POZ Community Forums
Main Forums => Positive Women => Topic started by: Lido on February 05, 2008, 02:26:15 pm
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Hallo All women living with it.
Am a 51 year old woman and poz. This is my introduction as i do not have a man or anything that i can start my introduction with. Anywhere forget.
My proplem is of late i have noticed a big hump under my neck. People are asking me what it is and suggesting to go to the hospital and have surgery. I cannot wear anything low neck, am mostly in polos.
This has depressed me so much. i also have fat accumulation in the wrong places breast, stomach and fat loss in my arms, legs and bumms. am taking Reyataz, Norvir and Truvada. I have been on this combo for 3-4 years now. Is anyone experiencing this proplem.
My doctor wont listen to my complaint, she tells me that what is important to worry about is my illness and not my beauty.
Please if anyone can help me i dont dare to date because of my looks.
HELP ME MY FRIENDS
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Lido
There are two women who are frequent posters with valuable personal experiences with lipodystrophy they've shared. You can scan their previous posts throughout the forum by going to their profile listing. They are MOONLIGHT1114 and ubotts.
However, I'm willing to bet one or both will respond to you directly once they see your post.
If you haven't yet, you may want to visit the Lipodystrophy forum.
Best regards.
Em
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Hallo EM
Thanks very much for your quick response.
Lido
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Hi Lido
i have only been on this combo since July last year but have noticed a little weight gain on my tummy..i starrtd losing the weight in my arms and legs a few years ago while on another combo, I don't have the fat around my neck..yet, but I know that many here have this problem and it's very distressing for them.
I'm 60 this year so I'm more inclined to blame getting older than the meds at this stage...but hold tight the other ladies will be here to give you a more experience view on this.
Welcome to the forums hope you stay around and we hear more from you.
Hugs
Jan :-*
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Lido: Im on Truvada and viramune..almost 5 years now...i have increased belly fat and waist and boobs (b4 my breast reduction) Im not sure whether or nto to attribute it to aging or to the meds...but i know the belly and waist fat goes away with exercise for me..
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Hey Lido, although I have not experienced the hump in the neck (as I think that's usually more problematic with men) I do have lipo-belly and bird legs and arms. People ask me sometimes in the store how far along I am. >:( But, I'm not really all that concerned. At the top of the screen, right under the AIDSMeds logo, there is a link you can click on called "Drugs." That should give you some insight. I don't really know what to tell you about your doctor. If you disagree and think you could maybe try another combo, maybe you should get a second opinion. That's my two cents.
And welcome. You don't have to have a man to post in the dating thread. That's where we women get together and just talk about life. Please join us. I'm looking forward to getting to know you.
Peace~
Betty
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Hi Lido.
Welcome...
I am almost on the same combo as you, but on Invirase (another PI) instead of Reyataz. My doctor actually said Reyataz is supposed to be better for lipo than Invirase.
I am really sorry to hear your experiencing all these problems. I have been taking this combo for 3 months. Even so, every time I go to the hosital they measure my belly to notice if lipo is starting.
From what I understand, it is the Norvir which boosts Invirase (or Reyataz) which might be the worst offender here, even though it's only 200 mg a day.
Maybe it's worth speaking again to your doctor, maybe together with a friend, relative or even the nurse if you get along and you can ask her to join the appt (I noticed doctors are much more nicer and patient when I come with someone else and not alone). As a woman to a woman she should be understanding your concerns. I mean, doctors today are aware of lipo and try to avoid it when possible, she really should get with the times. If you find her unresponsive I'd try someone else. Maybe under some circumstances it's possible to ditch the Norvir or switch the PIs. I am resistant to some other meds, but maybe you can change. It's important to a) get acknowledgement from the doc that this is an issue that needs to be addressed, and not ignored b) find the worst "offender/s" of the drugs and replace it. It doesn't mean switching the whole combo. Just 1-2 meds might be enough.
If you can't talk to your doctor or another doctor, try to speak to an AIDS organization, get some advide there, mediation btw you & your doc, whatever you need to have your needs addressed. I've had quite a few arguments with my doctors, it's a changing field and they have to keep adapting and being flexible too. If not, I guess they'e in the wrong profession...
There is a lipodystrophy forum here, if you haven't posted yet there, you can do that and get advice from people experiencing the same things.
On the back hump and fat around the neck I know they can do liposuction and they do it successfuly here. This is also worth looking into if you are really bothered. Here (Holland) the insurance pays for it as a side effect of the meds. I hope it's the same where you're at. For breast reduction, for example, they refuse to pay here (maybe because women's breasts can grow for a number of reasosn), but even so, a friend of mine struggled with them and got them to pay for that as well. But you have to have medical people that support you & that you trust. On the legs, I also know people do corrective surgery. But again the people in the lipo forum will know much more.
I want to send you a big hug and encouragement. I haven't been there but can only imagine how tough it is. But there is hope...