POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: rd97 on February 24, 2011, 03:58:35 pm
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Hi there--
I am starting treatment with Egrifta today. Has anyone else started? Anything you would like me to report?
My lipo began in the late 90's. Went off meds from 2002-2008, and my body kept VL and CD4 in check. Resumed meds (Atripla) in 2008, due to lowering CD4's (400 range). Within 6 months gained 70+ pounds. Replaced Atripla with Truvada and Isentress. Lost a little, but not much. Last year, working my Doc, switched to Selzentry, Intellence and Isentress. Lost about 30 of the 70 gained very quickly, but have stabilized. Our belief is the nuke class doesn't do well with me. Agreed a good candidate for Egrifta, as most of my weight is VAT in my abdomen.
Now trying Egrifta, will let you know.....
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I'd love to hear how this works out for you, though as someone on ADAP I imagine I have a, um...fat chance of ever getting to try it myself.
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I'd also like to know how this works out for you. Are you at all concerned about the potential for insulin resistance associated with this drug?
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I will keep you posted. Yes, I am concerned about the insulin resistance associated with Egrifta. Will be monitoring and also seeing an endocrinologist to try and mitigate anything. When the lipo came back strong, I started seeing an endocrinologist and did an entire battery of tests in an attempt to see if anything else was contributing to the metabolic issues. All was normal. A decrease in VAT should help insulin resistance--careful monitoring I think will help.
I consider myself fortunate that my insurance is covering Egrifta 100%. Thunter, have you checked the assistance programs in place?
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Please let us know if you see any increase in your TCell count while on Egrifta. If you're still about 400, you may see some improvement based on studies of HGH and TCell increases at the Gladstone Institute.
I know of one person that went from 300's to 700's after using HGH for six months or so, to combat wasting syndrome. He was in his early 30's, so that probably was a factor.
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Hey Mitch, I will let you know. My Tcells are in the 800-1,000 range after going back on meds, higher after the switch to Selzentry/Intellence/Isentress (not taking that as salvage, but as a lipohypertrophy avoiding combo).
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just got my Egrifta kit today will start over the weekend to see how body responds to initial injections . Dr says will monitor for Diabetes very often over the first few months .. may even have me use a blood sugar monitoring device if there is any indications of serious effect.
supposed to have a good chance to reduce waist size by at least 10% .... I hope so...
Nick
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R2D2
Sounds like with a TCELL range already at 800-1000 you're unlikely to see any improvement. Seems like you're at normal range now.
Let us know how you're getting on. I have a friend w/a huge mound of abdominal fat. I told him about egrifta, but his doc won't give it to him for fear of diabetes. He's African American so there is a higher incidence in that population.
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Hi ,
I am curious .. Is there any improvement ?
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Just got my Egrifta and gave myself the first shot about an hour ago. Pretty simple mixing and injecting. Curious to know how long it will take to see or feel effects of the drug. Anyone who has been on it for a while may be able to lend some advice/experiences. BTW, I am recieving Egrifta through the AXIS Center via Serono through the Patient Assistance Program at NO cost. The process was slow, but relatively easy. Fingers crossed.
Ramon in Otown
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Took my first Egrifta shot today. How long before I will notice a difference
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Hi guys,
I just passed the 60 day mark and had a follow up with my docs on Tuesday. The most visible sign so far has been a softening of the fat. It is not as hard and I can move it, pinch it. There have also been reductions in measurements, and I am noticing a slight difference in the fit of clothes.
From discussion with both docs this appears to be on track with more results coming in the next 60-120 days. I am monitoring a1c and igf levels for any variances.
Good luck starting and let's keep in touch on our progress.
Bob
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Bob,
Thanks for the update. I am on week three and my doc said it would take the 60-90 day range to strart to notice changes. At least the needle sticks are not bad. I have yet to travel and hope the carry kit they provided will work for my overnight trips. Keep up posted.
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Hi RD,
Been on Egrifta since mid march 2011. The one side effect is my blood sugar went up and am now on medication for type 2 diabetes. I do have a strong history of diabetes in the family so it might be coincidental.
Otherwise can't complain. I'm tolerating it much better than I did the serostim I tried years ago that gave me alot of dicomfort with infammation in my joint.
So far so good. Wishing you luck with your treatment.
Tonyb326
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Hey Tony, Nico and others,
Are you beginning to see any improvement?
Bob
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Bob,
I have only been on the stuff for about 40 days. The area seem softer and not as hard as it used to be. I hope that is a sign it is working. Plus I am focusing more on my abs in the hope I can take advantage of the impact of the drug and decrease my gut.
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I just got off my oral diabetes meds and I am going to try to lose more weight before trying.
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been on for over 3 months now definate improvement...hard fat gone softer area there now down 1 1/2 inches of waist overal weight about the same....I think it works
Nick
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I am in my third month. I have noticed the fat is softer and I feel like it is working. Has anyone else noticed other changes ?
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hey guys,where can i get this drug i do hope it's not in thailand yet? i hope it will work for reducing abdominal fat.
because my stomach worries me most.
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so does it mean that nobody could give me a bit explanation for it in thailand?
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sanitex - Would suggest searching Egrifta or Theratechologies in Thailand to see if it is available for you
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I just started Egrifta 4 days ago and it took 4 months for me to get a prior auth for my insurance. The only thing I've noticed is a spike in my blood sugar. I come from a family of diabetics but my blood sugar normally runs low....I checked my blood sugar BEFORE the injection and it will be 68-70 and 30 minutes after the in jection it will jump to 150- 160. I'm hoping this will stop after my body gets used to it. Thanks to all of you who have posted what you are noticing after 30 or 60 days on this. Due to the PI's in the nineties and the side effects I refuse to even consider adding one into my regimin. I've got a great DR here in Dayton and he allows me to research any drug before adding it to my regimin. In 2001 my Tcells were 21 and the VL was too high to count...the DRs in Ft Lauderdale sent me back to Ohio to "get my affairs in orders" after going in and out of the hospital with PCP Pnuemonia. Been a long road but I'm alive and kicking
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Started Egrifta about 2 weeks ago. I'm noticing differences already. My GI problems have decreased, as have my neuropathy symptoms... also noticing my stomach is less hard, and it may be my imagination, but I think I'm starting to get a waist again... anyone else had similar experiences? I've had no side effects so far...
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Sorry to be so ignorant, but what Egrifta and why does it seem to hold the hope of a miracle drug???
Donna
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Hey Donna , here is an explanation and website with more info:
The U.S. Food and Drug Administration today approved Egrifta (tesamorelin) to treat HIV patients with lipodystrophy, a condition in which excess fat develops in different areas of the body, most notably around the liver, stomach, and other abdominal organs. The condition is associated with many antiretroviral drugs used to treat HIV.
Egrifta, the first FDA-approved treatment for lipodystrophy, is a growth hormone releasing factor (GRF) drug that is administered in a once-daily injection.
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm233516.htm
It is specifically for the treatment of visceral adipose tissue that is a result of lipohypertrophy.
However, it could result in insulin resistance and/or diabetes in some people. It must be injected daily by the patient.
Also the VAT will return if the Egrifa treatments are stopped.
Lipohypertrophy is usually seen in people who were on the first HIV meds, which had more severe side effects. Newer meds are less likely to cause it.
Egrifta isn't known to be effective against subcutaneous fat.
Just some info for you.
HUGS,
Mark
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I have been taking Egrifta for 60 days and can see and feel a positive difference as my fat is getting easier to pinch, not as hard. No side effects so far...Really feeling better all the way around.
Until Medicaid Utah suddenly reversed and is refusing to pay for it. I'm trying the assistance route, hopefully that works. My doc tried to fight for me as the fat is pushing my lungs and heart which is very distressing to say the least. I have upper lobe Emphysema so the lung capacity is quite diminished and more each day the fat increases. I get out of breath tying my shoes! Medicaid Utah won't even consider a reversal.
Wish me luck!
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Hi Guys,
I discontinued Egrifta a couple of months ago, as my IGF number skyrocketed and I was getting pain in my fingers (carpal tunnel like). All of us being treated by my doc in San Francisco have stopped. Fingers are now fine, (was told it was growth happening), but the hardness is back. Next step--maybe try different dosing....
Bob
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Hey all,
I have been "shooting up" with Egrifta for a little over five months. For any newbie, the injection is not painful only the anticipation.
I was worried about increased glucose, but I just had my labs and things were normal. In fact, my doc paid a visit while I was having my monthly IVIG and she noticed my gut was smaller and my arms and legs were fatter (more normal). First time I wanted to hear that.
I have noticed that my body has changed and in fact my legs are looking better (no veins popping) and my arms are not skinny. My waist has shrunk and the fat that remains is below the belt and not bad. Being where I was five months ago and today, I am pleased. If I get off my ass and start soccar or running again, I am sure I will be even more pleased!
Bottom line, the stuff works and after some time, you can skip a dose (just talk with your doc). I may skip once a week when traveling since the drug need refrigeration.
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Oh if they could just put it in a pill ???
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hey ya'll.....just finished my 10th week of egrifta......a little background.....i'm a 57 year old white male....been poz since 1992......450-550 t-cells usually & undetectable viral load "forever".....was on truvada, reyataz & norvir for about 2 years until about 3 weeks ago......now on truvada & isentress......had a nasty buffalo hump, viseral belly fat, lots of subcutaneous fat, mostly around the sides of my chest, like under my arms & upper back....started when i was on crixavan ( i think) way back.....about 4 months ago, my lipo issues seemed to "spike"......i lost a little weight (on purpose), started exercising more (bike riding 100 miles a week), eating the right foods, etc, but the lipo thing was awful......my clinic doc thought i was imagining things, so i became very proactive.....my research of patient surveys, etc, showed that reyataz & especially norvir do not like white males over 50......i think the male body undergoes certain homonal (male menapause) changes that cause the lipo effect of these 2 drugs to magnify......anyway, ditched them for isentress, had my god-awful hump cut out on august 2nd, and started egrifta 10 weeks ago......feel great.....noticed fat changes after 2 weeks......viseral belly fat noticably decreased, sub-cutaneous fat also decreasing, which is great....as has been published, egrifta was not studied for effects on subcutaneous fat, but i definitely notice a difference.......also, my butt, arms & legs have filled back out a lot.......doing my first labs since starting egrifta next week, so will see about glucose levels, etc.....hoping for the best......i'm 145lbs & following a great mediteranean diet, along with much bike riding & weight trainiing 3-4 days a week.......the only side effect i have noticed is joint pain that kinda sucks, but it is not terrible & i intend to discuss it with my doc when i see him next month.....it is my choice not to stop treatment or talk to him about it as of yet, as i am seeing great results & the pain is tolerable.....btw, my doc did not know anything about egrifta until i told him about it & said i wanted to get on the program.....about par for clinic docs who think their patients should consider themselves lucky to be on medicare & meds & the hell with self image, etc., issues......found the "hump" doctor myself, too.........hopefully with the med change & if i can continue on with egrifta, the lipo hump on my neck will not grow back......if it does, i'll get it cut out again!.....anyway, that's it for now.....will post again after lab results & my next doc visit......wishing all the best....xxooxxooxxoo.....michael :)
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Thanks for the detailed update, Michael. :)
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I have the hump and a very thick neck. I also have Popeye arms. It looks like I have muscles but I don't. I just have weird VAT. I have a gut but I am considering Egrifta because the fat distribution is causing pressure on my upper spine and neck. I wonder if it will help. The chance of getting cancer scares me and I care for my Mom who does not know about my condition. Pills can be explained but injections are a bit more complicated. I of course need to get serious about diet and exercise. The Norvir, Truvada, and Reyataz have bought me time but have created these secondary problems. I am praying about this. :-\
Thoughts? :)
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7 months of Egrifta have helped me lose 15 pounds, but only an inch on my big waist.
The side effects have not been minimal as I have lots of joint pain and muscle stiffness.
My belly fat is softer, and I can pinch more areas than I could before.
But ultimately I am not sure it is worth it. I keep hearing that the fat would just fall off and I would notice dramatic differences.
It also gives me the munchies during the night, so the weight loss is even more admirable.
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I just started my 8th week on Egrifta and have noticed some changes, namely my belly fat is becoming less firm. My waist size has also dropped 1 inch. It appears as the fat is slowly being broken down. I am pleased so far with the results. I am hoping it may help with the buffalo hump and neck fat deposits. While I don't see a reduction in these areas, I have been told by others that it appears to be reduced. Mixing and administering Egrifta is simple and the needle is very small and does not cause any pain as long as you rotate the site each day. I have had some minor bruising at the injection sites, but nothing too bad. I'm hoping they will make the preparation procedure easier as time goes on (something like my daily diabetes injection in which I use a pre-mised pen needle). I initially had problems getting my insurance company to approve Egrfita. I went through the Axis Center (Egrifta's help center) which was supposed to assist but did nothing. I worked with my insurance company and found that it's covered as a medical procedure which greatly reduced the cost. Once my co-pay is paid for the year, I pay nothing for the drug and all supplies are included.
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We seem to have lost this thread. Perhaps others, like me, have given up on Egrifta.
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I to would like to continue to hear from all you taking this Med. Is it worth it or not. Or do we just need more time?
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Just started Egrifta about 3 days ago. So far I have noticed the increase in my blood sugars and do have some joint pain too. Nothing to severe yet. I do hope to hear more from our long time users.