My Egrifta Supply Kit Arrived Today


[Click to view the photo larger.]

It contains (from left to right):

  • 60 vials of the medication
  • a sharps container
  • alcohol swabs 
  • the injection kit 

The injection kit contains:

  • 30 vials of sterile water to reconstitute the medication
  • 30 sterile 3ml syringes with the needles attached
  • 30 individual 18g sterile needles
  • 30 individual 27g sterile injection needles 

It arrived in a big cardboard box with the medication in a cooler with an ice pack.  I haven’t opened the boxes yet. I’m saving that for next Friday when I see my nurse to learn how to administer the injection.  After they’re open I will post photos of the individual supplies.

I think that I’m going to keep a record of this journey.  Not only for myself, but for others with HIV who follow this blog and are curious.  In addition to taking photos of the supplies, I will make a video of the procedure once I am confident in my ability to administer the drug to myself, and once a month I will take a photo of my midsection to see the progress made.

I appreciate all of you for your continued support.  I love you all.

anonymous said:

I want to approach my doctor and talk about Egrifta for my pot belly, but I am worried about visceral fat returning if and when I discontinue. Are there any HIV drugs that I can switch to that do not cause lipodystrophy, or is the VAT regain inevitable? Sadly, my doc just rubber stamps my prescription refills, so I need to do the homework on what is best for me, drugwise. I follow a strict low carb diet, work out 5 days a week, have a BMI of 30 with a 38 inch waist, and currently taking Atripla.

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First, Atripla does not cause fat accumulation.  If you have visceral fat accumulation, it’s more likely to be due to prior medications.

However, a “pot belly” is not necessarily a side effect of medications.  Most pot bellies are due to subcutaneous fat, which, while undesirable, is physiologically normal. The kind of fat accumulation that can be treated with Egrifta  (tesamoralin) is accumulation of visceral fat: fat inside the abdomen, not under the skin.  You can pinch a roll of subcutaneous fat, but you can’t pinch visceral fat.

Whether it’s visceral or subcutaneous, exercise and diet will help. If you really think it’s visceral, then Egrifta may help too, but as you point out, it only works for as long as you’re taking it.

Long Overdue.

I know it’s been quite a while since I did an update on how the Egrifta process has been going. Really, I guess that’s because I’ve been feeling as though I’m moving beyond it all.

I am not seeing the results I was hoping to have had by now, and honestly I’m just tired of the process. I’m sick of stabbing myself with a needle every day, I’m sick of psyching myself up for the process, and I’m sick of hoping and praying that it’s gonna work.

Over the last few weeks or so, I’ve had sort of an epiphany about the whole thing. I mean, I have kinda come to accept that this may always be my body now. I am no means in love with that idea yet, but I think I’m getting there.

I still have a lot of bad days, especially when I’m around girls I think are prettier than me, but I’m having far less of them than I was just a month ago. And I still have a really hard time looking at photos of myself from two years ago, but I have found myself looking into the mirror and being a lot more confident in myself than I have been since the lipo kicked in.

Really, I think I’m developing a real sense of apathy to whether or not I look the way I used to or not. I mean, we all get older. All of our bodies change, but there is beauty in that. There is beauty in the people we become, with the wisdom we acquire. We aren’t the same people that we were just five years ago, why should we look that way either?

And I think it has helped a lot that I have started following a lot of body positive blogs lately. It makes me feel a lot less alone to know that other people struggle with similar issues. They might not be caused by the same things, but at our core we all just want to love ourselves for the beautiful, sexy, and miraculous beasts that we are, and goddamnit if we shouldn’t.

There is no shame in the way my body looks. My body is a fucking survivor. So what if I have a chin like a bullfrog, or if I’ve got the belly of a beer guzzler? That’s not my fault, and it’s part of the way my body continues to survive. Fuck all the noise I’ve been listening to about that not being good enough. That’s more than good enough - that’s perfect.

I have a man who loves me and finds me sexy still. I have two animals that make me laugh every day and fill my heart with joy. I have a brother who teases me and brings me food I love. I have a gift for words that makes me feel like the most important person on the planet. I have a book I am pouring my heart and soul into. I am learning to draw and that makes me smile. I have laughter and joy and love and passion inside of me, and that’s what really matters. I’m beginning to understand that now.

So yeah, I don’t care so much anymore if the Egrifta diminishes the lipodystrophy. Sure, it would be nice, but there are much more important things for me to focus my energy on than my fat deposits.

anonymous said:

The mystery of the expanding stomach, part 2. For the fat that jiggles, fewer calories and more exercise do the trick and away it goes, more or less. (If everybody who has gone to fat is on HIV meds, then the HIV epidemic is much larger than previously estimated) What about the visceral fat? I know there's the Egrifta but I've heard it doesn't take hold and that the fat returns once you stop the shot. Any miraculous visceral fat burning molecule presented at a meeting lately? I'd buy it.

image

Egrifta (tesamoralin) is the only thing we have right now, and as you point out, it only works for as long as you’re taking it. It’s also very expensive. Exercise and diet can help too, but they’ll burn the subcutaneous fat before they burn the visceral fat.  Sorry—wish I had more to offer!

Progress?

I weighed myself today for the first time in weeks, and I’ve lost nearly 8lbs since starting Egrifta.

I want to get excited about it, but really I’m just scared that it’s all a coincidence and that the Egrifta isn’t working for me. =\

I keel telling myself that I haven’t been able to lose even a single pound since developing lipodystrophy, and I haven’t changed my diet or exercised differently than before starting the injections. That has to mean something right?

If I get under 160lbs (meaning that I’ve lost more than 10lbs) then I’ll feel comfortable saying that the shots are working.

I’m really just scared of getting my hopes up only to have them smashed.

Edited to add: The coolest part is the I am finally able to wear my ring again! It’s a little tighter than I normally like, but for the first time in months I don’t have to wear it on a chain around my neck. I know it’s silly, but it means a lot to me to be able to wear the ring my love gave me. Now if only I would wear my second favorite one. ;)

anonymous said:

Does Egrifta work? Is there any proof that the truncal fat loss is good for a person? Will insurance pay for it? Has anybody stopped it after a while and maintained the wasp waist?

Egrifta (tesamoralin, or growth hormone releasing factor) does work to help get rid of visceral fat: the kind of fat that accumulates inside your abdomen and that was associated with the use of older antiretroviral regimens.  Insurance will often pay for it if it’s being given for the right reason.

Egrifta should not be taken for the kind of fat that we all accumulate as we get older: subcutaneous abdominal fat (a “spare tire.”)  If you can pinch your fat between your fingers, it’s subcutaneous fat.  If you have no pincheable fat but have a distended, somewhat pregnant-appearing abdomen, you may be a candidate for Egrifta.

We know that having truncal fat (especially visceral fat) is bad for you from a cardiovascular standpoint, and we have pretty good evidence that losing that fat is good for you.  However, we don’t know whether losing the fat using Egrifta is good for you. It probably is, but there are no data.

The downside of Egrifta, besides its high cost, is that it only works while you’re taking it.  Fat tends to return when you stop the drug unless you’re making major lifestyle changes.  For that reason, we see the best results in people who are using Egrfita as a “bridge” while engaging in vigorous diet and exercise programs.  You’re not going to be able to take Egrifta forever, so you need to have a plan for what to do when it stops.

Egrifta should be used very carefully (or not at all) in people with diabetes.

30 Day Challenge - Day 5

Before I get to the challenge, I finally spoke with my doctor today about my blood work and such.

My counts are still fabulous, so yay times a million!

My cholesterol is still high, but it’s gone down by about 20 points, so hopefully by continuing to take fish oil and with a better diet (heh) I will continue to see improvement. She said that my age and sex are in my favor when it comes to cholesterol, so that’s good. If things done get any better, she said we could think about removing one of my medications to see if it helps, but I really don’t want to do that unless I absolutely have to.

Some not so great news though is that she got a fax from the center that supplies Egrifta saying that I am going to have to reapply for it AGAIN. Neither if us are quiet sure what the hell that is about, but hopefully it’s just a matter of refilling out paperwork and not them taking it away from me because I really don’t think I can handle that right now.

*sigh*

Anyway, on to the challenge and it’s whopper of a downer today.

Day 05 - A time you thought about ending your own life.

I would like to say that I have never been in that headspace, but I have and I probably will again. Having bipolar disorder = occasional suicidal thoughts. It’s just a fact, and once I accepted that, it made it easier for me to get through those episodes. It’s all a matter of remembering that it truly is a cycle, and that given enough time the urge will go away. Of course, slugging through that time is easier said than done, but I’m still here, so there has to be something to say for that.

And that’s where I’ll leave this question.

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