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Author Topic: Weight gain on Harvoni?  (Read 13214 times)

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Offline pansy

  • Member
  • Posts: 40
Weight gain on Harvoni?
« on: March 23, 2016, 12:51:08 am »
I've noticed weight gain, recently, on Harvoni.

I gained weight on prednisone, and was looking forward to losing  it, after the taper off, (down to 1mg) but it seems since Harvoni, I'm gaining weight .

I eat normally, don't use salt, limited sugar (in coffee only)
the weight gain is a mystery.

Has anyone else had weight gain, and how did you deal with it?

Thanks!

pansy
« Last Edit: March 23, 2016, 05:26:58 am by pansy »
Diagnosed 2002, geno: 1a.
Treatment naive.
Started Harvoni 3-3-2016
ALT: 78 AST:60 VL  = 6.3
3-17- 2016 (2 wks Harvoni)
ALT: 16  AST: 21 VL = 2.2
3-28-2016  (4 wks Harvoni)
ALT: 17  AST: 21 VL = Undetected
4-14-2016 (6wks Harvoni)
ALT:17 AST:22 VL = Undetected
4-25-2016 (8 Wks Harvoni)
ALT=18 AST= 21 VL=Undetected
5-9-2016 (10 Wks Harvoni)
ALT=16 AST=25 VL=Undetected
Finished Meds 5-25-2016
5-30-2016 (12 wks Harvoni)
ALT=18 AST=24 VL=Undetected
6-27-2016  (4Wks EOT)
ALT=19 AST=24 VL=Undetected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Weight gain on Harvoni?
« Reply #1 on: March 23, 2016, 07:42:53 am »
Hi again, Pansy. Yes, Harvoni gave me a voracious appetite. It also gave me more energy, so I gained only 1.5# during the twelve weeks of treatment, but I gained another 6# in the first few months after the end of treatment, when I no longer had the extra energy. By January, I was actively trying to lose weight in the conventional ways, but the weight was not coming off and I was always feeling hungry.

Then I read the book Always Hungry? by Harvard endocrinologist David Ludwig. In recent years, there have been a lot of excellent scientific experiments by Dr. Ludwig and others (published in the top medical journals: JAMA, The Lancet, NEMJ, etc. -- all documented in the book) that have led to a solid understanding of how to get fat cells to release stored fat, reset one's metabolism, and keep one's energy level from plummeting between meals. The book includes menus and recipes for putting his plan into action.

On February 22, I began using his principles and coming as close to his actual plan as I could given that I am on warfarin and must monitor how much Vitamin K is in the foods that I eat. I lost 5 pounds in the first two weeks and have kept them off during these next sixteen days, so it seems that I did successfully reset my metabolism.

Whether or not you end up trying his diet plan, the book is worth a read just for the scientific understanding it provides. Plus, I've found some recipes I really like.

Good luck!

Gnatty
« Last Edit: March 23, 2016, 07:45:06 am by gnatcatcher »
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline brie41

  • Member
  • Posts: 191
Re: Weight gain on Harvoni?
« Reply #2 on: March 23, 2016, 08:06:55 am »
Hi,

  I actually have lost a few pounds in the last 8 days of starting harvoni.  I am eating light to avoid heartburn and just trying to eat as healthy as possible.  Are you drinking enough water?  I am really keeping up with it as the headaches are threatening if I don't!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Weight gain on Harvoni?
« Reply #3 on: March 23, 2016, 08:39:15 am »
The ongoing problem with any liver disease that leads to cirrhosis is the inability of the liver to metabolize food as well as it should.


When you have even minor liver damage due to a disease like HCV it will effect your ability to metabolize food. Remove the virus and suddenly you will start to process food more efficiently. Unfortunately in the case of us over nourished westerners this means that we begin to efficiently store this extra nourishment as fat.


The human species has evolved to have a high resistance to starvation and our system has evolved to store excess foods as fat. We live in a society that on the one hand has abundance but our heritage was to endure long periods of famine which we no longer suffer. So obesity has become a plague of plenty here in the West.


I can fully understand why many of us will have a hard time adjusting to having more normal liver functions once we clear the virus.


You can get over the constant hunger but it is hard to get over the belief that one is starving every time that we feel even the slightest pang of hunger. Slowly as our livers deteriorated our appetites waned. The individuals that I know that have died of this disease lost their appetites slowly over many years but did not lose weight until the very end stage and some lost no weight what so ever at ESLD.


Before Harvoni treatment I was starting to lose muscle mass but at the same time I was starting to retain fluids so my weight stayed the same. My cirrhosis was starting to make me lose my appetite so I knew that I did not have much time left before my liver and kidneys would start to shut down. So the shock of having a normal appetite for me was quite sudden and I did put on about 10 lbs during treatment. 


Gnatty is correct we can unlearn our unhealthy habits of overeating just to satiate hunger.


The times that I have been less hungry is when I have done the most physical work and found that the truth is that the so called food guides are at best "out to lunch" when it comes to what we really need in terms of nutrition to remain healthy.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Weight gain on Harvoni?
« Reply #4 on: March 23, 2016, 11:44:44 am »
Eric (Mugwump), you've expressed it well, both concerning our livers and when you wrote, "The human species has evolved to have a high resistance to starvation and our system has evolved to store excess foods as fat." Dr. Ludwig does a thorough job explaining how to convince our fat cells that we're not in fact starving.

I'm very glad the good HCV treatments came along in time to save you and sorry that you lost people you knew to HCV.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline pansy

  • Member
  • Posts: 40
Re: Weight gain on Harvoni?
« Reply #5 on: March 28, 2016, 02:10:46 am »
Thank you all, for your replies!
I appreciate the feedback!


pansy
Diagnosed 2002, geno: 1a.
Treatment naive.
Started Harvoni 3-3-2016
ALT: 78 AST:60 VL  = 6.3
3-17- 2016 (2 wks Harvoni)
ALT: 16  AST: 21 VL = 2.2
3-28-2016  (4 wks Harvoni)
ALT: 17  AST: 21 VL = Undetected
4-14-2016 (6wks Harvoni)
ALT:17 AST:22 VL = Undetected
4-25-2016 (8 Wks Harvoni)
ALT=18 AST= 21 VL=Undetected
5-9-2016 (10 Wks Harvoni)
ALT=16 AST=25 VL=Undetected
Finished Meds 5-25-2016
5-30-2016 (12 wks Harvoni)
ALT=18 AST=24 VL=Undetected
6-27-2016  (4Wks EOT)
ALT=19 AST=24 VL=Undetected

Offline kimlav

  • Member
  • Posts: 24
Re: Weight gain on Harvoni?
« Reply #6 on: March 28, 2016, 12:03:43 pm »
Hi Pansy,

I recently completed 8 weeks of Harvoni and I did gain about 5 pounds overall. I was worried about it and ate healthy but I really think it was fluid retention and bloating. Indeed, when I had my blood pressure taken at 7 weeks, it was slightly high and I never have high blood pressure. I believe high blood pressure causes fluid retention. The first two weeks were the worst and it gradually levelled off. I was starting to feel it levelling off about the 7th week. I ended treatment on March 16 and am mostly back to normal now.

I had very little side effects otherwise. The odd dizzy feeling or a second or two of a flash headache. I feel very fortunate for that and a little guilty when I read of the problems some are having. I am very curious as to why that is and read this forum voraciously. As a previous and somewhat on going ostrich, I now cannot consume enough information.

And now I wait for results. My AST and ALT were significantly decreased at 2 and 4 weeks but I did not get a viral load test until EOT.

Kim
52 year old female
Geno 1a
Contracted in the 80's
Tx naive
vl 657,000 in Nov/15
No liver damage
ALT prior to tx: 107, 91 - 41 at 2 wks, 38 at 4 wks
AST prior to tx: 59,72 - 45 at 2 wks, 37 at 4 wks
started 8 wks Harvoni on Jan 21/16
EOT vl <12 detected
4.5 wk EOT vl - target not detected! RNA Not detected!
12 wk EOT vl - target not detected! (Will never get tired of typing that)
24 wk EOT vl -  not detected

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Weight gain on Harvoni?
« Reply #7 on: March 29, 2016, 12:11:41 pm »
Pansy, I've gained a few pounds since starting Harvoni, but I had been on a bit of a weight upswing prior to starting due to emotional eating while awaiting the state's IMR decision.  Some have written about improved taste while on treatment. I'm trying to drink a glass of water instead of eating food when I'm feeling hungry, as I've never been good about getting in the recommended amount of daily water. It seems to be working to get these few # under control. Also, if you're feeling more energy, exercise more as that's another way to counteract increased food intake. I guess I'm feeling that if gaining a little weight is what it takes to reach SVR, I can deal with it! FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline LeslieR1234

  • Member
  • Posts: 4
Re: Weight gain on Harvoni?
« Reply #8 on: April 07, 2016, 11:59:02 am »
Pansy
I too have gained about 7 pounds. It seems like after I take my pill, I get very hungry. I have always been prone to sweets, carbs, etc, but I have gained weight. I have 12 days left. My labs are great (checked at about 5 weeks). Hopefully the weight will come off when my treatment is done. It makes things uncomfortable. Good luck to you.
LeslieR
Genotype 1A
Diagnosed 1985 Hep C
Fibrospect F2-F4
HCV RNA 875,000
Treatment Naive
Started Harvoni 1/27/16
Lab Results on 3/1/16
HCV Viral load, undetected.
ALT just 5 points over range (all labs have been abnormal for the past 25 years)
EOT lab results HCV undetected
ALT and AST slightly elevated .

Offline Rocket Girl

  • Member
  • Posts: 40
  • Harvoni Treatment: January 23rd 2016
Re: Weight gain on Harvoni?
« Reply #9 on: April 07, 2016, 03:05:24 pm »
Just an update. Half way thru Harvoni Treatment (12 week course) I was feeling pretty bad. There is no substitute for lots of clean water and whole foods!  I cleaned up my act and started feeling better within days!  Next Friday, the 15th, I go for my 12 week lab draw. After 4 weeks, my viral load went from 7 million to less than 15!
M
Started  GENERIC HARVONI: 1-23-2016
Female:  57 yrs old
Infected:  1987
Diagnosed:  2002
Treatment Naive
Genotype:  1A
Fibrosis Stage 2
Alt:  37
Ast:  48
Viral Load:  7 million
4 Week Labs: < 15
12 Week Labs: NOT DETECTED
3 Month Post Therapy Labs:  NOT DETECTED

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Weight gain on Harvoni?
« Reply #10 on: April 07, 2016, 04:13:39 pm »
Yes Mugwump...the "thrifty gene theory" the gene of abundance.  I never related the idea to HCV until now.

Panzy, my apatite never ceased.  My pie hole has been open and eager ever since the 1st week of tx.  I am 27 eot weeks out now.  Yes I gained about 10 lbs over that time and it has to do with me just giving into a voracious apatite.

I wonder.  Since we were not processing the foods we eat while infected...is that not a slight starvation with respect to metabolizing nutrients.  After cure and even after our livers heal, maybe we are still "thrifty" and packing it away.  Better to have an apatite though... than not.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline pansy

  • Member
  • Posts: 40
Re: Weight gain on Harvoni?
« Reply #11 on: May 15, 2016, 08:04:00 pm »
Thanks to brie41, gnatcatcher, Mugwump, kimlav, FT, LeslieR1234, Rocket Girl, beto, for replies!

Gnatty, I will check out that book.

FT, drinking water instead of eating that chocolate covered donut is a good plan!
My creatinine has finally gotten in normal range, water water all d time!

Congrats on your good news, Rocket Girl!

kimlav, I get those dizzy spells, too.

beto, thanks for insight.

LeslieR1234, good luck to you, too.

MugWump thanks for info!

 :)

All the best to you all!

pansy
« Last Edit: May 15, 2016, 08:13:53 pm by pansy »
Diagnosed 2002, geno: 1a.
Treatment naive.
Started Harvoni 3-3-2016
ALT: 78 AST:60 VL  = 6.3
3-17- 2016 (2 wks Harvoni)
ALT: 16  AST: 21 VL = 2.2
3-28-2016  (4 wks Harvoni)
ALT: 17  AST: 21 VL = Undetected
4-14-2016 (6wks Harvoni)
ALT:17 AST:22 VL = Undetected
4-25-2016 (8 Wks Harvoni)
ALT=18 AST= 21 VL=Undetected
5-9-2016 (10 Wks Harvoni)
ALT=16 AST=25 VL=Undetected
Finished Meds 5-25-2016
5-30-2016 (12 wks Harvoni)
ALT=18 AST=24 VL=Undetected
6-27-2016  (4Wks EOT)
ALT=19 AST=24 VL=Undetected

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Weight gain on Harvoni?
« Reply #12 on: May 16, 2016, 11:34:22 am »
Hey Pansy -- Since my last pill is tomorrow (!!!!!!!), I checked this a.m. how my weight fared while on treatment.  Looks like I gained 3# and have lost 1 already of that, so overall, can't complain!  HOWEVER ---- I must say I did have more of an appetite and had to really watch it (water vs. donut!), otherwise, I am sure I would have gained a few more. We are on our way to SVR!!!  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline jakas

  • Member
  • Posts: 265
Re: Weight gain on Harvoni?
« Reply #13 on: May 16, 2016, 03:31:08 pm »
5 kgs gain here :-[
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Weight gain on Harvoni?
« Reply #14 on: May 16, 2016, 03:48:54 pm »
jakas, wow -- that's 11 pounds!

FutureThinker, if you had the Harvoni High (the stimulant effect that provides extra energy), be vigilant post-Tx. It was in the first four months after Tx ended that I gained the most weight, because the voracious appetite continued but I no longer had lots of energy with which to burn up most of the extra calories.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Weight gain on Harvoni?
« Reply #15 on: May 16, 2016, 07:05:06 pm »
Gnatty, thanks for the heads-up on that! I did experience the Harvoni High, but it has leveled out to a pretty average energy level at this point. But the decrease is not like it was pre-tx; I felt so DRAINED and heavy then, and now if I'm a bit tired, it's just a bit tired.Endurance is also much better, but not what I'd call normal. I am hoping for an improvement in this eventually....... I'm just trying to take all this as it comes and not get too wigged out.  I am staying very positive that I will feel more normal in the near future! FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

 


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