Hep C Discussion Forum

Cinnamon Girl · Guru

wt loss on Harvoni

julia1065 · Member

Thank you all for your support and I am confident that if it is cancer I will beat it. I beat this monster thus far and will continue to survive.

If it is the Harvoni well that will be icing on the cake. I love being thinner and my back doesn't hurt anymore. I still have a lot of fatigue. It never subsided even on treatment. I went through a BMS clinical trial (which was not successful) back in 2014 and I was feeling more energy while on the drugs and while my viral load was undetectable. This time however the energy has not improved yet. But I don't have to work full time so it is manageable.

Brian1412 · Guru

Hi julie As a cancer survivor and now finishing harvoni maybe a little comfort. To you I have been 175lbs since i was 17. I am now 51. Since. My being diagnosed with hep c.i was. Down to 143 before starting. Harvoni. Since harvoni and now almost finished. I am now 153 w bmi of 19.1. I almost had to buy pants at baby gap.seriously. i have always. Been lean.. one day things changed. My energy. Disappeard over night and i started losing weight. As a cancer survivor in the past the first thing i thought was cancer..no because. I found out i had hep c. With cancer. The weight loss is usually. Rapid. My dad called me one day and said he was losing weight. I asked him how much he said 70 lbs over a few weeks at which time o told him to go immediately. To er. Thst is cancer. And losing weight. A pound a day is most likely metabolism My time here. With hep c i learned that there. Is a time when the body tries to clear the virus.it was likely this period. When i started. To lose weight. Imsgine they energy the body uses to fight a cold or flu ..i. certain it takes alot of energy to clear. A strong foe like hrp virus.. I had no issues with harvoni as far ad appetite but since. The second. Week of harvoni i was undeteced and still . Am.i have slowly been gaining weight....i guess i will find out shortly if the weight issues are from the med fighting. The viruse which i suspect. It is as the more the virus clears. The more energy the body. Has to operate. As is normal. Its good. You saw a dr and got checked and good you associated your weight loss to something wrong as with cancer it is a big sign which cancer will ALMOST always. Give a person Awesome. You aware. And seek advice to rule out things like cancer. Many people try ignore signs of cancer. And those are the ones we lose. Good luck PEACE

Tig · Admin

Hi Julie,

Welcome back, but I'm sorry you're experiencing the problem with weight loss. According to the pooled data from all three ION studies, abnormal weight loss, and decreased appetite were common. It sounds like you're covering all the bases and having the proper testing done, so I wouldn't worry at this point. Some have gained weight on Harvoni and others have lost it. It takes time to recover after treatment, so I recommend giving yourself more time for that and continue the discussion with your doctors.

I lost a lot of weight on a different protocol and ended up losing about 55 lbs. it just fell off and I was heavy too, so now it has stopped and I'm healthier for it. Do your best to eat healthy when you do and continue hydrating properly. If you're not eating as much, you may be missing out on some needed fluids.

julia1065 · Member

Hello everyone its been awhile since I looked around on here. I had major weight loss on Harvoni. I was on a 6 month regimen which started mid October until mid April, 2015. I lost 40 lbs so far and it wont stop. I lose about a pound a week. I am (was) a bigger girl so it was great at first but now I am a little worried.

I thought that the weight loss should stop after I stopped taking the drug but it didn't. so since then I had my thyroid checked which turned out normal and had a preventative lung ct because I was worried I may have some beginning stage cancer. my only symptoms are weight loss and fatigue of course. the more weight I lose the more my appetite decreases too. I have two appts coming up next week and hope someone can at least rule out cancer. This sucks.

B161 · Member

I sure know what you mean about napping at anytime! When I 1st started harvoni I was taking it in the morning. Taking it around 7PM seems to work better but I still have trouble sleeping at nigh-which happened when I took it in the AM also. Who knows!

Michaele · Guru

Thanks Mugsy, Felt well enough to go to 5pm mass. Now if I can just keep the fever down it would be close to perfect. Hope you are feeling better,too. Praying your dad is doing well and feeling Holiday Magic . Michaele

Mugsy · Senior Member

Michaele wrote:
Mugsy For the life of me I have no idea why I posted that. Blame it on the fever and weight loss. LOL Michaele

No worries. I do hope you are feeling better today.

Take care, dear one.

Mugsy

Michaele · Guru

Mugsy For the life of me I have no idea why I posted that. Blame it on the fever and weight loss. LOL Michaele

Michaele · Guru

Tig , dont remember what it was that turned me off about Zofran. Phenergan has been my drug of choice and works for me. I take 12.5mg ,Im very sensitive to drugs . And now just when I started to feel normal , I over exerted and the fever came back. Its 5:30 am fever is down and I doing the cheese toast and egg thing again. Merry Christmas Michaele To tired to get into editing glitz at this time

Tig · Admin

Hi Michaele,

I cleaned up all those edits for you. Can you explain what you wanted to do and I can assist you with it? I'd be happy to try! I also read about the breast feeding transfer. That sounds very unpleasant...

Too bad the Zofran didn't work for you. I had great results from it. I'm curious to know what you read that turned you off of it. Besides the brand name being obscenely expensive that is! The generic worked well.

Tig

Mugsy · Senior Member

Michaele wrote:
Mugsy . I have tried to edit the post about babies getting thrush at breast . This seems not to be the case, but simpley what I was told when my daughter got thrush 35 yrs ago while still nurseing. Seems the baby gets her thrush on the breast and can infect the breast and cause a cycle if reinfedtion if breast not tended to. My Bad. Wonder why some edits dont post? Michaele

-- Edited by Michaele on Saturday 20th of December 2014 01:04:46 PM

Haha! No worries, Michaele, as my youngest breast fed kid is 25 so thrush during nursing is not an issue anymore! I do appreciate your info.

Michaele · Guru

Mugsy . I have tried to edit the post about babies getting thrush at breast . This seems not to be the case, but simpley what I was told when my daughter got thrush 35 yrs ago while still nurseing. Seems the baby gets her thrush on the breast and can infect the breast and cause a cycle if reinfedtion if breast not tended to. My Bad. Wonder why some edits dont post? Michaele

-- Edited by Michaele on Saturday 20th of December 2014 01:04:46 PM

Michaele · Guru

Tig , meant to say Ive been using Phenergan PRN for 10 yrs . Had an RX for Zofran but read something that caused me to not use it. Michaele

Michaele · Guru

Tig , the eggs and texas cheese toast were to die for , think I'll pass on the ice cream this time. Michaele

Michaele · Guru

Mary , I can see how it would have been easy to pick up thrush at hosp. Are you on a swish and spit , or gargle routine ? Candidis albucan is a tricky buggard.. Its not a sin, but Im sorry your not feeling up to snuff. Michaele When my kids were small I was told babies can get it at breast but that seems to not be the case. My daughter had it a few times. Guess I was a bad mom .

By the way all those muscle and joint pains are on the grade 2-4 side effects list.

Tig · Admin

Michaele, I hope that you've found something that will give you ongoing relief. You certainly deserve it! Now I'm going to have to go out into the kitchen and find something to eat. Your midnight snack sounds pretty good! I hope it goes down well and doesn't provide any unwanted surprises about 2:30 this morning... Maybe an ice cream cone before bed???? Good luck!

Tig

Michaele · Guru

Fourlocos , glad to hear your doing well........Michaele

Michaele · Guru

Thanks Tig , for some reason icecream and banana seems to have hit the spot, and now Im up at 11pm making eggs and texas cheese toast. Hope I dont make my self ill. My fevers has lessened these past 2 nights. The head ache and crippling fatigue have lessened, too. Things may be looking up....Michaele

-- Edited by Michaele on Saturday 20th of December 2014 04:00:19 AM

fourlocos · Senior Member

I was enjoying the nausea as far as weight loss goes! That only lasted the first four days and now I am hungry all the time. I have issues with gastritis and was always having stomach woes with gas and bloating. Strangely I haven't had that since I started the Harvoni. It's odd. I was worried since I don't tolerate medications very well but other than feeling fatigued I can't complain about SE at all. Being I am on the hyper side of life, this is actually a very mellow journey for me. Just hating that I feel rather brain fogged. I have post it notes all over the place to remind me of stuff. Gotta love running in the store for bread, spending 100.00 and forgetting the bread... twice now!

Mugsy · Senior Member

Thanks, Tig! You always seem to have helpful info to share. I do appreciate you.

Mary

Tig · Admin

Hi Mugsy,

Sorry you're feeling like poo Thrush for the most part is not contagious. Here's a bunch of info (10 pages!) on Thrush and should answer some questions.

http://www.medicinenet.com/thrush/article.htm

Tig

Mugsy · Senior Member

I was not hungry at all for the first 10 days or so because of the nausea, but it soon changed to ravenous when the upset feeling went away! I have put on 7 pounds and have returned to being conscious of every bite as my glucose level was high, too. And I think that plus stress was the cause of the thrush I came down with? My father had thrush in the hospital when I was there and I am not sure if it is communicable or not, but my throat became sore 6 days after returning home. And I am so tired I can nap at any time of day if I let myself.

Tig · Admin

Michaele,

When I was on Tx, I was taking IFN which is considered one of many chemo agents given to people with cancer and HCV alike. I mention this because whether Harvoni is or isn't considered a chemotherapy agent, the treatments for nausea are still based on medication related nausea. That said, I looked up treatments that addressed that issue and aside from the anti emetic I took (Zofran), I ate foods that were stomach friendly as well. Here's a website (one of many) that will give you some ideas for foods and liquids that will hopefully bring you some relief. Good luck...

http://www.cancer.gov/publications/patient-education/nausea.pdf

http://www.ucsfhealth.org/education/diet_for_cancer_treatment_side_effects/

Tig

Michaele · Guru

Harv, just crawled to the store, wish I knew about the cottage cheese sooner. I just ate Bryers vanilla bean ice cream with a banana, and feel pretty good. Stopped ice cream long ago but the NP told me my veggie diet was not enough, so Ive branched out some . Even doing small amounts of meat. I avoided animal products ,but my B12 was suffering. Did You try plain soda crackers for the nausea? Alot of people are saying sugary carbs are making them feel ill. Hope your feeling better. Michaele

Harvoninme · Senior Member

Michaele wrote:
Thanks Harv , did/do you feel abd discomfort like bloating or burning ? My stomach is making alot of grinding noise all the time. I think the gas people are complaining about is in the mix. I think I need to eat foods that are more calorie dense. Michaele

-- Edited by Michaele on Friday 19th of December 2014 07:13:25 PM

Yup, gassy, bloaty, burpy, too. And I don't usually burp. Cottage cheese was my go-to food, if you can handle dairy. Sugary starches made it worse for me.

Michaele · Guru

I saw something about Harvoni effecting S T waves, but I need to look it up because I could be wrong about which waves it effects. My S t are normally abnormal. Michaele

Just checked and it was a QT study, not anything to do with ST wave, but it does cause flutters as noted on the grade 2 thru 4 side effects list list.

-- Edited by Michaele on Friday 19th of December 2014 09:29:31 PM

-- Edited by Michaele on Friday 19th of December 2014 11:57:08 PM

Michaele · Guru

Hi Ro, I take levothyroxine , maybe they will check TSH next visit. I know this sounds strange but my gut was burning and for some reason I decided to drink a cup of instant hot cocoa. It settled my stomach. Isnt that freaky? Because my blood sugar was up Sunday, Ive been cutting back on carbs. This to will pass. They only tell people about grade 1 side effect, and one has to hunt to find a page with the grade 2 & 3s. And I dare say there are many. If I was more pc savy Id post the page , maybe one of my kids will do it for me. Hope your feeling wll enought to get Christmas prep completed. Michaele

skewedButNotBroken · Senior Member

Michaele,

I thought that it might have been an electrolyte imbalance so I started eating bananas, and many other natural sources of electrolytes and even started drinking Gatorade, PowerAide and the like, but nothing helped. I have since learned, however, that protease inhibitors can cause arrhythmias in some people. For example, there have been several peer-reviewed articles on HIV drugs that are classified as protease inhibitors and how they might cause arrhythmias in some patients. These HIV drugs have been around since the mid nineties and thus they have been studied extensively. I'm sure that in the future the same conclusion will be drawn about the HCV protease inhibitors. But as stated, they only cause arrhythmias in some people.

Ro · Senior Member

Michaele,

I had major weight loss on the other treatments, and now wish I had weight loss..my appetite has been voracious! I gained weight at the 4 week check up with doctor.. I think ( I hope) I am leveling off now.

I am noticing increased gastric motility...but cutting back on certain foods has helped.

My TSH is messed up since starting Harvoni.. Family doctor wants to up the levothyroxin, (which was started due to Infergen screwing up my thyroid), , but I asked her to wait a month when we will retest. I am feeling so energetic, I am not sure it isn't med induced rather than systemic.

ALSO, I do find I cannot tolerate sugar/carbs... I get I that rush of dizziness after eating them... And that same feeling when I am hungry...Almost like hypoglycemic reaction.. My blood glucose was normal , but will be keeping a log of what aI eat and how I feel.

I hope you soon start feeling better!

I continnue to send prayers Your way!

Ro

The trip to VA was wonderful.. Cold, but full of holiday cheerfulness..

Is that a pic of your home? It looks so serene..lovely!

Michaele · Guru

Hi Barnacle , its good to know Im not alone. Michaele

Michaele · Guru

Hi SBNB , was an eletrolyte imbalance causing flutters? I think Im going to eat more calorie dense foods. My blood sugar was up sunday and Im not diabetic, so I cut back on carbs, As feeliing poorly caused me to lay around and so I was using less glucose at cellular level. Harvoni can cause an increase in blood sugar, but it usually with diabetics I see your in FL. I lived in Spring Hill 1986-1995 weather was nice. But to far to stores. Michaele

Barnacle · Senior Member

I lost weight on S/O as well. No worries I quickly found it again post Tx

Michaele · Guru

Thanks Harv , did/do you feel abd discomfort like bloating or burning ? My stomach is making alot of grinding noise all the time. I think the gas people are complaining about is in the mix. I think I need to eat foods that are more calorie dense. Michaele

-- Edited by Michaele on Friday 19th of December 2014 07:13:25 PM

Harvoninme · Senior Member

Michaele wrote:
Has any one else lost weight on Harvoni ? Tomorrow will begin 3rd week and Im down about 8 - 10 lbs. Its one of the grade 2 side effects and took me forever to find a page confirming it. Michaele

Yup, I lost about 15lbs. I lost 8lbs in the first 2 weeks. Most of it was water weight. I just wasn't hungry. Sometimes my mouth would water like I was going to get sick, but I didn't. I had some leg cramps, too. The appetite suppression didn't last long. I'm in my 8th week now and have already gained back 5 lbs.

Stay hydrated!

-- Edited by Harvoninme on Friday 19th of December 2014 06:40:56 PM

skewedButNotBroken · Senior Member

In case my case the weight loss was even more significant than in most people because I only weighed 125 lbs at the beginning of treatment, so I was losing about a pound a week (I had to stop treatment at 6 weeks due to heart flutters). Since I stopped treatment, however, I have gained about 15 pounds.

Michaele · Guru

Hi , how fast did you lose weight ? Thanks. Michaele

skewedButNotBroken · Senior Member

I lost 7 lbs using the Sovaldi/Olysio protocol which is very similar to Harvoni.

Michaele · Guru

Has any one else lost weight on Harvoni ? Tomorrow will begin 3rd week and Im down about 8 - 10 lbs. Its one of the grade 2 side effects and took me forever to find a page confirming it. Michaele

-- Edited by Michaele on Saturday 20th of December 2014 12:31:52 PM

Hep C Discussion Forum

Legal Disclaimer: