Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
November 29, 2014, 01:31:46 AM

Login with username, password and session length


Members
  • Total Members: 24078
  • Latest: Rlhayn
Stats
  • Total Posts: 647777
  • Total Topics: 49368
  • Online Today: 167
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 126
Total: 129

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: Just Curious...how many of us have to deal with KS as well?  (Read 2178 times)

0 Members and 1 Guest are viewing this topic.

Offline trai

  • Member
  • Posts: 70
Since KS is so s'posed to be so much rarer these days, how many of us have had KS come up after HIV?
12/2003  Tested Neg
02/2003  Tested Neg
08/04/2004   Tested Poz
08/05/2004   514     51536       
08/23/2004   516       81600    
01/07/2005   449       27500    
07/01/2005   308       35600    
07/21/2005   527       8140    
09/15/2005   512       3950    
12/02/2005   434       0    
03/15/2006   309       0 
10/   /2006    356      0  
01/08/2007   311       7899    
05/10/2007   345       9133    KS Diagnosis Started Meds for First time.
07/05/2007   692       793
10/   /2007    626       0
01    /2008    ???        0
07/08/2008   6something  0
08/   /2008  Stopped meds

06/2010   ???      0

Offline Robert

  • Member
  • Posts: 2,649
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #1 on: May 25, 2009, 11:16:46 AM »

hi trai.

it's nice to hear from you.  I saw a post from you the other day and it really surprises me that you have KS.  last I knew, you were still working for the airlines and loving it. I am so sorry to hear about this KS thing.  I don't know anything about it but it breaks my heart to think you're not working because of it.  I truly wish the best for you.

What about your dog?  How is the old guy doing?

And is that a silk garter you got on?  What about the picture of you in the shower?  That's my favorite.

Please take care.

robert
..........

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #2 on: May 25, 2009, 11:54:38 AM »
The article linked below from thebody.com gives a good overview. I've read that in many cases, KS clears up after beginning HAART so hopefully that's what will happen in your case (it can sometimes take a while). At least it is not likely to progress.

LINK:

http://www.thebody.com/content/art6061.html
« Last Edit: May 25, 2009, 11:59:42 AM by Inchlingblue »

Offline Grasshopper

  • Member
  • Posts: 454
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #3 on: May 25, 2009, 02:09:51 PM »
I used to have KS in the past. Recently I noticed a single suspicious spot, the dermatologist also suspected KS. I asked him to cut the whole thing out and sent it to the pathologist. It was indeed KS. My ID doc and dermatologist said having read about KS reoccurring, but never seen it themselves.
Restarted HAART in 2001, have great numbers with cd4's around 1100 and undetect well over 7 years. I hope this was just a stray one, and not the first of many to come.
« Last Edit: May 25, 2009, 02:12:04 PM by Grasshopper »

Offline mecch

  • Member
  • Posts: 12,082
  • red pill? or blue pill?
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #4 on: May 25, 2009, 03:04:01 PM »
Hmm. Alarming stuff. I think I will go to the dermatologist and check out my suspicious spot!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline randym431

  • Member
  • Posts: 1,125
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #5 on: May 26, 2009, 03:38:00 AM »
I'll chime in here..
I had one ks spot then confirmed hiv+ back in 2005.
Actually that was the only OI I had. Just one small blue spot.
That was pre meds, my cd4 was 85 and VL 500,000.
I had a hard time getting the skin doc to even do a bio on the spot.
He said it was a bug bite and wanted to start some weird medicine
for bug bites. I knew he was nuts and insisted on a bio.
Finally he did the bio, and then acted like he did not want to
tell me the results. I called and called and was put off on the results.
Finally he said YES, it came back KS.
I think this skin doc was only use to treating barbie dolls freaking out
over a little pimple on the nose.
So KS and hiv was like too much for this guy to deal with,
at least it seemed that way.

But, yes, after starting meds, in about 4-6 months the spot first turned
from blue to a brown sun-like skin spot. And then faded away to nothing.
I also noticed right after starting meds, I had a few very very small
“raised” spots on my side under the arm pit. I know that was KS just starting
to form. Never had it bio-ed, but I just know that was very early KS.

The meds faded them all away too, before they went any further.

But I have to add, after a now cd4 of 600, and no VL for years,
I sometimes get a raised bump on the arm or hand. But they always then fade
Away shortly after. I really believe it’s the KS trying to take hold, but my
Immune system is just good enough to win the battle.

Also there are times I just feel really tired and like a wreck, for periods
Of days to a few weeks at a time. I also believe it’s the KS trying to take hold,
And the body fighting it is what makes me so tired.
Like a give and take with the KS, then the immune system fighting it back.

KS is typical for older non hiv people in general. Like people I their 80’s
Get KS often. As I get older, regardless of my stats and being on meds,
I wonder if the KS will be the issue long term as I get older?

But after you start meds, in a few months, you should see the KS
Fade away and no new spots form. Especially after your immune system
Starts the recovery. Well, that’s my take on it with my experience.
Wishing you well !!!

« Last Edit: May 26, 2009, 03:41:07 AM by randym431 »

Offline sensual1973

  • Member
  • Posts: 195
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #6 on: May 27, 2009, 08:19:30 PM »
my KS was there before starting meds (1 or 2 little spots) they did spread alot when my CD dropped to 210 which at that point they put me on meds,but it took the KS arround 2 years to disappear after having four Chemotherapy sessions too while i was on meds.

hope that helps.

x
God grant me the serenity to accept the things i can not change.

Offline Buckster2005

  • Member
  • Posts: 15
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #7 on: May 28, 2009, 09:11:31 AM »
Since KS is so s'posed to be so much rarer these days, how many of us have had KS come up after HIV?

My partner has had ks.  He switched off an PI last summer to atripla and it returned.  He swithed off atripla to kaletra and it has almost disappeared.  You may want to check with your doc concerning PI treatment with ks.    http://www.hivandhepatitis.com/recent/2008/091908_d.html

Hope this helps.

Buck

Offline trai

  • Member
  • Posts: 70
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #8 on: May 28, 2009, 01:41:00 PM »
 :P  In My case I have had it for 2 years....was on a PI based regimen that made me sicker then hell and did not help my KS.  KS was the only reason I started treament since my CD4 and VL were so good.  After a year and 1/4 I stopped meds as my KS was no better but really no worse.  MRI, and GI...oh fun stuff.  Just a few months ago...started Atripla not as sick every day as I was on the PI based.  But no picnic in the park for me.  I am borderline for Chemo, but since it just on body...we have opted to just monitor it. 18 small to large tumors on my skin.  Thankfully none on my face and what I do have are hard to see with out me pointing it out.   Hoping the Atripla might help, seems too...but hard to tell at yet.

The side effects is what killed me from working...sort of hard to say Coffe, tea or me...and dry heaving. 

One of my huskies had a tragic accident almost a year ago.  Enough said...don't want to talk about that.  Still have my older Husky who will be 13 this August.

Well things did not work out so well with the relationship...( in a nutshell) things got very rough. 

Moving back to Atlanta, just as soon as I can arrange it.
12/2003  Tested Neg
02/2003  Tested Neg
08/04/2004   Tested Poz
08/05/2004   514     51536       
08/23/2004   516       81600    
01/07/2005   449       27500    
07/01/2005   308       35600    
07/21/2005   527       8140    
09/15/2005   512       3950    
12/02/2005   434       0    
03/15/2006   309       0 
10/   /2006    356      0  
01/08/2007   311       7899    
05/10/2007   345       9133    KS Diagnosis Started Meds for First time.
07/05/2007   692       793
10/   /2007    626       0
01    /2008    ???        0
07/08/2008   6something  0
08/   /2008  Stopped meds

06/2010   ???      0

Offline buttondwn

  • Member
  • Posts: 5
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #9 on: May 28, 2009, 10:05:34 PM »
I've been positive since 1994 and had my head stuck up my ass until this past fall 2008 - I had never been on any treatment at all and I was in complete denial - I mean COMPLETE denial - including ignoring two large half-dollar sized "bruises" on my leg.  I think I really did believe they were just bruises that hadn't healed or something when they really should have been red flags that I was falling apart.

PCP and CMV pneumonia (among several other OI's) finally landed me in the hospital for two weeks (when I checked out of the hospital, I had 50 CD4 cells and a viral load of 3.7 million).  And not surprisingly, the biopsies revealed that the two spots were indeed KS. 

I began HAART November 1.  I had a checkup today as a matter of fact; my CD4 count is up to 211 and my viral load is down to 274.  One of the sarcoma's has faded to the point that it does in fact look like a bruise and the other one has shrunk as well.  They tell me that they will both continue to fade and eventually disappear as my immune system reconstitutes and I become healthier.  You better believe my head won't get stuck again!
   
10/1994  Diagnosed HIV+
10/1994  Proceeded to bury head in the sand
09/2008  Admitted to hospital for two weeks with PCP, CMV, & a host of other OI's.
09/2008  CD4= 65 (7%), VL= 3.7 million
10/2008  CD4= 50 (6%), VL= 2.5 million
11/2008  Started HAART: Truvada, Reyataz, Norvir
12/2008  CD4= 287 (27%), VL= 3760
02/2009  CD4= 321 (30%), VL= 822
05/2009  CD4= 211 (16%), VL=274
06/2009  CD4= 268 (19%)

Offline randym431

  • Member
  • Posts: 1,125
Re: Just Curious...how many of us have to deal with KS as well?
« Reply #10 on: May 29, 2009, 11:45:11 PM »
Good thing you didnt have my skin doc. You'd be on bug bite medicine...   ;)
Btw, in my case, I didnt really see results with the spot fading away until my cd4
was near 300+. The good news is no new spots should appear (hopefully).

 


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.