something else at work in my body that is being ignored, that is my belief and the belief of others, these doctors that are telling us to take AV drugs don't have all the answers either - far from it, unfortunately there is nothing else to do except take the meds, you will never know whether it was the right thing or not.
Oh and BTW your meds might be free to you but they certaintly are not free to the NHS, Atripla cost the tax payer almost 30 quid per tablet.
You are entitled to your opinion please don't critisise others for their opinions, it is my right to believe what I want as is yours. I don't understand on these forums when people actually throw insults because they disagree.
And just to finnish, it is amazing at just how little these experts know about HIV, they keep changing their minds about various aspects of progression, where the virus actually resides in the body, etc etc perhaps it's time you started doing a little reading again and educate yourself.
I have no time to begin debateing with you a fruitless exorcise anyway as you would insult my name or my education or something istead of actually refuting some of the skeptical opinions in a scientific way as you are so clever
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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Samurai
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Reged: 06/25/08
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Posts: 68
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Loc: Texas, USA
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Boy I missed this party line! Looks like the steam got hot.
I'm on four anti-retro-virals and have no side effects.
HIV is not simple. There are all kinds of possible combination of infection and resistances.
I trust my doctor and he has NEVER let me down.
Bear is right on.
And don't assume side effects unless they happen.
Best of luck to you dude.
~Samurai
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I am forever amazed at the abundance of hydrogen and ignorance in the universe.
~Albert Einstein
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