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Author Topic: to start or not  (Read 2790 times)

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Offline bmancanfly

  • Member
  • Posts: 592
  • Medicare For All !
to start or not
« on: November 18, 2006, 02:20:44 PM »
hi,
I have been POZ for about 4-5 years have always had a relatively low CD4 and viral load - but both fairly stable.  CD4; 360-460 no trend either way, VL; 8-15k.  Lately I been feeling very tired, but otherwise no HIV events or illnesses.  All blood work doesn't indicate anthing wrong  (i.e. no anemia, no Hep, etc.)  Free testosterone was low so now I'm on androgel.  Still very tired.  My question is should I start meds even though I don't "need" them based on HHS guidelines.  Have any of you, who might have been suffering from fatigue, seen a noticeable difference after staring meds?  Any input would be appreciated.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: to start or not
« Reply #1 on: November 18, 2006, 04:53:31 PM »
I am known for having, in retrospect only, wisely waited until my CD4's hit 250 or so before starting meds.  My simple logic is that there was no point in taking any or more medications than I actually needed... and by waiting I started directly on the cocktail bypassing monotherapy.   So that's my comment on the first part.  The second part, the fatigue, could have any number of causes, from stress over what to do and when, to diet to aging to depression to lack of exercise.  In short, taking or not taking meds is really not going to affect your energy level if nothing seems (via labwork) to be changing with your viral load or cells.  I would try to figure out when the fatigue started and then what was going on and perhaps is still going on which might give you a lead on this.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: to start or not
« Reply #2 on: November 18, 2006, 04:57:49 PM »
I started 3 months ago with a count of 503 cd4 =25%. So you know what I think...
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Eldon

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Re: to start or not
« Reply #3 on: November 18, 2006, 05:32:11 PM »
Hello Bmancanfly,

It is unfortunate that you have tested HIV positive. However, you are aware of your CD4 Levels and your Viral Load. When it comes to the decision of starting anti-virals it is your "choice". As Poet has said, your fatigue may be a direct cause of your stress and/or anxiety levels.

One thing you will want to do is to keep an eye on your Viral Load as it is fluctuating. The purpose of the anti-virals are to suppress the HIV virus in your system. As indicated you have mainted your CD4 Levels which is good. Again, it is your "choice" as to when you will want to start meds. In the cases of others, there was no "choice" in the matter.

I wish to extend to you a warm WELCOME here at the forums. Here you will find the encouragement, communication, understanding, support, some cries, some laughter, and many of your questions relating to HIV/AIDS answered.


We have a great group of Real People who will listen as well as answer you. We are here to encourage one another and to learn from each other. Implementing a Positive Mental Attitude will also assist you on your journey in this life.

Talking to other people helps us see that we are not the only ones with problems. Feel free to come and vent with whatever is on your mind from time-to-time as it is highly therapeutic.

In the interim, you may want to start taking a multi-vitamin, Omega 3 and eat a diet high in fruits, vegetables, whole grains, lean protein, and low-fat dairy and avoid processed foods, saturated and trans fats. This will also help you maintain a healthy weight.

Exercise at least three times per week for a minimum of 30 minutes.

Make the BEST of each and every Day!

Offline bmancanfly

  • Member
  • Posts: 592
  • Medicare For All !
Re: to start or not
« Reply #4 on: November 18, 2006, 06:38:15 PM »
thanks so much for the warm welcome
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Blixer

  • Member
  • Posts: 712
Re: to start or not
« Reply #5 on: November 18, 2006, 08:25:24 PM »
I started 3 months after finding out I was Poz.  I'm with Blondbeauty on this one.  My CD4 count was 540 when I started but VL was 67,000.  I know I could have waited but my reasoning was that the meds available today are much improved over those in the past and I wanted to get help to my system before there was any significant damage.  Only time will tell if that was the most rational decision.  But for me, I tend to operate on the conservative side when it comes to my health.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline bmancanfly

  • Member
  • Posts: 592
  • Medicare For All !
Re: to start or not
« Reply #6 on: November 18, 2006, 08:46:20 PM »
Blixer, and Blonde, since you really didn't "need" to start,  did you feel any different after starting?  I guess what I'm trying to decide is whether fatigue is enough of a reason to start and if starting will help alleviate the fatigue.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Blixer

  • Member
  • Posts: 712
Re: to start or not
« Reply #7 on: November 18, 2006, 08:56:26 PM »
bmancanfly,
I didn't wait until I was having significant problems.  My main issue was swollen lymph nodes and between my diagnosis and starting meds I did start to have a few night sweats.  I have no idea if that was from the meds or not and they weren't bad.  I didn't experience fatigue so I can't say if the meds helped that.  But I can say that my lymph nodes returned to normal size within a couple of months of starting meds.  Has your doctor given you any advice on this?  In my situation its possible that I caught my infection at the height of the effects of seroconversion and that things would have calmed down.  But even so, I don't regret starting when I did.  But again, only time will tell if it was the best decision.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline bmancanfly

  • Member
  • Posts: 592
  • Medicare For All !
Re: to start or not
« Reply #8 on: November 18, 2006, 09:17:33 PM »
my doc has been pushing drugs for the last 4 years.  but I've had stable numbers and been feeling fine until recently.  hate to start to soon and run out of options
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline richie

  • Member
  • Posts: 69
Re: to start or not
« Reply #9 on: November 18, 2006, 09:27:01 PM »
Bman --

Chances of running out of options when starting today are pretty slim.  Not only is the armory pretty full, but so is the pipeline of new options.  Chances are 99% that you will live a normal lifespan (unless hit by a bus), and you will be able to take advantage of future options not yet on the table.  So starting now is indeed an option.  So is not starting.  The CDC guidelines are a pretty good way to view the threshold, as at least they are based on studies and a consolidated view from many many doctors.  The question of 200 or 350 cells has been studied and answered.  But in your case, you seem healthy, low VL, high CD4, etc.  Watchful waiting for trend changes might be the best.  There are good arguments for delay -- namely the side effects of the drugs, and the responsibility involved in compliance.  There are good arguments for agressive treatment as well.  In the end, it's your call, and no one can tell you definitely which is best.  It's a question of your worldview and how you would feel best in dealing with HIV.

Offline J.R.E.

  • Member
  • Posts: 7,218
  • Joined Dec-2003 Living positive, since 1985.
Re: to start or not
« Reply #10 on: November 19, 2006, 06:15:42 PM »
hi,
  Have any of you, who might have been suffering from fatigue, seen a noticeable difference after staring meds?  Any input would be appreciated.


Hello Bman,

Fatigue was a very big issue for me, prior to starting on meds. I started on meds in October of 2003, with  a viral load over 500,000 and t-cells at 16. The issue of fatigue probably started around late 2001. I had no idea what my blood counts were at that point. Fatigue led to loss of appetite. Loss of appetite led to weight loss, weight loss, and high virol load, led to esophageal thrush, and that led to bacterial pneumonia. Pneumonia led to the starting of meds and anti-biotics. This is what you want to prevent from happenning !!

The main thing is, to keep yourself monitored with the necessary bloodtest. This is where I made my mistake. I started blaming fatigue, on everything else, except for what was really going on within my body. Don't allow yourself to fall into that trap. it is dangerous, and easy to do.


After stating on meds, my energy levels went up considerably, my appetite improved 100%, 30 pounds of weight came back on, and the issues of fatigue diminished significantly !!! Went from sleeping 15 hour days back to 8 hour days again. ( and during all this time, I continued to work somehow !!

I still have some issues with fatigue, but those issues are tolerable for me right now, and it's not a constant thing.



Take care------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: to start or not
« Reply #11 on: November 19, 2006, 06:28:45 PM »
Curious as to your % value?  I was advised that the 350-450 mark is a "reasonable" time to get started.   Oopsie, I missed that mark..  I was given five months of shore leave to prepare mentally for the meds life..   It's allot easier to get them back, get them switched back on when you are at a higher mark.   Keep a close eye on your monitoring all three values i.e. every 3 or 4 months I would think...   Lastely,   prepare for this eventuality, you WILL have to cross this bridge, just prepare for it...

Now playing "Chiti-Chiti-med-med"

Offline bmancanfly

  • Member
  • Posts: 592
  • Medicare For All !
Re: to start or not
« Reply #12 on: November 19, 2006, 10:45:50 PM »
Thanks all for your input. It helps to get feedback from others in similar situations.  One of the thiings that my doc told me (if I understood him correctly) was that an initial combo would last about three years.  Thats what made me worry about running out of med options.  That doesn't seem very long at all.  The hard part has been that I have always been very very physically active - sometimes working out for 1 - 2 hours a day.  Now, sometimes, any kind of physical exertion makes me exhausted.  It makes it very hard to make a living.  And my quality of life has completely changed.  If I had been a sedentary person I guess it wouldn't be so hard.
I looked at my #'s again and my CD4% is 27%.  I think thats pretty high.  However those numbers were from September.  I guess the best thing to do is to keep watching and waiting.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline ndrew

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  • Posts: 695
  • ....-.-.-.-.-.....
Re: to start or not
« Reply #13 on: November 19, 2006, 10:55:15 PM »
Three years, what's that about?  Gosh, I hope thats not the case...

Has the fatigue come about slowly?

I do feel tired, but I push myself with work and lifting.  Please keep us informed OK?

Drew
Who just started the pink "123" pill (Atripla) and seems to be doin OK...

Offline Mike89406

  • Member
  • Posts: 206
Re: to start or not
« Reply #14 on: November 20, 2006, 02:20:06 AM »
I just want to say that My numbers looked like you're counts 350-480 CD4 for 4 yrs my VL did fluctuate up to 35000 at one point but my Lymphocyte % was always between 28-38% . Every since I was diagnosed positive I havent had numbers over 480 so this low number label Im not so sure about anymore because I never knew what my true numbers would have been like before I was Poz. But sometimes people even doctors think you should be on meds when youre numbers are below 500 ???

I was told by my specialist that some people have lower numbers than some meaning CD4 counts when theyre healthy and negative, basically not everyone has 1500 or 1100 t cells for example. But regardless of my range of t cells I hardly ever get sick (ie.. cold, flu etc..) for some reason so my immune system feels just the same as when I wasn't Poz even before starting meds.

I do notice after 2 mos on meds my Lymph nodes shrank which they were always big before meds, and I do feel healthier but my energy level has increased because I exercise and somewhat eat healthy. Meds won make you feel more energy in my opinion.


Offline poet

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  • Posts: 934
  • Poet living and working in Central Maine
Re: to start or not
« Reply #15 on: November 20, 2006, 05:30:58 AM »
I would check with your doctor to clarify what he said so you don't add to your stress level.  I have been on the same, now deemed rather strange, combo. for going on 10 years I suspect.  As long as you decide to take your meds and don't miss a dose, allowing hiv to work around them, if the combination is working, there is no reason for it to stop working.  That said, we had to try for the first combination twice.  I was alergic, it turned out, to one of the three and we stupidly started all three at the same time so the only way to figure out which was the bad one was to stop all three and then start them one at a time until the reaction occured again... or see that the first two were fine and so know that it was the third.  The other half of Combivir was also deemed of no use to me. 

I do suspect the stress of all of this has much to do with your energy level.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

 


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