POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: txcutter on December 22, 2010, 06:20:23 pm
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Hi there,
I am new to this site, but have question about stopping and starting HIV meds.. so thought I would ask and see if anyone else has had similar situation.
Here's the deal.. I have been positive since 1988 and have remained asymptomatic since. I started the cocktail therapy in 97.. to make sure my viral load, counts, etc stayed good and I remained asymptomatic. This past June, due to some problems with concentration/focus on the job, I asked my Doc if I could take a break for a while until I could get things under control. He was comfortable enough with my stats to do this and I have been feeling great, much more energy, better focus, memory and have gained some weight as well while working out over the last few months. It's been a great break and don't want to go back on meds unless I have to. Has anyone else done the similar? I have had some very mixed reactions from some friends who are HIV when I have mentioned this. It seems very odd to them. So, I was wondering if anyone out there has gone through the same or knows anything specific about starting and restarting HIV therapy again.
Would appreciate any input.. Thanks!
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"Drug holidays" or "structured treatment interruptions" are sooooo 2002. OK, we're not here to discuss fads, but there was a bunch of research done in this area years ago, and its popularity faded out because, eventually, people needed to go back on drugs again -- some sooner, others later.
That said, the proof is in the pudding: what do your lab tests say? Viral load? CD4? What were your levels when you were taking meds, and what are they now? You should be following up on these. So should your doctor, and if he's not, then you need a new doctor. Your lab tests will tell you whether or not you need to be on meds. It's possible to feel great, and still have lousy labs.
Generally speaking, you'll need to go back on meds. The HIV doesn't go away. There are a small minority of folks who are "elite controllers" who have immune systems that are capable of controlling the virus on their own, but like I said that's a small minority. And again, the only way to know that for sure is through your lab work.
If you have concentration / focus problems, have you spoke to your doctor about switching meds (especially if you are taking Atripla or Sustiva)? There are lot of options out there.
Regards,
Henry
P.S. For your reference, I've been poz since 1989, and started meds in 2004.
P.P.S Since this is your first post, why don't you take a few minutes to write an introductory posting? It's always nice to get to know new LTSers here.
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Thanks Henry,
My stats never indicated I needed to be on meds.. In '94 my original Dr started putting all HIV patients on cocktail therapy regardless of CD4 counts and viral load. That seemed to be the protocol at the time. I resisted until '97. My CD4s have never fallen below 800 and are typically over 1000 (wether on meds or not). My viral load has remained undetectable since I became + in '88. When I stopped HIV meds in June, CD4s were over 1000 and viral load still undetectable. The Dr I see now feels comfortable with me being off all meds while we continue to monitor stats. I just had blood work done this week and will get new stats after the New Year. My Dr seems to feel comfortable with taking someone off meds as long as CD4 counts stay above 500 and viral load is at minimum.
I was wondering if anyone else is doing the same or has any knowledge of negative consequences from this type of therapy.
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Hey Txcutter,
First, welcome to the forums and the LTS forum in particular. ;D
Regarding your question, the SMART study results showed that drug holidays, or strategic treatment interruptions, are not recommended.
Here is a link to a story about the study.
http://www.poz.com/articles/hiv_interruption_holiday_761_13914.shtml
From what I have learned, the problem isn't that people suddenly become ill or crash and burn, HIV wise that is.
Studies have shown that the virus itself causes problems, especially for those who have lived with the virus for an extended period - like us.
The virus is believed to cause ongoing inflammation in the body, which causes the body to develop other problems. The thinking is to keep the virus as controlled as possible to reduce the impact this constant inflammation has on us.
I am rather in the same boat you are in. I never had any OIs and have never been diagnosed with AIDS as yet. My viral load has been undetectable for more than 14 years.
But I know someone who was basically in the same situation as you and I. He stopped his meds and was fine for about four months. Then, his viral load spiked and the CD4s started to plummet.
I am not saying this will happen to you. But be prepared just in case your numbers go south.
I hope you will share with us how the labs go when you find out in January.
HUGS,
Mark
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Hi there,
I have experimented with treatment breaks of varying lengths over the last decade. I must say in all my years being positive I’ve never had a cd4 count over 1,000 either on meds or not so perhaps I was always starting from a lower point than others.
I was diagnosed in 1991 and didn’t start meds until 1999; in that time my cd4 count averaged 508 (23%) and viral load 11,542; though for the first seven years viral load testing wasn’t available.
When my cd4 count showed dropped below 300 (20%) my doctor advised I start my first cocktail. I only lasted four months on my first meds and then decided they were not for me and stopped, mostly due to allergic reaction to Abacavir which occurred within 48 hours of taking the first pills and what would now be classed as an IRIS episode two months after starting treatment.
I restarted again in April 2004 having experienced a bout of bacterial pneumonia twelve months before that and a cd4 count that dropped to 141 (15%); I went through until October 2005 and decided to take another break; no side effects at this point I just wanted to stop; cd4 count had reached 474 (33%) at this point.
Two years later, October 2007 I restarted again after dropping back to 112 (15%) on yet another combination; experienced IRIS episode in November 2007 but stayed on treatment this time around until August 2009 when I reached by highest cd4 count for 15 years of 711 (33%) and had been undetectable throughout this time on meds.
Unfortunately this last treatment break lasted only 4 weeks; my doctor wanted to check after a month what was happening and in that time my cd4 count dropped to 159 (16%) and viral load had risen to 61,543.
What I’ve noticed by looking at my blood results over that decade where I’ve stopped/started treatment is that each time I’ve restarted the average cd4 count during my time on meds has lowered 394 (28%); 317.5 (23.2); 269 (22.3).
Each and every break I have taken has been in full consultation with my doctor and it wasn’t until the last one in August 2009 that he advised against it and I went ahead anyway; as it turns out he was right and I think I now have to accept that I cannot take breaks anymore although the temptation is always there for me.
I hope that gives you some insight but of course we all respond differently so my experience is unique to me.
Best wishes, and welcome to LTS bit of the forum,
Emma
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My CD4s have never fallen below 800 and are typically over 1000 (wether on meds or not). My viral load has remained undetectable since I became + in '88.
OK, strictly speaking I'm not an LTS (due to diagnosis date) but I'm a moderator so I'm going to respond here anyway.
Mate, you are a LTNP, and possibly an elite controller. You don't need meds. You do need to be monitored at least four times a year, but you certainly don't need meds. I don't know any elite controllers who do. The clue is in your undetectable viral load when not on meds.
If you want further information as to what it means to be an LTNP or elite controller, please check out the Zephyr Foundation (http://www.zephyrfoundation.org/) website.
You are one of the lucky ones who doesn't need meds. Vacation away, as long as you make sure you are regularly monitored in case your situation changes.
Welcome to the forums!
Ann
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Hi Tx, welcome to our LTS'er family. Glad you found us.
I've taken few treatment interruptions, and every time I did, my viral load went over 100,000 within a short period of time. So, perhaps Ann is right, and you didn't really need meds in the first place.
I'll be curious to see what your test results are also. Good luck!
Betty
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Wow.. what a GREAT place for getting some good information. I want to thank all you for your feed back as well as the warm welcomes. I will definitely post results from my blood work in January for everyone's curiosity. After being on the meds since '97 and the recent break since this past June, I am keeping my fingers crossed that history repeats itself and all stats remain good.. Best case to hope for would be Anna's thoughts of me being LTNP.. thanks ANNA!
I am seriously impressed with this site. After being HIV since '88 and loosing a lover in '96 to AIDs, I thought I knew a lot about all this, but you guys have really sent me down a whole new avenue of thought. What a fantastic site. I will remain vigilant with monitoring stats and be sure to let all know what they look like in 2001! What a great way to start the year if everything is still intact and stats are still looking good..
Thanks again all and have a Merry Christmas!
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Hi Nick and thanks for the welcome! I will shoot you a quick message with my email as well. Always looking to meet good people in the area.. especially people I have so much in common with.
Steve
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I actually have a question.... my partner, who works two part time jobs and was receiving assistance from the state with all his meds, recently was denied because by the end of 2010, he was earning too much. He obviously is not earning enough to pay for the meds out of pocket. In the meantime, he did get his doctor to supply him a months worth of meds for free, but that will be running out shortly and there is no plan after that. He says if he has to, he will go without meds, but I don't not want to see that, nor does my mother. We both are searching for a full time position for him with benefits, but what should he do in the meantime? I am more concerned about this than he is, and have offered him some of my meds as I can allow against his will. Are there any assistance programs that he can take advantage of until he finds a full time job instead of two part time jobs? If you have any suggestions, my email is jghartman@verizon.net As always, appreciate your input and suggestions.
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He says if he has to, he will go without meds,
is there an ASO in your area that you can contact and discuss options? (what kind of assistance was he receiving?)
also as bad of an option as this sounds (though many of us have already had to choose this path) is working two jobs and making too much money really worth not having meds?? Many of us have had to choose poverty to keep access to meds. It's a shame that even working two jobs your partner is unable to get access to insurance through either company or on his own.
by the way, going without meds is a terrible option as it can lead to resistance, sickness, a change in meds, new side effects, etc.
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What medications do you need?
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decayingsinner, I know you live outside Philadelphia in the suburbs. I would sit down with a case manager at ActionAIDS, 1216 Arch St, 6th Fl (directly across from the convention center) and see if your partner has covered all of his bases.
http://actionaids.org/
edit: actually living outside of the city I'm making the assumption you can go there, call them first as they may tell you to go somewhere else in your area/county. IIRC aside from state they also get city funding so they may limit services just to Philadelphia residents.
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i took a drug holiday around 6 yrsago.....my bloods were good but side effects getting to the point of pure misery...weight gain, hearet burn, palpatations, no sleep, migrains with vomiting...just unliveable.....so a holiday to detox my body was on the cards...great i thought...within 3 months my weight plummeted....i was actually happy about that....then as my appetite disappeared completely my clothes fell off me...my mood was allways...i'm tired...leave me alone...i realised i was very very weak and quite uncapable of doing my work...the break was supposed to be a year but at my 9month bloods the doc said....virus load over 1 million....time for meds , even tho my cd4 was 400...... i agreed and within 2 months of restarting meds i was fine...but i have allways had a weak virus....as soon as meds appear it disappears....but i am also very resistent to many drugs .....so my advice would be it definately depends on the individual circumstances. all the best.
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First, thanks everyone for your responses and some great information! As promised.. got my stats today and here are the numbers for those of you who wanted to know.
Stopped HIV therapy June 14, 2010: CD4s then at 1169 with Viral Load < 50
On Jan 3rd blood work is as follows: CD4s now 1108 with Viral Load at 550
Doc seemed to be OK with these numbers and did not seem to think that was a bad change after 8+ months of no HIV therapy. I will continue no HIV drugs for another 6 months and continue to monitor blood work at regular intervals. Right now.. I feel great and counting my blessings! Nice to be off the meds for a while!
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Hi
Its my opinion that to call what you are doing a "vacation" from HIV meds may be wrong. Tx, I think what you are doing is an attempt to manage HIV on your own. If you are a long term non progressor and have the appropriate genetic quirks....then you will never have to go back on HIV medication. There may be OTHER medication necessary to keep you healthy but what you decsribe is not a vacation but stopping HIV meds.
I have managed HIV on my own since originally tested in 1989. I have been on other medications, but never on HIV meds. My CD4's are around 500 right now but have been as high as 1200. My viral load is 150. You should be tested to see if you have the non progressor gene.
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Hey Tx,
After eight months, your numbers are great. In fact, much better than anyone I have run across.
I agree with Joel, I would get tested to see whether I have the genetic predisposition to be a long-term non-progressor.
HUGS,
Mark
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Philicia- I really appreciate the advice. My doctor is at the University of Penn..so I will pass this by him. As of now his doctor has found a way to supply him with meds for a few months. He seems to think that if he can't get the meds it will be okay for a little while until the situation gets itself worked out, but I don't see it that way and would do anything to make sure he does not run out of meds.