Hep C Discussion Forum

Mary Jane · Guru

RE: Starting Treatment next week! Have questions!

Mary Jane · Guru

KMMM wrote:
I hope your needle goes ok tonight.
My husband has always been VERY private about his hep C. He got it from a blood transfusion following a skiing accident in 1988 when he was 19 years old. We found out about his hep C in 1995 a month after we were married because of a blood trace back. He is 42 years old now. Prior to starting treatment I was the ONLY one who knew he had started treatment. Slowly but surely in the first few weeks of treatment (he has had quite severe side effects) he agreed to tell his parents, and close family, our kids and then close friends.
I can honestly say, that now that we are 3 months into treatment one of the best things I think for my husband was to share with family and friends what he is going through.
He has had a lot of family and friends that have just been terrific with support. Just this afternoon a friend of his came by who had gone through treatment with bladder cancer and they talked toghether and I think his friend was able to give him some good advice/support.
My advice to anyone would be to first and foremost, let family and friends be of support during this time. You would be surprised at the people who offers prayers and support when you need it the most.
The first 3 months of treatment have been pretty tough and in the beginning when things were REALLY bad, my husband's nurse said...hang in there until the 3 month mark and it will get better.
I can say now that we are at the 3 month mark it is getting easier as she said it would. He still has all the same terrible side effects but we have adjusted more to our new "normal", we understand the rhythm of our week now and he is managing his side effects better.
He was UND at 8 weeks and 12 weeks. People ask me if he is "happy" now because the virus is undetectable. Certainly it is encouraging that he is UND but I would say "happy" is a stretch. The treatment has just been too difficult to feel "happy". Overall, we are just taking it one day at a time.
Drinking water does help and I can always tell when he has not been drinking enough water because he is even more fatigued and "foggy". He has not had any problems with his mood, and like I said in another post he seems more mellow. He has not missed a day of work but he has had to lighten his work load. He sleeps well and has not lost much weight. Probably the biggest problem is arthritis in his hip where the original injury from the ski accident was (he shattered his hip). He says he now knows what it is like to feel 90 years old and just walking is a chore. He is very short of breathe. It takes him at least 90 minutes to shower, get dressed and brush his teeth in the morning. He is very fatigued. His hgb and wbc counts are low. He has headaches, and a lot of body aches.
Overall though, he is much better now than in the beginning and we are hopeful he will be done at 28 weeks.
Ronna

Thanks Ronna for sharing, have to agree the first 3 months for some of us are a doozey.... it sets you free when you share with family and friends.. all the best in last leg of treatment for your hubby MJ

DJ · Senior Member

Zlikster wrote:

I guess it's too early to ask you do you have any Riba rage episodes...

So far I haven't felt this at all, kind of the opposite. I feel much more 'mellow'. As an example, an hour ago I went into my daughters' bathroom. They are 19, but are slobs. Normally, seeing toothpaste all over the sink would make me want to rant a bit about how in the world can you not use toothpaste without making such a mess. But I just cleaned it up, and frankly, I really don't care right now.

So the medicine is actually making me feel more 'mellow' than 'rage'.

And as for the dizzy.....if I am sitting, it isn't too bad. Just when I am standing, and mostly when I am standing still. BUT the first day I did feel it even when I was sitting. Probably the first week I felt it a lot....it felt like I was a little intoxicated (I don't drink much...well none now, but before I might have 2 glasses of wine once in a while with a special dinner out, and that is how it felt....a little intoxicated). But this week (week 2) I only feel the dizzy when I am trying to stand still in place for a long time (like yesterday at church). But right now, sitting here watching TV, I am not really feeling it at all.

And if you don't want to take pain meds, you might have a head ache. I do not know how bad it may be since I took Tylenol as soon as I felt it (and my doctor said to take 2 Tylenol before the injection). So it never got bad for me.

Oh, and I had no problems with the injection site, but my doctor said to count to 5 before pulling the needle out because most of the time the reaction (itching) at the injection site if from the medicine coming in contact with the skin. So I did this both time and no reaction on my skin at all. I don't really notice the injection sites at all.

Zlikster · Guru

wow, that was a great detailed report DJ! THANKS A LOT!

i will try to push my weekly shot for Fri (tho i am scheduled for Wed), but now that u said that Riba is making u dizzy for 8-9 hrs (and every 12hrs is next dosage) i wonder will i be operative enough to work from it ;/ My job is tho not mucho of a physical activity wise (i score music and sound desing), so dizziness might not be an issue.

I guess it's too early to ask you do you have any Riba rage episodes...

I do not intend to use any pain killers (i only used em once in my life, when i have broken my upper arm), nor do i plan to use any anti depressants. Would like to use natural mood/appetite "enhancer" compound like THC found in cannabis, but after reading about high expression of CB1 receptors in liver in chronic HCV GT 3 patients and it's correlation with steatosis i do not intend to use it. I will consult with my hepatologist in case i need some pain or depression management, but i would really like to avoid any other pills/meds intake other than vitamin supplements.

when was the last time u checked your viral load (before taking your first shot) and how often will you check it during tx?

thanks and good luck with therapy! hope u stay with minimal side fx!

DJ · Senior Member

Zlikster wrote:
Hi DJ,

thanks for report! since i got a call this morning from hospital that my therapy is approved, anxiety has been building up...

Have u decided to get interferon shot on Fri? How long after injection u feel not being able to work/function?

since it's ski season over here, i wonder will i be able to ski at least 2-3 times per week while on therapy...do you do any sport activities?

Are you keeping a journal since u have started your tx?

thanks!

Yes, I decided to take my injection on Friday because that gives me the weekend to feel better. I am a stay at home mom, so I have a bit of an advantage over when I can rest (especially since my 'kids' are in college now...still living at home, but they don't really need me...I had 'planned' to look for a job this year after their graduated high school but then a month after graduation I found out I had Hep C and I had to turn down the job I was wanting because I didn't feel like it was the right time to start something like that, I wanted to take care of this first).

So I can't really say about 'working'. But my experience is that the Ribavirin makes me dizzy. I know it is the ribavirin because I started feeling like that after I took it in the morning on the day I started treatment and BEFORE the injection. I feel dizzy for about 8-9 hours after taking the ribavirin. I could still drive if I needed to, but have chosen not to because I have 3 other drivers here and they can take on the driving for me (but I have drove to the store in the mornings BEFORE I take the morning ribevirin).

After the injection (which has only been 2 so far) I get a little headache. And it really is just a 'little' headache. Tylenol takes care of it. The first injection I had 'cold chills' but not with the second. I have been using Tylenol PM at night to help me sleep on the weekends so I may actually have more side effects and the Tylenol are just taking care of them.

So for me, the worse problem is standing. If I am walking, it isn't bad. But if I had to just stand for a while I would get dizzy (like at church yesterday when they have you stand to sing for about 5 songs in a row...I had to sit because I was getting dizzy....I was fine sitting).

I do get more tired. Not horrible. BUT I am 52 (almost 53) and really out of shape (I hate expercise). So if you are young and in shape you might not feel the tired so much. And by tired, it is just a little more than before.

I do think over time I will probably feel more tire (from anemia), but really, it has not been bad at all. Nothing like I had it built up in my mind. The 'dizzy' feeling is the biggest issue I have (if you have ever been on a cruise and when you get off and you still seem to 'feel' the earth moving like you did on the ship but it isn't....that is how it feels for me).

I haven't lost appetite or been unable to eat....DARN! This is the one side effect I was hoping for. But no stomach issue. After the first injection, there was a little loss of appetite, but not this week.

Hope that helps. Let us know how it goes for you. Good Luck!

Zlikster · Guru

Hi DJ,

thanks for report!

since i got a call this morning from hospital that my therapy is approved, anxiety has been building up...

Have u decided to get interferon shot on Fri? How long after injection u feel not being able to work/function?

since it's ski season over here, i wonder will i be able to ski at least 2-3 times per week while on therapy...do you do any sport activities?

Are you keeping a journal since u have started your tx?

thanks!

DJ · Senior Member

Mary Jane wrote:
DJ it's the drugs that make you dizzy.. and you understand the aniema info so keep up with your labs, and of course the older we get dang it the harder it is, and for me I still have the brain fog... all the best you're on your way peace and love MJ

Yes, it seem to be the Ribavirin that is making me dizzy. So it is a daily thing. My first labs are Feb 8th.

-- Edited by DJ on Tuesday 22nd of January 2013 03:49:07 AM

DJ · Senior Member

Zlikster wrote:
On same boat as you are (GT 3, naive)

approved today, getting on as soon as this Wed.

I am pretty optimistic i will handle short term sfx no matter how severe they are (except of course of severe anemia), my worries lay in long term fx on brain. hopefully 6 months won't do that much damage as would 12 months do.

all the best

Well there are more of us Geno 3's out there than I realized. I have had two pegatron injections so far and it hasn't been too bad. Mostly feel a little dizzy when I am standing and probably a bit more tired than usual. But nothing too bad. I slept fine through the night (but I did use PM pain reliever so that may be why). Good Luck!

Zlikster · Guru

On same boat as you are

(GT 3, naive)

approved today, getting on as soon as this Wed.

I am pretty optimistic i will handle short term sfx no matter how severe they are (except of course of severe anemia), my worries lay in long term fx on brain. hopefully 6 months won't do that much damage as would 12 months do.

all the best

DJ · Senior Member

Just to add....I am not taking ADs (never have in the past either so not sure how I would react to them). I am not on any medicines other than the Pegatron and Ribavirin and some vitamins and Tylenol as needed.

-- Edited by DJ on Tuesday 22nd of January 2013 03:04:20 AM

KMMM · Member

I hope your needle goes ok tonight.

My husband has always been VERY private about his hep C. He got it from a blood transfusion following a skiing accident in 1988 when he was 19 years old. We found out about his hep C in 1995 a month after we were married because of a blood trace back. He is 42 years old now. Prior to starting treatment I was the ONLY one who knew he had started treatment. Slowly but surely in the first few weeks of treatment (he has had quite severe side effects) he agreed to tell his parents, and close family, our kids and then close friends.

I can honestly say, that now that we are 3 months into treatment one of the best things I think for my husband was to share with family and friends what he is going through.

He has had a lot of family and friends that have just been terrific with support. Just this afternoon a friend of his came by who had gone through treatment with bladder cancer and they talked toghether and I think his friend was able to give him some good advice/support.

My advice to anyone would be to first and foremost, let family and friends be of support during this time. You would be surprised at the people who offers prayers and support when you need it the most.

The first 3 months of treatment have been pretty tough and in the beginning when things were REALLY bad, my husband's nurse said...hang in there until the 3 month mark and it will get better.

I can say now that we are at the 3 month mark it is getting easier as she said it would. He still has all the same terrible side effects but we have adjusted more to our new "normal", we understand the rhythm of our week now and he is managing his side effects better.

He was UND at 8 weeks and 12 weeks. People ask me if he is "happy" now because the virus is undetectable. Certainly it is encouraging that he is UND but I would say "happy" is a stretch. The treatment has just been too difficult to feel "happy". Overall, we are just taking it one day at a time.

Drinking water does help and I can always tell when he has not been drinking enough water because he is even more fatigued and "foggy". He has not had any problems with his mood, and like I said in another post he seems more mellow. He has not missed a day of work but he has had to lighten his work load. He sleeps well and has not lost much weight. Probably the biggest problem is arthritis in his hip where the original injury from the ski accident was (he shattered his hip). He says he now knows what it is like to feel 90 years old and just walking is a chore. He is very short of breathe. It takes him at least 90 minutes to shower, get dressed and brush his teeth in the morning. He is very fatigued. His hgb and wbc counts are low. He has headaches, and a lot of body aches.

Overall though, he is much better now than in the beginning and we are hopeful he will be done at 28 weeks.

Ronna

DJ · Senior Member

gloriag wrote:
Good luck!! Hope you're doing well on treatment
I started today...won't be giving myself the injection until tonight. Thinking about it gives me anxiety

I hope it goes well for you tonight. I did my first injection last week and I was quite stressed. I can honestly say, it wasn't nearly as bad as I had made it out to be in my mind. Let us know how it goes :)

gloriag · Newbie

Good luck!! Hope you're doing well on treatment smile

I started today...won't be giving myself the injection until tonight. Thinking about it gives me anxiety cry

Caryn · Senior Member

Hi Godsgrl, It looks like we will probably be starting at the same time! Good luck!

GodsGrl · Senior Member

Issues with my insurance prior authorization not back as of yet so I am scheduled to start treatment on 1-23-13. Feeling preety good and have a positive outlook. Just want to get it going and over and move on with life :)

Glad to hear DJ that your first shot was not as bad as expected. Pray I have simular reaction! Thanks all for kind words and advice. Water, excersize and positive attitude!

DJ · Senior Member

Oh I wanted to add....I took Judy's advice and started drinking a lot of water two days before treatment (I am trying for a gallon a day). Maybe that helped.....it nothing else, I didn't hurt :)

So you may want to try that too.

DJ · Senior Member

Well I started my treatment for Genotype 3 yesterday. It wasn't as bad as I thought it might be. I slept fine last night. I feel a little sore today in my joints, a small headache (but not much) and I get a little dizzy when I am walking around. But it wasn't anything terrible. The flu is much worse. A cold is much worse. This is just 'annoying'. Of course it has only been 22 hours, so maybe it gets worse. And maybe next week will not go as smoothly. I will add, I am someone who usually gets side effects (I have often joked how I should be hired by drug companies to figure out what side effects people get from drugs because I will get them). I was really scared yesterday. During training the nurse could tell I was nervous and when I gave my injection, I looked away because I can't stand needles (she said if I am not going to look my husband should sit with me to make sure I have pushed it in to get all of the medicine).

Oh and I only have a very small little dot where I injected. No bruising. She told me that the itching you get from the injection site is due to pulling out the needle too soon and some of the medicine is still on it and your skin reacts to it. So she said after I inject I need to count to 5 before pulling it out. I have no itchy or red patches other than a tiny dot when the needle went it. So I am going to try to remember to do that each time.

Good luck. Let us know how it goes!

2ndTimeAround · Member

GodsGrl wrote:
Ok it's been a long road to get to the point where I can actually start treatment, I am scheduled to start next Wed. I am geno type 3A so I only do double treatment. I am filled with all kinds of anxiety, I don't well with uncertainty! I am sure glad that I can turn to you guys, the true experts! Thank you all for your support and I will be leaning on all over the next 6-12 months. I have a few questions, I know side effects vary between each person but...... Do I really need to drink a gallon of water a day? Will I be able to work? Will I become angry or depressed? I am worried and scared. Is there anything I should do preventative? Thank you!

first off, all, none or some part of the sypmtoms u mentioned can happen. doc's job is to give u the worst case scenario, just like with cars, u're mileage may vary!

be positive! be realistic, listen to your body. drinking water is awesome, cleanses the system. make sure the people closest to u know what's going on, often spouses and family will notice mood changes long before u do. exercise, exercise, exercise...do something...little by little....u'll do great.

DJ · Senior Member

Cinnamon Girl wrote:
Hi DJ, I was also Gen 3 and was advised by my tx nurse not to take any herbal products at all while I was on tx, so you`re right that it`s definitely something that anyone considering it should check out with their medical team first. I was told it was ok to take a multivitamin (without iron), but that`s all. ~ Jill

Oh OK. Well I am hoping I won't need to take anything. Thanks.

Cinnamon Girl · Guru

Hi DJ, I was also Gen 3 and was advised by my tx nurse not to take any herbal products at all while I was on tx, so you`re right that it`s definitely something that anyone considering it should check out with their medical team first. I was told it was ok to take a multivitamin (without iron), but that`s all. ~ Jill

DJ · Senior Member

I talked to my doctor and also to an online nurse who works with Hep C treatment, and both said that it was OK to take St John's Wort when treating Genotype 3 Hep C. I guess it is bad to take when the third drug is added for the genotype 1 treatment.

Of course ask your own doctor first if you want to try it. I am going to buy some, but haven't decided if I will take it (not taking it tomorrow anyway, maybe will if I feel depression coming on).

Cinnamon Girl · Guru

Hi Jeri, you are young compared to a lot of us here! wink Sounds like you have a great attitude and a good support network in place...and by the way the Darts Club is open 24/7!

All the best to you! smile ~ Jill

Iris Dragonfly · Guru

Hi Jeri, welcome back! best of wishes as you travel down the path of treatment smile Iris

mallani · Guru

Hi Jrei, as Neil said, the fat is only for Incivek. Riba does not need fat, just a snack. Whether to take Vitamin supplements is up to you- most people don't need them. You could ask your doc for a simple blood test for your Vit D levels- if these are normal, you don't need Vit D, but small doses don't do any harm and make patients feel proactive. Same with Vit B12. Make sure multivites don't contain Iron- we try to avoid that.

Neil_Canuck · Senior Member

The fat is for the Incivek....helps with absorption. With the Victrellis the fat is not part of it just a snack when it's meds time.

GodsGrl · Senior Member

Thank you all for your input, I actually feel a lot better just knowing I can turn to you guys!! Thank God for not needing to drink a gallon of water, I did for two days and gees I was in the bathroom most of the day! It would be hard! I drink a lot of water as is. I have a pretty low stress job so I think I'll be ok. Been trying to eat better, it's not easy but is doable. I take vitamin D3 daily and have fatige but D# helps. I will be Wed. night dart club, just works better with my schedule! I have a supportive family and friends as well as a supportive Church family. I'm real open about being HCV + I work with high risk youth and talk to them daily about choices, risks and consequences! I know this is not going to be fun or easy but ......when life gives you lemons make lemonaide right..... smile

Question is it Ribo that you take with fats?

Glad to hear you all think I'm young lol!! Started a bucket list, may hold off now :)

Neil_Canuck · Senior Member

I think he said or I read that B-12 helps with fatigue. My brothers girl friend helped a former boyfriend through treatment a few years ago and she said shots of B-12 are recommended as well. Next time I see my MD I'll request a shot.

Function; Why it is Recommended

Like most of the vitamins, B12 is required as a cofactor for various enzymes. Every DNA-synthesizing cell requires vitamin B12. It facilitates the cyclic metabolism of folic acid, which is essential for thymidine (one of the four DNA bases) synthesis. It also transfers a methyl group from methylfolate, helping to convert homocysteine to methionine.

DJ · Senior Member

Neil_Canuck wrote:
I'm pretty sure that St. John's Wort is a no no during treatment as I seem to remember it was contraindicated. My HCV nurse told me not to take any supplements during treatment except a multivitamin and B-12 and D-3. Told me to stop taking milk thistle as well. Also to only use aceteminophen (Tylenol) as a pain reliever as the others affect the blood.

My doctor had me start on the D3 also, but didn't mention B12. Is the B12 to help your treatment? Or are you taking it for something else.

Mary Jane · Guru

Hello Jeri,

Glad you got to this road for treatment. Heed the advice the others have posted ,we all have, or are traveling the same path. Knock on wood or my head , I 've kept my sense of humor , and this forum has helped me as well, best thing I ever did for myself was joining. I am in week #17.. I did the Invevik. Riba keeps me restless at nite, so I do a xanex since I have been on this medication in the past for anxiety, the doc felt it was ok to continue and it has helped me sleep at nite. Working it varies from person to person depending on phycial and mental aspects of your job. Just a note I was a nervous wreck to get started , this tends to be the mindset for most .. all the best with your treatment.. peace and love MJ

Neil_Canuck · Senior Member

I'm pretty sure that St. John's Wort is a no no during treatment as I seem to remember it was contraindicated. My HCV nurse told me not to take any supplements during treatment except a multivitamin and B-12 and D-3. Told me to stop taking milk thistle as well. Also to only use aceteminophen (Tylenol) as a pain reliever as the others affect the blood.

Adamos40 · Veteran Member

Hi Jeri,
Welcome and good luck with your treatment. I believe there are really positive outomes for genotype 3a. You'll find lots of care, support and wisdom on the forum. It has helped me get through my first 12 weeks of treatment. Keep coming back, all the best, Adam

DJ · Senior Member

Well after asking about St Johns Wort I goggled the question and found this discussion. Sounds like it isn't a good idea to take it with treatment.

http://www.medhelp.org/posts/Hepatitis-C/depression-from-treatment/show/1700579

I guess we will see how things go.

DJ · Senior Member

Hi! I guess we will be starting this almost together. I am suppose to start on Friday (just waiting for the pharmacy to confirm shipment, but they said they would call me later today). I also have Genotype 3 so will only be doing the 2 meds for 24 weeks.

My doctor told me to drink a gallon of water a day, but I am happy to hear that it isn't a 'must'. I am going to try starting tomorrow to drink extra because it was suggested that I start a couple days ahead of time.

I am also very nervous. I have not told my friends or church family. I am not sure how I will handle it along the way. I have not started an AD. I am hoping not to have to take them. I know someone who had a very bad reaction to them so ADs scare me (not sure if St. John's Wort is alright to take on treatment, I took that after my mother's death a while back for about 4 months and found it helpful.....does anyone know if it is OK to take that while on treatment?).

Anyway, wishing you luck. I will probably post how things go for my first shot on Friday. I am going to do it at the doctor's office when she gives me my instructions.

2willy · Senior Member

Welcome, I am not on anti depressents and about half of the ones I know are either on or not on. I think the main point is that you make sure that you monitor yourself prior to taking the anti's. They did not do this for me and blood pressure went to 246 - 220 in a week and I was sleeping 17 hours a day and went from "where did i put that hammer to did I ever have a hammer. If possible make sure you are assessed for problems and also if possible look up the side effects of the drug and how long they are suppose to be perscribed. I a fortunate to have a very strong support group in a 12 step program and have been in for over 25 years. Still the best advise I was ever given was to stay out of my head, donn't let the hamster get on that wheel at niight and try to help others. Yes you will have to stay a way from some people while on the tripple, but maybe we should have stayed away from them anyways

Bill and Family

JoAnneh · Guru

I started antidepressant two months before tx , 10 mg of Lexapro.
I believe it has helped
A lot. As last time on tx 11 years
Ago I was very angry/depressed
Not this time so taking AD worth it for me.
I still get edgy some but nothing like 1st
Time on tx. I am a lot happier this time
Plus I told people this time and have a great
Group of friends at church that cooked weekly
For my family for 12 weeks while on Invicek.
This forum is another reason I have better outlook.
It has been invaluable.
Welcome!!

Cinnamon Girl · Guru

Hi Jeri, it`s good news that you`re about to start tx at last! You`re right that the sx do vary quite a lot from person to person but your age is on your side and many people are able to carry on with their normal daily work with maybe taking some extra rest in the evenings and at weekends after their shots, which most people do on a Friday night. (Check out the Friday Night Darts Club thread!)

I agree with Malcolm that a gallon of water would be too much. I`m quite sure I didn`t drink that much when I was on tx, and I would say that the best thing is to be guided by your thirst, and you will feel thirsty! Most people find that adequate water intake throughout the day does help with minimising their sx too.

It`s difficult to predict whether you will experience any feelings of depression or anger (commonly know as `riba rage`), but if you do start having problems your doctor should be able to prescribe a mild antidepressant to help if necessary. See how you get on, take it day by day and I hope it all goes smoothly for you. Try not to worry, it really is do-able and we will be here for you all the way.

Don`t hesitate to ask as many questions as you like, and remember there`s a `search` box at the top of the page if you`re looking for something specific. smile ~ Jill

mallani · Guru

Hi Jeri, welcome to the forum. Your Genotype has excellent results with Peg and Riba and you will only do 24 weeks. At your tender age you should have few side effects and with your Riba dosage of 800 mgms/day, you should not have significant anaemia. Drink as much as you need to stay hydrated and produce enough urine. Patients on triple therapy need to drink more water, but a gallon is far too much. Side effects can vary, but I hope you have an easy ride. Cheers.

GodsGrl · Senior Member

Ok it's been a long road to get to the point where I can actually start treatment, I am scheduled to start next Wed. I am geno type 3A so I only do double treatment. I am filled with all kinds of anxiety, I don't well with uncertainty! I am sure glad that I can turn to you guys, the true experts! Thank you all for your support and I will be leaning on all over the next 6-12 months. I have a few questions, I know side effects vary between each person but...... Do I really need to drink a gallon of water a day? Will I be able to work? Will I become angry or depressed? I am worried and scared. Is there anything I should do preventative? Thank you!

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