Re: Going Off Meds for a Month

[Guest guest]

I most definitely wouldn´t do that.

However, as I mentioned on this board some time ago, a friend of mine takes one

or two days off meds per week. He has been doing that for years, and his doctor

knows it. Well, his counts and ratios are extremely high (better than mine),

and I wonder if that might be a feasible strategy for some. Given the

pharmacokinetics of these drugs, this strategy doesn´t sound too crazy to me,

even there if there is no research supporting it, that I know. This strategy

certainly sounds like a better one to me that taking a month, or even a week

off.

Having said that, I take my meds daily....

>

> I am wondering how harmful it would be to go off Meds for a month until my

Medicare part D kicks in. I just cannot afford to pay out of pocket for these

meds .. I am so financially drained. Advice needed.

>

[Guest guest]

I most definitely wouldn´t do that.

However, as I mentioned on this board some time ago, a friend of mine takes one

or two days off meds per week. He has been doing that for years, and his doctor

knows it. Well, his counts and ratios are extremely high (better than mine),

and I wonder if that might be a feasible strategy for some. Given the

pharmacokinetics of these drugs, this strategy doesn´t sound too crazy to me,

even there if there is no research supporting it, that I know. This strategy

certainly sounds like a better one to me that taking a month, or even a week

off.

Having said that, I take my meds daily....

>

> I am wondering how harmful it would be to go off Meds for a month until my

Medicare part D kicks in. I just cannot afford to pay out of pocket for these

meds .. I am so financially drained. Advice needed.

>

[Guest guest]

JB,I would put out a call to all members, because they may have extra medications that they no longer use. BUT the first person I would talk to, is your Doctor. Infectious disease doctors usually serve as a clearing house for unused meds and they may have samples to bridge you in the interim.Alternatively, Patient Assistance Programs can provide assistance but they need documentation and take a couple of days to get.http://www.thebody.com/index/financial/drug_assist.html<http://www.thebody.com/index/financial/drug_assist.html>I hope that the info works out for you.

[Guest guest]

I agree with the suggestion of trying to get free meds. There is no simple,

single answer to this question--but your CD4 count should be one guide. If you

are below around 350, I'd think it was a bad idea to take a break from meds.

350-500, be hesitant to take such a break.

Over 500--then it's probably safe enough for a month. Also, your resistance

profile, general health, etc. all can play into this. Have you ever had a rapid

fall in CD4? What's your diet like? Do you exercise/sleep well? Do you take some

supplements? I'd say at least a multi, probably some glutamine and acidophilus

to protect gut function. You could try this ViraPhyte formula of Chinese herbs

for a month.

But if possible, I'd say stay on meds.

M.

[Guest guest]

I agree with the suggestion of trying to get free meds. There is no simple,

single answer to this question--but your CD4 count should be one guide. If you

are below around 350, I'd think it was a bad idea to take a break from meds.

350-500, be hesitant to take such a break.

Over 500--then it's probably safe enough for a month. Also, your resistance

profile, general health, etc. all can play into this. Have you ever had a rapid

fall in CD4? What's your diet like? Do you exercise/sleep well? Do you take some

supplements? I'd say at least a multi, probably some glutamine and acidophilus

to protect gut function. You could try this ViraPhyte formula of Chinese herbs

for a month.

But if possible, I'd say stay on meds.

M.

[Guest guest]

"I am wondering how harmful it would be to go off Meds for a month until my Medicare part D kicks in. I just cannot afford to pay out of pocket for these meds .. I am so financially drained. Advice needed." This is a risky strategy. I would have to add that I don't find it as ill-advised as the idea of taking half of your medications, which I would describe as "possibly suicidal."I would certainly ask your doctor's office for help.JB, another one.

[Guest guest]

"I am wondering how harmful it would be to go off Meds for a month until my Medicare part D kicks in. I just cannot afford to pay out of pocket for these meds .. I am so financially drained. Advice needed." This is a risky strategy. I would have to add that I don't find it as ill-advised as the idea of taking half of your medications, which I would describe as "possibly suicidal."I would certainly ask your doctor's office for help.JB, another one.

[Guest guest]

Going off for a couple of days a week entails MUCH MORE RISK and MUCH MORE

LIKELIHOOD of cultivating drug resistance than stopping meds completely for a

period (week OR month) and then restarting per the instructions of your

physician.

I realize that Joe's friend has been successful at this with the support of his

physician, but that situation is unique to his genetics, lifestyle, diet,

metabolism, and regimen and can not be generalized to others. All antivirals do

not have the same half life or pharmacokinetics and pharmacodynamics.

Please know that I recognize your frustration and difficulties. If you are

painted into a corner (as I have been before), please consult your HIV doctor.

It is possible, depending on the period you will be out of meds, that he may be

able to recommend a partial regimen that entails fairly low risk. Regardless,

he can tell you the best way to stop your meds (because they have differing half

lives, you may need to continue some longer than others before completely

stopping.)

Since you didn't give details, I'm not sure if you are waiting to start Medicare

Part D for the first time or if you have encountered the coverage gap. If it is

the latter, don't forget that you won't get out of the gap without purchasing

meds (or having them purchased for you if your state has a program to do that.)

In that case stopping for a while doesn't solve the problem.

Take care and please be careful.

mark

Mark Hubbard

Nashville TN

> >

> > I am wondering how harmful it would be to go off Meds for a month until my

Medicare part D kicks in. I just cannot afford to pay out of pocket for these

meds .. I am so financially drained. Advice needed.

> >

>

[Guest guest]

Going off for a couple of days a week entails MUCH MORE RISK and MUCH MORE

LIKELIHOOD of cultivating drug resistance than stopping meds completely for a

period (week OR month) and then restarting per the instructions of your

physician.

I realize that Joe's friend has been successful at this with the support of his

physician, but that situation is unique to his genetics, lifestyle, diet,

metabolism, and regimen and can not be generalized to others. All antivirals do

not have the same half life or pharmacokinetics and pharmacodynamics.

Please know that I recognize your frustration and difficulties. If you are

painted into a corner (as I have been before), please consult your HIV doctor.

It is possible, depending on the period you will be out of meds, that he may be

able to recommend a partial regimen that entails fairly low risk. Regardless,

he can tell you the best way to stop your meds (because they have differing half

lives, you may need to continue some longer than others before completely

stopping.)

Since you didn't give details, I'm not sure if you are waiting to start Medicare

Part D for the first time or if you have encountered the coverage gap. If it is

the latter, don't forget that you won't get out of the gap without purchasing

meds (or having them purchased for you if your state has a program to do that.)

In that case stopping for a while doesn't solve the problem.

Take care and please be careful.

mark

Mark Hubbard

Nashville TN

> >

> > I am wondering how harmful it would be to go off Meds for a month until my

Medicare part D kicks in. I just cannot afford to pay out of pocket for these

meds .. I am so financially drained. Advice needed.

> >

>

[Guest guest]

don't listen to this crap they say, you can stay off melds a week, a month even with CD4 counts as low as 200, its not life threatening, of course, the higher the CD4 count the longer you can stay off melds. Usually, they would let you be off melds here in Canada until you to down to 300-200 depending on the Dr, but this doesn't mean that if you go less than 200 for a week or month you gonna enter AIDS the next day. Moreover, its the CD4/CD8 percentage that is important, not the ABSOLUTE CD4 count, CD4 will be usually lower if the total count of lymphocyte its lower. My total lymphocyte count is usually low, therefore my CD4 are usually lower than general population and I was on and off melds for 10 years.

here in Canada a lot of people are on vacation therapy (off melds), drug companies don't have such influence here like in the US. All these messages they sent back show how cultural it got in the US for Dr's and patients to listen to dug companies crap (marketing strategy).

People develop resistance mostly when they are ON medications not off medication!!! just think about it, you are asked to switch meds combinations because you developed resistance to your current one, why is that?! the more your virus its exposed to one meds combination the more its likely to develop resistance to it....

All these is not written in stone, but generally it is like that.

and please don't come back and show me some study that prove otherwise (secretly funded by drug companies). We had the same way of thinking back in early 2000s here and Canada but 10 years of having people on drug vacations prove that it is safe to be off meds for a while, not to mention the positive effects on your liver, kidneys, Cardiovascular risk, etc

From: JB <blueeyes9455@...>Subject: Going Off Meds for a Month Received: Sunday, March 11, 2012, 5:44 PM

I am wondering how harmful it would be to go off Meds for a month until my Medicare part D kicks in. I just cannot afford to pay out of pocket for these meds .. I am so financially drained. Advice needed.

[Guest guest]

Many drug companies have patient assistance programs you can access to get meds when you can't pay for them.  I'd go to the website for each of the meds you're on and check it out.  For as much as they charge we might as well access the free drugs whenever we can....

Also, check with the benefits counselor at your local ASO to see if there's a short term emergency state or county program that could help tide you over.  Stopping & starting meds is never a good thing--especially if you're on a non-nuke like Sustiva or Viramune with exceptionally long half-lives that make it hard to stop without causing resistance.

Jeff

[Guest guest]

Many drug companies have patient assistance programs you can access to get meds when you can't pay for them.  I'd go to the website for each of the meds you're on and check it out.  For as much as they charge we might as well access the free drugs whenever we can....

Also, check with the benefits counselor at your local ASO to see if there's a short term emergency state or county program that could help tide you over.  Stopping & starting meds is never a good thing--especially if you're on a non-nuke like Sustiva or Viramune with exceptionally long half-lives that make it hard to stop without causing resistance.

Jeff

[Guest guest]

It saddens me when folks feel they need to respond to shared knowledge,

experience, and wisdom of group members with insults and conspiracy theories.

It's too bad that false assumptions have been made about individuals that aren't

even known.

Putting that aside, it appears that previous posts were misread and

unsubstantiated conclusions drawn.

I saw no post that predicted dire consequences for taking a drug holiday at a

specific drug count.

No one made a claim that resistance is developed while off drugs. I, on the

contrary, corrected what was a mistaken guess about which might be riskier,

going off drugs or skipping a couple of days a week. The answer to that is

clear

The generalizations made here about resistance and how it occurs are only

partially true, perhaps because they are based on how things happened earlier in

the epidemic.

In the past, when and because regimens themselves were sub-optimal, folks did

develop resistance while being adherent to meds. With current regimens, this is

quite rare. Folks now most often develop resistance because they are not

consistently adherent, allowing drug levels to repeatedly drop below therapeutic

levels. Taking a couple of days off a week for a period of time could be an

ideal way to risk these suboptimal drug levels, depending on the drugs involved.

I'm unaware of any major discrepancies between treatment guidelines and their

implementation in the U.S. vs. Canada. The folks I deal with believe the best

care happens when an experienced and knowledgable professional shares

responsibility for decision making with an informed patient, taking all

considerations into account.

JB did not ask us when to start or about side effects or toxicities. He

described a financial situation that had forced him to consider something he

otherwise would not - going off medications for a while.

Responses have been posted by folks who not only keep up with the science but

who have extensive person to person experience.

Best,

mark

Mark Hubbard

Nashville TN

>

>

> From: JB <blueeyes9455@...>

> Subject: Going Off Meds for a Month

>

> Received: Sunday, March 11, 2012, 5:44 PM

>

>

>

>  

>

>

>

> I am wondering how harmful it would be to go off Meds for a month until my

Medicare part D kicks in. I just cannot afford to pay out of pocket for these

meds .. I am so financially drained. Advice needed.

>

[Guest guest]

It saddens me when folks feel they need to respond to shared knowledge,

experience, and wisdom of group members with insults and conspiracy theories.

It's too bad that false assumptions have been made about individuals that aren't

even known.

Putting that aside, it appears that previous posts were misread and

unsubstantiated conclusions drawn.

I saw no post that predicted dire consequences for taking a drug holiday at a

specific drug count.

No one made a claim that resistance is developed while off drugs. I, on the

contrary, corrected what was a mistaken guess about which might be riskier,

going off drugs or skipping a couple of days a week. The answer to that is

clear

The generalizations made here about resistance and how it occurs are only

partially true, perhaps because they are based on how things happened earlier in

the epidemic.

In the past, when and because regimens themselves were sub-optimal, folks did

develop resistance while being adherent to meds. With current regimens, this is

quite rare. Folks now most often develop resistance because they are not

consistently adherent, allowing drug levels to repeatedly drop below therapeutic

levels. Taking a couple of days off a week for a period of time could be an

ideal way to risk these suboptimal drug levels, depending on the drugs involved.

I'm unaware of any major discrepancies between treatment guidelines and their

implementation in the U.S. vs. Canada. The folks I deal with believe the best

care happens when an experienced and knowledgable professional shares

responsibility for decision making with an informed patient, taking all

considerations into account.

JB did not ask us when to start or about side effects or toxicities. He

described a financial situation that had forced him to consider something he

otherwise would not - going off medications for a while.

Responses have been posted by folks who not only keep up with the science but

who have extensive person to person experience.

Best,

mark

Mark Hubbard

Nashville TN

>

>

> From: JB <blueeyes9455@...>

> Subject: Going Off Meds for a Month

>

> Received: Sunday, March 11, 2012, 5:44 PM

>

>

>

>  

>

>

>

> I am wondering how harmful it would be to go off Meds for a month until my

Medicare part D kicks in. I just cannot afford to pay out of pocket for these

meds .. I am so financially drained. Advice needed.

>

[Guest guest]

Yes some people still do treatment breaks in Canada but way less than we did in 2000 but the vast majority of doctors here still believe it is not a good idea if your nadir(lowest ever) CD4 count is less than 500 (yes percentsge is a better indicator but most people don't know the percentage). But it is your body and your choice, I suggest that you read up on it and make your own decision. The largest study done on drug holidays is called the SMART study and no it wasn't done by the pharmaceutical industry (they won't fund anything that will give people the idea that it is ok to stop treatment). There is flaws in the study, for instance it was stopped too early for us to actually get data on the long term toxicity of the drugs. There was more sickness in those who stopped treatment but the numbers were small, although if you look at the RR (relative risk) it seems that it was a lot more.

On a personal level, I was on and off treatment from 1995 till 2006 and never developed resistance. The trick is to know the half life of the drugs you are on and knowing how long you will be in the danger zone (basically having enough drug to stop most HIV replication but not all replication. ie HIV is replicating under some drug pressure which will favour replication of of mutant viruses). I think you are going off drugs because you can't afford them and not necessarily to take a treatment break, if that is the case then you should stay on treatment and several people have given you suggestions on how you can access them.

Sousa

---- Original Message ----

From: Will Bob <rawmassage@...>

JB <blueeyes9455@...>

Cc: < >

Sent: Tue, Mar 13, 2012 3:09 pm

Subject: Re: Going Off Meds for a Month

don't listen to this crap they say, you can stay off melds a week, a month even with CD4 counts as low as 200, its not life threatening, of course, the higher the CD4 count the longer you can stay off melds. Usually, they would let you be off melds here in Canada until you to down to 300-200 depending on the Dr, but this doesn't mean that if you go less than 200 for a week or month you gonna enter AIDS the next day. Moreover, its the CD4/CD8 percentage that is important, not the ABSOLUTE CD4 count, CD4 will be usually lower if the total count of lymphocyte its lower. My total lymphocyte count is usually low, therefore my CD4 are usually lower than general population and I was on and off melds for 10 years.

here in Canada a lot of people are on vacation therapy (off melds), drug companies don't have such influence here like in the US. All these messages they sent back show how cultural it got in the US for Dr's and patients to listen to dug companies crap (marketing strategy).

People develop resistance mostly when they are ON medications not off medication!!! just think about it, you are asked to switch meds combinations because you developed resistance to your current one, why is that?! the more your virus its exposed to one meds combination the more its likely to develop resistance to it....

All these is not written in stone, but generally it is like that.

and please don't come back and show me some study that prove otherwise (secretly funded by drug companies). We had the same way of thinking back in early 2000s here and Canada but 10 years of having people on drug vacations prove that it is safe to be off meds for a while, not to mention the positive effects on your liver, kidneys, Cardiovascular risk, etc

From: JB <blueeyes9455@...>

Subject: Going Off Meds for a Month

Received: Sunday, March 11, 2012, 5:44 PM

I am wondering how harmful it would be to go off Meds for a month until my Medicare part D kicks in. I just cannot afford to pay out of pocket for these meds .. I am so financially drained. Advice needed.

[Guest guest]

Yes some people still do treatment breaks in Canada but way less than we did in 2000 but the vast majority of doctors here still believe it is not a good idea if your nadir(lowest ever) CD4 count is less than 500 (yes percentsge is a better indicator but most people don't know the percentage). But it is your body and your choice, I suggest that you read up on it and make your own decision. The largest study done on drug holidays is called the SMART study and no it wasn't done by the pharmaceutical industry (they won't fund anything that will give people the idea that it is ok to stop treatment). There is flaws in the study, for instance it was stopped too early for us to actually get data on the long term toxicity of the drugs. There was more sickness in those who stopped treatment but the numbers were small, although if you look at the RR (relative risk) it seems that it was a lot more.

On a personal level, I was on and off treatment from 1995 till 2006 and never developed resistance. The trick is to know the half life of the drugs you are on and knowing how long you will be in the danger zone (basically having enough drug to stop most HIV replication but not all replication. ie HIV is replicating under some drug pressure which will favour replication of of mutant viruses). I think you are going off drugs because you can't afford them and not necessarily to take a treatment break, if that is the case then you should stay on treatment and several people have given you suggestions on how you can access them.

Sousa

---- Original Message ----

From: Will Bob <rawmassage@...>

JB <blueeyes9455@...>

Cc: < >

Sent: Tue, Mar 13, 2012 3:09 pm

Subject: Re: Going Off Meds for a Month

don't listen to this crap they say, you can stay off melds a week, a month even with CD4 counts as low as 200, its not life threatening, of course, the higher the CD4 count the longer you can stay off melds. Usually, they would let you be off melds here in Canada until you to down to 300-200 depending on the Dr, but this doesn't mean that if you go less than 200 for a week or month you gonna enter AIDS the next day. Moreover, its the CD4/CD8 percentage that is important, not the ABSOLUTE CD4 count, CD4 will be usually lower if the total count of lymphocyte its lower. My total lymphocyte count is usually low, therefore my CD4 are usually lower than general population and I was on and off melds for 10 years.

here in Canada a lot of people are on vacation therapy (off melds), drug companies don't have such influence here like in the US. All these messages they sent back show how cultural it got in the US for Dr's and patients to listen to dug companies crap (marketing strategy).

People develop resistance mostly when they are ON medications not off medication!!! just think about it, you are asked to switch meds combinations because you developed resistance to your current one, why is that?! the more your virus its exposed to one meds combination the more its likely to develop resistance to it....

All these is not written in stone, but generally it is like that.

and please don't come back and show me some study that prove otherwise (secretly funded by drug companies). We had the same way of thinking back in early 2000s here and Canada but 10 years of having people on drug vacations prove that it is safe to be off meds for a while, not to mention the positive effects on your liver, kidneys, Cardiovascular risk, etc

From: JB <blueeyes9455@...>

Subject: Going Off Meds for a Month

Received: Sunday, March 11, 2012, 5:44 PM

I am wondering how harmful it would be to go off Meds for a month until my Medicare part D kicks in. I just cannot afford to pay out of pocket for these meds .. I am so financially drained. Advice needed.

[Guest guest]

I was off of meds for 4 years; 2004 to 2009.. my tcells never fell below 600 and was undetectable the entire time. It was mid 2008 when a viralload was detected. It was not anything alarming but my doc felt i had to get back on meds. I had a lot of things going on then; school(med school) became so stressful ,got depressed because of situations(politics) affecting my family back home, my father got diagnosed with CHF,a few weeks after the diagnoses both my parents were in a car accident. A lot of stuff was happening..I got more depressed,and I blamed the virus for not always remembering what i learned..lol. well, I have always been depressed since I learned of my diagnosis. But this time, depression took a toll on me so my doc wanted me back on meds. Nov2008, a viral load was detected;first time since the

break, nothing alarming but doc felt it was time to get back. Bottom line, i did very well while on break and continued to do well .However,I just got off a month and a half break..this time it was not voluntary, i lost ADAP.. .no insurance, and still do not. I have successfully enrolled in a "med assisted program" with Gilead and Bristol Myer. It can be very taxing doing all the paper work but sure is worth it..Now i do not have to worry about meds for the next 12 month.Curios to get my lab results before taking my cocktail!!!!Not encouraging anyone to take a break, but sure is not a death sentence!!!Take good care of yourselves; boys and girls!!!Angel From: Will Bob <rawmassage@...> JB <blueeyes9455@...> Cc: Sent: Tuesday, March 13, 2012 9:10 AM Subject: Re: Going Off Meds for a Month

don't listen to this crap they say, you can stay off melds a week, a month even with CD4 counts as low as 200, its not life threatening, of course, the higher the CD4 count the longer you can stay off melds. Usually, they would let you be off melds here in Canada until you to down to 300-200 depending on the Dr, but this doesn't mean that if you go less than 200 for a week or month you gonna enter AIDS the next day. Moreover, its the CD4/CD8 percentage that is important, not the ABSOLUTE CD4 count, CD4 will be usually lower if the total count of lymphocyte its lower. My total lymphocyte count is usually low, therefore my CD4 are usually lower than general population and I was on and off melds for 10 years.

here in Canada a lot of people are on vacation therapy (off melds), drug companies don't have such influence here like in the US. All these messages they sent back show how cultural it got in the US for Dr's and patients to listen to dug companies crap (marketing strategy).

People develop resistance mostly when they are ON medications not off medication!!! just think about it, you are asked to switch meds combinations because you developed resistance to your current one, why is that?! the more your virus its exposed to one meds combination the more its likely to develop resistance to it....

All these is not written in stone, but generally it is like that.

and please don't come back and show me some study that prove otherwise (secretly funded by drug companies). We had the same way of thinking back in early 2000s here and Canada but 10 years of having people on drug vacations prove that it is safe to be off meds for a while, not to mention the positive effects on your liver, kidneys, Cardiovascular risk, etc

From: JB <blueeyes9455@...>Subject: Going Off Meds for a Month Received: Sunday, March 11, 2012, 5:44 PM

I am wondering how harmful it would be to go off Meds for a month until my Medicare part D kicks in. I just cannot afford to pay out of pocket for these meds .. I am so financially drained. Advice needed.

[Guest guest]

boys, boys

calm down...

what i've been saying for decades (search eddieksf on the board), EVERYONE

HAS DIFFERENT GENES and react differently to the virus, differently to drugs,

differently to stress.

Drug holidays work differently for different people. Some even go forever

with no drugs at all (non progressor long term survivors). Some die within

months of converting (god rest their and my late partner's souls)

Some holidays work, some don't (glad somebody mentioned SMART).

The risk of developing resistance is high. The risk of running through all

the drugs is there. The advantage of fewer drugs is significant.

Some think it's worth the risk to improve quality of life.

SO LETS AGREE TO DISAGREE.

DON'T DO ANYTHING WITHOUT A DOCTOR'S CONSULT, ok ???

68 yrs old, 27 yrs poz, very good health (knock on wood), too evil to die.

cheers

eddiek

potrero hill

san francisco

>

[Guest guest]

boys, boys

calm down...

what i've been saying for decades (search eddieksf on the board), EVERYONE

HAS DIFFERENT GENES and react differently to the virus, differently to drugs,

differently to stress.

Drug holidays work differently for different people. Some even go forever

with no drugs at all (non progressor long term survivors). Some die within

months of converting (god rest their and my late partner's souls)

Some holidays work, some don't (glad somebody mentioned SMART).

The risk of developing resistance is high. The risk of running through all

the drugs is there. The advantage of fewer drugs is significant.

Some think it's worth the risk to improve quality of life.

SO LETS AGREE TO DISAGREE.

DON'T DO ANYTHING WITHOUT A DOCTOR'S CONSULT, ok ???

68 yrs old, 27 yrs poz, very good health (knock on wood), too evil to die.

cheers

eddiek

potrero hill

san francisco

>