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Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: jaguarpaw on August 18, 2010, 01:49:46 pm

Title: Blurring the lines...facial fillers: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 01:49:46 pm
Hello everyone,

For the last couple of weeks I have been in conflict as to getting Sculptra Treatments done… I’d like your opinion….

Here’s a little backstory.

I was diagnosed a little over a year ago, yet I could have sero-converted as early as 2.5 years ago and not have known it. (Didn’t test for 1.5 years before poz Dx)
I have been on meds for less than 4 months.

Now, I know that it is unlikely that I have developed lipoatrophy in such a short time either by HIV infection itself or by the meds that I am on. ( I’m on Isentress + Truvada, very lipo friendly as far as we know.)

Yet, every time I look in the mirror I see minor contour deficiencies and depressions that I blame on HIV rather than aging alone. I am 29 years old. I know it all may be in my head, but the perception of my image to myself obviously matters for my mental wellbeing. I was apprehensive to begin ARVs because of this.

As I understand I have the following risks for lipo: HIV +, ARVs, White race (1/2 white 1/2 latino), and leaner build, including a lean face.

I have temples that are thinning out, deepening nasolabial folds and and I swear I begin to see my cheek bones protrude as my cheeks slowly sink in.

And as an experiment, I’ve told coworkers (they don’t know I’m poz) I had bought my 30th birthday present and it was facial fillers and they say “you’re nuts, you don’t need that!”

So it has made me doubt myself; it has made me feel as if I am being vain just for considering it.

And I have done more than considered it, I actually have met with a Sculptra expert for a consultation, because I met the req., I applied for the Sculptra Patient Access Program and I was luckily approved. They are sending the product to my Dr.’s office but I do have to pay a steep doctors fee.

Dr. thinks that I am being smart for doing this early despite that my face looks mostly normal to everyone but a few people. I seem to have stage 1 lipo crossing into stage 2 (as defined by the makers of Sculptra). He said that I have a good face but he thinks we can improve on it. I felt an immediate rapport with him and I have seen his previous work.

I have an appointment next week to start….what do you think?? Am I being vain or should I look at this as a prophylaxis of sorts? I have been pro-active in many other aspects of living with the virus, shouldn't it apply to my face too? Am I over thinking it? :-\

Jag Paw

**I'd like to clarify and I am a little surprised by this, but the guy on my profile is not a picture of myself. It is a picture of Freddy Prinze Jr., actor. Some members have actually thought that is me. If I looked like him I would not get Sculptra one bit**
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Hellraiser on August 18, 2010, 02:45:07 pm
This is vanity man.  I refuse to believe that in such a short time you could have developed lipoatrophy from HIV.  I'm sure others will weigh in backing me up on this.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Miss Philicia on August 18, 2010, 02:48:18 pm
I think the doctor is using you for that $500 in addition to the somewhat flimsy case of having lipo -- did you show him pictures before HIV to compare with what you look like now?  If you actually don't have lipo issues and you're getting facial fillers then I don't know to respond, either you have it or you don't.  A doctor should be more sure of the diagnosis if he's going this route.  In addition to the Sculptra doctor, who would have only seen your face during the consultation if you didn't bring in earlier photos of your face, what has been the diagnosis situation from your regular HIV doctor?  The combination of you being unsure of all of this, and that absolutely no close friends and/or work associates think you look any different, just really makes me question why you'd want to go through something that seems both unnecessary and with the potential to actually make your face look larger -- I mean if you don't really have any lipo isn't that what's going to happen?

I'm getting my first Sculptra injections tomorrow, and the fee is only $50 -- that's 5-0, not 5-0-0.  I've also had lipoatrophy for a decade, fully documented with both my HIV specialist and the Sculptra doctor.

ps: I also find it really odd that your patient assistance approval turn around time was one week.  Mine took forever.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 03:15:44 pm

I'm getting my first Sculptra injections tomorrow, and the fee is only $50 -- that's 5-0, not 5-0-0.  I've also had lipoatrophy for a decade, fully documented with both my HIV specialist and the Sculptra doctor.

ps: I also find it really odd that your patient assistance approval turn around time was one week.  Mine took forever.

You guys are right. Looks like I'm gonna pass.
 
But if I look at pics from even two years ago, there is a major change. Not to mention I dropped 20 lbs after Dx from 175 to 155lbs on a 6'0 frame, from depression and although I gained the weight back my face remained different.

And this is not my primary HIV specialist. But he is an HIV specialist for with 24 years post PhD experience.

@ Ms. Philicia...I did get approved in something like 3 days. We faxed the app last week with my docs signature and prescription, and I got a call from my doc this week saying I was approved. I then  called Sanofi-Aventis independently to corroborate , and I am approved a limited amount of product. There is a letter on the way in the mail from them. Plus they disclosed the quantity of product shipped to my doctor.    
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Miss Philicia on August 18, 2010, 03:21:53 pm
Weight loss is not the same as lipoatrophy, especially during primary infection stage -- this doctor should know this.  I still find it odd that you're going through these hoops without a discussion with your primary HIV specialist.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 03:26:53 pm
I did schedule a consultation with my HIV doc about this for Monday, and other stuff too. But thanks for you opinions.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jkinatl2 on August 18, 2010, 03:30:45 pm
I do not know of the long term side effects of this procedure,nor how often it must be applied, so I can't respond in any way to its efficacy or its safety.

That having been said, many celebrities (Madonna comes to mind) are reported to have had it, as it counteracts the lack of fat and plumps up the areas. Apparently to very rejuvenating effect.

But in your case, I would never think it was in ANY way an HIV or HAART related situation, and am somewhat.... no really ... disturbed that an HIV doctor, especially a "celebrity" one (I have issues with the prevention/transmission on thebody.com that are another topic entirely) would recommend that you play the system like that. For one thing, it could come back and bite him in the ass if it comes to the attention of his insurance. Mainly because nothing I have read regarding your drug regimen even hints at lipo issues as a side effect.

It's perfectly okay to be a little vain. You are young, handsome, and handling your diagnosis well. When I was diagnosed I did much of the same stuff (no real cohesive websites like AIDSMEDS existed back then) but I took care of everything I needed to. Only now are gaps starting to open, where new stuff requires attention. I applaud you for being proactive.

But please be clear about this. If you are going through with Sculptra, you are doing so because of a desire to appear younger looking than you are. Hey, same reason I bleach my nearly white hair. Same reason a lot of guys work out a lot, or tan, or pop their collars.

And that is OK, so long as you can pull it off (this is what honest and brutal friends are for).

I am amazed that you were approved for the patient access program in one week. It normally takes months, and that's for people with EASILY diagnosed lipo.

Someone pulled a string or two somewhere, and that's disturbing in light of the fact that this is, for you, a purely cosmetic procedure. In other cases, say someone who has actual wasting, I would be thrilled about such a thing. In yours, I have to admit to wincing a little.

I'm just disturbed by the whole process, I guess. That's what I think. You might want to do some self-searching at some point and try to suss out why, exactly, you are doing this, and what having HIV means to you. In my experience, that took way longer than a year. still going on, actually.

Regardless, I hope the procedure works out for you in the way that you hope.



*edited to add:

As I was writing this, I see that you have changed your mind for now. Hope your appointment with your doctor goes well on Monday.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 03:51:33 pm
This is something I have been considering since my weight loss. And I dont do it to look better. When I lost all that weight people were asking me if I was sick. That scared me.

I am not playing the system. No way.

And I only said he was 'celebrity' because he is well known (for his contributions to HIV research) in this city. NOT because he does celebrities. And I dont do this to look like MADONNA. At all.

And it is certainly not comparable to bleaching someone's hair. This is a surgically placed implant through needles. And I dont do this to look better, rather to look like I did before the weight loss.

When I was 21 i remember touching my forehead and then my boyfriend's and I was impressed I didnt have that layer of fat he did. I just had skin then the bone. at 21! that is how little fat  I have on my face.

I am sure there is NO ONE anywhere that would be able to tell me exactly when lipoatrophy sets in for everyone. There are just generalizations  compliled through experience. Just like with everything else with HIV everyone's body is different!

But if I start to opt to not partake in taking a picture when out with my friends because of how I look that i s a problem, isnt it? Could it be a problem in how I see myself? Sure.  Is there a solution to it? possibly. that is what I am looking into.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jkinatl2 on August 18, 2010, 04:07:26 pm
I did not mean to offend. And it appears that my words were taken the wrong way. In the interest of clarification, I offer the following:

Quote
I am not playing the system. No way.

Never said you were. If anyone, your doctor would be doing that, if he is prescribing something that you want, but do not need, for a condition that you might not have. Like you said, lipo is subjective. But you yourself said that your friends do not think you have it.

I understand the weight loss after diagnosis, and am glad you have regained it.

Quote
And I only said he was 'celebrity' because he is well known (for his contributions to HIV research) in this city. NOT because he does celebrities.

Yes, I understand this, which is why I mentioned a familiarity with TheBody.com and it's experts. I do not think I implied that you were seeing a doctor who did celebrities, and the only reason I mentioned Madonna is because she was the first person that came to mind, whose rigorous working out and strict diet have caused her to appear very young and athletic from the neck down, but rather gaunt in the face.


There was a famous actress who once said, regarding the aging of starlets "Ass or face, take your pick." Meaning, when one works out, fat loss occurs all over, and tends to age ones face. When one is a little plump, that too appears in the face, which has the result of making the person look a little younger.

Quote
And it is certainly not comparable to bleaching someones hair. This is a surgically placed implant through needles. And I dont do this to look better, rather to look like I did before the weight loss.

Again, I think you took my remark as judgmental rather than observational. People also get pec implants, calf and ass implants, they have the fat from other areas injected into their lips. For a variety of reasons. Some as the result of HAART having caused fat redistribution, of course. And the fact that you want to look the way you did before your weight loss means, in fact, that you are displeased with the way you look now. Ergo, better.  And there is nothing wrong with that. I was not judging you, and am not sure from where this (perceived, due to the limitations of the written word) defensiveness comes.

Quote
I am sure there is NO ONE anywhere that would be able to tell me exactly when lipoatrophy sets in for everyone

Agreed. But if you have it after a only a year of infection, and not even that long after starting ARV treatment, then you are certainly an anomaly of the most rare kind.

Again, I wish you the best, and respectfully exit the conversation, puzzled.


Jonathan

Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Miss Philicia on August 18, 2010, 04:16:50 pm

When I was 21 i remember touching my forehead and then my boyfriend's and I was impressed I didnt have that layer of fat he did. I just had skin then the bone. at 21! that is how little fat  I have on my face.

So you've always had a face with no fat on it, because at that age you weren't even HIV+
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 04:25:07 pm
I think the controversial issue here with everyone is the fact that I applied through this assistance program and I was approved. I completed the application as required. If I had been required to have submitted pictures I would've.

We also do not know the internal workings of this program. Maybe there are quotas, allocations, for different states for different age groups. I dont know, WE dont know.

I feel like I have to apologize for something going my way. I feel like I am being prescribed to fit a certain look, a certain lifestyle.

I decided to start meds early, I decided to start with good meds, I decided to look after myself, mentally and now physically. Isnt this what HIV advancements are all about?? To merge the individual back into society so that he/she leads a normal life??
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 04:26:45 pm
That is true Ms. Philicia, but wouldnt it seem logical for someone with very low fat even when young to develop lipo faster than someone who did have, or had a face layered with baby fat?
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Miss Philicia on August 18, 2010, 04:32:11 pm
That is true Ms. Philicia, but wouldnt it seem logical for someone with very low fat even when young to develop lipo faster than someone who did have, or had a face layered with baby fat?

I'd say that 99% of the people I know with lipoatrophy got it from using Zerit in the mid-1990s, so I don't believe you will be getting this problem as it's not prescribed much anymore outside of Africa.

As far as getting approved for the patient assistance program ASFAIK all it takes is a low income and a diagnosis of lipo from a doctor.  The fact that you shouldn't have been diagnosed with this by the doctor is the issue, not anything with the program.  Like I said, you're being charged $450 dollars more than I am for the actual injections, so it seems like he's trying to make money off of you. If your income is low enough to qualify then I'd think that $500 is a bit of a sum for the patient.

But hey, do what you want.  It's your face, not mine.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 18, 2010, 04:48:45 pm
I think it's time we let this heated discussion fizzle...

I asked for opinions and I got them. Thank you.

I think I should speak to my primary care physician Monday and decide if I cancel my appointment for the injections later in the week.

I'd also like to call Sanofi-Aventis to inquire what is the procedure should I decide to cancel the program. (I'd like to know if they are able to recoup any unopen product to benefit someone else.)

And yes Ms. Philicia, $500 is a ton of money, specially burdened by student loans, and HIV care costs without health insurance support, on a low income.

Thank you all for your responses.

JagPaw

PS
I do wonder however, what the responses would have been if I had asked this question.

"I am a professional successful man in his late twenties concerned about what seems to be the beginning of facial lipoatrophy perhaps HIV induced. I have heard of a safe, effective FDA approved form of injectable that could help me with this problem. Although it is expensive I feel I could get good results from this product that would make me feel better about myself and better cope with my HIV diagnois. I think of giving this a shot.
 
I bet your responses would've been different.

The Sculptra PAP is not a government program, I am not taking anything from anyone. It is a program run by a very successful pharma co. I submitted my app and it went through. No foul play. If the dr. can see patterns emerging based on his 11 year experience with the material and thought it was a good idea to begin so be it.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 18, 2010, 11:58:03 pm

I do wonder however, what the responses would have been if I had asked this question.

"I am a professional successful man in his late twenties concerned about what seems to be the beginning of facial lipoatrophy perhaps HIV induced. I have heard of a safe, effective FDA approved form of injectable that could help me with this problem. Although it is expensive I feel I could get good results from this product that would make me feel better about myself and better cope with my HIV diagnois. I think of giving this a shot.
 
I bet your responses would've been different.

The Sculptra PAP is not a government program, I am not taking anything from anyone. It is a program run by a very successful pharma co. I submitted my app and it went through. No foul play. If the dr. can see patterns emerging based on his 11 year experience with the material and thought it was a good idea to begin so be it.

Good for you for standing up for yourself!  The new meds are *better* than the older ones in regards to lipoatrophy, but they do not by any means gaurantee that you will be lipo-free.  I'm looking at starting ATRIPLA, and I've yet to find a stupdy of Lipo-issues that goes out further than three years.  I know a few guys who've been on the "newer" meds for longer periods, and they're definitely developing some distinct lipo issues.  I seriously doubt you've been on meds long enough to be developing anything, but don't be ashamed to seek out whatever help is available when you need it.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jkinatl2 on August 19, 2010, 12:08:52 am
Well, WTF, you certainly have set up an "Us V Them" Situation here, haven't you?

As a "them," I widh you good luck with that.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 19, 2010, 12:24:21 am
Well, WTF, you certainly have set up an "Us V Them" Situation here, haven't you?

As a "them," I widh you good luck with that.

I'm literally rolling my eyes at this.  Where are you seeing an "us vs them" in this?
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Miss Philicia on August 19, 2010, 12:26:12 am

PS
I do wonder however, what the responses would have been if I had asked this question.

"I am a professional successful man in his late twenties concerned about what seems to be the beginning of facial lipoatrophy perhaps HIV induced. I have heard of a safe, effective FDA approved form of injectable that could help me with this problem. Although it is expensive I feel I could get good results from this product that would make me feel better about myself and better cope with my HIV diagnois. I think of giving this a shot.
 
I bet your responses would've been different.

No, I'd still wanted to know which doctor made the diagnosis (meaning your primary HIV doctor), and what HIV meds you'd been on and for how long you'd been diagnosed, for the same reason I stated that 99% of the cases I personally know (and I've had HIV for 2 decades) are from people who were on Zerit in the 90's.  

There have been plenty of newly diagnosed pop on these forums with latent body dysmorphia issues that swear up and down that they have lipo, and yet their doctors obviously don't diagnosis them as having it.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 19, 2010, 12:31:04 am
No, I'd still wanted to know which doctor made the diagnosis, and what HIV meds you'd been on and for how long you'd been diagnosed, for the same reason I stated that 99% of the cases I personally know (and I've had HIV for 2 decades) are from people who were on Zerit in the 90's. 

There have been plenty of newly diagnosed pop on these forums with latent body dysmorphia issues that swear up and down that they have lipo, and yet their doctors obviously don't diagnosis them as having it.

The doctors are notorious for ignoring early complaints.  "brain fog" is the most striking example that I know of this.  Is it really unreasonable to think that they're overlooking mild physiological changes?
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jkinatl2 on August 19, 2010, 12:31:04 am
I'm literally rolling my eyes at this.  Where are you seeing an "us vs them" in this?

Sorry. It's just that you came after Joe, then you seem to be coming after me. Paranoia? Maybe. But a blatant disrespect for people who have seen more than you can imagine? Well, evidence there speaks for itself.

Let's try and be a community here, why don't we?
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 12:39:59 am
Well, WTF, you certainly have set up an "Us V Them" Situation here, haven't you?

As a "them," I widh you good luck with that.

Confused. I feel a little finger-waggin' there...

If you see things as polarized and wanna label them as such....call it as you see it.

I'd like to point out that i'm not trying to start controversy here. I know there are a few guys on the forums that seem to have "clout" around here, so much so that it seems that other members are reluctant to engage.

I'm not trying to waltz in here like the new kid on the block with swagger in his step. I know that I have a lot to learn, and that I could learn a lot to learn about life with HIV from many of you.

I know that it is tough to live with this and as a result some of us have developed a tough skin. I am not trying to make enemies or ruffle feathers here. But I will speak on my behalf.

Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: sharkdiver on August 19, 2010, 12:49:18 am
I'd say the doc is getting big cutbacks or something. It doesn't sound right.

   
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 12:53:43 am
Good for you for standing up for yourself!  The new meds are *better* than the older ones in regards to lipoatrophy, but they do not by any means gaurantee that you will be lipo-free.  

Thank you for your understanding.Wtfimpoz

I seem to have a hard time conveying my message, I suspect I am not being clear.

Most things are certainly not absolute and specially when it comes to this bug. They are gradual.
I know I don't have lipoatrophy as you would see on a person that has been infected or on meds for a decade.

And I am not seeking treatment for such correction. Do I have to wait for it to get there before I do something about it.?

Why cant I learn from others experiences?? If I have minimal deficiencies why not seek minimal correction if available??

If we apply the same logic elsewhere, why don't I wait until my Tcells hit 200 to start ARV treatment?

Why wait until treatment, of any kind, is desperately needed?

Things are gradual, they are grey and subjective.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jkinatl2 on August 19, 2010, 12:55:26 am
Apologies. I  had removed myself from the conversation then saw the posting of a formerly timed-out member that seemed incendiary and replied. I did not mean to re-engage you. I shall not do so in this thread again.

Apologies again.

As far as Clout goes, there are some members who know science to a degree I can only imagine, and have experienced horrors I can, thankfully, not. They do indeed have clout, and rightfully so. I most certainly am not one of those persons, to the best of my knowledge.

But some of the long-term survivors deserve attention, even respect, even, dare I say, clout. Because they have paved the paths you travel. They know lipo from, say, body dismorphic disorder. And they have science to back them up.

And for the record, many of us have taken drugs with less than ten, or five years of trials. And paid the penalties, and reaped the benefits. Some of us actually know our shit here.

I for one was one of the first to blow the whistle on Sustiva and it's impact on those suffering with depression.  and it was tedious work, schooling my doctors on IRIS a week or two before I ended up in the hospital with what eventually proved to be exactly that.

We are not stupid, and we are not antiquated. We survive precisely because we keep up. Many HIV positive people acquire, or discover latent body dysmorphic conditions. Including myself. We use therapy and other tools to deal with this.

But I digress, and have once again overstepped. As you attempted to close this thread earlier, I respect that decision.

Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Miss Philicia on August 19, 2010, 12:55:33 am
jaguarpaw, you stated earlier you've not liked the lack of fat on your face five years prior to your HIV infection -- whatever this is about, it's not about lipoatrophy.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 19, 2010, 12:55:57 am
Sorry. It's just that you came after Joe, then you seem to be coming after me. Paranoia? Maybe. But a blatant disrespect for people who have seen more than you can imagine? Well, evidence there speaks for itself.

Let's try and be a community here, why don't we?

I'd love to be a community, but that is a two-way street.  "Respect" is about more than simply nodding and telling someone they've "been through a lot" when you find what they post insulting and unproductive.  I found his original post condescending, and I called him out on that.  I explained why, which is more than I ever got from him.  Was my response excessive?  Consensus seems to be yes, but after having him chase my posts around the forums 15 ways to sunday, finding insult in every simple question I have without so much as a suggestion as to WHY it was insulting, and generally making this forum worthless to me, I figured I didn't have much to lose.  Doesn't mean I'm dividing these forums into an "us vs them".  Was there anything in my little tirade that hinted at "us vs them", or are you superimposing that image over me?  
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Hellraiser on August 19, 2010, 01:03:00 am
jaguarpaw, you stated earlier you've not liked the lack of fat on your face five years prior to your HIV infection -- whatever this is about, it's not about lipoatrophy.

^ This embodies exactly what I think you're going through.  You're aging and you're not happy with the aging process.  I would be absolutely shocked if you actually had lipoatrophy.  I think you're seeing changes in the shape of your face due to aging and you think sculptra is going to fix this.  It's easy to rationalize that as lipoatrophy from hiv or meds, but I really don't think after such a short period of time you would have any sort of noticeable lipoatrophy.  I'm not trying to deride you, but letting you continue to say you're suffering from lipoatrophy is a bit more indulgent than I really care to be.  Whatever it is, it ain't lipo.

WTF, your experience with the meds is second hand only.  For you to weigh in on them is somewhat laughable.  You've never experienced any side effects from any of them and so your opinion on them is somewhat diminished.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: sharkdiver on August 19, 2010, 01:03:38 am
jaguarpaw, you stated earlier you've not liked the lack of fat on your face five years prior to your HIV infection -- whatever this is about, it's not about lipoatrophy.

I agree.

I remember after being diagnosed 25+ years ago, that I worried about every slight body change or ailment. It's a stage in the acceptance of this disease and it might take awhile. Have you talked with a counselor about this as well?
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 19, 2010, 01:18:22 am
^
WTF, your experience with the meds is second hand only.  For you to weigh in on them is somewhat laughable.  You've never experienced any side effects from any of them and so your opinion on them is somewhat diminished.

Focusing on the perceived failures of a source, rather than the merits of an arguement, is a classic fallacy.  The fact that I've personally not touched HAART has absolutely no bearing on the legitimacy of my observations.  Thanks for playing though, better luck next time.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 01:21:05 am
I agree.

I remember after being diagnosed 25+ years ago, that I worried about every slight body change or ailment. It's a stage in the acceptance of this disease and it might take awhile. Have you talked with a counselor about this as well?

Hi Sharkdiver. Yes. I am aware of the over vigilance that has come about shortly after diagnosis. One of my fears, as I stated to doctors, friends, and my counselor was the chance of developing body fat abnormalities.

That is precisely why I am on Isentress and not a PI. That is precisely why I want an NRTI-sparring regimen as soon as one is recommended.

After one of my sessions I spoke to my therapist about it....his response, being HIV poz himself was, "there are treatments for that, and you will become familiar with these over time", one of them of course the filler in question.

I guarantee you that if I saw him tomorrow (I no longer meet with him) and I asked him if he would be opposed to me having this treatment done to correct something that is bothering me, after me having worked all the logistics and having the resources and research in place.....he would say "If it makes you feel better, do it."
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Hellraiser on August 19, 2010, 01:22:03 am
Focusing on the perceived failures of a source, rather than the merits of an arguement, is a classic fallacy.  The fact that I've personally not touched HAART has absolutely no bearing on the legitimacy of my observations.  Thanks for playing though, better luck next time.

So you have talked to people who are highly experienced with HIV medications (you know like well say anyone here who's been on them for a decade or more?) and listened to what they have to say?

Or perhaps what you really mean to say is you're cherry picking your beliefs about medications from what you can find on the internet to support your suppositions.  I mean real world experience versus side effect disclaimers...I know which one I'd go with.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 01:44:06 am
I would like to briefly address the fact that a lot of you seem to hint at foul play when it comes to my Sculptra PAP application.

I counter that with this simple rhetoric, would it have been wise for me to have mentioned that I had applied and was approved if I had been involved in a fraudulent scheme?

Where would that put me in regards to trying to establish meaningful, lasting relationships with any of you? I would be at a loss indeed.

The fact of the matter is I found out about the program, called to see if I had a chance at qualifying as to not waste my time. I even asked what were the income qualifications, if I had been required to be infected or on meds for any length of time. All these questions were answered fully and in a gracious way. Maybe it was just the way I asked questions, maybe the agent was having a good day. And has it it turns out I met all the requirements.

Again I dont know the decision making behind this program, (quotas, allocations, need, age, degree of correction needed, or a combination of these, etc.) nor did I ever go into it trying to deceive anyone.

And as far as the relationship between my doctor and the granting agency I will not touch since it would only be speculation on my part. And I tend to operate on the assumption that people are good until I find out the opposite.

One thing is for sure. I seem to have lurked onto a very sensitive topic for a lot of folks.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Hellraiser on August 19, 2010, 01:46:24 am
Unnecessary cosmetic procedures are the only thing we're cautioning you against.  It's your face and your money so you're more than welcome to do with it what you will.  JK and Philly both seem pretty reserved to pass judgment, but you did ask for advice.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 01:51:57 am
Unnecessary cosmetic procedures are the only thing we're cautioning you against.  It's your face and your money so you're more than welcome to do with it what you will.  JK and Philly both seem pretty reserved to pass judgment, but you did ask for advice.

Note taken.
Thanks to everyone for their advice.
I feel my thread has been beaten up with a stick. But i got myself into this. and I appreciate the input.
All I know is that I was made uneasy all day thinking about all the comments, and I dont know if its a good thing or bad that I cared as much.

You guys can vote me off the island if you wish.  :-\
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 19, 2010, 02:08:02 am
So you have talked to people who are highly experienced with HIV medications (you know like well say anyone here who's been on them for a decade or more?) and listened to what they have to say?

Or perhaps what you really mean to say is you're cherry picking your beliefs about medications from what you can find on the internet to support your suppositions.  I mean real world experience versus side effect disclaimers...I know which one I'd go with.

dude I don't need to talk to anyone about anything.  I know people who've been on meds for about five years each.  They clearly have lipo issues.  Would you like me to send you pics?  Whether or not someone who has been treated for a decade aggrees that the new stuff causes lipo is unimportant...it obviously does.  Validation of the obvious by others doesn't make anything more or less true.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: Hellraiser on August 19, 2010, 02:41:08 am
dude I don't need to talk to anyone about anything.  I know people who've been on meds for about five years each.  They clearly have lipo issues.  Would you like me to send you pics?  Whether or not someone who has been treated for a decade aggrees that the new stuff causes lipo is unimportant...it obviously does.  Validation of the obvious by others doesn't make anything more or less true.

I would pay good money to see those photos, yes.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: BT65 on August 19, 2010, 04:25:01 am
I guarantee you that if I saw him tomorrow (I no longer meet with him) and I asked him if he would be opposed to me having this treatment done to correct something that is bothering me, after me having worked all the logistics and having the resources and research in place.....he would say "If it makes you feel better, do it."

Which is typical for counselors, when one of their clients mentions "whatever" to make themselves feel better, the counselor, of course, says "do it if it makes you feel better."  That's one of the things they get paid to say.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 04:38:21 am
Which is typical for counselors, when one of their clients mentions "whatever" to make themselves feel better, the counselor, of course, says "do it if it makes you feel better."  That's one of the things they get paid to say.

Agreed. Counselors do side with the client when it is advisable. But this is a counselor that has been poz for 15 years and is familiar with the issues concerning our community.

If I had mentioned that I would think it'd be a good idea to stop taking my meds or miss every other day because it would "make me feel better", I don't think he would have the same answer.

Or if I would bring up the topic of using recreational drugs to help me better cope, I doubt he would say "if it makes you feel better, go ahead."

Just a thought.

Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 04:49:33 am
Apologies. I  had removed myself from the conversation then saw the posting of a formerly timed-out member that seemed incendiary and replied. I did not mean to re-engage you. I shall not do so in this thread again.


But some of the long-term survivors deserve attention, even respect, even, dare I say, clout. Because they have paved the paths you travel.

I agree with this idea 100%. I know we in 2010 in the HIV community stand on the shoulders of giants. And what I meant by "clout" was the language used aimed at some of the other members is perceived as  an attempt to alienate, while most everyone reads in the sidelines...a type of bullying of sorts.

Now, mind you I do not know what kind of unresolved issues have occurred prior but I think its fair that I at least acknowledge the conflict that simmers because it has crossed into this thread.

But going back to my original idea in response to this quote I respect what LTS have gone through and I am humbled by their experiences. I expect to learn many a lessons from them.
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: sharkdiver on August 19, 2010, 10:05:30 am
type of bullying..no

discerning  BS ..yes
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: wtfimpoz on August 19, 2010, 03:27:29 pm
I would pay good money to see those photos, yes.

if I send you the pics, are you really gonna believe me?  Send me your email address.  It's a different look than some of the older drugs, but it's there and it's distinct.
Title: Re: Blurring the lines...facial fillers: Vanity or smart move?
Post by: jaguarpaw on August 19, 2010, 08:17:12 pm
I swung by my HIV physicians office today, after calling and asking that I needed to speak to my doctor, then the nurses said they'd ask her to call back, then I told them I actually needed her to see my face.

After turning on the charm, I was able to come in and meet with her for "10 minutes" during her office/prescription writing time, I guess. I explained my concerns and she did explain that although she did see possibly early signs of lipoatrophy if she looked for them, it could also just be aging like a 'lean' 30 year old.

She did say that NRTIS like Truvada that I am now, could be related to lipo, but it was unlikely that it had begun this early. Also she did say that because Isentress was approved in '07 we don't know what people that have been on the drug for 10 years look like in realtion to lipo. But she came back to "regardless, it is still to early to note any changes related to the medication."

Then, after MUCH hesitation I called my Sculptra doc today and I indefinitely postponed my session scheduled for next week.

The receptionist, confused,  informed me that my doc would give me a call back to discuss it.

But I told her I wouldn't be available for the rest of the day. I'll deal with it tomorrow.

I just hope I run with a similar streak of luck to have access to this treatment should I need it in the future.
Title: Re: Blurring the lines...facial fillers: Vanity or smart move?
Post by: mecch on August 19, 2010, 10:54:12 pm
Skinny thirty year olds do not have the dewy face of skinny 20 year olds.
I think if you get two trusted doctors to give you a diagnosis of lipo, go ahead and do what you want.
Otherwise, it may be some kind of fear of HIV combined with a sort of body dysmorphia. Something about your choice of words in many of your posts gives me a little feeling of an obsession.  It sounds a lot like people sound when they are convinced they have a body feature that is preventing their happiness or contentment, even though nobody else gives it much notice.
Title: Re: Blurring the lines...facial fillers: Vanity or smart move?
Post by: GSOgymrat on August 20, 2010, 08:01:34 pm
Jaguarpaw, if you are concerned you are experiencing lipoatrophy have you noticed other metabolic changes such as high cholesterol, high triglycerides, insulin resistance, loss of fat in your extremities, fat deposits, enlarged abdomen? For me the first signs were my legs looking very veiny. My facial changes followed. My cholesterol went from 120 when negative to over 400, and this was when I was younger than you are.

Keep in mind that if you actually have lipoatrophy facial changes are just a symptom of other changes that are going on and while fillers can make you look better they don't stop what is going on in your body.
Title: Re: Blurring the lines...facial fillers: Vanity or smart move?
Post by: jaguarpaw on August 22, 2010, 04:06:43 pm
Jaguarpaw, if you are concerned you are experiencing lipoatrophy have you noticed other metabolic changes such as high cholesterol, high triglycerides, insulin resistance, loss of fat in your extremities, fat deposits, enlarged abdomen? For me the first signs were my legs looking very veiny. My facial changes followed. My cholesterol went from 120 when negative to over 400, and this was when I was younger than you are.

Keep in mind that if you actually have lipoatrophy facial changes are just a symptom of other changes that are going on and while fillers can make you look better they don't stop what is going on in your body.


Your comment clarifies a lot things for me.

I had a lipid panel immediately after serconversion about 14mos. ago in which I came out very well. My LDL was very low, trigrycerides very low, and HDL a little low, a small concern. I have been working on that to get my LDL within range, with fish oil, diet, more excersice, etc.

I haven't had a lipid panel after starting meds other than my trigycerides, which are measured with my routine HIV labs. That number is still solid. But I do think I should have a full lipid panel again for comparison. Blood glucose, blood pressure, are very well within range.

So if I read your post correctly, you indicate that lipodystophy which is a sign of metabolic changes (which I understand- due to mitochondrial toxicity, etc.) is, for the most part, associated with blood lipid abnormalities? (That is new to me)

So I would only develop lipo after my lipids changed for the worse first?? I find this reassuring becuase Isentress (I take RAL+TVD)carries a very low risk in developing high cholesterol in the patient.

And my veins on my limbs protrude no more than an athletic man's would. No change there noted.

And I have not developed lipomas or noticed an increase in intra-abdominal fat. A little increase in sub-cutaneous fat, if anything.

So I think it all boils down to the fact that I'm just aging in a natural pattern....


----------------------
Oh and one more thing, thank you for being such an inspiration for so many of us. I have come across various interviews, posts, stories about you that have helped me out a lot in how I see this illness and how to go about managing it. Thx
Title: Re: Blurring the lines...SCULPTRA: Vanity or smart move?
Post by: jm1953 on August 26, 2010, 09:51:36 pm
Apologies. I  had removed myself from the conversation then saw the posting of a formerly timed-out member that seemed incendiary and replied. I did not mean to re-engage you. I shall not do so in this thread again.

Apologies again.

As far as Clout goes, there are some members who know science to a degree I can only imagine, and have experienced horrors I can, thankfully, not. They do indeed have clout, and rightfully so. I most certainly am not one of those persons, to the best of my knowledge.

But some of the long-term survivors deserve attention, even respect, even, dare I say, clout. Because they have paved the paths you travel. They know lipo from, say, body dismorphic disorder. And they have science to back them up.

And for the record, many of us have taken drugs with less than ten, or five years of trials. And paid the penalties, and reaped the benefits. Some of us actually know our shit here.

I for one was one of the first to blow the whistle on Sustiva and it's impact on those suffering with depression.  and it was tedious work, schooling my doctors on IRIS a week or two before I ended up in the hospital with what eventually proved to be exactly that.

We are not stupid, and we are not antiquated. We survive precisely because we keep up. Many HIV positive people acquire, or discover latent body dysmorphic conditions. Including myself. We use therapy and other tools to deal with this.

But I digress, and have once again overstepped. As you attempted to close this thread earlier, I respect that decision.



Totally agree with you as a long termer of 23 years.  Like you I've been in many clinical trials before drugs were FDA approved and they helped save my life, and at the same time helped pave the way for others newly diagnosed.  Now I've got lypo, facial atrophy, some things I take care of, other things I just have to live with.  I respect the author of this thread's concern, and I certainly wish I was in his position with all the knowledge they have now since we became positive.

JM