no meds and feeling better

[PozJeepGuy]

So only after stopping 2 doses I am amazed how much better I feel.  Energy, mental clarity, and no nausea. I haven't felt this good since I started those things 9 months ago.  I have to admit I know it's playing with fire but with that said I now have made my mind up.  Not until it's a have to I am off meds.  I also now more than ever realize its time to start watching diet, rest, exercise, and etc will have to play into all this now.  Including in this new adventure its finally time to stop smoking cigarettes.  I have a feeling that one is going to be a tuff one. 

I have doubted myself for months now since being + and I am tired of second guessing and living in what ifs.  Its not who i am and never has been.  If anything I have always been one to charge right into life and to live somewhat careless but up till the last year its actually been one hell of a adventure.  Its time to put back on my hiking boots and stop hiding in this house and get back into the mountains. 

[mikeyb39]

good luck bud.  I guess someone has to the guinea pig, least you have quite a few CD4'S to play around with.  It will be interesting to see how things go...keep us posted.  glad you are feeling better.

[aztecan]

Hey Jake,

Just curious, is this your first regimen? If so, did you talk about your problems with your doctor? Perhaps another regimen might work better for you.

I know from experience of what you speak. Some of the early meds were downright nasty, but that is another story for another thread.

I usually give meds two months to settle down, which you have already done and then some. If they don't by that time, I make an appointment with my doc so we can have a meeting of the minds.

I don't know what your numbers are like, but remember they are your key to health and vitality, which you say you cherish quite highly - as do we all.

I have been on meds for 15 years. I have found that once I adjusted to them, my quality of life improved greatly, including energy levels.

I don't want to sound like I am badgering you, just offering some food for thought.

HUGS,

Mark

[PozJeepGuy]

Hey Mark,

CD4 1200 41% undec.  Actually right now i am on a treatment break from the drug study I'm on.  But I feel I have the ability right now with my number to not be on them.  Granted the meds got me to this point, but after a lot of soul searching I just came to the conclusion this might be my only time I can do this.  it might last 2 months but it might last two years and for me that's OK.  So with your experience what is your op ion.  I am curious to see.  Did you start meds off the back.  With so many years on do you have any side effects from being a long time user on meds. By switching meds have you become drug resistant?  I'm just really curious what someone who has dealt with this for years really feels? 

I hope you don't mind all the questions

[buginme2]

If it was side effects that were bothering you why didn't you change regimins instead of stoppin treatment altogether?

From what I understand resistance shouldn't occur by stoppin treatment.  Good luck!

[skeebo1969]

  Jake,

     I tried to look in your posting history and couldn't find which regimine you were on.  Would you mind sharing?  I know I am probably missing it and apologies if I am.

[bmancanfly]

Jeepguy,

Best of luck with your decision.  You should feel like you are in charge of your treatment.  I think sometimes when you are in a research study there is direct and indirect pressure to continue with a regimin that may not be working for you.  I've been there myself (due to lack of insurance).

I initially started on Kaletra and combivir and had an aweful experience with it.  So i stopped.  My CD4 stabilized and I had an unually low VL (always below 20k usually below 10k).  I was able to stay off meds for 5 years. 

But after 5 years my VL suddenly spiked to 250,000 which was very unual for me,  so we retested thinking it was a lab error.  The next test was off the charts (I think over 500k or 1 million).  It happened very quickly.  During the five year period where everything seemed very stable I started to get very lax about my "regular" blood work.  At first religiously every 3 months.  Then every 3-4 months.  Then every 6 months, when I remembered,  and so on.  And even when my labs demanded that I restart I was hesitant because of the memory of my initial bad experience with meds.

My concern for you is that this negative experience with your first regimin is going to cloud your view of treament going forward.  Potentially causing you to postpone initiation of therapy down the road when necessary.

In the end I'm on a very easy regimin now Viramune and Truvada,  absolutely no side effects, and UD.  It's only after restarting that I realized how ill I was during that 5 year period off meds.  The decline in my health was so gradual that I didn't even notice it was happening.  I wish I had started on an effective regimin with no side effects sooner.

One question i have is,  were you in the study for financial reasons due to lack of insurance?

Also, forgive me for reading between the lines of several of your threads,  but it seems like you want to run away a bit.  No judgement here at all.  But I just want to remind you that HIV will find you,  no matter what.  Being off meds means you need to monitor your health even more.

In the end there is no wrong decision here.  You sound like you feel empowered - and that's good. 

Again best of luck and good health.

[aztecan]

Hey Mark,

CD4 1200 41% undec.  Actually right now i am on a treatment break from the drug study I'm on.  But I feel I have the ability right now with my number to not be on them.  Granted the meds got me to this point, but after a lot of soul searching I just came to the conclusion this might be my only time I can do this.  it might last 2 months but it might last two years and for me that's OK.  So with your experience what is your op ion.  I am curious to see.  Did you start meds off the back.  With so many years on do you have any side effects from being a long time user on meds. By switching meds have you become drug resistant?  I'm just really curious what someone who has dealt with this for years really feels? 

I hope you don't mind all the questions

No, I don't mind the questions.

Your numbers are awesome, no doubt about it.  I just got my latest results: CD4 - 1,162 (40 %); Viral load undetectable at  < 20.

Not bad for an old fart who has been pozzie for nearly 26 years.

I started meds in 1996 when the protease inhibitors became available. That was 11 years after being told I was virally enhanced.

I will tell you briefly of what I have been through, but I want you to keep in mind these were the first drug cocktails available and they came with more noticeable issues.

Actually, for the first few years, it wasn't too bad. Daily nausea, diarrhea (with the initial Saquinavir, it was projectile diarrhea).

When I switched to Crixivan, the diarrhea subsided to a great extent. I did end up with kidney stones, but increasing my water intake to at least a gallon a day solved that.

The AZT still caused me to be nauseous, and a bit anemic, but it was tolerable. I never had any side effects from Epivir.

About four years ago, I noticed growths on my neck and back. Yep, I had the much-maligned buffalo hump. At that point, I had been on Crixivan for 11 years.

So, since then, a number of switches, changes and rethinking. I am going through that again now, because it is apparent Tenofovir doesn't like me much.

I have never switched because of resistance. It has always been side effects, and I didn't switch then for the first 11 years on meds.

Again, I am going to remind you the new meds are so much easier and have far fewer side effects than the first line that came out in the mid 90s.

What are your options? It depends on you. While treatment interruptions are not recommended these days, if you are going to have one, now would be the time.

The first thing I would do when the time to start meds again arises is to sit down with your doctor and talk to him about what you have been experiencing., if you haven't already discussed it with him.

As I said, I would give any new meds at least two months to settle in, but then, if they are still really causing you problems, it might be time to revisit the regimen. You will find the right fit and, when you do, you may find it much less taxing and just a part of your routine to take meds.

Also, if the side effects are minor, such as occasional diarrhea, a bit of bloating, etc., try to stick it out or take steps to minimize it. You may well find that the minor issues fade with time. That has been my experience.

Another bit of advice, if you don't mind. Don't wait too long to start again. If you allow your immune system to become too compromised, it may be very difficult to get it back to a hale and healthy state.

Just curious, what meds were you on?

HUGS,

Mark

[metekrop]

So only after stopping 2 doses I am amazed how much better I feel.  Energy, mental clarity, and no nausea. I haven't felt this good since I started those things 9 months ago.  I have to admit I know it's playing with fire but with that said I now have made my mind up.  Not until it's a have to I am off meds.  I also now more than ever realize its time to start watching diet, rest, exercise, and etc will have to play into all this now.  Including in this new adventure its finally time to stop smoking cigarettes.  I have a feeling that one is going to be a tuff one.  

I have doubted myself for months now since being + and I am tired of second guessing and living in what ifs.  Its not who i am and never has been.  If anything I have always been one to charge right into life and to live somewhat careless but up till the last year its actually been one hell of a adventure.  Its time to put back on my hiking boots and stop hiding in this house and get back into the mountains.  

Cool...Ms Chirsitiana Miggiore was saying her health is above average, energitic, feeling good etc etc...to the last minute.  But I don't now what was going on at the end.

[PozJeepGuy]

I was taking ritonavir, atazanavir, truvada, with a unnamed boosting agent.  Well the boosting agent is called gs-9350.  The whole idea of the study was A. to see if someone newly infected and started meds earlier will they hold a higher cd4 count for a longer time.  B. to see how the boosting agent works to make it a 4 in one pill.  I was feeling horrible nausea from day one.  It never let up so they gave me prochlorperazine for the nausea.  I just started slowly feel more and more tired.  Then in the last month I have started getting this mental fogginess that even started to effect me at work and that's where i drew the line.  I was getting so tired I had to come home and sleep.  Granted some of that is my testosterone levels falling.  However I never felt like shit until I started the pills.  I ask the doctor the other day if these numbers are so great was do I feel like crap.  The only thing I can think of is the pills.  So they agreed to a two week break, I'm suppose to call Monday and report how I feel.  I'm going to tell them I feel great.  My energy level has just tripled (I have gotten so much done at work), I can focus like before, and thank god in heaven no nausea.  I will agree with what someone said that this experience might deter me.  Well the answer is yes it has.  I'm now at the point where why even try again til i have too.  I want to see how fast or slow this will effect me.  I know the chances are low but I might be a slow progressore and might not need to try again for a while.   

[Miss Philicia]

It doesn't makes sense to be on both ritonavir (norvir) and GS-9350 at the same time. They're both "boosting agents".

[PozJeepGuy]

here it is as on the study paper:

Study Treatment Arm1: evg/ftc/tdf/gs-9350 active + ritonavir 100mg placebo +atazanavir 300mg placebo + Truvada placebo

Study Treatment Arm2: Ritonavir 100mg + atazanavir 300mg active + Truvada active + evg/ftc/tdf/gs-9350 placebo

If I am giving bad information please excuse me because I still have a hard time understand all this.  From what i understand doc and study lady believe I am on arm 1 because something to do with one of the meds cause yellowing when you first take it and I never had any that.  And from just things I have reported and from some of my blood test.  but they don't know which arm or do I know.  The blinding of the study is still a few months away.   

[Miss Philicia]

Yellowing would indicate to me that you were on Reyataz (atazanavir) and thus on treatment arm #2, and thus not on gs-9350 (which would be a placebo on that arm).

Otherwise I'd say that nausea and fatigue can happen on any HIV med regimen, but it lessens greatly (if it occurs at all) after 4-6 weeks. I can't remember how long you stuck it out with this regimen.

The bottom line is still that if one regimen isn't working with a patient that the normative process is to move on to regimen selection #2. You didn't want to do that, and though I personally wouldn't have elected to do what you are doing, it's your body, not mine. My personal feeling is that this is possibly 50% actual side effects and the rest a mental block about taking medication for the remainder of your life. If I'm correct on that last 50% issue then I advise working on this issue while you are off medication, and not just brushing it under the rug.

And, of course, the other worry is like someone described below allowing your lab testing and doctors visits to go from the advised every 3 months to longer and longer periods. Nobody can baby sit you on this so it's up to you to keep to a schedule. Play with fire and you will get burned, etc. My best friend went on a treatment break and ended up in a hospital for a week last year with PCP and not many t-cells, and this was because he gradually became very neglectful with doctor's visits.

[PozJeepGuy]

I get the importance of regular doctor visits with stopping.  Also I did not have any yellowing.  Thats why they think its arm 1.  But If im understanding every thing right with a cd4 of 1200 i should be able to stay off meds for a bit depending how fast they fall.

[Miss Philicia]

I get the importance of regular doctor visits with stopping.  Also I did not have any yellowing.  Thats why they think its arm 1.  But If im understanding every thing right with a cd4 of 1200 i should be able to stay off meds for a bit depending how fast they fall.

Oh, sorry -- I read your other post as saying you had yellowing. But if you didn't have yellowing that doesn't mean it's one or the other arm because not everyone becomes yellow on reyataz.

[mikeyb39]

that seems like a lot of drugs to go thru right off the bat, why not start with something simple like Atripla, one pill, proven to work, minimum side-effects.  I'm lucky I don't have any side effects except a few weird dreams and raging boner every morning.  Unless its financial, I can't understand why a newbie would start off in a drug study, but what do I know.

[phildinftlaudy]

that seems like a lot of drugs to go thru right off the bat, why not start with something simple like Atripla, one pill, proven to work, minimum side-effects.  I'm lucky I don't have any side effects except a few weird dreams and raging boner every morning.  Unless its financial, I can't understand why a newbie would start off in a drug study, but what do I know.

Hey Mikey:

According to your signature line, you aren't due to start Atripla for about another nine years (LOL) - Check it out when you get a chance   

[mikeyb39]

hi Phil,
oops! thanks for pointing that out, haha.  typo. 

[Inchlingblue]

here it is as on the study paper:

Study Treatment Arm1: evg/ftc/tdf/gs-9350 active + ritonavir 100mg placebo +atazanavir 300mg placebo + Truvada placebo

Study Treatment Arm2: Ritonavir 100mg + atazanavir 300mg active + Truvada active + evg/ftc/tdf/gs-9350 placebo

 

So basically:

arm 1 is elvitegravir (a new integrase inhibitor, not yet approved) and Truvada with the new boosting agent and
arm 2 is Reyataz/Norvir/Truvada.

This is it to test Gilead's new Quad pill, which is basically what arm 1 is.

All I would say is don't let a less-than-stellar experience turn you off from meds. Will you be able to get your blood tested to see how your numbers are looking? And if so, how often? Make sure you monitor the situation. Do you have a regular doctor you can see?

Also, it's not like you could continue on this combo anyway, right? Isn't the study over? Do they offer you meds if you did want to continue?

[PozJeepGuy]

The study has about 6-8 months left to go.  Now that its been 5 days I know for a fact I'm done with the study.  If the meds weren't making me feel like shit I would be able to stay on the them even when the study is done because they want to keep tracking those on it to see long term results.  To answer a few questions I saw I did the study because I do feel we wouldn't be where we are if folks didn't do drug studies and when I first tested positive it was my feeling it was my way to get involved and do something.  I am lucky enough to have fantastic private insurance threw my work.  I remember when I joined the study it made since to see if someone with a higher CD4 count would be able to maintain that CD4 for a longer time by starting meds earlier.  With that said I never took into consideration of side effects and yes the mental aspect of taking meds.  Now after researching things for the last 9 months, talking to you guys and people in person, and over all first hand experience I have changed my mind to why not wait till it is a needed then go from there. 

[smiteler]

i was on an interuption study about 5 yrs ago  
what they did was boost and stimulate my immune system
by giving me an injection of canary pox (or a placebo depending on the group
you were in) and then they monitor your numbers
to see how long they can stay off meds and keep your cd4 above 200 mark.

they pulled many,many labs at first it was  bi weekly,then after a while just monthly.
i felt soo good off meds they could of pulled labs daily
for all i cared!
out of the study (not sure how many people)
i lasted the longest keeping my cd4 count above the 200
mark for over 3 years before i had to go back on meds.  
during those 3 years i had off of meds
were the best i ever felt since i was infected.
i would do it again in a heartbeat if i could

[bocker3]

Oh, sorry -- I read your other post as saying you had yellowing. But if you didn't have yellowing that doesn't mean it's one or the other arm because not everyone becomes yellow on reyataz.

True -- I've been on reyataz for 5 yrs and have never had any jaundice.  I have had slightly elevated bilirubin results from time to time, but no yellowing at all.

Mike

[newt]

Hello

I am somewhat late to this thread, because have been on Exmoor for a week (where a Jeep is truly handy) but am glad to hear you have taken your own decision. As for

I have to admit I know it's playing with fire

I think not. The key factor here is your lowest CD4 count (called your CD4 nadir) before starting treatment, and your was very good, normal enough even, plus your HIV is very new, so the risk to your health of stopping meds now is very low.

All the best and many happy drives.

- matt

[BJS2011]

So only after stopping 2 doses I am amazed how much better I feel.  Energy, mental clarity, and no nausea. I haven't felt this good since I started those things 9 months ago.  I have to admit I know it's playing with fire but with that said I now have made my mind up.  Not until it's a have to I am off meds.  I also now more than ever realize its time to start watching diet, rest, exercise, and etc will have to play into all this now.  Including in this new adventure its finally time to stop smoking cigarettes.  I have a feeling that one is going to be a tuff one. 

I have doubted myself for months now since being + and I am tired of second guessing and living in what ifs.  Its not who i am and never has been.  If anything I have always been one to charge right into life and to live somewhat careless but up till the last year its actually been one hell of a adventure.  Its time to put back on my hiking boots and stop hiding in this house and get back into the mountains. 

  Personally I don't understand why anyone would take a break from meds that are keeping us alive and healthy. I know I would personally never even consider a break. When I started on meds, truvada and viramune, the side effects for 3 months were horrible. Why would you want to eventually have to do that all again. We all know without meds your Cd4s will drop and VL will rise. I guess I am just saying why mess with something that is working so well? Good luck.

[PozJeepGuy]

SimPly put the meds were mak

[PozJeepGuy]

Sorry about that iPhone and fat fingers don't go together well.   The meds  were making me sicker than the virus.  With my cd4 so high I don't need  to be on meds so why do it then. Doc and I are watching my numbers and when the day comes I need to start again I will, but for now my quality of life is a lot better. 

[red_Dragon888]

Sorry about that iPhone and fat fingers don't go together well.   The meds  were making me sicker than the virus.  With my cd4 so high I don't need  to be on meds so why do it then. Doc and I are watching my numbers and when the day comes I need to start again I will, but for now my quality of life is a lot better. 

That is important.  To keep an eye on everything so there are no surprises.  Good luck.