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Author Topic: should I start meds ?  (Read 3247 times)

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Offline MikeMax1313

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should I start meds ?
« on: December 21, 2013, 07:32:21 PM »
Hi everyone, I'm new to this site and to any blog or forum of this kind for that matter but I'm so happy that I've found this community.  So here's my situation. I have been HIV positive since about 1988 but have NEVER EVER been sick or have I ever had any symptoms and I'm still asymptomatic to this day.  I have been consulting with an ID
Specialist for the past 12 years consistently including blood work every 3-4 months etc and all of my levels remain the same sometimes my CD4 count even goes up.  My viral load remained, over all these years at or about 20K - 40K until my most recent blood work showed it at 250K with my CD4 actually increasing to 500.  I have NO IDEA what is going on and why I've never gotten sick. So here's the long and short of my story. My ID doc now recommends Stribild as a precaution but I am totally totally scared of what may or may not happen to my body after i start putting that very toxic substance in it. I am VERY HEALTH, no aches, no pains, no illnesses, I don't even get a cold, my immune system seems to be quite tough against this virus. I just keep thinking that taking this med is gonna make everything go haywire. Am I being totally ignorant/naive? I just feel like if it's not broke then what am I fixing with Stribild? I've had this virus now for over 20 years and have never gotten sick so I'm confused. Am I gonna eventually get sick? Should I take this drug as a precaution and keep my fingers crossed that it doesn't make my life a living hell? Thanks in advance

Offline Jeff G

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Re: should I start meds ?
« Reply #1 on: December 21, 2013, 09:47:44 PM »
Welcome to the forum . I split your question into its own thread so that it can get the attention it deserves .

Its a Saturday night so its a bit slow going right now but Im sure people will respond when they find it . Thanks .
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Offline MikeMax1313

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Re: Stribild
« Reply #2 on: December 22, 2013, 10:15:10 AM »
I'm new to this site and I'm happy I found it as I need some honest feedback. I've been HIV+ since 1989.  I have never had any symptoms (at least none that I'm aware of). Never any swollen glands, any illnesses, any weight loss, any anything in all this time. I am seen regularly by an ID Specialist and my blood is checked routinely. My CD4 count continues to hover around the 500 mark and my viral load until recently stayed between 20K and 40K.  However my last bloodworm showed it spiking up to 250K albeit my CD4 count stayed at 500. Again I am still not experiencing any symptoms of anything. I run about 20 miles per week, I don't drink and I have never smoked or done any drugs/substances. I've been the same weight/height proportion forever etc.  My ID doc now thinks it's best that I commence taking Stribild as a precaution.  I have filled the prescription but have not yet taken any of it as I'm literally SCARED.  Why? Well for starters I have been scouring the net for info on the side effects etc and it all seems so dangerous (liver problems, kidney problems this, that etc). I have ZERO health issues with this virus for the past 20 years.  ALL my organs function impeccably (heart, liver, kidney). I have no problems with my bones or my stomach or anything. i am just so scared that starting this very toxic medicine is gonna screw up my life and make me miserable with crap I wasn't experiencing before. Why do I need to take a pill if I don't have ANY problems from HIV?? Am I being totally ignorant/naive. Am I just gonna wake up one day and be sick beyond belief if I don't start this therapy? Can you guys please give me some nonjudgmental advice? Thanks so much.

Offline Ann

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Re: should I start meds ?
« Reply #3 on: December 22, 2013, 12:01:36 PM »
Mike, welcome to the forums. I merged your other post about starting meds into the one that Jeff started for you. It helps us to help you when you keep questions about the same thing in one thread.

The first thing I'd like to point out is that hiv is FAR more "toxic" than today's meds. The vast majority of people do not have the side-effect problems you're worrying about.

You have been what's called a "long-term slow-progressor". What stops you from being classed as a "long-term non-progressor" is the fact that you've always had a mid-range VL. (Non-progressors usually have a very low, or UD, VL.)

If your VL increase wasn't just a blip (and chances are it's not - it's a huge increase), then it is indeed time you started meds. People can go from feeling fine to being in hospital, fighting for their life, in a very short space of time.

If I were you, I'd get another set of labs done and see what they're like. If your VL is still so high, then your best option would be to start the meds.

Just because you've been feeling good all this time does not mean that there hasn't been damage going on in your body and immune system due in part to the constant inflammatory response that goes on with hiv infection.

You wouldn't be the first LTSP to have their immune system suddenly crash in a very spectacular way. Please don't let this happen to you - you really do need to seriously consider starting the LIFE-SAVING MEDS. The meds are your friends - hiv is NOT your friend.
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Offline darryaz

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Re: should I start meds ?
« Reply #4 on: December 22, 2013, 03:50:50 PM »
My ID doc now recommends Stribild as a precaution but I am totally totally scared of what may or may not happen to my body after i start putting that very toxic substance in it.

By my way of thinking, HIV is the toxic substance, not Stribild.

Offline deibster

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Re: should I start meds ?
« Reply #5 on: December 22, 2013, 04:40:25 PM »
Welcome MM,
1) You qualify for the Long Term Survivor forum, but be warned that the topics in there are heavy. Unlike you, some of us are fighting several symptoms at once.

2) If I was you, I would ask the ID why Stribild? Please give me some literature on other choices. I don't know if it would be recommended for a treatment naive person, but I take two protease inhibitors together once per day (100 mg Norvir, 800 mg Prezista) and they have much less side effects than other protease inhibitors like Kaletra. I'm also on Epzicom, but you need a blood test to see if you can process that. If you can, it has low side effects.

3) Several studies have shown that the healthier you are, when you start anti-retroviral treatment, the longer you will stay healthy AND the longer you will live. I've been Poz for 21 years this month.
I agree with Ann; if your VL doesn't go right back down to 20k - 40k, then you should start treatment right away.
Hugs from Provincetown, Deibster
Poz since Dec 1992. Meds since 1995. Disability since 2005. Constantly fighting the Lipodystrophy 'beer gut.'

Prezista/Norvir, Epzicom, Cytomel, Prevacid, Coumadin, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, Flomax, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil

Offline eric48

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Re: should I start meds ?
« Reply #6 on: December 22, 2013, 04:51:28 PM »

Welcome to the forums. Indeed a fairly nice place to share ideas. No doctors here.

Also congratulations for the long off-meds mileage.

Like you, I had never been sick. My doc did not rush me into meds, but, he had a killer (pro-med) argument: You can always go off-meds, should you change you mind...

This is a luxury that many people on this forum may not have

The first few weeks can be , like, ... rough... then for the vast majority of people it settles down. Bear with it for a few months, then reassess

Or stay off-meds for a few months , then reassess

Which ever suits you

Hope this helps


NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline drewm

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Re: should I start meds ?
« Reply #7 on: December 22, 2013, 05:13:36 PM »
Mike...not much for me to add that others have not already said. Major point though is that the meds are NOT toxic and untreated HIV is deadly. That is reality. What you choose to do about it is between you and your doc but I recommend following a doctors advice, after all, that's why we hire them  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline mitch777

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Re: should I start meds ?
« Reply #8 on: December 22, 2013, 05:25:10 PM »
Hi Mike,

Welcome to the forum!

I, like you was a LTSP and have been Poz since 1982. I was lucky enough to remain pretty stable just in time for the better meds to become available. (I did take some of the earlier meds just because the docs thought it best at the time.) You progressed even slower than me. Yay! But there comes a time when the VL takes a sudden leap and meds are needed. They are NOT poison.

The stories you read in the LTS section might be a bit scary but many were not as fortunate as you. Some of the old meds did permanent damage. Today's meds are leaps and bounds ahead with many/most of the kinks worked out.

I agree with Ann completely.

Taking the meds for the first time is almost always a period of adjustment. Usually more in the mind than the body. You will get used to the idea in short order and see your VL become undetectable.

This forum is full of people with smarts and big hearts. I'm happy you found us and hope to hear more from you!

33 years hiv+ with a curtsy.

Offline MikeMax1313

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Re: should I start meds ?
« Reply #9 on: December 22, 2013, 10:41:29 PM »
Thanks everyone, your collective feedback have been invaluable.  I'm so happy to have found this forum to get feedback from actual folks like myself. Truly I'm very glad to have found this community.
I will start taking Stribild tomorrow (Monday Dec 23rd). I'm still nervous as heck about what is gonna happen with the side effects (if any) but I also believe that the benefits will far outweigh the side effects.  I will take it in the evening maybe about 8pm or so with a meal.  STANDBY, I'll provide an update on how I feel in the hours or days after I start taking it.

Thanks everyone.

Offline sfpvguy41

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Re: should I start meds ?
« Reply #10 on: December 23, 2013, 02:23:27 AM »
Good luck. I hope it will turn out to be a great Christmas present for your body, and that after a bit you'll feel more energy, less worry and certainly be undetectable.

Let us know how it goes!! :D
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline mecch

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Re: should I start meds ?
« Reply #11 on: December 23, 2013, 02:50:52 AM »
"What isn't broke, don't fix" has been misapplied.  Your immune system was permanently damaged when you got HIV. You could see it as a chair with split wood, that never the less remained a steady solid chair for years.  Until know. Now its wobbly.  Fix it now before it collapses.
Also HAART is not toxic.
Also while some people have a rough go at HAART treatment side effects, many many many do not. So please abandon this terrible mind image you have of a group of people on toxic chemicals suffering horribly.  Its not helping you any, and its not very fair to us.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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Re: should I start meds ?
« Reply #12 on: December 23, 2013, 05:27:49 PM »
I will start taking Stribild tomorrow (Monday Dec 23rd).

Smart move.

Enjoy the Holidays

NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly


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