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Author Topic: Out out damn spots!  (Read 1802 times)

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Offline WildcatCC

  • Member
  • Posts: 91
Out out damn spots!
« on: October 26, 2009, 01:52:32 PM »
Ok cheesy line from a movie but related to my topic.

I was diagnosed last year (April 08) during a hospital stay which turned out to be PCP. As stated in another post, my CD4 count at that time was under 10 and my VL was 150k+.

I noticed some "bruising" on my legs while in the hospital. Since I was (am) quite active in sports (hockey, football, etc), I chalked them up to normal wear and tear. Except one of the bruises looked like it was growing. I had it biopsied. Sure enough, KS. I have a total of 4 on my legs - the largest the size of a quarter, the smallest the shape of a Nike swoosh about 1/2 inch long.

My ID tells me they will fade with my hiv med regimen as my CD4 cells climb. I'm currently between 500 - 700 CD4 and a VL of about 1200 (which is frustrating and a whole other post!), and I am seeing some lightening of lesions but no significant detraction. It's been about a year on meds with improving CD4s - am I being too impatient? I've also tried Panretin gel to lighten but that seems to just irritate the peripheral skin. 

My ID doc says "be patient". I tell her I am trying but I feel like these lesions, on my lower legs, seem to me to be a beacon for all to say "Look! He has AIDs!!". I try to be proud, to say to myself that what others think/say do not hurt - but I am only human.

Anyone have any advice or experience with these types of lesions - how did you handle it?

Thanks.
Mark
Apr  08 - Diagnosed
Apr  08  cd4 8, vl 150k
Meds: Prezista/Norvir/Truvada
June 08 cd4 250, vl 1600
Aug  08 cd4 275, vl 450
Meds: Atripla
Nov  08  cd4  386, vl 255
Jan   09  cd4  415, vl 2100 (spike?)
Feb   09  cd4 460, vl 212
May   09  cd4 515, vl 1200
Aug   09  cd4 717, vl 1535 % 23
Sept  09  cd4 535  vl 1710 % 18
Oct   09  genotype shows mutation. Discussing w/ ID Doc
Nov  09   cd4 480  vl 650   % 19
Dec  09 genotype slight mutation to Epivir and Retrovir
Jan 10   cd4 508 vl 250 (21%)  low vitamin d - on supplement 2000 iu/day
Mar 15 Change to Isentress and Truvada
May 5 cd4 498 vl 1485
June 16 cd4 550 vl undect!!!! (finally dammit)

Online Jeff G

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  • Posts: 10,822
  • How am I doing Beren ?
Re: Out out damn spots!
« Reply #1 on: October 26, 2009, 02:52:58 PM »
Hi Mark
I had KS lesions on my leg before also . I do understand how it affects the way you feel about yourself as a person living with HIV . My KS lesions were stubborn and didn't fade as quickly as I had hoped for so my doctors sent me to have radiation/chemo treatments to the effected area . I now feel if I had just waited longer they would have gone away on there own . Every body reacts differently somewhat so to each his own for what works . In my case patience would have worked as well as the more radical approach to treatment . I stayed on my meds and have been cancer free for 10 yrs . Good luck guy . Jeff .

Offline rioz

  • Member
  • Posts: 54
Re: Out out damn spots!
« Reply #2 on: October 26, 2009, 08:17:32 PM »
Hey Wildcat,

I had a bunch of nasty skin eruptions from my scalp to my waist in late 2007 as part of PCP, AIDS wasting, etc. The first summer I was on Bactrim and my skin was in a super sensitive state especially as related to direct sun exposure. This summer I was able to spend considerably more time in direct sunlight and my skin has improved tremendously. I am of Mediterranean decent so a fair amount of sun is not dangerous. It took a long time (2 years) but it will improve over time.

Richard
Living with HIV since 1985
Living with AIDS since 2007

Truvada, Lexiva, Norvir, Levothyroxine, Testim, Sertraline, Crestor

Offline rondrond

  • Member
  • Posts: 1,712
Re: Out out damn spots!
« Reply #3 on: October 27, 2009, 02:32:08 PM »
Hey Mark,

I wanted to welcome you to the forums.

I don't have KS, but I do have brown spots from poor circulation , a small leg ulcer that is not noticeable to anyone, but me, cause it stings, and scars from poison oak that just don't seem to want to fade (it's a battle ground) so I know what you mean about, not wanting to draw negative attention to yourself.

I have accepted that I am not going to win any more beauty contests and just wear shorts anyways.

I have come to realize that most people don't think AIDS...they don't know anything unless you tell them.

Keep on being handsome,
I am, :)
Ronnie

"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 Theyer

  • Member
  • Posts: 2,488
  • Current ambition. Walk the Dog .
Re: Out out damn spots!
« Reply #4 on: October 27, 2009, 05:06:02 PM »
Wildcat how can I put this.........with tits like yours no one will notice small spots on your legs... If you respound as friends have they will should go down. Mine did( one on the knee at the end off chemo for Hodgkins 14 months ago) and my numbers are somewhat smaller than yours.
Yake care
Theyer
« Last Edit: October 27, 2009, 05:11:17 PM by Theyer »
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline rondrond

  • Member
  • Posts: 1,712
Re: Out out damn spots!
« Reply #5 on: October 28, 2009, 01:21:55 PM »
I have been known to become hypnotized by brown spots, especially the two on the chest. p

Be careful abut putting beauty products (like the lightening cream) they could be making it worse. Did your doctor say anything about your use of it?

"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 Miss Philicia

  • Member
  • Posts: 23,899
  • celebrity poster, faker & poser
Re: Out out damn spots!
« Reply #6 on: October 28, 2009, 01:29:31 PM »
with tits like yours no one will notice small spots on your legs.

::detects swarming::
"Iíve slept with enough men to know that Iím not gay"

Offline MWCLTonline

  • Member
  • Posts: 33
    • Windows Live Spaces - MWCLTonline
Re: Out out damn spots!
« Reply #7 on: October 28, 2009, 07:32:11 PM »
My ID doc says "be patient". I tell her I am trying but I feel like these lesions, on my lower legs, seem to me to be a beacon for all to say "Look! He has AIDs!!". I try to be proud, to say to myself that what others think/say do not hurt - but I am only human.
Anyone have any advice or experience with these types of lesions - how did you handle it?
Thanks.
Mark

Dude!
Your ID is wise; Your Journey has just begun...  I've been lucky to have been on meds from the start and to have escaped KS, however; my beacon is lymphadnopathy -a so far permanent swelling in the lymph nodes @ the base of the ears.  :o I only notice it when I'm shaving and if asked, I just matter of factly say 'it's lymphadnopathy', swollen lymph nodes and forge on.   ;D If pressed I'd say that its cause is thought to be HIV hiding there, that the reservoir changes size, my ID says as long as its not painful or a problem to leave em alone so I just live with it!  ;) Depending on your disclosure comfort level; If you have been diagnosed with AIDS say so, if your diagnosis is another -HIV+ status, explain it  ;D
Michael
"HIV is something you live with every day for the rest of your life. You may never die of it, but you always die with it..."
http://mwcltonline.spaces.live.com/
"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Offline edfu

  • Member
  • Posts: 1,084
Re: Out out damn spots!
« Reply #8 on: October 30, 2009, 12:35:15 AM »
It can take several years for the KS lesions to disappear completely.  Mine took over three years, and  there is no sign of them now.  Has their color changed at all?  If they are responding to your antiretrovirals, the first sign should be a change in coloration from violaceous to brown.  The brown is hemosiderin, protein in the skin, not KS.   Perhaps this is what you see as "lightening."  Your doctor is correct:  It can take a while.     
"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 WildcatCC

  • Member
  • Posts: 91
Re: Out out damn spots!
« Reply #9 on: November 03, 2009, 11:12:56 AM »
Thanks all. I value your input greatly.

My spots were never any other color but brown. They have lightened somewhat over the past few months.  The largest one seems to be shrinking. The one on the bottom of my foot is all but gone.

I suppose I should be wearing these spots as a badge vs a curse. I've been thinking a lot lately about why I feel "horrified"
 if someone intuits my spots as AIDs. What am I afraid of exactly? The shame, mostly, I think. I'm sure this will pass.

Thanks again for all your opinions.   ;D
Apr  08 - Diagnosed
Apr  08  cd4 8, vl 150k
Meds: Prezista/Norvir/Truvada
June 08 cd4 250, vl 1600
Aug  08 cd4 275, vl 450
Meds: Atripla
Nov  08  cd4  386, vl 255
Jan   09  cd4  415, vl 2100 (spike?)
Feb   09  cd4 460, vl 212
May   09  cd4 515, vl 1200
Aug   09  cd4 717, vl 1535 % 23
Sept  09  cd4 535  vl 1710 % 18
Oct   09  genotype shows mutation. Discussing w/ ID Doc
Nov  09   cd4 480  vl 650   % 19
Dec  09 genotype slight mutation to Epivir and Retrovir
Jan 10   cd4 508 vl 250 (21%)  low vitamin d - on supplement 2000 iu/day
Mar 15 Change to Isentress and Truvada
May 5 cd4 498 vl 1485
June 16 cd4 550 vl undect!!!! (finally dammit)

Offline edfu

  • Member
  • Posts: 1,084
Re: Out out damn spots!
« Reply #10 on: November 03, 2009, 04:01:07 PM »
I think your reaction is entirely normal.  I used to think that KS lesions were in many ways analogous to Hester Prynne's being forced to wear a red letter "A" in Nathaniel Hawthorne's "Scarlet Letter." 
"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 smalltown66

  • Member
  • Posts: 73
Re: Out out damn spots!
« Reply #11 on: November 04, 2009, 06:23:37 AM »
wildcat,
I too have experienced KS lesions . In 1997 I had several lesion to appear on my face and on the side of my head. At that time there were not many treatment options. I ended up having radiation treatment to the areas effected. I also had systemic KS through out the lymph nodes surrounding the lungs. So I again had to take another round of radiation treatments.

Since being on HAART I have had no episodes of KS. I am glad there are new treatments for you young beautiful folks today. Keep that body looking great.

Smalltown66
Lifting the weight of the world sure is easier with others with the same goal.

 


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