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Author Topic: What a waist...  (Read 7420 times)

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Offline LongTimeSurvivor

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What a waist...
« on: February 28, 2012, 10:18:53 PM »
Sorry...I love word play...

On leap day I will receive my first month's supply of Egrifta. Surprisingly, the insurance company approved it with out a fight. But I'll do my first shot on March 1st.

I know a few of you will go "whathefuc...", why is he doing Egrifta. All that hard work I do helps but I still have 33" hips and a 38" waist. Amazing how six-pack abs create an optical illusion of being thin.

My main concern was the heart problems that can arise from the type of fat that surrounds the internal organs. My family has a history of heart disease and I've already been in the hospital one time for fib/flutter. So I hope this gets rid of the extra inches that no amount of diet and exercise can get rid of.

Not going to go crazy measuring myself everyday but will try to update this post over the next few months with what results I have or don't have. Also, if anyone has any questions, ask away on here or send me a private message if you're shy.

...and to think only a year ago I was frightened to death of shots...now I'll be giving myself shots nine times a week. Two of the shots are for other meds...in case you thought my math was off.
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Offline denb45

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Re: What a waist...
« Reply #1 on: February 28, 2012, 11:07:03 PM »
Sorry...I love word play...

On leap day I will receive my first month's supply of Egrifta. Surprisingly, the insurance company approved it with out a fight. But I'll do my first shot on March 1st.

I know a few of you will go "whathefuc...", why is he doing Egrifta. All that hard work I do helps but I still have 33" hips and a 38" waist. Amazing how six-pack abs create an optical illusion of being thin.


Ok, I'm a little confused here.........why do you have a 38' waist, I'm older than you and only have a 34' waist and I've been on Meds for 20+ yrs.   :-\
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #2 on: February 29, 2012, 06:54:19 AM »
Denb45...Why do I have a 38" waist and you have a 34" waist? Because you're lucky? My doc feels I have the internal fat around my organs as the only explanation for why I have a 38" waist despite my exercise routine and my diet.

As to the reason I "lucked" out. Since this seems to have started after I began Atripla I assume I'm one of the few who get this particular side effect from Atripla. I don't think it's a side effect that you generally worry about when on Atripla...at least from what I've been able to find out.

Just something to deal with and work the daily shot into my daily routine.
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Offline denb45

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Re: What a waist...
« Reply #3 on: February 29, 2012, 09:49:24 AM »
Luck...LOL  that's never been on my side,   I prefer FATE  ;D

Maybe you should loose the Atripla

ahh YES I get it, it's called Vanity....Mirror, Mirror on the Wall who the fairest of them all  ;D

 I gave up on Vanity after I reached 40 yrs old, when I knew I couldn't turn back teh AIDS clock-of-time.

good luck, hope Egrifta works for you, I've heard good things about it  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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Re: What a waist...
« Reply #4 on: February 29, 2012, 05:24:45 PM »
. . . My doc feels I have the internal fat around my organs as the only explanation for why I have a 38" waist despite my exercise routine and my diet.

I hear you. I have the visceral adiopose tissue (fat around the internal organs) and the buffalo hump - but not from Atripla. It came from Crixivan.

Let us know how it goes.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #5 on: February 29, 2012, 07:21:54 PM »
Ah yes...Vanity...I know, it's a selfish, full time occupation, but...someone has to have it.

I admit I'd like my six pack to actually be flat but my bigger concern is still the heart trouble the fat can cause. I don't need an additional issue to occupy my time.

The stuff came this morning and I lugged it home tonight from work. Subways and large boxes don't mix well at rush hour. It apparently is a multi-step process to mix the stuff. So lots of opportunities to stick my fingers with needles.

That's it...now where is my mirror...
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Offline denb45

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Re: What a waist...
« Reply #6 on: February 29, 2012, 07:49:06 PM »
Ah yes...Vanity...I know, it's a selfish, full time occupation, but...someone has to have it.

I admit I'd like my six pack to actually be flat but my bigger concern is still the heart trouble the fat can cause. I don't need an additional issue to occupy my time.

That's it...now where is my mirror...

 ;D Your a funny man....lol you make me laugh, thanks for the humor  ;)  the only Vanity I care about is having teeth in my mouth and not having Body Oder........the rest of it, is really very simple & basic for me, always has been  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #7 on: February 29, 2012, 09:33:08 PM »
Glad I lightened your day. I can't take my self or my life too seriously. I love word  play. So if I can combine the two...and provide some entertainment...why not. Everything is transitory...even my six pack...speaking of...bodies...

...odor...hmmm...have to whack away all the guys at the gym who want to smell my underarms. Admittedly it is an acquired "taste"...so to speak...and sometimes I think I reek, but it never fails even then, some guy will walk up who was downwind and he'll say "...boy, you smell good."

But I've had people tell me I smell good since I hit puberty. They always wanted to know what I was using to smell so good. I didn't know what to say since I hated colognes and didn't use anything. I guess I've got nice smelling skin bacteria.

Not very complicated myself. Constantly editing things out of my life. However there always seems to be more. So it's a constant battle.

Decided to do the first shot of Egrifta tonight instead of in the morning. Glad I did. The process is needlessly complicated. Plus, they tell you to slowly inject the sterile water into the Eqrifta bottles and to aim for the side so the water flows gently down into the mixture.

What they forget to tell you is they've put a vacuum equal to outer space in the little bottles and as soon as the needle goes in the bottle cap all the sterile water shoots in like a water canon...and you can't stop it. It's that strong of a vacuum. I don't think they actually do any dry runs with this stuff before putting it out here. So I'll give them a call tomorrow and ask why this is.

Happy trails...
« Last Edit: February 29, 2012, 09:44:30 PM by LongTimeSurvivor »
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Offline LongTimeSurvivor

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Re: What a waist...
« Reply #8 on: March 29, 2012, 08:49:55 PM »
It's been about a month since I began Egrifta so thought I'd give a report on how things have gone so far.

First, I think my stomach now knows how a pin cushion feels...if a pin cushion could feel. It's not bad...I wouldn't even say it's tender. Just that I know I've given myself a daily shot for the past month and can tell where some of them were stuck in my stomach. However, it's not something I can't live with and it's not noticeable all the time.

Haven't had any of the major, kill-you-off side effects. The only side effect I might have had is the one concerning muscles and joints. However, since about the time I started Egrifta my exercise routine got harder...it's possible what I felt was the result of exercise and not Egrifta. The feeling only lasted about a week and I haven't felt any more stiffness since.

As to whether it's fighting the fat or not, I think I'd have to wait till at least three months in before I'll notice anything in that regard. It's not been difficult working the shots into my daily routine. I do it right after I get out of the shower. Figured out how to handle the "vacuum of space" the little med bottles have...well, at least enough so that the sterile water doesn't go in like a water cannon.

Okay, that's about it. If you have specific questions...ask away. I'll answer as best I can.
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Offline denb45

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Re: What a waist...
« Reply #9 on: March 31, 2012, 11:15:41 AM »
I recall my belly feeling like a pin-cushion while I was on Fuzeon (Enfuvirtide Injection) for a about 2 yrs. in 2006  :-[

 it got so bad I had to start using my legs, arms, and back of the elbows to inject twice a day, and I was sure glad when ISENTRESS (Raltegravir) came out in 2007
that meant no more Fuzeon injections  :)

how long are you going to be on the Egrifta treatments? is this a temporary Med?

thanks for the update, and good luck with your Egrifta treatments  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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Re: What a waist...
« Reply #10 on: March 31, 2012, 11:39:45 AM »
My understanding is this a a life-long regimen. You have to keep injecting for the rest of your life.

On top of that, I believe it is only about 30 percent effective.

Aside from the fact I could not afford Egrifta (my copay would be more than $400 a month), I really couldn't resign myself to life-long injections unless I knew it was life or death.

Keep us posted on how it goes with you.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

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Re: What a waist...
« Reply #11 on: March 31, 2012, 12:01:30 PM »

Aside from the fact I could not afford Egrifta (my copay would be more than $400 a month), I really couldn't resign myself to life-long injections unless I knew it was life or death.

LOL  ;D  yeah I hear ya Mark @ 55+ I'll just let my age dictate how I'm gonna look for the rest of my days, no No DRUG in the world is ever gonna change the way I look  ::)

"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline pozniceguy

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Re: What a waist...
« Reply #12 on: March 31, 2012, 04:58:37 PM »
I  have  found  the Egrifta to be really  effective.... it is covered by my insurance...but the  reality is that it  doesnt do much, if  anything,  for  subcutaneous fat  it only  really affects the internal  variety that surrounds the  intestines  , heart and other organs.... if you have a  family history of any of the  issues associated with   disease of the internal  organs  (  heart, kidneys,spleen, etc.) then you want to use this  to minimize  any effects that  the  increased fat accumulation may/will  have on that organ  (  almost a direct  quote  from my Dr... )  if  you have  accumulated  so much internal  fat ( usually very hard) that it is  bulging your  mid section  then this will definitely  reduce that.... but not the  usual  "belly fat" .
Contrary  to the  "determination"  made by some insurance/medical plans  it  is not a "cosmetic".

Nick
remember the good times...honor the past but don't live there
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Offline Joe K

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Re: What a waist...
« Reply #13 on: March 31, 2012, 05:31:13 PM »
I can relate to how you have a 38" waist, because my chest has grown in the past few years.  Jackets that used to fit me, no longer close over my chest without pulling and looking like the clothes are two sizes too small.  I just don't have the energy to be upset over this new development.  I can't fix it, so why worry.

Joe
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #14 on: March 31, 2012, 06:19:53 PM »
Well...thank god, my co-pay is only $50. That puts my co-pays a month to $200. Which isn't too bad...after all, I get my meds for that price.

The pin cushion feeling seems to be abating somewhat now that I've gone to a clockwise injection rotation. Even if I forget exactly where I did the last shot, just go far enough and I'm away from wherever it was last.

Like aztecan said...it's a life long routine. Otherwise the fat comes back. And it's the fat that I want to keep away since my family does have a history of heart disease. Why add that on top of AIDS.

Aztecan...since just about everything I have to take now is for a lifetime what's one more thing. The stomach shots aren't painful. Mostly a prick and sometimes nothing. Not like my butt shots which I feel each time. Of course, they're not that bad either. For someone who was deathly afraid of shots I apparently can adapt rather quickly to giving them to myself. I guess quality of life is a motivator.

And denb45...I think you're a rather attractive man. If this is what age does to you then sign me up.

Come the end of April I'll post another update. Don't expect any big news, just letting everyone know how's it going in case they're thinking of going on Egrifta.
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Offline denb45

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Re: What a waist...
« Reply #15 on: March 31, 2012, 06:43:04 PM »
@ Nick & LTS....lol you guys are too funny, you made me laugh tho, and I suppose if your Ins. company didn't cover this you probably wouldn't  like Egrifta  ;D

However I with Mark & Joe, if Egrifta really does what it claims, then that's a good thing, but for a lotta of us, (try telling that to your Ins. company) it's like pulling teeth  ::)

And here in New Mexico, Egrifta isn't even formulary like a lot of the newer Drugs are, and I doubt it ever will be  ;)

oh and LTS flattery will get you EVERYWHERE, and no where @ all  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #16 on: April 30, 2012, 08:42:47 PM »
Now two months on Egrifta. The ability to sleep for eleven or twelve hours has abated somewhat. It wasn't a matter of being sleepy...just once asleep I stayed asleep. But if I woke up after only about eight hours it did take a couple of hours to shake off wanting to close my eyes.

While I do have some initial discomfort (read slight pain) after some shots, it isn't an every shot thing. For the most part even if there is the discomfort it seems to go away within 30 minutes. Again the shots themselves don't hurt, sometimes a little prick but sometimes nothing. Still kind of a pain to do the mixing but for now just have to live with it until the company can change that.

My pants feel a little less tight. However I'm not measuring myself. When I see my doctor next I'll let him measure. Don't want to fixate on this. I do know I've lost some pounds. But some of that is probably a slight change in my diet. No longer doing protein drinks. They weren't full of sugar but I guess twice a day, every day does add up.

As far as I can tell I haven't had any other side effects. So at least in terms of tolerating Egrifta I'm doing fine. As to how it's affecting internal fat will have to report on that in two months after the doctor visit.

Still, if you have any questions in addition to the above just ask. I'll try to answer as best I can.
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Offline Theyer

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Re: What a waist...
« Reply #17 on: May 02, 2012, 05:50:21 AM »
I hope the Doc confirms what you are noticing.
I thought I had a mortal dread of injecting myself until I had too.Like you it was tummy shots but I cannot remember what the hell it was.
IT was at the end off chemo and if the Docs had said lick an elephant twice a day I would off ,  I was that bamboozled by the whole thing.
michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #18 on: May 31, 2012, 08:47:26 PM »
Now three months on Egrifta.

Sleep issues have pretty much abated. Sometimes hard to wake up but once up not a problem.

Shots go much quicker now and seldom have any discomfort. Even when I do, usually after the shot, it only lasts a few minutes and then I forget about it.

Saw my doc today and totally forgot to get him to measure me. I was focused on getting some other stuff done so I'd be cleared for surgery this coming Wednesday, June 6th. My weight has stabilized around 190lbs. Pants aren't tight but belly still seems round-ish.

Have started to have close calls with fainting. Not your usual faints though. Sometimes happens when I stretch. Other times when I'm coughing real hard. Blood pressure is normal. Heart is fine so not sure what may be causing it. Don't think I've read anything about fainting and Egrifta. But...who knows...

All in all, I don't find doing Egrifta to be that hard to keep up. Mixing could be faster but that's a small quibble. The main thing is waiting to see if the roundness lessens. But that apparently takes a while and "a while" is more than three months.

Okay, that's my three month report. Any questions...ask away...
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Offline LongTimeSurvivor

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Re: What a waist...
« Reply #19 on: June 29, 2012, 08:28:42 PM »
Just finished my fourth month on Egrifta. No side effects that I can feel at this point. Even the mixing routine goes faster now.

I have lost weight but that was from the fallout after my surgery earlier this month. Three days with no real food, being sedated, since I was on a ventilator. Then couldn't really eat once awake because my mouth just couldn't handle chewing. That left me 17 lbs. lighter. Not much better now. Have to go back on soups for a bit. Chewing just hurts too much.

So...kind of hard to say at this point if anything is happening because of the Egrifta. My stomach still has the six-pack but looks a little round to me even with the lost weight.

Guess I have to wait till I regain a lot of that weight and see where my measurements are at that point. That pretty much leaves me with nothing to particularly say about whether it's working or not working. Will update again in another month. Any questions...just ask...

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Offline aztecan

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Re: What a waist...
« Reply #20 on: July 04, 2012, 11:52:38 PM »
Give yourself time to mend. Be patient with yourself and don't try to rush the healing process.

Healing energy is heading your way.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #21 on: July 30, 2012, 08:39:14 PM »
5th Month...

No changes that I can detect. Still recovering from my unfortunate hospital stay. Have about 10 more pounds to regain before I'm back to my original weight. Stomach still looks round so no change there but haven't measured. Not sure if the numbers would be correct...

Will post some more after month six.
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Offline LongTimeSurvivor

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Re: What a waist...
« Reply #22 on: September 05, 2012, 06:52:10 PM »
6th month...

Still haven't regained my weight from the stay in the hospital. Without the extra poundage I feel like I have a round ball where my intestines should be. So it's hard to say what the Egrifta is doing for me.

No side effects that I can tell. Don't even think about the injections...I just do it in the morning after I shower. Sometimes forget that I've done it and have to think for a minute.

I may have to wait till 12 months to really see what, if anything, this has done for me. I should have gained back my weight and, hopefully, my muscles by that time and can compare the past with that present.

Will keep posting each month though...just in case something changes dramatically.
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Offline LongTimeSurvivor

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Re: What a waist...
« Reply #23 on: October 06, 2012, 09:18:29 PM »
7th month...

No change still. Actually wonder if my stomach has gotten harder and bigger. Doc wants me to keep it up for a couple of more months. I see him in November. If still no change then we're going to cancel the prescription. See what else there is I can try to do.

So...I appear to be one of the people who don't respond to Egrifta. I guess the upside is I didn't have to deal with side effects while finding that out.

Will keep reporting through November. Any questions...just ask...
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Offline AlanBama

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Re: What a waist...
« Reply #24 on: October 11, 2012, 02:54:46 PM »
Hey LTS

Well, no one can say you certainly didn't give it the "old college try".   Sorry it hasn't worked better/more quickly for you....but we know how these things go, right?   Some drugs work for some, not so much for others....   This is one I had thought of possibly trying, but don't think I'm up for MORE treatment routines than I already do.

Anyway, I think you look great just as you are.   Maybe we all need to tell ourselves, and each other, that we look good more often.   I have a lot of "issues", lipoatrophy of the face and other areas, and a big belly...but all in all I suppose I look pretty well to be 56 and have had AIDS for over 25 years....

BIG HUGS, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #25 on: November 01, 2012, 09:16:00 PM »
Last report on the Egrifta. Stopped using it. No reason to have loads of money spent on something that doesn't seem to be helping me lose the "extra" around my internal organs.

Had no ill effects from the use of it. So at least in that sense it wasn't a major hassle to try it. Still have my little six-pack volley ball. Which looks slightly larger than it had when I started since I STILL haven't gained back the 17 lbs I lost during that unfortunate several hour outpatient procedure turned into extended inpatient ICU Life Support/hospital stay back in June.

Anyway, that's it for me. Hope this has been of some help in terms of ongoing information on Egrifta use.
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Offline aztecan

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Re: What a waist...
« Reply #26 on: November 04, 2012, 11:47:08 AM »
Sorry it didn't work for you.

At least you were able to give it a shot, so to speak.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline LongTimeSurvivor

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Re: What a waist...
« Reply #27 on: November 04, 2012, 06:39:52 PM »
Speaking of...

...how's the back, etc.? Will you be showing pics of the new you soon?

Thanks for the thoughts. Not the end of the world.
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Offline kjohn

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Re: What a waist...
« Reply #28 on: November 11, 2012, 05:50:43 PM »
Lots of good stuff here to comment on...

First off, re: shots etc...I often say to people that I have evolved into a "professional patient".  All of us LTS have don't you think?  I don't flinch at shots any longer.  I was on Fuseon for a couple of years, and that was horrible...not really because of fear of giving myself a shot, but the site reactions were just ridiculous.  Pin cushion indeed!!  Thank God for Isentress and Intelence.  I had Hodgkin's a few years ago which required chemo / radiation and hundreds of needle sticks.  I got to the point where I would reassure the tech when they would miss a vein.  They always get nervous when that happens and I learned early on to just smile and tell them that they are doing a great job.  Works out better for everyone that way. :)

I have wanted to do Egrifta...but my Dr. won't prescribe it until I get back to SF for good.  I have been traveling for a couple of years.  he says that he needs to watch me closely once I start.

Nothing is ever as good or bad as it first seems

Offline kjohn

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  • Posts: 4
Re: What a waist...
« Reply #29 on: November 11, 2012, 06:06:34 PM »
Hey LONGTIMESURVIVOR.  Are you taking or recently stopped taking any sleep meds like Ativan, Xanax or Ambien?  If so, especially if you stopped them suddenly, you could be experiencing withdraw symptoms which would account for the "fainting".  Benzodiazepine withdraw can be a very serious matter, life threatening in fact.  Lightheadedness is a common side effect especially if you sit up too fast or stop the blood to your abdomen, like when doing certain stretches and then release them. 

My Dr. had me hooked on Halcion for many years and then when I switched from a boosted PI regimen to Isentress / Intelence / Truvada, I went into Acute withdraw as Norvir enhances any benzo or non-benzo sleeping aid as much as 2000%.  Yep, I said two thousand.  The most frightening experience of my life with symptoms that are indescribable.  I had to restart the Norvir and then taper off the Halcion, but many of the symptoms remain and can remain for months or years.

If interested, google Benzo withdraw syndrome and read the Wikipedia link.
Nothing is ever as good or bad as it first seems

Offline LongTimeSurvivor

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  • Posts: 173
  • I don'no...there may be Zombears...in theres...
Re: What a waist...
« Reply #30 on: November 17, 2012, 09:37:51 AM »
An unexpected update:

For those who may be coming off Egrifta for whatever reason...expect to have your emotions go nuts. Mine built for three weeks then crested a week ago. Didn't realize what was going on till this past week when I put two and two together.

Mine was so bad that I was considering disappearing for a few months or however long it took for me to feel like I could see anyone. A conversation with someone I knew would tire me out after a few minutes it was so hard to be near that person.

The upside, if it is one, is that things returned to normal with a day or two. Which is why I realized something else was going on and I wasn't going crazy...again. Anyway, that's the update. If you have any questions...just ask...
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Offline LongTimeSurvivor

  • Member
  • Posts: 173
  • I don'no...there may be Zombears...in theres...
Re: What a waist...
« Reply #31 on: December 03, 2012, 10:30:46 PM »
Officially off Egrifta. Canceled prescriptions and had the insurance company rescind the approval. My doc now wants to put me on Serostim. So...another adventure in pharmaceutical intake.

Will start a new topic when I'm on it. This one is getting long in the tooth.
Of course it's important. It's an email...

 


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