POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: pauleddy on April 29, 2013, 12:30:33 am
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We live in Thailand and my BF is Thai.
He had a poz test 8 weeks ago and bad PCP and thrush which is now a lot better. his CD4 was 54. he is now fatter, stronger and more relaxed since starting HAART. He will have another CD4 check in 1 month--the Thai medicaid is not very efficient and won't spend money on poor people, except providing Combivir and other regular meds.
My BF has a raised irregular reddish rash all over his neck/upper torso with a couple of patches in the groin. Some of the spots are 1cm and elongated, but to me they have the grape colour of KS. There were 2 or 3 on his groin which were quite large grapes.
the HIV doc sent us to the Medicaid Dermatologist who saw us for about 2 minutes, said "keloid" and gave us Fucidin cream. My BF is quite dark skinned so keloid is a possibility after cuts or accidents.
I cannot find anywhere on the web which says that a new HIV diagnosis gives keloid scarring. Has anybody any ideas about this?
If it is KS, will it just get better when the CD4 goes up? Or will there be scars? My BF meets clients in publishing, but he can't wear a full shirt collar in this heat.
I probably need a second opinion, but we are not rich. I was shocked to have no biopsy done, but this is medicaid in Thailand we are talking about.
I am caucasian and was an RN for many years. but, my knowledge is not good enough to relate KS to keloid with a new diagnosis.
If we do not have biopsy, laser or whatever, will the KS (if true) just go away? How long? When? we are so worried. The whole thing is very depressing for both. If anyone can provide clues, i have enough knowledge to grasp.
I can only guess that the neck and groin must relate to lymph glands--which surely means KS?
thanks
Eddy :-\
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Hi Paule , welcome to the forum . I have moved your thread into the appropriate forum so that you might get more reply's .
I would talk to a doctor again to confirm whether your BF has Kaposi Sarcoma but I can tell you that many times KS does resolve and can eventually fade over time .
I had KS and my lesions were pretty stubborn and resistant to treatment but after my CD4 count improved they did fade , in my situation it took years to get where I am now .
Best of luck and again , welcome .
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Thanks Jeff
Hope that I get replies. we really don't know what to do.
I think that the Dermatologist was a bit phobic, and just said something to make us go away.
Some Thai people do get keloid, I think, but it is normally a result of cuts or nose piercing. I really can't see a link to keloid if someone had a rash and PCP for 2 months and then gets a Poz test.
Glad that your KS went. Did it just fade over many years? If this is KS, we are not sure that Fucidin antibacterial cream is doing anythg---but is there anything else to be done? Surgery? Laser? Or wait?
thx
eddy
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The preferred course of action for external KS lesions is to get the viral load down and the cd4 count up and in most cases it resolves that way .
I had a pretty bad lesion that took radiation treatments and chemo therapy . If I had it to do over I probably wouldn't have treated mine so aggressively or just had the one bad one treated with radiation .
KS is frightening and I do not want to add to your concerns and make it sound as if any two cases of KS should be treated the same . Its understandable and a good thing you are educating yourself about this but I would be remiss if I didn't urge you to seek out a doctor who has experience diagnosing and treating KS ... I wouldn't be surprised if it is KS that your doctor would take a wait and see approach .
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Thanks again Jeff
The lesions are still red, but the groin ones, which were larger, have turned smaller and more plum or chocolate in colour.
Obviously, you are correct in advising us to get another opinion.
If we are speaking of lesions going away with CD4 upping, are we talking months or years? If the KS just goes with the CD4 going up, are there scars for most people?
i know it is hard to say, but any clues are better than none.
eddy
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It would only be guessing if I were to try to predict a time line for a remission because it all depends on ART therapy success or how long it takes to achieve success .
Unless KS is effecting vital organs , waiting for the immune system to recover is most likely the course of action ... I have lived with it since 94 or 95 and with treatment it got better , so you are going to have to look at this as something that's going to take time , how long I don't know .
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Hey Eddy,
I have similar issues about a year ago, I am a Chinese living in shanghai...
If u want to talk in private ,send me ur messenger or email..
Cheers
Chris
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mail pev100@live.com
skype paulbangkok1
Thks
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Added u on skype...
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Very useful Chris, thanks.
a medical book says that keloid KS is very rare
I didn't know that there were variations of KS.
But, it seems that things will get better when the CD4 goes up, even though it could be months.
If anyone else has any ideas, pls msg me here
Thx
Eddy
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You're welcome! Glad to help... It took me a year to recover from my fungal rushes.. I think a test still needed... My diagnosis is confirmed after they drilled a hole and sucked some fluid from my bone :o
Seems only around 10%cases have skin complication caused by fungal related OIs,and the treatment is recommended for 12months,coz the possible relapse .
It's just my experience ,if this is the case for ur bf... The hospital and the doctor I mentioned , I think she could help to confirm..
I am going for diving in Malaysia via bkk in July with my hubby, let me know how it goes ,wish u guys all the best!
Chris
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Btw U need to bring ur bf to see a eye doctor to rule out possible issue due to his low cd4 counts.
Chris