Re: IL2 a tough treatment

[Guest guest]

Tripp, I'm just speaking for myself. I read your original post and the replies of others and I wanted to point out that one of the principles with IL2 therapy is that dose/duration are very important in determining the amount of negative reaction. The question isn't "can you tolerate IL2 therapy?" but "which IL2 protocol will produce the best results with the least side effects"? You clearly were taking a relatively intense dose and therefore had much more negative consequences. Dr. Kendall of Cornell has advocated a protocol using daily IL2 at very low doses - around 2 million units per day depending on body size. I tried this protocol and the only problem I had was an injection site reaction - redness and a little itch. Nothing systemic that I could notice. Dr. 's contention was that the big study protocol using relatively higher

doses for five days every eight weeks, which causes all the problems, could be avoided by using what he terms a more "physiologic" [natural] dose, mimicking the bodies own production. However, one problem with daily injections over long periods is that you start to look and feel like a pin cushion, and also don't get as much of a CD4 boost, although I'm now generally in the 300- 450 range whereas before I was staying mostly in the 200's. Incidentally, despite all the warnings on the vial label, which are meant for those using IL2 in a hospital setting for cancer at many, many times, the dosage that we're talking about here, IL2 in itself is not toxic. What is toxic is the cascade effect it initiates of other, inflammatory, cytokines, resulting in the flu like syndrome, capillary leak syndrome etc. Norm has pointed out that despite the apparent lack of side effects from low dose daily injections, there

is still an inflammatory response set up which is potentially harmful. I became excited when I read Norm's protocol which, like the major studies, does one course every eight weeks, but uses less per day and for fewer days. Norm seems to have a lot of experience with this, and while this may not constitute scientific proof of efficacy from the standpoint of double blind studies, a lot in HIV depends on us taking some chances ourselves, regardless of whether big studies are done. The higher dose used in the big IL2 studies, while it has many unpleasant side effects, is generally tolerable (it doesn't kill you), so I have no problem at all in experimenting with a lower dose. Like most medicines, the less you take, the less the side effects. It is also much cheaper. Dr. 's daily low dose protocol requires 9 vials every three

months. On Norm's protocol it's 1 vial every two months. That's an enormous savings for an extremely expensive drug. My first round using Norm's protocol (one vial of 22 million units is divided into three doses of 7.33 million units, and you inject once a day for three days) produced no side effects whatever. Taking Norm's advice, I asked my doctor to prescribe Indocin just in case, but didn't have to use any. I will look forward to seeing what my labs are like over the next two years on this protocol and will let the group know. So if you think you can never try IL2 therapy again, please consider using a protocol with lower dosages like Norm's. Tom in MO

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[Guest guest]

Tripp, I'm just speaking for myself. I read your original post and the replies of others and I wanted to point out that one of the principles with IL2 therapy is that dose/duration are very important in determining the amount of negative reaction. The question isn't "can you tolerate IL2 therapy?" but "which IL2 protocol will produce the best results with the least side effects"? You clearly were taking a relatively intense dose and therefore had much more negative consequences. Dr. Kendall of Cornell has advocated a protocol using daily IL2 at very low doses - around 2 million units per day depending on body size. I tried this protocol and the only problem I had was an injection site reaction - redness and a little itch. Nothing systemic that I could notice. Dr. 's contention was that the big study protocol using relatively higher

doses for five days every eight weeks, which causes all the problems, could be avoided by using what he terms a more "physiologic" [natural] dose, mimicking the bodies own production. However, one problem with daily injections over long periods is that you start to look and feel like a pin cushion, and also don't get as much of a CD4 boost, although I'm now generally in the 300- 450 range whereas before I was staying mostly in the 200's. Incidentally, despite all the warnings on the vial label, which are meant for those using IL2 in a hospital setting for cancer at many, many times, the dosage that we're talking about here, IL2 in itself is not toxic. What is toxic is the cascade effect it initiates of other, inflammatory, cytokines, resulting in the flu like syndrome, capillary leak syndrome etc. Norm has pointed out that despite the apparent lack of side effects from low dose daily injections, there

is still an inflammatory response set up which is potentially harmful. I became excited when I read Norm's protocol which, like the major studies, does one course every eight weeks, but uses less per day and for fewer days. Norm seems to have a lot of experience with this, and while this may not constitute scientific proof of efficacy from the standpoint of double blind studies, a lot in HIV depends on us taking some chances ourselves, regardless of whether big studies are done. The higher dose used in the big IL2 studies, while it has many unpleasant side effects, is generally tolerable (it doesn't kill you), so I have no problem at all in experimenting with a lower dose. Like most medicines, the less you take, the less the side effects. It is also much cheaper. Dr. 's daily low dose protocol requires 9 vials every three

months. On Norm's protocol it's 1 vial every two months. That's an enormous savings for an extremely expensive drug. My first round using Norm's protocol (one vial of 22 million units is divided into three doses of 7.33 million units, and you inject once a day for three days) produced no side effects whatever. Taking Norm's advice, I asked my doctor to prescribe Indocin just in case, but didn't have to use any. I will look forward to seeing what my labs are like over the next two years on this protocol and will let the group know. So if you think you can never try IL2 therapy again, please consider using a protocol with lower dosages like Norm's. Tom in MO

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

3 daYS of IL-2 at 7.33 a day with indocin Sr seems like an easy option.. MY question is at what point should we consider this option based on an unded vl..? Specifically when cd4 drop at a certain # and the % as well??. Would a person like myself with a stable cd4 of 500's in the 35-40% range and an unded vl consider this just to get a boost?? Thanks LUke..

[Guest guest]

3 daYS of IL-2 at 7.33 a day with indocin Sr seems like an easy option.. MY question is at what point should we consider this option based on an unded vl..? Specifically when cd4 drop at a certain # and the % as well??. Would a person like myself with a stable cd4 of 500's in the 35-40% range and an unded vl consider this just to get a boost?? Thanks LUke..

[Guest guest]

3 daYS of IL-2 at 7.33 a day with indocin Sr seems like an easy option.. MY question is at what point should we consider this option based on an unded vl..? Specifically when cd4 drop at a certain # and the % as well??. Would a person like myself with a stable cd4 of 500's in the 35-40% range and an unded vl consider this just to get a boost?? Thanks LUke..

[Guest guest]

Some people can maintain a nearly undetectable viral load, under 1,000 and normal T cell counts without anti-viral drugs. One of my friends in Sweden is like this after six years of HIV infection. In fact as time progresses, his T4 count continues to rise while his viral load declines further.

Needless to say, he has above-normal CD4+/CD25+ T regulatory cells which are the key to controlling HIV, and as a result a slightly higher than normal level of Interleukin-2. People like he should have appropriately little interest in anti-virals or Interleukin-2 therapy - his body is handling HIV by itself.

Unfortunately this state of affairs is quite rare.

Almost all people with HIV lose T regulatory cells and experience sub-normal levels of Interleukin-2 very early in the disease process. Published studies show that:

a.) people who control HIV without drugs have higher than normal numbers of these regulatory cells;

b.) people who can control HIV with anti-virals have subnormal numbers of these regulatory cells;

c.) people who cannot control HIV with anti-viral drugs have nearly none of these regulatory cells.

The bottom line is this - the immune system does much of the "heavy lifting" in controlling HIV, even when anti-virals are used. HIV is hyper-variable and so is your immune system - anti-viral drugs are not. To vary the drug response requires yet another drug cocktail.

Published studies show that Interleukin-2 injections increases the numbers of these T regulatory cells.

http://en.wikipedia.org/wiki/Regulatory_T_cell

If your Doctor chose to, he could order a count of your T regulatory cells (CD4+/CD25+ and CD8+/CD25+) when you get your T cell counts done. A normal level of T regulatory cells is 5% to 10% of a normal T cell count. In most people with HIV, the number of these cells is well below 5% to 10% of their current T cell count, let alone %5 to 10% of a normal count.

People with a T4 percentage below 22% are likely losing immune memory as entire clonal lines of T cells are wiped out. Certainly those with a T4 percentage below 18% are in this category. I would use any available tool such as anti-virals and Interleukin-2 to stay out of this situation, or leave this unfortunate state of affairs with as little damage as possible if I were already there.

I have found it to be worthwhile to normalize my T cell and regulatory cell counts, and keep it normalized, for the past 12 years in spite of the inconvenience of three injections every two or three months. I believe it has been helpful, in spite of the fact that I can easily control my viral load with Reyataz and Truvada - without Interleukin-2.

Why? If for no other reason than I don't want to lose what I have achieved. Friends who were HIV+ for less than a few years usually were able to normalize their immune system all at once with three days of injections. They have found using Interleukin-2 only every none months of so, in combination with anti-virals, maintains their normal T4 levels and their levels of CD4+/CD25+ regulatory cells.

I too can now quickly bounce back to normal levels using Interleukin-2 every nine months or so, but there is a decay over this time I don't prefer. Getting to my current situation, up from a T4 count of 263 and 15.6% and low levels of T regulatory cells, was a long slog with periods of little apparent progress followed by sudden dramatic improvements. Why I don't know, but that's how it works for most. Based on the decay over nine months without Interleukin-2, I'm quite convinced that I could decline back to my former situation after a number of years of not using Interleukin-2 - and why would I want to achieve that?

Secondly, I became resistant to every anti-viral I used prior to using Interleukin-2. Since using Interleukin-2 I have not developed resistence to any anti-viral I have used. I find that impressive. And last, I have not experienced wasting nor have the people who started using Interleukin-2 the same time I did. Our experience leads me to believe that normalizing the immune system heads off these problems in some way. How I have no idea. Some suggest that I didn't experience wasting because I used d4T (Stavudine) to failure, while others claim I should have wasted precisely because I used d4T. All I know is we didn't waste and using Interleukin-2 for a decade or more is one of the few things we have in common.

I intend to be quite healthy when a cure is discovered for HIV.

In the mean time I quite enjoy disturbing Doctors with my current 1,300 and 35% T4 numbers after 18+ years of having HIV. The Doctor my partner and I began going to a year ago even gave me an HIV test to be certain I was HIV+. I was quite delighted.

>> 3 daYS of IL-2 at 7.33 a day with indocin Sr seems like an easy option.. MY > question is at what point should we consider this option based on an unded > vl..? Specifically when cd4 drop at a certain # and the % as well??. Would a > person like myself with a stable cd4 of 500's in the 35-40% range and an > unded vl consider this just to get a boost?? Thanks LUke..>

[Guest guest]

Some people can maintain a nearly undetectable viral load, under 1,000 and normal T cell counts without anti-viral drugs. One of my friends in Sweden is like this after six years of HIV infection. In fact as time progresses, his T4 count continues to rise while his viral load declines further.

Needless to say, he has above-normal CD4+/CD25+ T regulatory cells which are the key to controlling HIV, and as a result a slightly higher than normal level of Interleukin-2. People like he should have appropriately little interest in anti-virals or Interleukin-2 therapy - his body is handling HIV by itself.

Unfortunately this state of affairs is quite rare.

Almost all people with HIV lose T regulatory cells and experience sub-normal levels of Interleukin-2 very early in the disease process. Published studies show that:

a.) people who control HIV without drugs have higher than normal numbers of these regulatory cells;

b.) people who can control HIV with anti-virals have subnormal numbers of these regulatory cells;

c.) people who cannot control HIV with anti-viral drugs have nearly none of these regulatory cells.

The bottom line is this - the immune system does much of the "heavy lifting" in controlling HIV, even when anti-virals are used. HIV is hyper-variable and so is your immune system - anti-viral drugs are not. To vary the drug response requires yet another drug cocktail.

Published studies show that Interleukin-2 injections increases the numbers of these T regulatory cells.

http://en.wikipedia.org/wiki/Regulatory_T_cell

If your Doctor chose to, he could order a count of your T regulatory cells (CD4+/CD25+ and CD8+/CD25+) when you get your T cell counts done. A normal level of T regulatory cells is 5% to 10% of a normal T cell count. In most people with HIV, the number of these cells is well below 5% to 10% of their current T cell count, let alone %5 to 10% of a normal count.

People with a T4 percentage below 22% are likely losing immune memory as entire clonal lines of T cells are wiped out. Certainly those with a T4 percentage below 18% are in this category. I would use any available tool such as anti-virals and Interleukin-2 to stay out of this situation, or leave this unfortunate state of affairs with as little damage as possible if I were already there.

I have found it to be worthwhile to normalize my T cell and regulatory cell counts, and keep it normalized, for the past 12 years in spite of the inconvenience of three injections every two or three months. I believe it has been helpful, in spite of the fact that I can easily control my viral load with Reyataz and Truvada - without Interleukin-2.

Why? If for no other reason than I don't want to lose what I have achieved. Friends who were HIV+ for less than a few years usually were able to normalize their immune system all at once with three days of injections. They have found using Interleukin-2 only every none months of so, in combination with anti-virals, maintains their normal T4 levels and their levels of CD4+/CD25+ regulatory cells.

I too can now quickly bounce back to normal levels using Interleukin-2 every nine months or so, but there is a decay over this time I don't prefer. Getting to my current situation, up from a T4 count of 263 and 15.6% and low levels of T regulatory cells, was a long slog with periods of little apparent progress followed by sudden dramatic improvements. Why I don't know, but that's how it works for most. Based on the decay over nine months without Interleukin-2, I'm quite convinced that I could decline back to my former situation after a number of years of not using Interleukin-2 - and why would I want to achieve that?

Secondly, I became resistant to every anti-viral I used prior to using Interleukin-2. Since using Interleukin-2 I have not developed resistence to any anti-viral I have used. I find that impressive. And last, I have not experienced wasting nor have the people who started using Interleukin-2 the same time I did. Our experience leads me to believe that normalizing the immune system heads off these problems in some way. How I have no idea. Some suggest that I didn't experience wasting because I used d4T (Stavudine) to failure, while others claim I should have wasted precisely because I used d4T. All I know is we didn't waste and using Interleukin-2 for a decade or more is one of the few things we have in common.

I intend to be quite healthy when a cure is discovered for HIV.

In the mean time I quite enjoy disturbing Doctors with my current 1,300 and 35% T4 numbers after 18+ years of having HIV. The Doctor my partner and I began going to a year ago even gave me an HIV test to be certain I was HIV+. I was quite delighted.

>> 3 daYS of IL-2 at 7.33 a day with indocin Sr seems like an easy option.. MY > question is at what point should we consider this option based on an unded > vl..? Specifically when cd4 drop at a certain # and the % as well??. Would a > person like myself with a stable cd4 of 500's in the 35-40% range and an > unded vl consider this just to get a boost?? Thanks LUke..>

[Guest guest]

Some people can maintain a nearly undetectable viral load, under 1,000 and normal T cell counts without anti-viral drugs. One of my friends in Sweden is like this after six years of HIV infection. In fact as time progresses, his T4 count continues to rise while his viral load declines further.

Needless to say, he has above-normal CD4+/CD25+ T regulatory cells which are the key to controlling HIV, and as a result a slightly higher than normal level of Interleukin-2. People like he should have appropriately little interest in anti-virals or Interleukin-2 therapy - his body is handling HIV by itself.

Unfortunately this state of affairs is quite rare.

Almost all people with HIV lose T regulatory cells and experience sub-normal levels of Interleukin-2 very early in the disease process. Published studies show that:

a.) people who control HIV without drugs have higher than normal numbers of these regulatory cells;

b.) people who can control HIV with anti-virals have subnormal numbers of these regulatory cells;

c.) people who cannot control HIV with anti-viral drugs have nearly none of these regulatory cells.

The bottom line is this - the immune system does much of the "heavy lifting" in controlling HIV, even when anti-virals are used. HIV is hyper-variable and so is your immune system - anti-viral drugs are not. To vary the drug response requires yet another drug cocktail.

Published studies show that Interleukin-2 injections increases the numbers of these T regulatory cells.

http://en.wikipedia.org/wiki/Regulatory_T_cell

If your Doctor chose to, he could order a count of your T regulatory cells (CD4+/CD25+ and CD8+/CD25+) when you get your T cell counts done. A normal level of T regulatory cells is 5% to 10% of a normal T cell count. In most people with HIV, the number of these cells is well below 5% to 10% of their current T cell count, let alone %5 to 10% of a normal count.

People with a T4 percentage below 22% are likely losing immune memory as entire clonal lines of T cells are wiped out. Certainly those with a T4 percentage below 18% are in this category. I would use any available tool such as anti-virals and Interleukin-2 to stay out of this situation, or leave this unfortunate state of affairs with as little damage as possible if I were already there.

I have found it to be worthwhile to normalize my T cell and regulatory cell counts, and keep it normalized, for the past 12 years in spite of the inconvenience of three injections every two or three months. I believe it has been helpful, in spite of the fact that I can easily control my viral load with Reyataz and Truvada - without Interleukin-2.

Why? If for no other reason than I don't want to lose what I have achieved. Friends who were HIV+ for less than a few years usually were able to normalize their immune system all at once with three days of injections. They have found using Interleukin-2 only every none months of so, in combination with anti-virals, maintains their normal T4 levels and their levels of CD4+/CD25+ regulatory cells.

I too can now quickly bounce back to normal levels using Interleukin-2 every nine months or so, but there is a decay over this time I don't prefer. Getting to my current situation, up from a T4 count of 263 and 15.6% and low levels of T regulatory cells, was a long slog with periods of little apparent progress followed by sudden dramatic improvements. Why I don't know, but that's how it works for most. Based on the decay over nine months without Interleukin-2, I'm quite convinced that I could decline back to my former situation after a number of years of not using Interleukin-2 - and why would I want to achieve that?

Secondly, I became resistant to every anti-viral I used prior to using Interleukin-2. Since using Interleukin-2 I have not developed resistence to any anti-viral I have used. I find that impressive. And last, I have not experienced wasting nor have the people who started using Interleukin-2 the same time I did. Our experience leads me to believe that normalizing the immune system heads off these problems in some way. How I have no idea. Some suggest that I didn't experience wasting because I used d4T (Stavudine) to failure, while others claim I should have wasted precisely because I used d4T. All I know is we didn't waste and using Interleukin-2 for a decade or more is one of the few things we have in common.

I intend to be quite healthy when a cure is discovered for HIV.

In the mean time I quite enjoy disturbing Doctors with my current 1,300 and 35% T4 numbers after 18+ years of having HIV. The Doctor my partner and I began going to a year ago even gave me an HIV test to be certain I was HIV+. I was quite delighted.

>> 3 daYS of IL-2 at 7.33 a day with indocin Sr seems like an easy option.. MY > question is at what point should we consider this option based on an unded > vl..? Specifically when cd4 drop at a certain # and the % as well??. Would a > person like myself with a stable cd4 of 500's in the 35-40% range and an > unded vl consider this just to get a boost?? Thanks LUke..>

[Guest guest]

I have done IL-2 in the distant past, and had no side effects to speak of, and a mild increase in T cells.There are tantalizing suggestions of this and that, but no clinical study to date has shown a decrease in opportunistic infections or other quality of life issues, despite the increases in T cells that are definitely obtained.If you want higher t cell numbers, Il-2 will do that for you.  Other benefits, when looked at large groups of of individuals, have not been clear. Barrowpozbod@...