POZ Community Forums
Main Forums => Living With HIV => Topic started by: trai on June 10, 2007, 12:09:56 pm
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Guess the topic says it all.
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Hi Trai, welcome to Aidmeds~
Sorry about the KS, and I wish you the best with meds~
Paul
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Good luck trai, what treatments have you gone on and how are you dealing with the KS?
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My doc started with my Truvada and Reyataz and we are going to monitor the KS to determine if I need further treatment for it over the next 6 months after starting the HIV meds. My actual numbers used to be in my signature until we move to the new server here.
I am tolerating the meds well...the first couple of days were hell...but much better now...my HIV neg boyfriend is great and very surportive. IN addition to to starting meds...I ask my airline to give me a base hardship transfer to help me with taking the meds...since all I flew was international trips from the New York area to Europe, and Asia. My doc recomended I fly domestically if I could to minimize the extreme time zone changes.
The nice thing about that hardship transfer was I came off of reserve and held a hard line. The other flight attendants here will know just how good that is being off reserve.
Well the odd thing about me having KS is that my numbers do not reflect me developing it.
My last CD4s were 309 and my VL was 9900. As some people might remember I went a year with being undectable without being on meds.
As to how I am dealing with....well I have my moments.....my boyfriend is not leaving me, haha...my friends that know have been great...more curious then anything...as they have not seen KS before....and I do not worry about how the lesion look on my legs or my arms. We are getting ready to head to the gay beach near where one of the places I live.
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Sorry to hear about the KS developing.
I remember your posting here before, but haven't seen you for awhile (i mean, how could I forget that chest :D)
I hear my F/A friend talking about reserve, holding a line, and being on VJA (etc.).....I don't see how you guys keep all that stuff straight.
Take care,
John
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Hey Trai,
Having KS show up with those numbers is unusual. Sorry you had it happen to you.
I hope the meds are not causing you too much grief.
Are you taking boosted Reyataz? It is unusual these days to here of people not taking a Ritonavir boost with it.
Hope you enjoyed the beach. ;)
HUGS,
Mark
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HI trai.
Yeah, it's been a long, long time. Sorry you're back to posting due to the KS. I do remember your numbers always being quite good so it is somewhat surprising you getting KS. The virus does funny things.
Mark (Aztecan) is right. Are you taking Norvir along with the Reyataz and Truvada? That's the combination I'm on and I'm real pleased with it. Side effects are minimal. Results are great. But for some reason, the Reyataz requires a boost of Norvir for some reason or it just sort of peters out.
And, hey, congrats on the boyfriend. That explains why we haven't heard from you in awhile. That's a good thing. And how are the dogs (Huskies, right?) OK, I hope.
robert
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KS is not like most HIV opportunistic infections that usually require a low level of CD4's or a high VL. KS can occur at any level of CD4's and at any VL. True, it's much more likely to occur at such levels, but those levels are not as essential or meaningful as for other OI's. Its occurrence is also being reported more frequently among HIV-negative gay men.
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Trai,
I wish you a good recovery.
As an ex- fight attendant I know too well how much strain long distance flying puts on you.
It is a good idea to minimise the crossed timezones as that puts an immense stress on your body.
Enjoy the skys baby
Hermie, ex Lufthansa purser
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My doc started with my Truvada and Reyataz and we are going to monitor the KS to determine if I need further treatment for it over the next 6 months after starting the HIV meds. My actual numbers used to be in my signature until we move to the new server here.
Sending well-wishes for beating the ks and it's good to hear your body is tolerating the regimen well
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I'm sorry you're going through this, and i wish the circumstances were better, but I'm glad you posted. I've missed you!
Best,
Creighton
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Hi Trai
Sorry to hear about your KS diagnosis. The exact same thing happened to me. I got it with a CD4 around the same as yours and started meds for the same reason. My consultant referred to it as a "dermatological wake-up call." Apparently it has less to do with your CD4 count and more to do with the way certain HIV proteins interact with HHV-8 (human herpes virus 8 ) in your skin.
The good news is that in time the lesions should disappear once your meds kick in and your VL becomes undetectable. I had several lesions on my legs and arms when I started meds, but they soon started to fade, turn brown and go flat. Within 12 months they had completely disappeared.
I should say I also had 4 cycles of chemotherapy (doxorubicin), really just to stop any new lesions developing before the meds kicked in, but that was really no big deal. There was no sickness or hair loss or anything like you'd expect with more aggressive forms of chemo. I'm not saying you'll need it, but if you do, I wouldn't be too concerned.
You seem to be handling it fine; I remember being very conscious of the lesions, even though they were covered up for most of the time, and even when they were visible, no one seemed to notice them. Nevertheless for me, they represented a visible sign of my illness and I couldn't wait to see the back of them.
Take care,
Carl
Manchester, UK
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KS is not like most HIV opportunistic infections that usually require a low level of CD4's or a high VL. KS can occur at any level of CD4's and at any VL. True, it's much more likely to occur at such levels, but those levels are not as essential or meaningful as for other OI's. Its occurrence is also being reported more frequently among HIV-negative gay men.
Really? I've not heard this anywhere. Would you kindly link to some of these frequent reports? Thanks Edfu.
Ann
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Hello Trai,
Sorry to hear about the KS. Wishing you the best...Keep us updated as to how things are going, and how the regimen is going for you.
http://www.aidsmeds.com/articles/KS_6757.shtml
Take care of yourself-----Ray
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Hello my fellow flight attendant. Sorry to hear of your misfortune. I am on the same combo, it really is easy to take and should get things in order for you quickly. Take care of your self and fly safe.
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Ooops, Sorry Trai, how rude of me! I just realised I neglected to say something to you as well - I did mean to!
While it's good to hear from you again, it's not so good that you've ended up with KS. I hope it quickly goes away with the meds.
Please let us know how it goes, and don't be such a stranger!
Hugs,
Ann
xxx
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Bummer about the KS, but good to know you're supporting your immune system by starting HAART.
Do watch the meds, though. I know several guys who started Reyataz and Truvada, then began having almost Sustiva-like mood disturbances.
Best,
David
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Thanks everyone for the well wishes. It has been almost 3 weeks since I started the meds. No my regimen is not boosted. Just taking the Travada and Rayataz plus my vitamins rights now.
Yeah I been reading here from time to time, but not posting much at all. I have been trying not to let the virus run my life or my thoughts.
Glad to know I have been missed.
I finally decided yesterday that I am going to go have a second opinion concerning my total treatment at the Winthorp Cancer Center at Emory University, since right now all I am on is HIV Meds.
I am tolerating the meds very well. It was just very nasty the first 48 hours...then a few days of nasua ect.....and for the first few days I felt stoned and had very vivid dreams. All this seems to have resolved. I will be going back in a week or two for my first labs since starting the meds to find out how they are doing.
The transfer to domestic flying has been great...
As for the boyfriend...what can I say...he is great...and is there for me every step of the way. Though at times my new cancer diagnosis is a bit hard on him...harder at times to deal with then the HIV. As I told him last night...that I guess after coming to terms with one potentially fatal illness..a second one does not seem that big of a deal to me. Maybe I have a very warped idea of the way I think. LOL
Incidentally he is a country music recording artist. And he loves my Huskies...which are doing great. The one I rescued about 2 years ago...is a totally different dog now. She is almost normal...and almost had forgotten all of the abuse she suffered prior to me rescuing her.
T Rai
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Hey Trai,
Sounds like a good idea to have the KS followed up. I've known people whose lesions disappeared on their own and others who needed a little help via chemo.
Regarding the Reyataz, I know the standard of care says two capsules once a day, but nowadays most of the time they add a Norvir boost to ensure proper levels of the drug in the bloodstream.
I am not trying to second-guess your doc, mind you. I know someone who has been on unboosted Reyataz since he was part of the human trials and is doing OK.
Just thought I would pass this along.
Hang in there. I will be sending positive and healing energy your way.
HUGS,
Mark
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KS is not like most HIV opportunistic infections that usually require a low level of CD4's or a high VL. KS can occur at any level of CD4's and at any VL. True, it's much more likely to occur at such levels, but those levels are not as essential or meaningful as for other OI's. Its occurrence is also being reported more frequently among HIV-negative gay men.
Really? I've not heard this anywhere. Would you kindly link to some of these frequent reports? Thanks Edfu.
Ann
Here's a documented medical-journal account, just reported, "New type of Kaposi's sarcoma seen in HIV-negative gay men":
http://www.aidsmap.com/en/news/999D3BD3-DA40-4442-B307-808F3AA9596D.asp
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Hi and welcome.
I too had some ks, but very minor. Like one pea sized spot. I thought it was just a blood blister.
My cd4's were 85 when I started meds. Later, on meds, with a cd4 of 390 my ks spot turned brown and then faded away.
One note, if you ever thought of going on ss disability, I remember reading that having hiv and one OI (like KS) qualified you for SS disability. Seems thats what the guild lines were.
Now I wonder if i should have not jumped at the chance for ss disability, since it pays more than ss retirement. I think my ss report said "if you became disabiled today your benefit would be $1600 a month". That was in 2005. Most ss retirement folks get $800-$900 a month. I wonder if i should have went that route back then...
Hopefully, your KS will soon begin to change to brown and fade. All the best!!!