What are the PROS/CONS to stopping Meds at this point?

[BlkRedBonenla]

Hello,
I just got my newest labs back after three months new to the meds - ATRIPLA. My VL dropped dramatically in the first month and is now UNDETECTABLE, but my T-cells have basically, statistically gone nowhere, staying in the 70's.

I am also taking Bactrim.

My doctor is now saying it may be 5-7 years before my T-cells go up!!! So, fellow actors: WHAT IS MY MOTIVATION for continuing to take medication which I was already leary of taking, is apparently doing all it can do. This would also man continuing to take this antibiotic everyday for that 5 years ... this cannot be a good thing.

I did have a serious bout with pneumonia earlier this year and my Tcells dropped to 20!!! But even before starting the meds, they bounced right back to the 70's number and seem totally unperturbed by medications.

Full of Questions here,
Lowell

[Cliff]

When you say stop meds, do you mean temporarily or permanently?  I would assume the cons are a drop in your tcell counts, which would lead to more OI's and probably pneumonia again (would you drop the Bactrim as well?).  The pros would be no more meds.  To me this pro isn't quite beneficial enough to risk hospital visits and OI's.  Perhaps if your counts were higher, I would have a different opinion.  But this is a question you and only you (well in conjunction with your doctor) can answer....as your motivations, desires and experiences are different from mine.

It sounds pretty risky though...to stop your meds with such a low tcell count, especially having recently had an OI.  I've read that it does take a while for tcell counts to recover, for people who start meds with a very low count.  I don't know how your doctor arrived at the 5-7 year estimate, perhaps that might be a good question to ask her/him.

Do you take vitamins that are tailored for immune system support? 

[budndallastx]

The motiviation is it will extend your life and over time your t-cells should increase.  If you're tolerating the meds and are not showing any effects, why not continue with them?  Research is continuing and new drugs are in the pipeline.  It could be the virus has done such a number your immune system just needs time to recover.  Patience is probably the best advice ...

[JPinLA]

This is my understanding of beginning treatment with a very low CD4 number.  I think that it takes a while for your body to restore what is a quite oppressed immune system.  It takes time for healthier cells to appear.  This can only happen when you have stopped the virus from replicating and doing more damage.  Now that you have halted that, your immune system can begin to make healthier cells.  My opinion is patience.  You began treatment at quite a comprimised state.  Give your body time to react.  You could end up with T4s in the hundreds and not even need the Bactrim anymore!

Of course this is my inderstanding so if I'm off the mark someone let me know!

Good luck to you!

JP

[Miss Philicia]

Did your doctor actually say they won't rise for 5-7 years?  I find that hard to believe.  Perhaps you misunderstood him (?)  Perhaps he stated that it would not rise over 200 for "x" amount of years, which would be accurate, though I'd still doubt the 5-7 year figure.

You didn't start meds until 20 for goodness sakes.  You need to adjust your expectations to that reality, as treatment guidelines are to start at what (?) 300 or something (sorry, I've been on meds for 14 years so I'm rusty with CDC guidelines for this).  CD4 numbers rise VERY slowly at the lower end.  Look at it this way -- focus on the per cent your CD4 changes (aside from the CD4 % number on your labs) such as if you go from 20 CD4 to 40 CD4 that is a 100% change in the actual number -- similar as if you went from 200 to 400 which would seem QUITE good wouldn't it?  The lower 2 digit number simply skews the apparent improvement, which is why you must adjust your expectations.

To be frank I would not be considering stopping your HIV medications.  That's how you got in this situation in the first place isn't it?  You made the decision to wait until your numbers were low.  I know from your past postings that you're a bit anti-medication to begin with, but if you're going to go on HIV meds you need to make the commitment or you're just going to have more problems like this in the future.

Good luck.

[aztecan]

Hey Lowell,

Actually, with a T-cell count that low, I'm surprised you aren't on two prophylaxes, But that is another story.

At your present level, you are at risk of several opportunistic infections, not just pneumonia. I hope your doc has explained some of the things you can do to help protect yourself.

I don't see any pros from stopping ARV therapy at this point. The meds are doing their job, now its up to your body to recover. How long that takes varies. It may take you longer, or you may rebound more quickly. Who knows?

I can tell you many of the opportunistic diseases we face make any of the side effects of the meds look like a cakewalk.

Just my 2¢ worth.

HUGS,

Mark

[SoSadTooBad]

Lowell...  Stay on meds!!  I started meds last June with a CD4 of 78, and I am now in the 350 range.  I am not sure how the doctor can be so sure you will need 5-7 years to get your counts up. 

My doctor told me that everyone is different, and that I could expect a large increase, and then my CD4 count would level off and perhaps bounce around.  His expectation was that I could get into a range where I was in no immediate danger, and my life could resume - he was right.

My CD4s went from 78 to 204 in about 3 months - I was on Mepron, because I could not tolerate Bactrim. 

Look at it this way...  even if it did take 5 years to get over 200, so what?  You take your meds, and you start living again, and your counts will take care of themselves. 

Hang in there!

[BlkRedBonenla]

Lots of good advice here. Thanks!

To SoSadTooBad: I've been on atripla three months as well and my T-cells have not fluctuated much. My VL did a dramatic drop from 50,000 to undetectable.


To Philly267: Just to be clear, I did not start meds at 20 T-cells, that was what I had when I had pnuemonia but I was not going to start meds then. Wasn't ready. When I went for a follow-up visit to my doctor and got my labs, my T-cells ON THEIR OWN shot up from 20 to the mid 70's.



To Cliff: I do take vitamins. Super 10 antioxidant by Country Life; Super Potency HI-B-100 by CL; Max Strength Defense Plus GSE (grapefruit seed extract combo); Chlorophyl;  Magnesium; Spirulina ....



To Aztecan: what other prophylaxis are you referring to? I know the year BEFORE I went on meds, before the pneumonia, when my T-cells hovered in the 70's, I was warned about the blindness, but this has not been discussed at all since. What more??

Finally to all: I would say that the idea of taking ANY DRUG for a long duration still doesn't sit well with me. Street drug vs Doctor drug is an arbitrary line drawn.

Thanks again to all of you!
Lowell

[Nico]

Lowell,
My first ten years with HIV were a breeze!  No meds, a few blood draws and that was it.  My T's were 350 to 400, my VL was 20K to 50K.  Sounds pretty good?

Well, in 2001, just after my last labs, PCP made a house call.  Took me six months to get rid of that bitch.  I started meds in 2002.  T'c sucked at less than 200 and my VL was off the charts.  Kidney failure and C-Diff followed and PN in my upper legs prevented me from walking for a month.

Today, many years later, I have been on HAART.  Since that time and three changes in drugs, my T's average in the 800 plus range, no VL.  I still have moderate PN from Zerit (which was stopped in 2002), but I would not stop taking my current drugs period.  All I need to do is remember the two months I spent in the hospital and I never want to go back.

Think about this.  You stop and all is fine for now.  You start and all is fine for a long while in the majority of people with HIV/AIDS.  You roll the dice, but I bet if you stop, you shoot craps in more way than one.  It is your decision and we are all here for you either way, just my opinion.

Edit per Buds comment below:  Percent in 2001 was 15% today the percent is between 42-47%.

Hugs
Rog   

[budndallastx]

One thing about this thread is we're focused on absolute CD4 counts.  What was the CD4 percentage?  Did it go up?   Don't forget CD4 counts can vary by a large percentage from one lab to the next so it could have just been the sample. 

[aztecan]

He Lowell,

When someone's CD4s drop below 100, they become more susceptible to several opportunistic infections. The one you mentioned is called Cytomegalovirus (CMV) which can manifest itself in the eye, causing vision loss and ultimately blindness. It can also be diffused throughout the body and cause problems with internal organs.

Aside from Bactrim, which you mentioned, I was thinking of Azithromycin (Zithromax). It is usually prescribed to people whose T-cells are less than 75, certainly if they fall below 50. It helps prevent an infection called Mycobacterium Avium Complex, or MAC. MAC is rather nasty, can cause some severe intestinal problems and is not curable, only treatable.
Another OI that could show up for those below 100 CD4s is Toxoplasmosis, and, if memory serves, if the CD4s are below 50, people are at risk for such things as Progressive Multifocal Leukoencephalopathy (PML).

Oh, regarding the CMV retinitis, there are several medications available to treat it, but they are very costly and no fun for the person taking them. All but one must be given via IV, usually through a shunt or attachment implanted in the chest of the person receiving them. They cannot be given IV in the arm because the drug will destroy the veins too quickly.

There is one pill form used to treat CMV, I believe it is called Valcyte. I know very little about it, other than it is the only pill form med for CMV.

Just as an aside, I had a friend who used to hang his IV bag from the rear view mirror of his car and give himself his medications as he drove around. It was quite the sight and we got a good laugh at seeing the faces of other drivers when they realized what was hanging from the mirror.

There is some very good information here in the lessons section regarding OIs and their treatments.

I know you don't like the idea of long-term commitment to the meds. How do you feel about long-term commitment to food? You must, after all, eat something each day for the rest of your life. Taking meds is really no different, except they usually don't make you fat.

Just a thought.

HUGS,

Mark

[BlkRedBonenla]

One thing about this thread is we're focused on absolute CD4 counts.  What was the CD4 percentage?  Did it go up?   Don't forget CD4 counts can vary by a large percentage from one lab to the next so it could have just been the sample. 

I will look at the printout to check for %, but the only cd4 increase was dramatic and WITHOUT MEDS. This is what seems lost on you guys. Maybe not. When I went into the hospital they measured cd4 of 20, a month later, no meds whatsoever - just the antibiotics given me - I went back to the 70's, where I had been a year+ ago. After three months on meds, my VL has gone undetectable but my cd4 remains unchanged in that 70's range. With and without meds my cd4 seems to be set in the 70's.

Are you suggesting a percentage would be different than a count, if the count itself has not changed? LOL .. is this a new math?

Lowell

[BlkRedBonenla]

I know you don't like the idea of long-term commitment to the meds. How do you feel about long-term commitment to food? You must, after all, eat something each day for the rest of your life. Taking meds is really no different, except they usually don't make you fat.

Mark: Thanks for the very comprehensive information .. but your last statement illustrates the sharp distinction in your worldview and mine: FOOD does not kill, FOOD does not compromise critical bodily organs when eaten over a few months/years.

It's that simple.

Lowell

[J.R.E.]

Lowell,

You may find this podcast to be helpful. It will work better with a high speed connection. It may help to answer some of your questions and concerns :


http://www.thebody.com/hivmonth/January_2007/january.html

You may also find this link helpful :

http://www.thebody.com/index/treat/sti.html



Ray

[risred1]

So far i have only seen pro's from your fellow forum mates, most whom are on meds, and who have benefited from them and some who clearly believe that without the meds they may not be here today or the quality of life they are now experiencing is pretty good on meds.

It has been noted that you are a vegetarian, Vegan, I believe and you don't "believe" in a long term commitment to medical treatment.

I believe that you do recognize that HIV is a chronic condition that requires focused efforts to maintain control. Control through "natural" means has served you to a point. But you have reach a crossroads and due to a very low CD4 count, have already begun to experience the opportunistic infections that your body needs help to fend off.

My opinion is that you need to rethink your relationship to HIV along lines that it is much like other chronic diseases  that require daily medical treatment in order to keep under control. I doubt we would be having this discussion if you were Diabetic and needed Insulin as a daily injections. Of course without Insulin one would have immediate effects of uncontrolled blood sugar which is acute vs, the slow grinding effect of HIV. I surmise that it is ultimately your view that your quality of life was fine at 70 without the drugs and if you don't get the immediate feedback from a blood test that your CD4 is recovering, that the drugs aren't of a benefit to you which is reinforcing your overall view that medicine is ultimately not a good thing.

With your VL now undetectable, you know the drugs are doing what they are supposed to do. So why in your relationship with meds solely based upon the performance of you CD4 count?

We can always rationalize via a relativistic view of aspects of HIV. Whatever your beliefs are about how you want to live your life, and the meaning you take from life, one thing is clear. Your immune system is severely compromised. You can die at any time from an Opportunistic infection. If you have CMV, a trait you and I share, we can easily become blind if CMV reactivates because you don't have the immune system to fight it off.

Its funny how we can become comfortable with risk over time. Much of the resurgence of HIV infections can be traced to a "comfort" level of survivability with HIV due to medical and holistic advancements. While you seem to be comfortable with a CD4 count of 70, that idea, quite frankly, scares the crap out of me.

My wish for you is to be happy as you can be. If that means you need to be living a "natural" life, then you may have to accept that its going to be a shorter one without meds. If you quality of life is that much better that shorter is preferable to taking medicines on a daily basis, that seems to be the real question your asking. I can't answer that one as I'm not taking meds. But, I am taking a big list of supplements, something that you also do. I guess my last point is then, if your taking supplements daily to fight HIV and to keep your health up, why not take a medicine and look at it as a supplement to keep your health up?

[J.R.E.]

Lowell,

I also want to add...    Obviously the Atripla is working very well for you. You are now undetectable. As long as there are no other problems that may occur, I can only see your cd-4 going back up again. And it will take time. They may rise, and they nmay drop again slightly. Will it take 5 years? I don't know the answer to that. I started off on meds with 16 t-cells, and 500,000 viral load in 2003, you can see where I am at now. And that was 17 years into HIV infection. As far as the Bactrim, that can be discontinued after your t-cells reach the 200 count and maintain that for a while. Are you on Zithromax also?

Ray

[BlkRedBonenla]

My wish for you is to be happy as you can be. If that means you need to be living a "natural" life, then you may have to accept that its going to be a shorter one without meds. If you quality of life is that much better that shorter is preferable to taking medicines on a daily basis, that seems to be the real question your asking. I can't answer that one as I'm not taking meds. But, I am taking a big list of supplements, something that you also do. I guess my last point is then, if your taking supplements daily to fight HIV and to keep your health up, why not take a medicine and look at it as a supplement to keep your health up?

Very well and squarely put in my face. LOL. But I don't intend to sound comfortable with my 70-range cd4. That's just what it's been. Did it drop to 20 and then I got pneumonia, OR did I get pneumonia and the cd4 dropped to 20? The eternal question. But WE KNOW it went up 50+ pts without any HIV meds, and has gone no where WITH HIV meds. So perhaps to all you wise sages I am creating questions where there are none.

For the meantime I will stay on my corral-colored pill.

Lowell

[Tempeboy]

Your situation must be difficult.  Having strong personal philosophies about medication (respected) whilst living with an illness, the treatment of which is dominated with medication.

A few well intentioned thoughts...

Your CD4's are at a level where you would expect a range of opportunistic infections that will compromise your health, ie without treatment you will get sick, it would just be a matter of time.  Also, with your CD4's at this level - your immune system has limited reserves with which to respond to infection, so a cold or a flu could flatten you for a long time.  Others have already mentioned the opportunistic infections that can take hold with your current CD4 count.

Congratulations on achieving an undetectable viral load.  Whatever you are doing is working.  The goal of HIV treatment is to supress the virus to undectable levels.  Once your viral load becomes undetectable, your CD4's can then replenish themselves without being lost to the virus.  This process takes time to reach a balance.  As your CD4's reach higher numbers, they will probably start to climb more quiclkly, ie the higher they are, the higher they get (all things being equal). To illustrate:

Imagine you are trying to fill a bath tub, but the plug is not in properly.  The water level rises, but not at the rate you want.  Once the plug is put in place, the water is able to fill at it's normal rate without losing itself down the drain.  HIV meds inhibit the rate of viral replication to a level that suppresses the virus to an undetectable level.  When supressed at this level over time, we produce CD'4s at a rate that is able to reach normal levels.

In terms of your fluctuating CD4,s, our levels change in response to many things, eg temperature, time of day, and in response to stress, just to name a few.  One result is not a true indication of what's happening, so we look at trends over time to allow for these variables.

I wont ask about your beliefs and philosophies, as I will not inflict mine, but I wonder if they are based on notions of balance and the common good.  If so, then does the idea of using medication become less difficult? 

As we age and grow and change, so too can our thinking of the world and it's workings.  Things we thought important 20 years ago may not hold our esteem in the same way today.  With this in mind I wonder if your beliefs can allow for the concept of medical treatment for this new state of your body and health.  Like others do for pregnancey and parenthood - why shouldn't we adjust for HIV to our advantage.

In regard to treatment breaks,  currently there are no guidelines that would allow a doctor to say that a break can be taken safely.  There are important trials, and scientists are doing important research in this regard.  This research will continue until science can allow treatment breaks.  Current thinking is that no one should have a break with a CD4 count below 500.

There are new ways to treat, prevent, vaccinate, care etc on the horizon.  We don't know for sure how this will pan out, but the better condition of our immune system, the more advantage we can take of new developments.   If you are lucky enough to have a HIV negative identical twin you could receive his blood, (this would be my ideal treatment).

be cool.

[Ann]

If you are lucky enough to have a HIV negative identical twin you could receive his blood, (this would be my ideal treatment).

WHAT?? Shirley, you jest!