hi I have been hiv + for about 7 years not on treatmeant but wen see my doctor today now talking about putting me on treatmeant now but I don't no what to do if anyone out there can help me and talk to me about still leanring about it all
be put on treatmeant or not??: hi I have been... - HIV Partners
be put on treatmeant or not??
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dawnmaire12
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I would start treatment asap. As it is proven to prolong your life expectancy. Near enough a normal life if all goes well
Yes to treatment. Being on treatment shows a 50% improvement in organ function over long term.
They would not suggest going on treatment if you did not need to . Unless of course you would prefer to die.
I can say this now, as I was in the same position as you only a few months ago, I have only been diagnosed for 2 years and my doctor said about taking medication and I was also really worried...will there be side effects, will they make me feel ill, so yes I was really concerned. But after asking the same question on here I had a good response and I was told there was nothing for me to worry about. I've been on my medication for a month now with now issues or side effects.
I'd go with what the doctor says as you'll need to take medication eventually.
Hope this has helped.
Take care x x
I would start treatment soon x
Unless your t-cells are below 250, I would say no. I have had HIV for over 30 years now and I was stupid enough by pressure from doctors after having it for 23 years, to start the medication. Since then, I have had cancer, my bones are disappearing, had hip replacement and other things that now they are finding out with people that are on the medication is causing very early ageing in people as they age. Meaning that all the diseases associated with a person's age, are twenty years earlier than they would be if you are not on the medication.
Remember these drugs are forms of poison your taking. And what does poison do to your body after taking it for years?
As a doctor and someone recently started on meds, I would like to respectfully disagree with the Previous post by Positive52. While side effects such as osteoporosis (which can be managed with effective vitamin d supplements most of the time) are known, the newer generation of meds have far fewer side effects. For example, the side effects of anti-histamines caused more people to go off of treatment than the side effects of the current meds. Also, cancer is not a known side effect of the meds and can happen to many people regardless of HIV status though I am sorry for this difficult diagnosis for Positive52. The meds these days are not toxic and designed to be specific for the HIV virus. They work so well that I was undetectable within two months which is quite normal.
While the standard of treatment 20 years ago was to wait until cd4 counts decreased to 250, the guidelines increased that criteria over the years to 400, 500, and now the best recommendations state that treatment should be started at the time of diagnosis regardless of how good your cd4 count is. The benefits to yourself and any partners is greatly outweighed by risks from medications, especially as your doctor can regularly monitor you for side effects and change your therapy if needed. There are many different drug regimens that are shown to be safe and effective these days! For reference I take Truvada (two drug combo) and Tivicay
I'm happy to answer any more questions, but your doctor may have brought this up not because you're doing poorly but just because what we know about treatment has changed, and this is the best way to live! These days meds are a no brainier as long as you can take them consistently.
Hi you there can I ask you a question as you are a doctor
hi doctor thank you lots to think about and thank you for your advice x
Very well said. Thanks.
As a doctor, what kind of doctor are you? When HIV/AIDS first hit and we were told to take the meds back then, there so toxic, almost everyone died from them. Now yes the meds are better but not as great as you doctors claim. I'm very knowledgeable and at times my own doctor is very surprised with what I ask him. You say they are better, and the side effects are not bad, that is true. But and here is a big BUT it's what they are doing to our body that we can't see from the outside.
My doctor has told me that there is a connection with cancer with the meds, and osteoporosis can be managed by vitamin D, until you fall. I was 6', now I'm 5'10" and because of what the meds do to your body there is a very good chance I'm going need back surgery.
I also notice you didn't address ageing. Why was that?
All these drugs are still expertimental, and doctors won't know for years for sure what all they are doing to a persons body and also remember each person is different.
Oh by the way, did I mention that when I wasnt taking these meds for those 23 years, my t-cells were over 1,000 and I was undectable.
And yes these drugs are still toxic, just not like they were in the 80's.
I have to wonder thou at times, and a friend I knew back in the 90's that his father owned the huge Graf company, he had HIV/AIDS and his father sent him to the top doctor, give him all these different drugs and he told me that finally they give some combination of drugs, supposedly top secret and guess what he didn't have HIV no longer. He showed me pics of when he had it and when I knew him. Showed me test results before and after and his test results showed me he actually didn't have HIV any longer.
He hear all the time about how the drugs companies have cures and yet they don't put them out because they are making big money on the drugs and yes that included the doctors prescribing these drugs, so I got to say with what I have been thru and what I am going thru, I don't take much stock with many doctors these days because they have lied about what these drugs actually do to your body and in there eyes what these drugs are doing to your body isn't what they call side effects, so they don't bother telling you when your ask about side effects.
I forgot to ask you something. You claim that these drugs are not toxic. If they are not toxic, why does a doctor tell you not to take more than one pill (of the same drug)at a time? My doctor told me if you take more than one pill, like you took two pills instead of one together, it could kill you. Sounds pretty toxic to me.
I'll try to answer your questions as best I can and not miss any, there were several points, so if I miss anything it's likely because I overlooked it.
To start with, I'm a pathologist and focusing on medical research, so I don't see patients, but from my training, I can say that unfortunately not all doctors disclose side effects fully or may be experts in an area like HIV and it is best to be seen by someone who specializes in this disease so you can be best educated. This also means that I don't get any money from prescribing medicine or by working for a pharmaceutical industry- I could make a lot more money that way, but I've decided to focus on making a difference by expanding what we know about disease and how to treat it.
Regarding your first point about the meds affecting your body on the inside, we have a good idea of what they might do, because of clinical trials that monitor 1000's of patient years (# of patients x years of follow up), while this does not completely simulate taking a drug for several decades, it comes pretty close. For instance we now have Tenofovir alafenamide that has less bone toxicity than the original form called: Tenofovir disoproxil fumarate. I would thus say that the drugs having passed phase 3 clinical trials are not experimental and side effects are known even if unpleasant (from a physician's standpoint, having a risk of developing a treatable condition as a side effect over many years is preferable to the known alternatives of life-threatening infection that can end a life within weeks).
I didn't address ageing, because I didn't understand what you meant. Ageing itself can't really be measured, but if you mean osteoporosis hearts attacks or cancer. For osteoporosis, this can be a known side-effect as has been discussed. For cancern HIV itself is associated with increased risks of Kaposi sarcoma, Non-hodkins lymphoma, and cervical cancer (and a few more like anal/ liver cancer related to diseases like HPV and HepB/C), However each of these cancer risks are decreased by being on meds. As these cancers are not associated with ageing as much as colon, prostate or breast cancer, and whereas these cancers are not affected by having HIV or taking the meds I would say that being on meds does not increase aging. One point about cardiovascular disease (including heart attacks, stroke and other associated blood vessel diseases), the risk of this is increased by the virus secondary to inflammation in the vessel endothelium, and the drugs cannot full mitigate this inflammation, but going off of drugs has been shown to increase risk of cardiovascular disease. There were several protease inhibitor drugs that used to cause lipodystrophy and diabetes which could contribute to heart disease, but again there are improved drugs that don't cause this as much. Either way many precautions to improve your heart health (not smoking, lower cholesterol, consistent cardiovascular exercise) are important.
Next, it sounds like you are an elite controller (normal CD4 with undetectable viral load for many years). However this is only occurs in 1/200 people, not "a lot" of people. Also a study has shown that elite controllers have more hospital visits as a negative healthcare outcome: aidsmap.com/Elite-controlle....
And when you say toxic, that's a tricky word. Anything can be toxic in a high enough dose, too much water can kill you and more than 4 grams (~4-6 pills) of acetaminophen can induce irreversible liver damage. There are some drugs (Aptivus (tipranavir) and Prezista (darunavir)) that could cause strong liver damage in a small number of people, but this can be monitored by AST/ALT levels by your doctor. Which drug are you talking about? There are several dozen drugs and it is unfair to the rest of them to lump them all together.
In terms of an HIV cure, I find the conspiracy theories unfounded especially by a recent example in HepC where a drug was developed that cures 98% of patients and now the company is making loads of money. What people don't realize is that even if one company is making money off of treating a disease and not "curing" it, another wants to compete and do better by making a treatment that will be more efficacious. The company doesn't know whether it would be effective as a cure until phase 3 trials, which must be made public. There are several experimental treatments that I've seen lead to undetectable viral loads for several months drug free, but there is no treatment except for the Berlin patient (bone marrow transplant from a donor with an HIV resistant mutation; transplant for leukemia) that led to sustained (>2 years) of undetectable VL drug-free. This is probably more than anyone wants to read, but I think it addresses each of your points. Even if it does not do so to your satisfaction, I appreciate the opportunity for the respectful dialogue
As a doctor, do you know everything? My point exactly. You may know something, but unfortunately you don't know enough.
The whole issue of aging, which there are huge studies going on now, and very few answers yet on why the drugs are aging us quicker than if we were not on them. I'm quick surprised you don't seem to know what I'm talking about.
Personally, I think it has a lot to due to the fact that we are taking drugs that we have no clue what the long term effects are because we haven't taken them long enough and the doctors are first finding out now they are greatly hurting out organs and other things and these studies because they are newer in the sense that people entering into their fifties, on the newer drugs are just finding out what huge damage it does to their bodies that doctors are just starting to realize.
Also, my question to you is this. As you stated above that a small percentage of people that haven't taken the drugs stay healthy and don't need to be on them. Why are their not studies on them to find out why their immune systems are not breaking down? Common sense tells me right there, they could be cure if they found out why some remain healthy and others don't.
Also, you can call them conspiracy theories but you might be very surprised with what you don't know by what the drug companies hide. Much less, what the government has hidden for decades that we are just finding out now. Just because you say certain studies have to be released, doesn't mean they are.
For example, most people believe in climate change, but certain companies and people still think that climate change is bs. You can give them all the evidence to support what science is telling you, but they still believe it's bs.
That happens in medication as well, and what the drug companies and government is hiding might be just that, a cure for HIV/AIDS. The person I told you about is still alive and is HIV- and when ten years ago he was HIV+ and almost died. It's funny, when you have a lot of money and excellent connection in this world of ours, what others would do to be cured, when after seeing what he showed me and proof that he did have HIV and now he doesn't because of some drugs that someone give him, that would strongly Incate that there is a cure for HIV, doctor immediately say it's not true. And yet, after years and years of powerfully drugs companies hiding things that do come out in time, doctors will always follow what they are told instead of making sure that maybe they could be hiding something, because they are making a killing on these drugs and as we all know, money is worth more than saving lives.
And to what you call conspiracy theories, might not be. There is one person so far as I know that knows that he is cured of HIV and he can tell you it's not conspiracy theory.
In my honest opinion, after 7 yrs I think it is a good idea to start on meds. Uncontrolled, the virus does nothing but tear your body down. Making you more susceptible to infections, cancer, Pneumonia, and a host of many other issues. The HIV drugs today are a walk in the park compared to 30 years ago. For a few weeks, you will generally feel sluggish and maybe gastrointestinal discomfort. But, it will pass. Being uncontrolled, HIV will only continue to make you more unhealthy than taking the new HIV cocktail. I hope this sheds a little light on your decision.
hi thank you for your replay its make think more about after reading your your reply x
You are not totally right, a lot of people with HIV never have any problems with getting infections and for some reason the virus doesn't do anything to their bodies.
Years back I asked my doctor why there wasn't studies being done on these people with no problems, because I was one of them. He didn't know. 23 years with no problems, and then I was pressured into taking the new cocktail drugs and now I have had major problems with what the drugs have done in 12 short years. These are not side effects, this is what the drugs do to your body inside, like cancer, ostoeporosis, and kidneys. Ageing is speeded up by these drugs, so everything you would get in your 70's, you get in your 50's, and yes like heart attacks are very likely by being on these drugs.
They are helping you now, but it's what these drugs are doing to you in the longer term that your not going like.
Where did you get your information on that the virus causes cancer and other conditions if you are not on the pills?
Just jump on meds as soon as possible.There is no need to spare some time and there is only way to love a normal life to us - just taking the meds. Despite of all possible side effects (more likely you don't even feel them with the modern medication) ot's the best possible way! Good luck and follow your doctor's advices. 
thank you for your advice x
If I had followed one of my doctors advice in the 80's, I would be died like everyone else in the 80's is.
Never just go by what a doctor tells you. Do your own research.
Not all doctors are very knowledgeable on HIV/AIDS. They go by what they been told.
If you go into a doctors office and ask them questions about the long term, not the side effects of this virus. There is a difference. You might change your mind with jumping on the meds so fast.
Hi there. Talking about it is the best thing to do. Well done for asking. Are there any peer mentors in your area?
I personally think it makes a lot of sense to start medication. Just get your head round it and then take the leap.
xx
hi that the problem i don't have no one to talk to xx
Why you think it's smart to jump on the meds just because a doctor tells you?
thank you everyone give my lots of advice there i really do need it x
My advice on everyone here is read. Don't go by what your doctors are just telling you. If I had, when I first got HIV, I would be died.
Yes the cocktail drugs are a lot better, but if are t-cells are doing fine, why get on drugs that are not needed yet.
Doctors talk about side effects, but side effects are not what the drugs are doing to you, long term. Ask your doctor what the long term effects are on these drugs and not the side effects when you first get on them.
Yea it's fine and dandy what they do now, and you will live a better life on them now, but the key word here is NOW.
Give these drugs time to work in your body for what damage they do in the long term. This is what the doctors are not telling you. Boy are you in for a surprise when out of the blue they find a tumor in you, or you fall and find out that your bones are disappearing. Yes, this is what the drugs are doing to you. And this what the doctors know of now.
Again ask your doctors what the long term effects of the drugs are, not the side effects. There is a HUGE difference. It's what they are not telling you, you need to be aware of.
The long term side effects of taking HIV meds do have drawbacks. Yes, you may get osteoporosis from the meds in the long term, but somebody is wrong bysaying they cause cancer. Uncontrolled, the virus will kill you, and quickly once you are torn down to a skeleton. I've been HIV positive for almost 30 years. Been a guinea pig for new medications in double blind studies for short and long term studies,quite a few times. I would follow your doctor's advice and start on meds. The only other option is a letting yourself go thru "wasting syndrome" which will leave you looking like skin stretched over bones, and then you die.
So, start on meds.
Take your meds as soon as possible! That's all there is to it, really.
You all are fools by listening to doctors unless you, yourself read more about your virus. Can warn people, guess you will find out as you age.
Hello, guys! I just got my latest results. No sttds, infections, good blood results, cd4 - 500... Feeling very well as always so still not thinking about starting the treatment. Have no idea if I'm right doing so, but... It seems there is the biggest question ever: "To start the treatment or not..? If Yes, so when..?" (facepalm) lol
I agree with others, the longer you wait for treatment the longer it takes to get to undetectable. My Doctor waited untill my viral load was 50,000 + and after starting treatment had an allergic reaction to the meds ( kidney failure ) which made recovery or stability much more difficult.
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