Standing at a Crossroads (Again)

[griezzel]

I didn't have an HIV test until 1989, after putting it off for years. I was just assuming I was + because of my sexual interests and history. I had a bad case of shingles at the time and opted for the test on a whim. My t-cells were between 500 & 600, and I was given the option, indeed a recommendation, to begin AZT and other drugs.

Having had several extremely negative reactions to various pharmaceuticals over the years I was pretty certain that I would find the side effects of the HIV drugs devestating, so I thought I'd "wait and see" for a while. As the years, and blood tests, passed it appeared my numbers were fairly stable. Finally, in 2001 I asked my (very excellent) doctor in Seattle (an HIV specialist) if I were considered a "Long Term Non-progresser". He said no because there was a very gradual worsening of the numbers.

When, in 2006 (in Texas), I asked this question again, after a particularly good lab result, the doctor said yes, she would consider me a LTN-P.

I am also positive for Hepatitis C. I have never injected drugs with a needle so must have contracted it through sex. Again, because of the side effects of treatment I have decided not to persue therapy.

Now, after relocating again to the West Coast (Humboldt County), my numbers are going south. I have had a fungal problem (crotch and perianal) for some time that has been worsening despite treatment. This appears to signify that my immune system is showing damage.

So I am now seriously considering begininng HIV antiviral therapy. But I'm very apprehensive of the side effects I am sure to experience. There is no way of telling, unfortunately, which effects I will experience or how severe they will be until I begin. So I am (hopefully understandably) nervous about taking this road, as it is a major change in direction into unfamiliar territory.

I've come to this forum to learn from the experiences of others and to begin to educate myself about many things. For the last 25 years I have not given this road any attention, except where it concerned my "family" and friends already traveling on that road.

I have in my hands a bottle of Atripla that I am planning to begin tomorrow night. I wanted to do everything I could before starting in order to be prepared in case the side effects are bad and long-lasting. I've cleaned and rearrangend the house and, since the bathroom is downstairs and bedroom upstairs, will temporarily move the bed down to the dining room. Today will be cooking lots and freezing portions, tomorrow go to the Food Bank. I live alone and have no friends in my new town yet, so must look after myself.

I have found many posts on these forums that have helped me a great deal. I would like to do my part to contribute to the wealth of experiences in these pages. I have already discovered that there are some here that take issue with my story since they vehemently promote a certain agenda. I have no advice or recommendation for anyone, and only want to communicate my experience of life, which I know is unique, somewhat unusual, often unpopular and always controversial in every aspect.

[weasel]

 Hey there !
                    I was in denial  for many years .

              I ignored  fungus infections  eating me away !
         I ignored  skin fungal infections 

       I just plain  ignored it all !

       I knew in 1976  I had something horribly  wrong !
      Living In New York City and hanging around the  " meat district "  should have been clue number one !
      I moved to San Francisco  and NOBODY cared 

       Years later it hit me like a frying spider in  the face !

      I was like why me ?

      Well ,  I was  a whore !

     Do NOT be afraid of  taking MEDS !

    It will change a few things !

   But life will be so good after a while !

  The meds will help you !

  If  I can make it any one can !


 GOD be with you !

 TAKE THE PILLS , DEAL WITH THE DISCOMFORT !
 IT GOES AWAY FOR THE MOST PART !

LIFE IS WORTH LIVING !

 LIVE IT !

                                            Be well , Carl

[griezzel]

TAKE THE PILLS , DEAL WITH THE DISCOMFORT !

Thanks for posting, but your message is not very helpful.


It is great to hear that most people suffer few bad side effects or that those that do can usually deal with them. I hope that will be the case for me, but then some people have intense negative reactions to some of the drugs. I'm not certain I could deal with some of the effects people report.

[aztecan]

Hey Griezzel,

I fully understand your apprehension regarding starting treatment. I am pretty sure all of us have had the same fears.

I started meds long ago, but I still remember staring at the six pills/capsules that made up my first dose. I think I stared at them for the longest time, then threw them in my mouth, swalllowed them with a large glass of water and then held my breath.

I just knew I would instantly become ill, or throw up the cocktail I had just taken. I didn't, but I did experience some side effects.

I think the bottom line is we all have to make a choice: Would we rather suffer the side effects of the meds, if we experience them, or the side effects of late stage HIV disease, which woulid not be fun regardless of which of the OIs we found ourselves battling.

I am not trying to be flippant here. I am serious. It can take some soul searching for some people to decide what to do.

That said, I think you are doing the right things by preparing for the worst case scenario. That doesn't mean it will happen to you, but at least you are ready should you need to be.

All meds have side effects. I took AZT for more than a dozen years and have had side effects from it. I also took Sustiva, the drug in Atripla that would be the most likely suspect should you experience a problem.

I could not handle Sustiva. I am just one of those for whom the side effects never lessened. I took it for two months. I always give a med two months to see if the side effects, if any, will lessen.

I know many people who take Atripla without any problems. Some even take it in the morning because it fits their schedule better.

The onliy advice I would offer is to remember to give the meds a fair shot. If, after what you consider a fair time (like I said, mine is two months) the side effects are not something you can live with, talk to your doctor. There are many other options out there.

You have options and there is no reason for you to fear having to put up with a lifetime of side effects.

So, those are my 2 cents worth. Good luck with your Atripla and keep us posted on how it goes.

HUGS,

Mark

[BT65]

Hi Griezzel,

I also understand why you don't want to start meds.  But, the situations that could surface without the meds are, to me, more horrific than side effects from meds.  That said, I, like Mark, couldn't handle Sustiva.  It caused too many side effects, mostly central nervous system, that I couldn't handle, after a couple month's shot.  Some people can take it with no problem.  I would at least give it a good time to see if the side effects lessen, if you have any at all.

I now take Truvada/Isentress, and I can tell you I am more than pleased with this combo.  The only side effect I ever notice is occasional gas from the Truvada.  Nothing severe though.  There are a lot more choices today than years ago, so don't give up if you can't handle the Atripla.  It sounds like you have a good doctor, which is extremely important.  Good luck, and we're here, anytime.
 
Betty

[megasept]

Hi Griezzel! Thanks for posting.

Do expect some med side effects, but nothing devastating. I don't take Atripla, but Isentress + Truvada. I also took two different meds 1997-2002. It's all something you should be able to handle. Really. Please be compliant with your med dosing instructions. Taking them willy-nilly would be worse than extending your period of no meds.

The HCV treatments are several times as difficult to endure, from what i hear. You many choose one of those (new drugs of several classes are changing the success rate radically for the better) at a later date. Get the HIV under control and improve your #s which ought to boost your immunity. You're not newly infected, so one thing at a time ought to work best for you.

I want you to know I am also a slow progressor (once called LTNP). I have NOT taken any meds for a cumulative 12 of my 19 years since seroconversion, so I am neither gung-ho for nor adamantly against treatment in some general sense.

Wishing you good health!
-Steven (aka     megasept)

[aztecan]

Steven reminded me, I also was med free for the first 11 years of my infection. I now have 24 years plus since I was told I was positive.

When I did start, my CD4s were in the 440 range.

I don't regret starting when I did.

HUGS,

Mark

[griezzel]

Took the first dose at 3:30 am this morning just before going to bed. Slept a little, but not deeply. Got up at 9:30 very unsteady and wobbly, but not dizzy. No gastro effects yet. Eyes dilated and very sensitive to light.

Only 10 hours has elapsed, but so far so good.

[megasept]

Took the first dose at 3:30 am this morning just before going to bed...but so far so good.

Griezzel: Glad you bit the bullet.

I hope 3:30 am (and maybe 3:30 PM) are dosing times you can maintain? We all get to choose what time to take our drugs, but not the interval between dosings.

-Steven (aka    megasept)

[griezzel]

but not the interval between dosings.

Over the weeks my sleep schedule tends to change. Have been going to bed around 3 to 4 am for several days, so atm this is normal. Just a couple of weeks ago I was going to bed at 9 pm. If it's really important to take the pill at the same everyday I would choose 11pm.

How necessary is it to be absolutely punctual?

[Miss Philicia]

How necessary is it to be absolutely punctual?

I'd be as close to punctual as possible until you get your viral load suppressed for 6 months.  After that you have a bit more leeway at least with Atripla.  I'm not sure why you'd take a chance with being punctual when you've spent so many years worrying about side effects.

[griezzel]

Chance? Chance of what? Years worrying? Not exactly.

I found an answer to my question that explains what you must've meant by "chance".

=========================================
Question: Can I be late with Atripla?
Can taking my daily pill of Atripla an hour later than my usual time make me resistant to the medication?



Answer
Taking meds late can increase the chance of resistance. The three drugs in Atripla generally have high enough concentrations after 24 hours for this not to be a big risk if it happens very occasionally (once a month), and probably still a small risk if it happens more often.

Taking antiretrovirals as close to the prescribed time as possible is important. This is to keep good drug levels in your body and keep the pressure on HIV replication. The more HIV replicates, the higher the chance of the virus mutating. Mutations lead to resistance.

Some classes of medications are more ‘forgiving’ in terms of timing than others. This is related to how low drug levels get at the end of the treatment dose.

Atripla is a combined pill that consists of tenofovir (TDF), emtricitabine (FTC) and efavirenz (EFV). All these drugs have generally enough of an active drug level to allow for taking them a little earlier or later, and an hour is probably ok. So, every delay in taking your Atripla will not necessarily lead to developing resistance. On the other hand, being late on a regular basis, will increase the chances.

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http://i-base.info/qa/187

[AlanBama]

I think the bottom line is we all have to make a choice: Would we rather suffer the side effects of the meds, if we experience them, or the side effects of late stage HIV disease, which woulid not be fun regardless of which of the OIs we found ourselves battling.

Amen, brother.