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Posts Tagged ‘lipodystrophy’

The Wednesday meeting on February 23 will be held in the main hall of the Pride Center and the topic is Egrifta. Our guest speaker will be Vern Appleby the Director Clinical Research at the office of Gary Richmond M.D. where the Egrifta studies took place and future studies will be conducted. We’ve booked the hall and Diplomnat Pharmacy is providing refreshments. I’d like to get a good turnout for this, so please come and invite your friends. -Steve

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Egrifta or Tesamorelin, an injectionable drug that reduces the fat buildup around the organs in the abdomen caused by many HIV drugs is now available through prescription. Many people on HIV drugs have this lipodystrophy or “Protease Paunch” where the stomach becomes large and hard and regardless of diet or exercise may not go away.

To get this drug, you have to fill out a Patient Authorization form and your doctor has to fill out a Statement of Medical Necessity form These forms can be found at Gary Richmond’s office (315 SE 14th Street in Ft Lauderdale) or you can get them from me. We will be discussing this drug and the forms necessary in the second half of our 12-29-2010 meeting.

-Steve

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On Wednesday, November 11, 2010, the FDA regulators announced approval of Egrifta, a first-of-its-kind treatment for HIV-associated lipodystrophy. Egrifta is a growth hormone releasing factor, given as a once a day injection, that works to reduce abominal fat in HIV patients. Drugs such as Crixivan, Viracept, Norvir and Invirase commonly experience an increase in fat depostis that can accumulate around the liver, the stomach and abdominal organs. Fat deposits can also form on the back of the neck commonly called Buffalo Hump.

In clinical trials involving more than 800 HIV-positive patients who took Egrifta daily for 26 weeks, patients reported improvements in self-image, as well as a reduction in abdominal fat deposits as shown by a CT scan.

In 2008, Vern Applebee from Dr Gary Richmond’s office came to our group and recruited some of our members for the clinical trials here in Ft Lauderdale. I was one of the recruits. The drug was then called TH9507 or Thera from the company that developed it.

I lost 7″ around my stomach during those 26 weeks and looked Fabulous. After the trials stopped and lost access to the drug, I regained most of the fat, as did other people from our group. The Egrifta people still need to do a maintenance study and there is talk that some of that study might be done in Ft Lauderdale. I will keep you updated on the study.

-Steve

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We set a new record, 42 guys showed up to talk about Facial Wasting. We’re becoming the place to be. Come join us!

We defined facial wasting as the fat loss from the face and one of the components of lipodystrophy. Although it’s not exactly known what causes fat to waste from some area and redistribute in other area, as many as 48% of people taking HIV-drugs may experience it. Most doctors now believe that nucleoside analogues such as Zerit and AZT may be the cause and not Protease Inhibitors.

Reversing facial wasting can partially be accomplished by switching drugs, but this may only partially correct the damage. We discussed a couple medical procedures, Sculptra or New Fill, Radiesse and Silicone.
Silicone is not approved for facial wasting, but some doctors are using it off-label. Radiesse is temporary, but immediate. Sculptra is longer lasting, approximately two years, but takes a month or so to generate the collagen.

We watched a video from Mark S King and ‘My Fabulous Disease’ about a Facial Wasting Procedure he video taped.

We discussed the cost. Sculptra and Radiesse have Patient Assistant Programs that will provide the drug for free for low-income patients, but you would still have to pay the doctor for the procedure. This might be several hundred dollars per visit and you might require 4-6 visits.

In March, 2010, Medicare approved covering the cost of facial filling treatments for HIV patients who are depressed.

Occasionally, some local doctors offer special programs where they cover these procedures for low-income people. The Wellness Center and Project Link has made these offers public a few times. When we hear about these, we will pass the information along in the website.

We also talked about the stigma people with facial wasting feel. Athough, facial wasting itself is not a dangerous health risk, it can have a serious impact on emotional and mental health. Many people with facial wasting may feel stigmatized that the facial wasting is an “HIV tattoo” indicating to the world their HIV status. This could result in a loss of self confidence and self-esteem.

After break, we discussed the Three Thanksgiving dinners coming up. Fusion is having a Pot Luck dinner on Thursday November 18. The Wellness Center is having a Thanksgiving luncheon on Saturday November 20. And Sunshine Cathedral is having a Thanksgiving Day dinner open to all. Information of these activities are in other blogs and on our calendar.

14 or us went to Peter Pan where we continued the conversation.

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