Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
August 21, 2014, 07:05:34 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 635522
  • Total Topics: 48211
  • Online Today: 271
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 5
Guests: 174
Total: 179

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Meds around the corner...too soon.  (Read 4107 times)

0 Members and 1 Guest are viewing this topic.

Offline WillyWump

  • Member
  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Meds around the corner...too soon.
« on: August 13, 2008, 06:27:24 PM »
*sigh*

Well I received my 3rd set of results today, CD4-468 VL- 86700 (19%), Doc says it was a pretty big change from the previous results and If these numbers hold over the next 2 months she recommends I start meds.

I'm kind of bummed because It seems like I progressed from diagnosis to meds really quick (8-9 months)... I had hoped to go a couple years without meds :(

She did say it could be a blip, but I'm sure it's not.

IF I do have to go on meds within 2 months,  is my fast progression a sign that the meds may only hold an AIDS diagnosis off for a short time also?

-Will

POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline pozguy75

  • Member
  • Posts: 1,239
    • POZitively Speaking
Re: Meds around the corner...too soon.
« Reply #1 on: August 13, 2008, 06:38:06 PM »
Hey Will,

I can tell you from experience, that just because meds may be in the immediate future, an AIDS diagnosis may not be.

I would seriously listen to your doc, cause well, we all have blips now and again, and you need to establish a baseline. I mean looking at your previous numbers, I would wait for at least one more set of bloods before I jumped on the meds bandwagon.

That said, meds aren't as bad as you may think. I think for me, anyway, when I first went on meds, I was afraid of all the side effects...but I was able to put my fears aside when I realized that I was tolerating them better than I had thought.

Work with your doctor, and trust your own instincts, cause that will carry you through all of this!

Be well!
Jeromy
Dx 2005
ATRIPLA

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: Meds around the corner...too soon.
« Reply #2 on: August 13, 2008, 06:48:11 PM »
Hello .. a few things ..

You have to get over the whole "10 years til meds" thing, it's not true for everyone, a fair proportion will benefit from meds within 3-5 years and a smaller proportion within 1-2.

On the viral load, results can vary by a factor of 3. This is the margin of error for viral load tests. A viral load of 9,000 on paper means a real viral load of 3,000-27,000. On this basis, the 80k result means nowt. Your viral load could be level.

You are miles from an AIDS diagnosis.

Plus, what Jeromy said.

- matt
"The object is to be a well patient, not a good patient"

Offline bocker3

  • Member
  • Posts: 3,370
  • You gotta enjoy life......
Re: Meds around the corner...too soon.
« Reply #3 on: August 13, 2008, 09:52:54 PM »
Will,

Try not to sweat it -- what will be, will be.

I was diagnosed 8/24/05 and swallowed my first pills on 12/14/05, oh yeah, and had a negative HIV test in April of 2001 (with the life insurance policy to prove it   :) ).  I have been doing amazingly well all this time.  While I do fully understand your disappointment, as I was also expecting a number of years med free, you have to deal with the hand your dealt.  So far, I'm playing the game fine and I bet you will too.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,904
Re: Meds around the corner...too soon.
« Reply #4 on: August 13, 2008, 10:01:12 PM »
Will, don't worry about it too much; it'll be fine.  The alternative is much worse.

Btw, I was diagnosed 02/13/89 and started meds in December of '89.  Believe me, the meds are much better today darling.
Good luck. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline WillyWump

  • Member
  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Re: Meds around the corner...too soon.
« Reply #5 on: August 14, 2008, 07:21:57 PM »
Thanks for the words. I feel better after reading your responses.

Wow Betty and Bocker (love your numbers Bocker), yall went on meds very fast... so good to hear yall are feeling good after all this time, it's very reassuring. Newt, Thanks for the info on the margin of error on VL, maybe thats why my doc said it may be a "blip"

I'll try not to freak out until I get more results as I realize now this HIV ride can be a roller coaster. However something I'm curious about is this...is there a certain percentage of  people where none of the meds work for them (med naive people)? I cannot seem to find any info on that. I just want to know every possible outcome of what I'm faced with....? I hate to sound like a worry wart, but is it possible none of the drugs will work for me?

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline newt

  • Member
  • Posts: 3,878
  • the one and original newt
Re: Meds around the corner...too soon.
« Reply #6 on: August 14, 2008, 07:43:41 PM »
Quote
s it possible none of the drugs will work for me?

Meteorites may fall on your garden and kill you dog, that's possible eh?

It is most unlikely that no combination at all will be effective ie reduce your viral load to less than 50 copies long term and allow your immune system to recover.

I personally in your position would be fretting more about savings and loans stuff. Your CD4 count is, for a start, still within "normal" range. Like, er, normal.  :)

- matt
"The object is to be a well patient, not a good patient"

Offline Movingon

  • Member
  • Posts: 52
Re: Meds around the corner...too soon.
« Reply #7 on: August 15, 2008, 12:05:23 AM »
Will - i was diagnosed in August 07 and started meds in November 07. I too was very pissed off with this, as i also thought i could plod along for 10 years without meds

My numbers were worse than yours

I was also shitting my pants about starting meds, but it was all a massive anti climax. I had zero side effects and haven't missed a single dose. For me its all in the brain, now i feel better that i am tackling this virus head on, and the pills just feel like vitamins

good luck, you will be fine

MO


Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Meds around the corner...too soon.
« Reply #8 on: August 16, 2008, 10:56:04 AM »
Hi Will!
I was diagnosed in October/2005 with a cd4 count of 609 and a VL of 15.000 copies. After the third set of labs I decided and insisted to start treatment with a CD4 count of 503 = 25% and 82.000 copies VL in August 2006.
I needed meds to give me peace of mind, and since then I have felt the confidence of knowing the situation was under control. Many people in these forums could see my process and know myy reasons to make that decision.
Taking an HIV regime is very easy in most of the cases and side effects almost non existant.
On the other hand, some naive patients have resistances that can make things a bit more difficult. That is the case of my friend Felix, who had never been treated but was infected by someone that had taken almost all meds available.
After a year of frustration trying different regimes he decided to get a second opinion at another HIV specialist (different hospital) and a simple an efective regime has been found for him.
In the unlucky case you have a resistant strain of the HIV virus it is important to have a good HIV specialist to avoid the anxiety that Felix suffered for an entire year. His situation was also complicated because he started treatment with a total cd4 count of 19 cells. Drs told him further on that on his first visit to the clinic his cd4 count was only 4 and they decided to repeat the tests with out telling him anything because they could not believe those counts corresponded to such a healthy looking person. He has never had an OI or been sick and he has always been working 100%.
My virus is so ordinary that anybody would be able to treat is succesfuly.
It should not be a drama to start meds and it can only change your life for better.
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 next2u

  • Member
  • Posts: 1,761
Re: Meds around the corner...too soon.
« Reply #9 on: August 16, 2008, 04:52:52 PM »
hello will,

how you doing buddy? meds around the corner? that shit sucks. the good stuff- you could live a lot longer with meds. you may not have side effects and if you do they could be minimal. you won't have to worry about the virus cause the meds can check them. anyhow, those are the perks that are running through my head.

my tcells are similar to yours. my doc & i have decided ill start meds when my tcells are 500 or less. im happy with this and am working on making peace with my fear of explosive shits during a business meeting. anyhow, we have options and it is good to have options. let us know how things progress for you my friend.

best,
d
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline bufguy

  • Member
  • Posts: 161
Re: Meds around the corner...too soon.
« Reply #10 on: August 16, 2008, 06:09:07 PM »
Hey there,
Be confident. I was diagnosed poz May 29, 2008, and on meds 3 weeks later with pretty good numbers Vl 47500, CD4 511/29%. I have an agressive HIV Doc who thought that since I'm healthy and motivated I should start right away. Only 1 pill at night (Atripla). Some unpleasant side effeects for the first week or so, but by August 1, 2008, Vl 130, CD4/31%.
I would feel more anxiety waiting for my numbers to fall every 3 months. I'm controlling the virus, the virus isn't controlling me. Good Luck
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline J.R.E.

  • Member
  • Posts: 7,114
  • Joined Dec-2003 Living positive, since 1985.
Re: Meds around the corner...too soon.
« Reply #11 on: August 16, 2008, 10:19:06 PM »

You are miles from an AIDS diagnosis.

 matt



Just repeating what Matt has said. As I understand it, your next blood tests are in 8 weeks ? Hang in there, try not to let things get you down.


Take care of yourself----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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline WillyWump

  • Member
  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Re: Meds around the corner...too soon.
« Reply #12 on: August 19, 2008, 06:12:12 PM »
Thanks all, such great info from all of you.

Yes my next blood tests are in 8 weeks, but ive been feeling bad for about a month, even prior to getting the last results. I have pain in my flank and it feels like my liver is swollen(or something down there is swollen). The doc said my liver enzymes were at 61 which was elevated. it hurts to lay on my sides at night. Been real fatigued. She wasnt concerned about the liver enzymes, just my percentage drop in my numbers.

After thinking on this day and night, I think I want to go ahead and start meds right now...not in 2 months but RIGHT NOW. After hearing some of your replies I researched the pros and cons of starting meds when cd4 is above 450. I think I want to roll the dice and start now.  It's just so hard to go to bed at night thinking my immune system is being damaged, especially since I have been feeling so shitty. I feel like each day I wait is another day of damage.

With that being said, I think I will call my doctor and tell her my thoughts.

But I have a stupid question....How hard is it to just "start" the meds without reaching the CDC guideline threshold? If I tell her I want to start now would a doctor typically say OK, or would she say no I need to wait.

It's my choice isnt it?

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline bocker3

  • Member
  • Posts: 3,370
  • You gotta enjoy life......
Re: Meds around the corner...too soon.
« Reply #13 on: August 19, 2008, 09:24:53 PM »
It is certainly your choice.  While I am a firm believer that you need to be in partnership with your doctor (she is the one with the education and experience), you are, ultimately, the one making the decision.  If you explain to her why you wish to start, I would think she would go along.  If she seems reluctant, just calmly ask her to explain her reluctance to you.  Get into a dialogue and hopefully she will come around.
When I started, my doc didn't want me to use Sustiva/Truvada (no Atripla at that time), but suggested Kaletra/Combivir.  I told him that I simply did not want to take AZT -- I told him I had no logical reason, just didn't want it due to the history and I said that I would prefer to leave Kaletra out due to my cholesterol issues and family cardiac history.  Furthermore, I told him that I'd like to bypass the whole PI class to start.  We discussed a little more and then he wrote out the scripts for my choice -- Sustiva/Truvada.
Unfortunately, I had to add a PI 7 months later because we found I had some resistance to the Truvada and didn't feel comfortable leaving Sustiva that vulnerable (actually I found it, the lab said things were fine) -- so I added boosted Reyataz which is easier on the heart.

There you have it -- talk openly and all should go well.  If not, one could consider finding a doctor that believes in developing a partnership with their patients.


For what it's worth -- after I started with my meds, just knowing that I was doing something against the virus almost instantly made me feel better physically -- far faster than I think the meds could have actually done anything.

Good Luck -- let us know how it turns out.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline ArisGreekSquared

  • Member
  • Posts: 46
Re: Meds around the corner...too soon.
« Reply #14 on: August 20, 2008, 01:25:19 PM »
Hi Willy!

It is your choice, but it really hasn't been proven from what I have read if it's better to start earlier than later. I would certainly thing the earlier you start the less your immune system would be compromised. 

I know how you feel man.  I was diagnosed at 14 years old and only recently had to go on meds (a little over 2 weeks ago) and I'm 27 now.  I thought I was indestructible and would never have to go on them.  Overall, I'm comfortable with being HIV+ because it never stopped me from achieving my goals and I've had a smooth ride so far without any bumps.  I know it's rare for that to occur, but when I got my recent labs I started to sweat and panic a bit. I actually had him do a redraw because I thought it had to have been a lab error. Sure enough the numbers were only marginally different on the second pull.  It sucks, man...I know.  But in the long run the meds will help you but I'd wait the next couple of months and see where you are.

I wouldn't worry about it for now, though.  I was really stressing about starting it and you know what I don't feel any different than when I wasn't on them.  It's like I'm taking a multivitamin.  It bothered me (the fact that I had to start meds) for about 3 days after I started and I just accepted the fact after that.  I can't dwell on what I can't change. That's how I've always been raised and it's a good way to go about things.  Fortunately, I have had no side effects but then again I've never received side effects from any form of drug I've taken except for a Sulfa drug which I got a mild rash.  *shrugs*

We're here for you!

-A


Offline WillyWump

  • Member
  • Posts: 7,137
  • your ramblings bore Yamaguchi Kitteh
Re: Meds around the corner...too soon.
« Reply #15 on: October 11, 2008, 03:53:21 PM »
Lessons of the BLIP just learned....

Last results came in and CD4-590, VL- 57000, 18%

Doc says last results were a blip, or my body trying to acclimate to the virus. Cd4's increased to highest ever for me, amd Vl decreased, so no meds yet for me. Percentage decreased by 1%, but she wants another test before she makes a decision about that. so all in all, I was worried maybe for nothing. But ive only been pos for about a year so I'm still in the learnign curve. :)

Thanks for all the great support guys, luv yall!

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Meds around the corner...too soon.
« Reply #16 on: October 11, 2008, 04:40:23 PM »
Fun is it not?  ;D

Willy, don't rush into anything.  After awhile you will find that all the decisions and recomendations are completely up to you..   I had 3 months of learning about hiv/aids and then off I went to the meds world.   I went down to 278 cd4 and have slowly come back and I did not feel sick nor get sick even at that low number.   You got some breathing room my friend....

Hugs,

Eric

Offline Buckmark

  • Member
  • Posts: 1,520
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: Meds around the corner...too soon.
« Reply #17 on: October 12, 2008, 11:35:18 AM »
Willy,

I"m happy this turned out to be a blip.  The path with HIV is neither proscribed, nor linear.  That's why it is even more important to stay  aware of and involved with your health, get regular tests, and work with your doctor.

Cheers,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: Meds around the corner...too soon.
« Reply #18 on: October 12, 2008, 12:38:23 PM »


  Willy,

   I was diagnosed in September of 2005.  Like you, I was also hopeful that I wouldn't have to go on meds for at least 5 years.  I knew it was inevitable, but it freaked me out big time.  Don't remember exactly but I think it was 8-12 months later I had to start meds because my numbers were declining rapidly.  I actually kept putting it off and my numbers dropped to a point where my doctor no longer gave me the choice of waiting.

   I ended up worrying myself for nothing and  I prolonged the start of meds to the point where my numbers got to the point that I received an AIDS diagnosis, which freaked me out then, but I now just look  at as just a label.

   The fear and of course the disappointment of it all seems to be part of the game, of course a game none of us want to play but are kind of forced to if you know what I mean.  I can tell you not to sweat it, but I know you are.  You will see though that it will become a small part of your life and as time goes on you can worry about other more important things like gas prices and the economy.
I despise the song Love is in the Air, you should too.

Offline Graywolf

  • Member
  • Posts: 47
Re: Meds around the corner...too soon.
« Reply #19 on: October 12, 2008, 02:27:26 PM »
I was diagnosed in July 1985 and didn['t have a doctor until 1990, was trying to kill myself drinking between 85 and 89, then for sober in 89 and a bout of shingles in 90 found me in the hospital, my first real labs in Aug 90 came back T4 = 850 and T4/T8 = 1.7 there was no viral load test then

Around 1992 my T4 dropped into the 300s and doctor started me only 100mg azt twice a day and within weeks hte pain in my legs was unbearable and quickly became anemic (I was one of the unlucky ones who can't tolerate azt at any dose) He took me off azt and tried restarting it 3 months later and almost instant;y killed me so I got into a Chinese herbal study that kept my T's in the 500's with V/l ~1000.

IN 1998 my T's plummeted to 208 and V/l shot up to 78,000 so was started on Crixivan, Epivir and Zerit, had to got off meds due to excruciating pain in megs and feet but T's were in 900's. Restarted cocktail 4 months later and had moderate neuropathy but staye d on cocktail for 6.5 years, had severe lipoatrpohy in ass, extremities and face, switched me to Viread which made my kidneys shut downm was peing blood, switched me to Abacavir and had hypersensitiivity reaction but my T's had reamined 900-1100 so took me off meds and a month later wound up in hospital for a week running 105 fever, literally thought i was dieing and so did medical staff who were puzzled, all tests for infections came back negative but T's dropped to low 300's and V/l went stratospheric. Docs were puzzled and came up with a theory aftrer talking with immunologist that I was experiencing immune reconstitution like I had sero converted all over again, a month later my T4's off meds were 525 and v/l = 500, since then off all meds latest T4 is 585 and v/l <75. M y doctor writes it off as voodoo but I have been on K-pax for 3 years and began taking 5-8 grams of L-GLutamine some months ago

Some people, about half I talk to have little problem tolerating cocktail meds, everyone's, everyone's milaeage varies.

The big problem io face now is non hiv realted due to disk problems they never addressed now have SERVERE muscle wasting and pain in feet and legs, and since MRI of spine shows nothing that jumps out, they're kicking me to the curb writing it off as HIV myelopathy without reccommending a back x-ray which can show things an MRI won't

When you have a hammer, everything looks like a nail, when you have HIV everything looks like HIV to medical people.
"If we don't learn to live as brothers, we will perish as fools" - Dr martin Luther King Jr

Offline mecch

  • Member
  • Posts: 11,436
  • red pill? or blue pill?
Re: Meds around the corner...too soon.
« Reply #20 on: October 12, 2008, 06:42:46 PM »
Willy,

As you know, everyone has a different experience of HIV progression.  Fast or slow to meds, etc.  Now you get the time to continue to adjust to being hiv+, and now you get the time to not have meds. So there are advantages.  However, when and if the time comes for you to take meds, they will give you advantages as well.  For instance - in all likelihood - undetectable viral loads and high CD4s.  You won't be transmissable, if that weight wears on you now (or on a potential partner's fears).

The grass is always greener.  But your grass is very green. I went from HIV- to HIV+ to meds in three short months. Its all a shock -- so its important to always keep the advantages of your current situation in mind.

Best to you. I'm hopeful everything will continue well for you.

« Last Edit: October 12, 2008, 06:44:26 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

  • Member
  • Posts: 1,208
  • No longer an active member
    • My personal site
Re: Meds around the corner...too soon.
« Reply #21 on: October 14, 2008, 10:30:16 PM »
Hi,

Last results came in and CD4-590, VL- 57000, 18%

Doc says last results were a blip, or my body trying to acclimate to the virus. Cd4's increased to highest ever for me, amd Vl decreased, so no meds yet for me. Percentage decreased by 1%, but she wants another test before she makes a decision about that. so all in all, I was worried maybe for nothing. But ive only been pos for about a year so I'm still in the learnign curve. :)

Watch that CD4 percentage. If the % goes below 14, then the CDC defines that as having AIDS. Ask your doc what she thinks of that. I'm sure she is watching it for you. Just don't be be too surprised if she wants you to go on meds soon if your CD4 percentage keeps going down.

As others have said, everybody's progression rate is different. Some people can go 25 years without meds - I know one in my support group who just started meds after that long. Others can go as low as 6 months - my bf tested HIV- in may 2006, HIV+ in november 2006, and his first CD4 % was 13%. He went on meds pretty quickly. He is doing fine now.

Offline madbrain

  • Member
  • Posts: 1,208
  • No longer an active member
    • My personal site
Re: Meds around the corner...too soon.
« Reply #22 on: October 14, 2008, 10:36:04 PM »
Hi,


But I have a stupid question....How hard is it to just "start" the meds without reaching the CDC guideline threshold? If I tell her I want to start now would a doctor typically say OK, or would she say no I need to wait.

It's my choice isnt it?

-Will

It's absolutely your choice. Your doc should be willing to start you on meds anytime you want even if you don't meet the guidelines yet. With your symptoms and your lab numbers, it's probably not a bad idea to start. Hopefully your symptoms will be improved and the side effects from meds, if any, will be less bothersome. Just make sure that you are ready for the commitment of taking your meds every day before you start them.

Offline mecch

  • Member
  • Posts: 11,436
  • red pill? or blue pill?
Re: Meds around the corner...too soon.
« Reply #23 on: October 15, 2008, 06:51:38 AM »
But I have a stupid question....How hard is it to just "start" the meds without reaching the CDC guideline threshold? If I tell her I want to start now would a doctor typically say OK, or would she say no I need to wait.
It's my choice isnt it?
-Will

It is NOT a stupid question - Ask your doctor this question, specifically, and she/he should provide a clear answer based on your particular insurance situation. Treatment access and treatment costs are making you anxious and you have a right to clear answers.

Best regards!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline bGeek107

  • Member
  • Posts: 15
  • Warm sensitive intellligent gay man
Pain & Side Effects
« Reply #24 on: October 15, 2008, 08:03:56 PM »
I got infected 1980 and tested positive 1986 and AIDS in 1996. I have had nothing but pain and problems with most of the HIV drugs starting with AZT in 1986. AZT knocked me down and I stopped it. I didn't take any drugs until 1994 and of course none of them worked. It wasn't until Cocktail drugs in 2001 that finally knocked HIV down.

The right thing to have done would have been to try other drugs regularly when they came out. There is always going be some problems with HIV drugs so it just a matter of keep trying and surviving.

I am doing better now than I ever have. I have steady T-cells in the 400s and a viral load that has been as high as 20000 and then down to undetectable and is now at 200. Over at least five different drug combinations.

I am currently taking one Truvada in the morning and two Kaletra at night. And I take weekends off. Why because of neuropathy and nerve damage from fifteen or so drug combination over about fifteen years. Pain one thing that constantly makes us aware of our condition. The less pain the better.

Bumps and changes of our numbers happen for all of kinds of reasons. Eating right, walking, resting and trying not to get depressed helps keep the numbers steady. That is all we can do for now.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Meds around the corner...too soon.
« Reply #25 on: October 15, 2008, 08:31:47 PM »
I am doing better now than I ever have. I have steady T-cells in the 400s and a viral load that has been as high as 20000 and then down to undetectable and is now at 200. Over at least five different drug combinations.

I am currently taking one Truvada in the morning and two Kaletra at night. And I take weekends off. Why because of neuropathy and nerve damage from fifteen or so drug combination over about fifteen years. Pain one thing that constantly makes us aware of our condition. The less pain the better.

Not taking your meds at the weekend is the likely cause of you no longer being undetectable. You're dicing with resistance. If you think not enduring a bit of pain is a fair trade-off to blowing through your treatment options, then fair dues to you. I think you'll find a death due to aids entales a lot more unbearable pain compared to PN. Just sayin'...

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.