Personal stories of stopping meds?

[marky]

Can anyone share with me personal stories of stopping meds........ what the outcomes were?.... how long they were able to be off them before starting again? .... If they felt the risk/ reward was worth it?...... the reason I'm asking is I'm considering discussing taking  a break from meds with my doc.   I'm very aware of the SMART study and that they stopped the study due to bad "results", however, I just wanted to hear what some in this room might have experienced.   

[jessem3s]

I actually am super scared of taking meds and stopping.
The doctors I currently go to want to put a couple of us on meds.

Remember I go to an adolescent med HIV specialist here at the University of Miami in Miami Florida.
They have this new research that will start up and they want to put a group of us HIV poz "teenager" guys on meds so that we can build all the possible cd4's and then in the future take us off meds.

I mean I am all about clinical try outs, but I am worried.
I have read tons of stuff about people being vulnerable to AIDS disease if they dont take pills early on and I read other things saying not true.
The point is that I would take your doctors advice and what ever information you find and put it into your own Perspective.
ALWAYS trust your doctors, but question them twice!

[anniebc]

Hi Marky

I was put on a seven month drug holiday because my last combo was causing liver problems..this is not something I would have done otherwise.

I went from a CD4 of 1080 to 380 and a VL of <50 to 90,000 in those seven months, although I never suffer from any illness during my drug holiday coming off the drugs is still a choice I wouldn't have made.

Is there a reason you want to come off meds at this time?

I agree that you should talk to your Doctor about this, unless you are having a great deal of problems with your meds it's not a decision that should be taken lightly..but like everything it's a personal choice but one one I would not encourage you to do...but that's just my opnion.

Hugs
Jan

[Matty the Damned]

Matty the Damned developed viral resistance to his combo back in late 2004 and ceased treatment. By the end of 2006 his viral load had spiraled out into the millions and his CD4 count had crashed from the 700's to 15.

And he got ill. Very ill.

Naturally Marky, your mileage may vary.

I would echo the wisdom of Jan here when she says:

I agree that you should talk to your Doctor about this, unless you are having a great deal of problems with your meds it's not a decision that should be taken lightly..but like everything it's a personal choice but one one I would not encourage you to do...but that's just my opnion.

Stopping and starting medication is always a serious thing, which requires serious consideration. Ultimately the choice is yours, but ensure that you're aware of the potential consequences.

MtD

[StrongGuy]

Talk to your doctor. You need to look deeply into the ramifications coupled with your history. It's a very serious decision and other's outcomes or experiences may not be what you will face if you stop.

[gemini20]

Hi Marky,

I'm one of those that have stopped meds and firmly believe that for me a stop/start strategy is the right one, regardless of the SMART study outcomes.

A quick plotted history to save you looking up old posts of mine.

Diagnosed in 1991, didn't need to start treatment until 1999 and then only because my t-cells went below 300 and % dropped to 20 so I did what the doctor told me and started meds. Had an horrific experience, allergic reactions, hospitalised due to side effects and only lasted 4 months on treatment before stopping.

My first treatment break was from February 2000 to April 2004 and in that time I was largely well and healthy except a couple of blips with bacterial pneumonia in April 2003 and shingles in October 2003 (both brought on by stress I believe as t-cells were between 250-300). Around December 2003 my t-cells fell below 200 and continued to fall for the next few months so my doctor strongly suggested I go back on treatment in April 2004. So I reluctantly agreed.

I lasted 18 months on what was my third combination and stopped in October 2005 when my t-cells had got up to 474 (33%) and viral load was undetectable. In the last year on treatment I didn't experience any side effects with the meds but my adherence was not good and I just didn't want to be taking pills every day anymore so I decided to stop again.

So I'm currently in month 22 of my latest treatment break. I have had no ill health whatsoever since stopping meds this time. My t-cells have fallen back to pre-treatment levels and viral load is no longer undetectable but it's still never that high e.g In 16 years I've never been above 70,000 except when I had pneumonia.

At some point I expect I will get sick again and when that happens I will reassess my decision about HIV meds but until then I have no intention of taking them again.

While there is a risk in my strategy, it's one I'm willing to take because every day I'm not subjecting my body to the potential short and long term side effects of the meds is worth
having.

Just another perspective,

Emma

[aztecan]

Hey Marky,

As you can see from the posts, the reasons and the outcomes of stopping meds vary greatly. Emma has been very lucky, in my humble opinion, while Matty and Jan had more serious results.

Before stopping meds, I would have a serious heart-to-heart with your doc. As you said you are aware of th SMART study results, so you know the possibilities.

It also depends on where you were when you began taking meds. If your immune system was already seriously compromised, the chances of having a rapid downward spiral are greater than if you started when I did, when your CD4s were still in the 400s and viral load of between 50,000 and 60,000.

But none of this is cast in stone and there are no guarantees. I have been on meds for more than 11 years now with no treatment breaks.

I would have to agree with Jan and Matty:

I agree that you should talk to your Doctor about this, unless you are having a great deal of problems with your meds it's not a decision that should be taken lightly..but like everything it's a personal choice but one one I would not encourage you to do...but that's just my opnion.

HUGS,

Mark

[pozattitude]

I took a 1 yr break as my previous doctor told me that with my numbers I could give my body a break from the meds.
At the time of my break my Cd4 was over 1100 and VL <50.  A year later the Cd4 was bellow 500 and VL in the 100's of thousands .   
I don't recommend breaks unless necessary.  I was lucky I didn't develop resistance to my old regimen I was on before the break.



Rich

[Cliff]

I've been on holiday for 2+ years now.  As of my last count, I probably still have about another year or so before I need to start. It's been good.  I had some ups and downs (significant increase in viral load and a drop in my tcell counts this past holiday season).  But overall things have gone well.

Everyone is different, so I'm not sure if because one person does well if that will mean anything for you.  I think it largely depends on how low your tcells were when you first started treatment and the general state of your infection.  My disease was fairly new when I decided to stop treatment and my tcell counts were pretty high....so that helped me.  I think if I had started treatment very late and with a low tcell count, I probably wouldn't have been able to take a break.

good luck and keep us posted.

c

[marky]

Well..... there are other studies than the SMART.... some that are very supportive of stop/start methods of managing HIV care.   Honestly, I would never do this WITHOUT the ok of my doc (I'm in miami beach with one of the best).   It's just an option I want to discuss with him.   I've been on the same 3 drugs for 5 years now (viread, viramune, epivir).... no side effects, numbers are good etc.   I'm just suspicious that long term drug use is bad for my body and a break would be so nice (besides the money they cost!!).    I've never been sick with HIV stuff.....luckily, and it just seems so wierd that I've been on drugs for 5 years without ever being sick.  I think they might call this "pill fatigue"..... also, I've been really tired alot and I wonder if it's the meds (or something else-- doc  just said it was a common complaint. ??!!).   Anyway, thanks for your stories..... and I'm so glad to have real life people able to share with me... not just numbers from a study.  Some of you have had success.. some not.... I'll chat with my doc.  I think I know what his answer will be.....  

[Cliff]

One of the key tests is how low your tcell counts were when you started meds.  If they were low then and even if they are high now, you will probably trend down to that low count fairly quickly.

Also, if your doctor says no, it doesn't mean that you need not consider it.  Your doctor is there to give advice (expert advice) but at the end of the dya it's your body and your treatment. 

My doctor was against the idea (simply because he didn't see any reason to stop when things were going well).  But sometimes there are reasons to stop even if things are going well.  I'm glad I didn't take his advice.  He was quite professional about it.  Once I made my decision, he was behind it 100%.

Good luck,

C

[jack]

I went on a drug holiday in 99 or 2000 because of resistance and really bad lipodystrophy. My ts were around 325 and viral was 15000. My vl bounced around between 5000 and 75000,finally exploding to a mill in the 36th month. My ts stayed above 300 the entire time,until the 36th month in which it dropped to 280.
I had been on drugs since 89 and it was a much needed break. It was great. I regained all my energy,started experiencing solid bowel movements for the first time in years, stopped being sick every day,  lost 65 pounds of lipo fat and was finally able to come out of hiding.

[LatinAlexander]

I had to take a break, cause side-effects (PN). It lasted 6 weeks (AWESOME WEEKS I should say). My VL kept undetectable (see my signature for numbers), but my cd4 # and % decreased. It was with my docs ok. Even 6 weeks after starting treatment again, my CD4 numbers did not improve. I am waiting fo my next checkup

Alex

[leatherman]

I quit taking meds several times through the yrs cause the side effects were just too much to handle. I'd feel great for 6-8 months, and then get desperately ill again. By 9 months off the meds, I'd usually be back in the hospital with pneumonia and a VL off the scale. So I'm really trying to stick with the better regime that I'm on because those breaks are bad for me.

[redhotmuslbear]

Marky,
If you have your reasons for stopping meds -- and remember that it's your choice, not your doc's -- then just discuss them with your doctor and attempt to reach some reasonable course of monitoring along with a contingency plan for "pulling the trigger" to start meds again.

Eliciting stories is simply going to fill your mind with a specturm of experiences of other people, and there's no way of knowing in abstract where your personal experience will fall, with the less fortunate whose health fails quickly or the freaks like me who go years without antiretrovirals.  All of those stories limit your clarity on your reasons and your expectations, and they risk filling you with undue fear or euphoria.

Peace,
David

[Dan J.]

my own personal experience with stopping meds led me to the hospital.  there is no way I will ever go off them.

[Joe K]

Hey Marky,

Might I suggest that other peoples experience with stopping meds has absolutely nothing to do with you or your decision and that is because we are all so unique, that you cannot assume anything based on someone elses experience.  What is crucial is for you to have a real discussion with your doc and mention everything that you have said here and don't leave until you have answers that you understand and make sense for your situation.

There is a reason that they call it individual therapy and your sole goal is to become informed and then utilize the best resources you can to make a decision that you believe is both right for you and one that you can live with, because you are the one who will be living the decision.

I wish you the best of luck in any decision that you make, but don't forget that if you chose one path and it doesn't work, you can always change direction.