Just Curious...how many of us have to deal with KS as well?

[trai]

Since KS is so s'posed to be so much rarer these days, how many of us have had KS come up after HIV?

[Robert]

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

[Inchlingblue]

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

[Grasshopper]

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.

[mecch]

Hmm. Alarming stuff. I think I will go to the dermatologist and check out my suspicious spot!

[randym431]

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 !!!

[sensual1973]

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

[Buckster2005]

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

[trai]

   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.

[buttondwn]

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!
   

[randym431]

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).