Aa
Aa
A
A
A
Close
Avatar universal

Rapid Weight Loss

I've lost 17lbs in three weeks, 5' 9 and 135lbs.  They weigh me every time I go to the clinic and  am wondering if I lose too much weight will they pull me from the trial?

If I get into the six month group I might make it, but I'll be around 100 lbs if the loss stays consistent.  If they put me into the 48 week group there's no way I can do that with the weight lose as its going now.
24 Responses
Sort by: Helpful Oldest Newest
233616 tn?1312787196
not to rain on everyone's parade here, BUT

one thing no one mentioned is the other major cause of weight loss during treatment, besides becoming hyprethyroid is to do into diebetic territory.
You do not have to have a family history, or be overweight, or have any other precursor to have the INF push you into Insulin Resistance (IR) or even full blown type 1 diebetes.

Of course you should rule out dehydration and most clinics check thyroid and glucose but they don't all do it with enough regularity. Since autoimmune conditions are sometimes brought on by the SOC treatment, it always makes sense to to have blood sugars checked as well as the rest. The reason is that even a few weeks of BS imbalance can damage eyes and nerves, and some of that is irreversible.
It's not the first thing I would suspect, because certainly dehydration and thyroid are at the top of the list...but rapid weight loss can be IR etc as well.

For that matter, in my case I had fevers everynight and pain in my side, and kept talling them it was my gall bladder....but because I was not losing weight they would not believe me....I didn't have EVERY classic symptom...only 8 of them...
I'll never know for certain how much of my fever and pain was really HCV and how much was my bum gallbladder...but after it came out my doc said it was severely diseased, had no stones, but was a mess, and had been leaking into my abdomen,,hence fever/pain/sepsis....it was there before tx...but became much worse on tx...

you can PM me if you want more GB or IR info.

also, yes remeron will give you an appetite as someone said and help stop weight loss...I gained 10lbs during tx thanks to it....but the problem is, it makes you hungry right when you should be falling asleep...ravenously...and that's not the best time to be eating...either for your heart or your liver. Yet sometimes the appetite is so intense on it no way can you sleep unless you eat something first.

mb
Helpful - 0
233616 tn?1312787196
not to rain on everyone's parade here, BUT

one thing no one mentioned is the other major cause of weight loss during treatment, besides becoming hyprethyroid is to do into diebetic territory.
You do not have to have a family history, or be overweight, or have any other precursor to have the INF push you into Insulin Resistance (IR) or even full blown type 1 diebetes.

Of course you should rule out dehydration and most clinics check thyroid and glucose but they don't all do it with enough regularity. Since autoimmune conditions are sometimes brought on by the SOC treatment, it always makes sense to to have blood sugars checked as well as the rest. The reason is that even a few weeks of BS imbalance can damage eyes and nerves, and some of that is irreversible.
It's not the first thing I would suspect, because certainly dehydration and thyroid are at the top of the list...but rapid weight loss can be IR etc as well.

For that matter, in my case I had fevers everynight and pain in my side, and kept talling them it was my gall bladder....but because I was not losing weight they would not believe me....I didn't have EVERY classic symptom...only 8 of them...
I'll never know for certain how much of my fever and pain was really HCV and how much was my bum gallbladder...but after it came out my doc said it was severely diseased, had no stones, but was a mess, and had been leaking into my abdomen,,hence fever/pain/sepsis....it was there before tx...but became much worse on tx...

you can PM me if you want more GB or IR info.

also, yes remeron will give you an appetite as someone said and help stop weight loss...I gained 10lbs during tx thanks to it....but the problem is, it makes you hungry right when you should be falling asleep...ravenously...and that's not the best time to be eating...either for your heart or your liver. Yet sometimes the appetite is so intense on it no way can you sleep unless you eat something first.

mb
Helpful - 0
495402 tn?1220617403
Odd that so many people are having rapid weight loss where I've been gaining weight the whole time.  When I first started treatment, I couldn't eat enough, it was like I had a tape worm but now it seems to have leveled off, although I'm still a little heavier than I was when I first started.  I was eating a lot of ice cream and things that would go down easier for me.  I think that I'm about 9lbs overweight now.

Hopefully there are other's out there that are putting on weight also.

~Linda
Helpful - 0
179856 tn?1333547362
Most hypo thyroid have problems with weight gain but I have never had that problem and my doctor never did understand that.

Tippy why don't we just trade places for a little while - ok - I'm glad to volunteer! I weighed the same thing for all of my life without any variation until it happneed, now if I even look at food it seems it wants to jump on to me.  I'm only 5'7 and weigh 135 so you are LUCKY if you ask me :) I've never weighed this much in my life........so try to think positively and maybe karma will let us trade. I'll be glad to share all the extras with you that I have!

You are already on such a low amount of riba I wouldn't cut it down any further - and when you take it once it's already built up in your system to the right level really doesn't make any difference because it should always be at a good high level to keep doing it's job. Maybe psychologically though you could take the pm dosage earlier in the evening or late afternoon but try to stay as close to 12 hours as you can.  Why did they drop you down (I think I missed that) usually even when we lose weight we stay at the amount that was prescribed so we don't give the virus any wiggle room to come back in.

I was really really skinny when I started on treatment and that was one of the big concerns that I'd loose to much weight so I amped up before hand and gainned 5 - 8 pounds or so. BUT one of my doctors told me there are drugs that do cause a lot of weight gain and if it got very bad they could put me on one of them (like neurontin or something but I'm not sure what). Of course, being on a trial makes it harder for you but I think you will level out eventually and won't have to worry about it.

Eat the ice cream and some milkshakes I'm telling ya!  :)

Helpful - 0
683664 tn?1330966324
Sorry you're having such a hard time.  I'm one of the people who didn't lose weight on tx, so don't have lots of advice there.  I was told, however, by my care team that people who don't lose a lot of weight do better on tx.  Not sure what they meant by that, but wt loss was the ONLY side I might have liked, and it just didn't happen.

Others have made some good suggestions.  I hope things settle out for you soon.
Helpful - 0
717272 tn?1277590780
Fever is an interferon thing, but other drugs will do it for some reason.  I think it's called 'sundowning'. I believe it was my mom's anti-arthritis medicine.  It took them a week of hospitalization to figure out and they finally figured it out by removing her standard meds one at a time. You can't do that but you can wiggle things a little.  If the fever hits exactly the same time every day, try moving the dosing time of one of the meds and see if the fever start-up time changes.
Helpful - 0
Avatar universal
I am hypo now but am thinking maybe I switched over to hyper.  Having blood work done Monday.

Most hypo thyroid have problems with weight gain but I have never had that problem and my doctor never did understand that.
Helpful - 0
Avatar universal
My Riba is already reduced to 600mg so I should be okay there.  The trial is not to keen on AD's, as I asked a month ago.  They don't want any thing to interfere with the data of the trial.  True results only.


Cycling fevers tend to be related to taking a drug at the same time every day.
Happened to my mom and they just changed the time of day she was taking the drug and effect went away.
-----------------------------------------------------------------------------

Are you saying I should change the time I am taking the Riba?. I thought the fevers were caused by the Interferon.
Helpful - 0
179856 tn?1333547362
I had rapid weight loss but it finally leveled out once I got more accustomed to treatment and figured out what I could eat that didn't bother me and things like that.  Also, I started eating ice cream big time.  It was one food that didn't make me feel ill and it came in so many flavors that I didn't get bored. It's not a perfect solution (although these days two years after treatment when I gainned back ALL the weight PLUS some I'd LOVE to do it!) but it worked. Small meals throughout the day plus ice cream seemed to do the trick for me (although going hypothyroid didn't hurt at all I'm sure).

Have they been checking your thyroid functions? If you continue to lose weight so drastically it could be that you are hyper thyoid. If that is the case - (as happened to me) it usually does flip flop and then losing weight won't be an issue.

Find out what your TSH level is - that might help. They have meds to fix that.

Helpful - 0
717272 tn?1277590780
Trying to fool the scale may not be the best idea.  I'd rather have my dose recalculated so it was right for my new weight.  You just need enough chemical to do the job, more is usually not better and taking more than you need will just increase your side effects.

Tippy, are you on an AD?  Several cause weight gain, like Celexa.  Remaran causes a ravenous appetite.  

Cycling fevers tend to be related to taking a drug at the same time every day. Happened to my mom and they just changed the time of day she was taking the drug and effect went away.

Helpful - 0
Avatar universal
Ilost 20 lbs since start of tx. ya the water does ruin my appietite .I start drinking early  5 am . I eat more now the "six small meals " that way there is somthing in my gut  . also I flavor the h2o with a small amount of  lemon or a "shot " of koolaid  mabey 2 oz per liter .I do that on mabey one of my 3 liters . also try special  k morning protein drink . yummy ...           NOT              bob
Helpful - 0
Avatar universal
It is the Riba train tippy; in the first weeks you’re going to have the trotters because of the extra fat intake to help with the absorption factor of the riba. It will level out as your metabolism adjusts to the riba but it will have to bottom out before then. Know where the terlots are when going out in public and the fever associated with the trots and is the body saying I do not like the riba and the extra fat intake and is leading to a slippery slope of weight loss, pun intended.

I lost 35lbs in the first 6 weeks of tx and then it leveled out. 1 year post and have not gained back what I had lost.

It will level out, just takes time but in the mean time welcome to toxic Ville.  

jasper
Helpful - 0
Avatar universal
I am having fevers every evening for around three weeks, which is when the weight loss began.  I was wondering if there's any connection between the weight loss and fevers?  Maybe a long shot, just curious.
Helpful - 0
439539 tn?1233465815
I meant food food and more food.
Helpful - 0
439539 tn?1233465815
I no longer am tx but still having problems getting the weight to stay on.Lotta good advice.I have found that when your hungry, EAT.You said,
I wake up hungry but once I start drinking water by mid afternoon my appetite is just gone.
Can you pack food dood and more food for the morning ?Eat till you can't in the mornings, then drink water the rest of the day.
Your body is like an automobile.When you awake in the morning your tank is empty and needs refueling.Fill it up.Use that nutrition, not your stored energy.
Try to eat no matter what.Make all the stuff people told you.I know it's easier said than done.I was an example.You don't want to say,
Woulda Couda Shouda, ya know ? You gotta do it.
Lol to jmjm's suggestion.I never thought of that.Coins in pockets.I just hold my purse.lol.You can put 5 lb. weights in there.Wear a fanny pack.Hehe.
Helpful - 0
Avatar universal
It's a catch 2 situation.  I have to drink 100 oz of water or more ( 110-120 ) because I was dehydrated about 5 weeks ago.  I wake up hungry but once I start drinking water by mid afternoon my appetite is just gone.  I literally force my food down at dinner.

Lots of good ideals.  I will have to work harder at eating and hope I don't throw up.  If that doesn't work I will wear a big bulky jacket with huge pockets with rocks from the garden, for the weigh in.  ( Great ideal jm jm )
Helpful - 0
Avatar universal
Pound this back into you....


http://www.livepurehealth.ca/store/product.php?productid=16785



Helpful - 0
626299 tn?1316707893
Has this been in the last three weeks? How is your thyroid testing?

You have had it rough that is for sure.

Hugs!
Helpful - 0
254544 tn?1310775732
I had rapid weight loss as well.  I did the carnation instant breakfast, whole milk and ice cream like GS posted.  My PCP actually suggested it (I HATE Ensure).  I also wore heavier clothes, clunky sneakers, and stuffed my pockets for weigh in.  I did have to take a a weight based reduction during my first round of treatment but they never threatened to pull me off tx.

If you are a weight dropper on tx ice cream is your best friend .

Mouse
Helpful - 0
769978 tn?1235008702
Glad your ok. Nice to know about people on a study, and not having ill effects from a supposed cure. HOPE all goes well. I would so love to try the same tests, to see if there is a cure for me in the works. Any one know of a study being done in Phoenix Az?
Helpful - 0
717272 tn?1277590780
I lost 5 pounds a month the first 2 months and then I guess I felt a little better, cooked a little more and got my appetite back.  I am no longer losing.

They would be more likely to recalculate your dosage for a lower weight than to bounce you.  The study has a lot of $ invested in you and they will only bounce you if it looks like the drugs will do you enough harm to make their drug look bad.

I've had my peg & my riba reduced at times, but they never reduce the study drug (wish they would!)
Helpful - 0
475300 tn?1312423126
Here is a great calorie builder and it tasts great.............carnation instant breakfast + ice cream + whole milk and make into a delicious milkshake.  That is what I did and there is even some nutritional stuff in there.

Denise
Helpful - 0
Avatar universal
Some people who experience rapid weight loss use supplemental nutritional drinks such and Ensure and Boost to help keep their weight up.

Helpful - 0
Avatar universal
I started wearing heaving boots and loading my pockets with coins at my doctor's visits for the same reason.That's not a joke.

At the same time, however, I did discuss weight loss with my team and did my best to put some weight back on using  high caloric nutritional supplements like "Ensure" and trying to eat more high calorie meals with added fat. Some will say to "eat healthy" on treatment but I was told to eat to maintain weight and like yourself I realized that if my weight loss continued then I might be pulled from treatment. At one point the weight loss was so significant (close to 40 pounds) that the doc was talking injections of anerbolic steroids and/or testosterone supplementation. Fortunately, my weight leveled off due to a combination of eating more calories and also probably just finding a new "set point" for my altered metabolism on treatment.
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.