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Author Topic: Is It KS (or Something Else)?: A Warning  (Read 6942 times)

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Offline edfu

  • Member
  • Posts: 1,084
Is It KS (or Something Else)?: A Warning
« on: April 29, 2008, 11:37:20 PM »
Or,

Is It HIV or Just Getting Older?

I'm 65 and a long-term non-progressor who was infected in 1982 or earlier (I went celibate in 1982--long story) but didn't progress--big time--until 2001, when I presented with two KS lesions, one on each shoulder.  My T4's were 29, and my VL was a comparatively low 16,000.  I immediately went on HAART (ACTG 2095; my double-blinded regimen turned out to be Sustiva + Trizivir).  My VL went undetectable two months later and has remained so since then.  Today my T4's bounce around between 550 and 450.  When the study ended in 2005, I dropped the AZT component of Trizivir and switched to Sustiva + Epzicom.   My KS lesions disappeared completely after about two years on HAART.

So I was extremely upset to learn about the New England Journal of Medicine report in September 2007 about the cluster of KS cases in older, HAART-treated patients in San Francisco.  Their median age was 51; they had a diagnosed HIV infection for a median of 18 years; they had been on HAART for a median of 7 years.  Their median nadir T4 count had been 340, and they had not had any other AIDS-related infections.  This newspaper article, posted here already on another thread, is an excellent overview of the situation:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/12/MNEESOFRG.DTL&tsp=1

I always knew that KS could occur at any T4 level, unlike most HIV OI's, which usually occur only at very low levels.  This news, however, was very unsettling.

Last week I noticed two reddish-purplish lesions on each of my forearms.  I had seen enough KS on myself and on my friends, who are no longer with us, to believe that my KS had returned.  Thank the goddess for Klonopin and Xanax, as I went into a tailspin of anxiety and depression.  Today I saw my longtime dermatologist, who has been involved with KS and AIDS almost from the beginning, in 1981.   He carefully looked at my two lesions and announced that I didn't have KS.

"What, then?  Basal cell [he had removed a chunk of the tip of my nose three years ago because of that]?  Melanoma?  What?"

"You may not be too happy, Mr. Ed, when I tell you the name.  It's a little embarrassing." 

"Just tell me."

"You have senile purpura, classically presented on the forearms."

http://www.merck.com/mmpe/sec11/ch137/ch137f.html

I am overwhelming grateful to be senile in this scenario.  I'd never heard of this condition!  Here's a photograph:

http://www.dermatlas.org/derm/IndexDisplay.cfm?ImageID=-937572288

My lesions look like the little round one in the upper right-hand corner of this picture of an elderly lady's badly senile-purpurad forearms.  So if  you're a certain age, etc., etc., don't jump to conclusions like I did!

P.S.  My dermatologist told me that he, too, has been seeing a cluster of HIV-positive gay gents over 50 with undetectable viral loads and good T4 counts presenting with KS.  He also told me he's been seeing more and more over-50 HIV-negative non-Mediterranean-stock gay guys with KS.  He said no one can explain why either group is getting KS now, other than older age and an as-yet unknown factor causing HHV-8 to kick in and do its damage.  He also said--and here's the kicker--he thinks there's going to be a KS "epidemic" in the next ten years.   And by the way, he completely discounts poppers as being implicated in any way with all of this.

 
« Last Edit: April 30, 2008, 02:47:34 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline rondrond

  • Member
  • Posts: 1,712
Re: Is It KS (or Something Else)?: A Warning
« Reply #1 on: April 30, 2008, 12:16:16 AM »
I'm glad its not KS and I'm glad poppers weren't given a 'bad rap'...Mom (who is 72 and a constant source of information, consolation, love, and advice has determined that doctors don't' know much about us older people as they aren't used to people having such long life expectancies. Every time she takes my step father in for a 'treatment' it's usually 'new' and the results are 'to be determined'.
Last week he actally had to swallow a camera that went through his intestines snapping pictures, sending the pics to an imager on a belt around his waist, and then to be pooped out. (they were to know it was out, if they saw a blue flashing light in his poop)...and ..no..they did not want it back....sounded like a pretty expensive poop to me....
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: Is It KS (or Something Else)?: A Warning
« Reply #2 on: April 30, 2008, 08:03:12 AM »
Hello Edfu,

I am also glad to hear that it's not KS. But having soooo many skin problem with Basal cell and squamous cell, and this and that and the next thing, over the past 20 years, I guess the only thing we can do is to monitor ourselves. I usually check myself over pretty well, and the areas , that I can't get a good visual of, Ed looks at that area. I have also been very fortunate, not to have had any problem with KS, at this point.
In fact, (your post reminded me to check),I have another Derm, Appt, set for June 5th.

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 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Is It KS (or Something Else)?: A Warning
« Reply #3 on: April 30, 2008, 08:03:48 PM »
Edfu,
Glad it wasn't KS.  Purpura ain't on me but I've seen plenty of it on my maternal grandmother and her contemporaries over the last 30 years -- she's 86 now with her 82yo sisiter living with her and a 95yo brother still kicking!

Cheers,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline AlanBama

  • Member
  • Posts: 3,604
  • Alabama: the 'other' 3rd World Country!
Re: Is It KS (or Something Else)?: A Warning
« Reply #4 on: April 30, 2008, 08:23:39 PM »
Glad it's not KS Ed.   That one scares me a lot.....

hugs,

Alan   :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Is It KS (or Something Else)?: A Warning
« Reply #5 on: April 30, 2008, 08:38:16 PM »
Glad it's not KS Ed.   That one scares me a lot.....

hugs,

Alan   :-*

I didn't know that KS was still around.........I haven't seen anyone with KS in about 10 or 15 yrs.
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline edfu

  • Member
  • Posts: 1,084
Re: Is It KS (or Something Else)?: A Warning
« Reply #6 on: April 30, 2008, 08:55:43 PM »
Thanks, guys, for your kind words.

A day later, however, I've begun to really worry about the situation in general.  It seems possible that something ominous and not-yet understood is really going on.  Re-reading the SF Chronicle article I linked above, I'm struck by the following comments:

*Dr. Jeffrey Martin's "canary in the cold mine."

*Dr. Toby Maurer's statement that since the letter appeared in the NEJM, more reports have come her way.  "Every day, I am getting stories from around the world....This is an infection of 70-year-old guys, and I'm seeing it at 50.  What does it mean?"  My own NYC dermatologist told me that he, too, is now seeing a number of otherwise healthy HIVers with KS. 

*The greatly esteemed Dr. Marcus Conant's "Some other virus, or infection, is stimulating HHV-8 to replicate,"  which I now realize ties in with my dermatologist's telling me Tuesday that he expects an "epidemic" of KS in the next ten years.   

To quote another wise man:  WTF??!!
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Is It KS (or Something Else)?: A Warning
« Reply #7 on: April 30, 2008, 09:10:00 PM »
Thanks, guys, for your kind words.

A day later, however, I've begun to really worry about the situation in general.  It seems possible that something ominous and not-yet understood is really going on.  Re-reading the SF Chronicle article I linked above, I'm struck by the following comments:

*Dr. Jeffrey Martin's "canary in the cold mine."

*Dr. Toby Maurer's statement that since the letter appeared in the NEJM, more reports have come her way.  "Every day, I am getting stories from around the world....This is an infection of 70-year-old guys, and I'm seeing it at 50.  What does it mean?"  My own NYC dermatologist told me that he, too, is now seeing a number of otherwise healthy HIVers with KS. 

*The greatly esteemed Dr. Marcus Conant's "Some other virus, or infection, is stimulating HHV-8 to replicate,"  which I now realize ties in with my dermatologist's telling me Tuesday that he expects an "epidemic" of KS in the next ten years.   

To quote another wise man:  WTF??!!


YIKES!  ???.............. thanks for the info  :-[......so looks like KS is making a BIG come back..........and not in a good way!  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

  • Member
  • Posts: 5,388
  • 29 years positive, 57 years a pain in the butt
Re: Is It KS (or Something Else)?: A Warning
« Reply #8 on: May 01, 2008, 02:30:10 PM »
Hey Ed,

Phew! Glad it wasn't KS.

I knew someone who died about a year or so ago whose KS was so pronounced it had disfigured his face.

Of course, he had every other horror going on too. He was one of those who didn't get checked until he was already very ill.

This reminds me, I need to schedule an appointment with a new dermatologist. I'm not sure if the one I have been seeing can tell a wart from a melanoma.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline ubotts

  • Member
  • Posts: 347
Re: Is It KS (or Something Else)?: A Warning
« Reply #9 on: May 10, 2008, 04:28:57 PM »
I am really glad you dont have KS ..thank the lord.

In reading your post, I realized that I have the purple spots on my arms and never knew there was a name for it..

I am poz 23 yrs and have been on meds for 6 yrs..Now at the age of 53, I seem to be aging really fast..

I asked my doctor about this, and she just said I am aging...
Didnt say it had to do with hiv or anything..

So I asked her to take off her shoes, being we are both 53 yrs old, and show me her ankles..so she did and nothing was there...
I asked her to put her hand by mine, and my hand looked like the hand of a person who is in there 70's...Hers looked fine..

I am so glad I went into your thread....Its nice to know there is a name for what I am
experiencing...
The link you posted was so helpful to my and I just want to thank you..

I am  on klonopin and zoloft, so I know about anxieties ....Anxieties and stress will kill you quicker than hiv...
Aren't you glad that they gave us these meds to cope..If not for them I would be a basket case....

Once again, thanks for enlightening me about this subject...
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline miked

  • Member
  • Posts: 12
Re: Is It KS (or Something Else)?: A Warning
« Reply #10 on: May 12, 2008, 07:19:28 AM »
I have been on antivirals since 1988 (about 2 years after I think I was infected) and have a consistent low but still detectable viral load and they can not seem to get my t cells up from around 200.  I came down with KS last fall.  Eventually about 35 lesions (mainly on my feet and legs, for a while was getting a new one every two weeks).  Tried an experimental drug at NIH without success and am now doing Chemo (doxil) which seems to be working.  My anti-virals regimen has been increased to Prezista, Norvir, Insentress, truvada and fuzeon shots. Doxil is suppose to an effective drug against KS.  The problem is that like all chemo, there is an upper limit to how much they can give you.  If my KS comes back in the future, probably will not be able to do doxil again, but there are several other chemo drugs that are effective against it, just with more side effects.

Offline Peter Staley

  • Member
  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Is It KS (or Something Else)?: A Warning
« Reply #11 on: May 12, 2008, 09:45:43 AM »
Mike -- welcome to our forums!  Glad you found us.  Sounds like you're getting good care for all the issues you are facing, including the KS.  Let us know if the chemo gets rid of it.

We've got a good lesson on KS here:
http://www.aidsmeds.com/articles/KS_6752.shtml

Peter

Offline miked

  • Member
  • Posts: 12
Re: Is It KS (or Something Else)?: A Warning
« Reply #12 on: May 12, 2008, 10:30:44 AM »
Don't want to scare people, but there has been a reemergence of KS even with HAART.  So be aware.  KS is treatable, just keep an eye out for it.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/11/MNEESOFRG.DTL

Offline aztecan

  • Member
  • Posts: 5,388
  • 29 years positive, 57 years a pain in the butt
Re: Is It KS (or Something Else)?: A Warning
« Reply #13 on: May 13, 2008, 03:18:59 PM »
Don't want to scare people, but there has been a reemergence of KS even with HAART.  So be aware.  KS is treatable, just keep an eye out for it.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/11/MNEESOFRG.DTL

Thanks for the article Mike. I printed it and will be passing it along to my doctor and anyone else who's an old, er, long timer.

I had heard of this but didn't have the particulars.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline cocoboogie

  • Member
  • Posts: 39
Re: Is It KS (or Something Else)?: A Warning
« Reply #14 on: May 17, 2008, 07:33:43 PM »
Currently, I am taking chemo for KS.  Like Mike, I am taking Doxil and it is working very well for me.  It is wierd my KS also appeared on my feet and legs, too.

If anyone gets KS, I hope they dont freak out too much about it.  I was very nervous at first when I read about and the treatment options.  But it has worked well for me and I am noticing a huge difference in my appearance and confidence.
Date    CD4  VL
11/07  20     56,000 started chemo for KS
4/08    12     60,000 started Kaletra and Truvada
5/08    14     820
6/08    19     Undetectable stopped chemo
7/08   149    Undetectable  
8/09   247    undetectable
6/10   498    undetectable
1/11   408    undetectable
4/11   402    undetectable  
5/11   511    undetectable
11/11  599   undetectable
7/12    439   undetectable
3/13     479 undectectable
9/13 645  undectectable

Offline poznlongbeach

  • Member
  • Posts: 13
Re: Is It KS (or Something Else)?: A Warning
« Reply #15 on: July 01, 2008, 01:18:48 PM »
Currently, I'm doing chemo as well for my KS and like so many of you I'm on Doxil as well. This is my second time doing chemo, I started in December of '06 and was on Doxil for 10 months stopped in September of '07 but the KS came back and started chemo again last month. Another 10 months getting treatments every three weeks. But we have to do what we have to do. Just hang in there. We will get through it.
Tony
My life has been an incredible journey that has been nothing less than one significant truth unfolding onto another. There are no words to describe all I have come to know, and have been guided to know. I have learned that if I humble myself and ask to receive, "life" will provide me with the people and things I need precisely when needed, and usually abundantly more than I am prepared to receive.

Offline trai

  • Member
  • Posts: 70
Re: Is It KS (or Something Else)?: A Warning
« Reply #16 on: July 11, 2008, 10:13:58 AM »
While I am not a LTS yet...I too was diagnosed with KS as some might remember a little over a year ago.  Mostly on my lower legs, and a few on my fore arms.  At the time I had been undetectable for about a year without meds and my CD4 counts had always been above 325.  Well I noticed a few "lesions" about 5 months before I finally got the curage to have it biospied.  Of course it came back as KS, even though my HIV doc said it was not KS and the dermatologist also said it was not KS but lets check it for my peace of mind.  ( Looking back now...I am glad I insisted on testing even though I have a big scar on my leg from that.)  Anyhow after the results came back I immediately saw my HIV doc and started HARRT.  Truvada and Reyataz which is another story.  I got a few more lesions over the next 6 months and now thankfully do not seem to have had any more develop.

Yes I have pretty much been a basket case at times in thinking about it.  I have not so much worried about anyone noticing, since if they know what it is, the will know more about my other condition.   

After over a year now with KS, I am not getting any new ones, I don't think, but my old ones do not seem to be getting better. 

So to me it is one of those things to deal with.
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

 


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