Hep C Discussion Forum

Bloomster · Senior Member

RE: A bad time of it

mallani · Guru

Hi Caroline, the muscle atrophy (wasting) is related to inactivity, not dietary. On Rx it's hard to exercise due to the anaemia. I'd be careful not to overload my liver with too much protein. Check with your doctor. I've given up- my arms and legs have never been so skinny, but I'll deal with that post Rx.

JoAnneh · Guru

Shaun, you sure give us all hope!
JoAnne

Shaun · Senior Member

Bloomster wrote:
Shaun, thanks for the info about the protein drinks. My husband has lost a lot of weight. He had done a lot of weight-lifting when he was younger so although he was overweight prior to treatment, he held it quite well. At the moment, I can see that his arms are the skinniest I've ever seen them. I had been thinking that he's had a complete loss of so much muscle all over his body and his arms really show it. So when you brought up adding some protein, I am going to start doing this.
I have mentioned previously on this forum that we have continuously juiced vegies since 3 weeks prior to treatment, and we really believe this has played a part in keeping him going, but now I'm going to add some protein to it as well. Thanks for your info. Caroline

I would add something to the drinks for complex carbs. These are the secret to keeping the weight on. I used brown rice flour, but many bodybuilders use oat flour. The good carbs keep the weight on and the protein keeps the muscle from wasting away. The taste took a bit of getting used to, but it worked. Juicing is awesome too. Any nutrition you can get to him will help. I drank a lot of V8 vegetable juice coctail on tx too.

I did 24 weeks of tx. I was fortunate that I responded exceptionally well to the treatment.

Bloomster · Senior Member

Shaun, thanks for the info about the protein drinks. My husband has lost a lot of weight. He had done a lot of weight-lifting when he was younger so although he was overweight prior to treatment, he held it quite well. At the moment, I can see that his arms are the skinniest I've ever seen them. I had been thinking that he's had a complete loss of so much muscle all over his body and his arms really show it. So when you brought up adding some protein, I am going to start doing this.

I have mentioned previously on this forum that we have continuously juiced vegies since 3 weeks prior to treatment, and we really believe this has played a part in keeping him going, but now I'm going to add some protein to it as well. Thanks for your info. Caroline

gatekeep · Senior Member

Tx is a real pain in the ass. I'm having a real tough time. Drink the water, take soothing baths,soft diet, keep up with the small stuff. Oh and force him to walk around for a bit each day. Every day is a real eye opener.

-- Edited by gatekeep on Tuesday 20th of November 2012 04:43:32 PM

JoAnneh · Guru

Shaun, did u have to do 48 weeks?
Yes stairs are not safe anymore except at
A very slow pace. 6 months w 5 more to go.
48 weeks total geno 1 w cirrhosis.
Thanks joanne

JoAnneh · Guru

Caroline and Ronna, Yes they will adjust eventually. I have a crated what if this is as good as it gets....
Therefore make the most of it.
Eating, getting lots of water and rest as well as stay
On top of treating symptoms.
My husband is so kind; he never puts pressure on me
To do anything... But I sure put pressure on me.
I have relaxed a good bit as it is what it is.
I have to let things slide.
You as caretakers will also have to let some
Things slide as you take on more duties.
So what if the house isn't perfectly clean
Or I don't cook a big dinner.
Remind your husbands this is their time to heal!
Xxoo JoAnne

Bloomster · Senior Member

Thanks for all the great info and encouragement guys.

KMMM I'm sure we'll compare notes over the course of our husbands' treatments. I've found it really helpful hearing what others are going through and how they handle it all. Apart from the fact that there are so many really knowledgeable people on this forum - it is wonderful.

JoAnneh - glad to hear that your treatment is going well so far. You always have kind words.

Caroline

JoAnneh · Guru

Hey and so glad you found the forum, it has
Helped me a lot! I find the medicine a roller coaster
Ride.
Finding reason to do something outside of
The house helps a lot. I owned a company and kept books
For my sons company. I was very active until few years ago.
I have chirrosis at 53 so i am doing 48 weeks.
I just have to rest as needed. Climbing stairs very slowly
As have fainted once rushing upstairs.
You have a house full of children, what a blessing!
Yet dad may not be able to do all he use to do.
The children will be a great distraction for him.
It's awesome u use to be a nurse too!
I have never liked to sit around and tv bores me.
Hope your husband enjoys reading as he can relax and read a lot.
The 1st few months I was so restless but at 5 months I have adjusted
And welcome rest now.
JoAnne

KMMM · Member

Hi Everyone,

Sorry to post and then disappear. Our youngest son was in a hockey tournament and the weekends tend to be pretty busy with just me running the kids around.

We have a 16 year old boy, 14 year old boy, 11 year old girl, and 7 year old boy.

My husband received a blood transfusion in 1989 following a skiing accident when he was 18 years old. We found out he was hep C positive in 1995.

My husband has always worked very long hours as we own 2 businesses. Prior to treatment he tended to work 14-16 hours a day/7 days a week so for him, 12 hours a day Monday-Friday and only a few hours on the weekend is cutting back. When he is home, he is basically in bed.

Other than vague symptoms of hep C (tiredness, foggy, etc), he has been very healthy. The doctors recommended that he undergo tx at this time as his liver enzymes have been increasing quite a bit and in the last few years he has been more fatigued etc. He has never done treatment before and is genotype 1.

I find that he does better if he works. Although he is very run down, he HATES laying in bed and it makes him miserable (well, the laying down and the injection!)

Over the years I have been involved with message boards because our oldest son has disabilities from complications from an illness when he was 5 years old. (He is doing really well now)!

The support and kindess that I experienced with our oldest son online prompted me to really look for message boards in terms of treatment and hep C. After lurking for a month or so on several sites I can honestly say, I thought this message board was the best. I appreciate everyones encouragement for each other and great posts of very good information!

I guess you can be prepared for tx but I think both him and I are a bit surprised at how difficult it has been. His hb is dropping and his wbc count is very low which is a concern to his doctor.

I was a nurse for many years and it has been a blessing because I can do his injections for him and try and keep him on track healthwise.

My husband hates doctors, hospitals, medication, needles and basically being sick...so it's going to be a long year but right now...it's one day at a time.

Our priority right now is making sure the kids are as comfortable and happy as possible.

Thank you for the kind replies and my best to everyone going through tx, and to those supporting family members.

Ronna

Shaun · Senior Member

Hello,

I finished treatment last February and have achieved SVR. When I was in treatment I was sure that it would age me by at least five years. I assure you guys that it does not. I am now in as good a shape as I was pre treatment. I looked like a splotchy, worn out old shoe by the time tx ended. Good food and exercise will bring you back after the treatment, trust me on that. I look and feel great now.

If you husband is having a hard time keeping weight on, make him nutrient dense protein drinks. I lived off these and boost supplement for the last three months of treatment. I used brown rice flour and protein powder in my drinks, and took at least two of them a day. I drank at least three boost supplements a day. I also took lots of vitamins and supplements. Brown rice is a very good source of complex carbs and it will keep weight on you. You have to use a shaker and shake it up between gulps, because the rice flour settles. It becomes about getting calories into your body. It is basically force feeding. Because of this I didn't lost all that much weight during tx. Perhaps 15 lbs total. Drinking water is very important too.

When the symptoms come up, you adjust to them and keep plodding forward. The last two months of treatment I could barely walk up a flight of stairs. I was bound and determined to not let IT win. It is so worth it in the end, and once tx ends you recover fairly quickly.

You have to keep your nose to the grindstone and going forward. It helps immensely to have caring people around. Good luck to you all.

-- Edited by Shaun on Monday 19th of November 2012 04:24:12 AM

KMMM · Member

Thanks Joanne!

The kids have been doing well and Rob was laughing and joking around with them at supper which was nice. He does his injections Saturday night so to have him feeling well enough to have supper with us was nice.

His nurse and doctor have told us the first 3 months are the hardest and that most people adjust to how they feel a bit better after a few months.

It is VERY helpful that I was a nurse for many years!

Take care, and it is so wonderful to meet others that understand how tough this treatment is!

Ronna

-- Edited by KMMM on Monday 19th of November 2012 12:58:48 AM

news · Guru

Just like Phil, I used my job to keep me going. I only missed a few days. When I took a scheduled week of vacation, I stayed in bed almost the whole week. So when vacation was over, I got up each day and went in. I truly believe it helped me. But I am a UNIX systems admin, not a roofer. If I had to nail shingles all day, or drive a big rig, or make sales calls, or drill oil wells, I would have stayed home the whole nine months.

Phil G · Senior Member

I worked throught treatment and believe it helped me deal with tx. It was something familiar to keep life at least partly on a normal plane. I could not imagine 24 hours a day of just me having a pity party on the couch. I slept a lot on the weekends and didn't do much else, just to prepare for Monday. On work days, I napped after dinner until my alarm woke me up at 10pm for meds. Basically, life was tx with work, rest, and a little pleasure thrown in when possible. It worked.

navigator · Newbie

KMMM - my husband is also stubborn about maintaining his work schedule. the downside is that he not only feels more fatigued, over-doing it seems to make all of the side effects worse. he is almost through week 14 (undetectable at 12 - yeah!) and on boceprevir. the side effects are a roller coaster. i just wanted to send you some encouragement and wish you luck. adding the third drug may make the work decision for him. hang in there, i know week 48 seems very far away right now.

JoAnneh · Guru

Kmmm, How old is your husband and what
Kind of work does he do? 12 hours a day
Is a lot for average healthy guy.
He has a load to carry. Could he reduce his hours
Or get a day off occasionally?
Glad he has you as I imagine he comes home, eats and falls out!
I admire a hard worker but hope he gets rest.
JoAnne

KMMM · Member

I have been lurking a bit for the last four weeks. First time posting.

My husband started treatment 4 weeks ago. He is really struggling. His hb is dropping rapidly and his wbc count is very low. He is still working at least 12 hours a day and hasn't missed a day of work yet. His doctor and I are very concerned that he is not getting enough rest etc. but my husband is stubborn and has to do this treatment his way.

He is determined to see treatment through to the end. I just wanted to say that I can relate to what you are saying about your husband. Mine has always been very tough and it is hard to see him so much not like himself.

44 weeks to go. He starts broceprevir on Monday.

JoAnneh · Guru

Tell your husband I received UND test
Results today at 6 months on tx.
Now 5 more months till finish the med.
I look like walking death but determined
To see it thru! He can do this! JoAnne

Phil G · Senior Member

I've always questioned the recommended amount for Riba. Its based on SOC, yet we add a third drug with no adjustments. Seems like something has to give and it usally does, either the dosages or adding another drug as a rescue measure or letting the blood tank. The doctor is the one who makes that choice, and there is no consensus.

mallani · Guru

Hi Caroline, be guided by your own Hepatologist. The research on lowering Riba +/- Procrit or similar, has been presented at the EASL in Barcelona and at AASLD in Boston. I asked my doc about lowering Riba after he returned from the Barcelona meeting. He said there was disagreement about the findings, and he was not convinced. He may be wrong, but I am happy to follow his guidance. So many patients are on reduced Riba that it casts doubt on the 'recommended' dose. As I said, I'll try whatever's necessary to improve my chance of SVR.

Bloomster · Senior Member

Malcolm I spoke with the RN today about the reduced Riba dose. She said that going from 1400mgms to 1200mgms a day is fine as my husband has lost quite a bit of weight. He was around 136kg and now is 113kg. She also said that the research indicates that lowering Riba dose does not affect the outcome and is backed with robust research. I am concerned still as you mentioned that your own doctor is not convinced.

She also mentioned that she agreed that his Hb at 107 can still go lower, but if it does, it usually stays low and is difficult to raise. His Hb last blood test was 117 and dropped to 107 in 2 weeks.

I said that we would talk to the specialist again in 2 weeks, but I think hubby will want to stay on the 1400mgms dose a day, even if it does mean lethargy. I guess the tough part of all this is making your own decisions when they do not always line up with what the doctor says. Of course we want to follow procedure, but there seems some differing opinions out there. Caroline

Bloomster · Senior Member

Thanks guys - I appreciate your encouragement. Caroline

kiwi · Senior Member

yeh the tiredness really gets to ya. i found it was good living alone, coz i just hung out on the couch. A LOT. theres still a shape of me on it now and im 4 weeks out of doing 48. i feel for ya hubby, but hang in there. its worth it. i was on 1200 mg of riba a day. only once they considered a reduction and thats coz my wbc got really low. but it improved a tiny bit, so we stayed at that dose. i was reluctant to reduce anyway coz i know the longer you can stay on the full dose, obviously the better.

keep up the good work. i had no oooomph, i had some friends help me out. but only now am i tending to stuff that has been neglected for a whole year now. gardens, house, the list goes on. but its still there waiting for me. no biggie. i needed to concentrate on hangin in there.

glad you have some support and your hubby must be so glad to have you there.

JoAnneh · Guru

Caroline, you are not alone.
I am on week 26 of 48 week and waiting
On test results on VL!
I, too will stay on med to the end.
I will be glad to get test results in.
Encourage your husband to stay active
It helps. Course there are days I rest 12-15 hours.
Lately I haven't been sleeping much.
Thinking of you both. My husband has been
Wonderful too. JoAnne

Bouba · Senior Member

I am 100kgs and got 1200mg a day prescription. Here they look at 800mg for < 75kgs and 1200 for > that...

Bloomster · Senior Member

Thanks Malcolm. We feel the same about the Riba reduction. Hubby saw a different specialist today and he was the one who made this decision. We will be contacting the hospital tomorrow to organise the meds to stay the same for next month as we have already picked up the meds for this month with the full doses. My husband also is in a similar boat to yourself and he wants to perservere with the unchanged doses. Cheers to you and thanks for the info.

mallani · Guru

Hi Caroline, optimal dose of Riba. is: >85 kg ....... 1,400mgms/day (7x200mgms caps/day)

>75 kg ....... 1,200 mgms/day

<75 kg ....... 1,000 mgms/day

I weigh 78 kg and have been on 1,200 mgms/day since day 1. Hb before Rx- 167 Lowest Hb on Rx- 88 at week 24. My doc isn't a fan of Riba reduction, even though there are papers showing it probably doesn't affect SVR outcome. This contradicts earlier work ( when Peg-Riba was SOC). I'm prepared to accept the lethargy and put up with the Riba dose, as this is my last chance of Rx. There won't be any places on trials for me, if this doesn't work. Cheers.

Bloomster · Senior Member

Hi Malcolm, thanks for your encouragement. I usually go to all appointments with my husband because he gets the brain fog happening and doesn't ask all the questions. We usually do an early Monday morning appointment, but it got changed to late this afternoon and I couldn't go. Hubby came back and said his Hb is 107 and the doctor wants him to reduce the nightly dose of ribavirin from 4 to 3 capsules. So yours is still much lower than his. How are you coping? Have you had any of your doses adjusted? Do you know if changes in Rib have an impact on the change of the outcome? I think I have asked this question previously at the doctors and I'm pretty sure they said it doesn't as the Victrelis remains the same.

That's a shame that only 3 are still receiving treatment, but I guess everyone has their own limitations. Fortunately, my husband is mentally strong and he will see this through to the end even if he's on his last leg - but as you say, it's very much a struggle. Yes, they mentioned he will be getting his next VL at 24 weeks.

All the best from Sydney. Weather is beautifully cool with blue skies - perfect!

mallani · Guru

Hi Caroline, some weeks are just worse than others. There does seem to be any rhyme nor reason to it. My ' good' days have now changed, so I don't know what to expect until I wake up. Do you know hubby's Hb ?. I know you were having trouble getting results, but surely you should have access to that. My Hb remains 96 (9.6 in USA). If hubby is below 90, maybe he needs some help. There is no doubt that the Sx are worse in cirrhosis. My doc is upset that, of his original 6 cirrhotics, only 3 of us are still on Rx. Mentally it gets very wearing for the patient, as it must for you watching. Just struggle on- I hope you're getting a VL at 24 weeks? Cheers from Brisbane.

Bloomster · Senior Member

Hey guys, just checking in after going through a bad week or so with hubby. He's coping the best he can at the moment, but is suffering with fatigue, sickness, loads of hair loss and the general yuckiness that goes with treatment. I feel upset seeing him like this. He told me today that he can see a massive 'aging effect' happening to him and we've only just started week 17!!! Week 48 seems so far at the moment. Anyway, I know this is a rollercoaster of a ride, but it's good to be able to air my feeling some place where people understand.

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