Victrelis

[rockymoe]

i am on 5th day of triple treatment. I find the Bocep intensifies all theSOC sides and I have been very nauseaous and the taste in the mouth *****. I find if I take them with a few Jr mints it helps. Right now the Halloween candy is out so they have those little boxes out. i saw someone put on her toast! You won't catch me doing that, i find it hard enough to get a piece of toast down with cinnamon butter on it. eating is not something i enjoy right now everything taste the same which is no taste☺

[cliff1961]

Hi

My Fiancee' finished her treatment on Victrelis only 3 months ago and in the very begining her Liver Specialist stated she would be Ok to work.

I encouraged her to go on leave of absence, the first 3 months may not be so bad but the more of the drugs that build up in your system the worse you will get.

From the 3 month onwards will be the worse. Your Red Blood Cells will start dropping this carries oxygen through your blood stream, then you will become Far more weaker and fatigued and will require a Blood transfusion if dropped below 8.5.

Some may just settle for a procrit shot which has painful side affects which creates more blood cells from the Bone Marrow and can be painful.

beside the Red blood cells dropping your white blood cells will also drop which fights of infections and support your immune system, picking up infections will be far easier when the white blood cells drop.

During the course of treatment you may have the ability to go out for an hour but have to get home as you will be so weak and fatigued.

Regardless where you are Diarrhea will be a 24 hour problem almost every day after 3 months.

The treatment can DAMAGE your bones creating them to become more brittle and suffer with Osteopenia or Osteoporosis.
Chat with you doctor in which to take some Calcium, Vitamin D in which to reduce the Severity of Bone damage.

Good Luck!

[BoceprevirGal]

Hi, I'm on week 9 of triple therapy with Victrellis.  It is fairly common, with Triple therapy, to get anemia, which will make you tired, and I have a hard time going up stairs, because it is hard to catch my breath, and it makes me dizzy/faint. Your Doctor will treat the anemia, with a "rescue med", but it may take up to 6 weeks to work, or may not work at all.
   So it really depends on what you do for a living, and what side effects you end up with. If you dont get bad anemia, the other side-effects are more tolerable, like: I'm a little nauseous, but I counter that by eating lots of little snacks. And the Victrellis can cause a bad taste in the mouth, so I brush my teeth all the time, and use Biotene mouth-wash.

[pooh55811]

Hello, and welcome to the forum.

You may get a much better response if you start your own thread. This one is older and some may not look at it. Go to the orange bar ans post a question.

I was not on Victrellis. I was Incivek as well as Pegasys and Riba. The triple med treatment is not a walk in the park but everyone does react differently. Some have few side effects and others have more side effects. Some have mild side effects and others have more serious side effects. Plus, the side effects change from day to day. Incivek has more anal issues and rash issues and Vic has more anemia.

The docs are not always realistic and most seem to be clueless when it comes to side effects. They do not recognize their severity and they do not get on top of them with treatment soon enough. You have to your own advocate. I think your doctor is not being realistic when he says you will be fine to work. No one knows that until you are on the meds. Some are, but some simply cannot work.

Many work while on treatment but some cannot. It depends on your side effects. If you do demanding physical work and work long hours or are climbing or lifting or working with power lines, that may be a problem. Fatigue is a major side effect and if you get anemic, the fatigue will be even worse. Weakness if another side efect. If you have a desk job, it would be easier. However, if working is Plan A, then be sure to also have a Plan B and a Plan C. Plans B and C could be sick time, vacation time, comp. time, short term disability, long term disability, family medical leave, part time work, working shorter hours. It would be wise to discuss this issue with your boss before you start treatment. Even if you do not disclose what disease you have, the boss should be aware that you are under treatment and may have problems working. That way you can come up with some alternatives prior to starting treatment.

Let us know of any specific questions you have and we will try to respond.

[dtowngirl36]

I just recently had my second biopsy and found that my hep c has caused my liver to become fibrotic. Treatment has now come to the conversation and with Victrelis coming on the market and with such rave reviews I am excited. That being said....I am terrified. I dont know what to expect and scared of what it will be like. My doctor stressed that it is not pleasant and has harsh side effects. I wanted to take a leave of absence from work but the doc said I should be fine to work? I am thoroughly confused. I will be going soon to have a face to face with the doc to decide what I will do. Finding this thread makes me feel not so alone....thank you

[Grandmajane420]

Sounds like you got it. BC will only pay for one round of pega/riba therapy, that means if you did the first round before victrelis was available you are poop out of luck. They won't pay again. I am fortunate enough to have extended medical through my husbands work, so I am covered for everything. We live in a fairly remote area, with a high population of people with hep c. there are only 3 people in our area going on the victrelis treatment, pretty well all that have hep c took the first treatment. Now no one else has coverage to pay. We are hoping for changes to that ruling.
Thank you for the well wishes, right back at you! :)
Are you on victrelis? when did you start? how are you doing?

[willbb]

Welcome to a fellow Canadian. I am in Ont.  I was quite interested in reading about  what you were saying in regards to the provincial coverage as it pertains to HCV in B.C I am not sure I understand fully what you were saying  ...that they will only pay for one treatment? What about  Vic and Inci?  Do you have private coverage or are you looking to the provincial plan.

I am very familiar with the Ont. plans,however please excuse my ignorance on B.C.

If you wouldn't mind explaining for me I would much appreciate it..

Good luck with the Vic therapy and  again..welcome to the zoo..   :)

Will

[Grandmajane420]

Thank you for the welcome. :)

[pooh55811]

Welcome to the forum and congratulations on starting treatment. This is a very helpful forum and there are several extremely knowledgeable people on this forum. Hopefully you will post any questions or problems you have and several people will chime in with answers.

I wish you the best in your treatment.

[Grandmajane420]

Just starting today with my 4 week lead in, on week 5 we add the vic. This is round 2 for me last round was back in 2005. I was a relapser after 6 months. In BC Canada healthcare will only pay for your first round of peg/riba, and the Vic has only just become available. Without extended health plan I would not be able to afford treatment, peg/rib is almost $2000. per month and then the vic will add another 900 - 1400. per month. Many in our area went the first round and failed and now can not retreat with Vic.
My first round beat me down good, recovery was faster then I thought. I'm a little nervous about adding the Vic. last round I was put on eprex  1/2 wat thru for very low red and white count.my hair loss was fair to middlen, I had to stop using nioxin it started to make it worse after a few months. I just use joico thickening now, but time will tell how that will work. I am surprised to hear that some are on round 8. CHEERS to you for puttin yourself thru this so many times!!  I think having brain fog and moodiness would be the worst thing that my family had to deal with. I work part time now and am hoping I can still do it. Last round I was able to be a vegetable on the couch and had no pressing obliations, it was still hard.

I am glad I found this forum and sure hope to hear all of your stories on how things are progressing.

[can-do-man]

Congrats on your fantastic start, get used to that nasty taste though, looks like with your response the odds are on your side for being und at week 8.

Keep on keeping on.
cando

[MelvynB]

Just finished week 2 of victrelis. No major sides.  The worst is the metal taste in my mouth. 4 week load went from 4.6million to 26,000. 8 week test coming up in Jan. if I am clear then it looks like the 28 week program rather than 48. The interferon is the bear. For 48 hours after the shot I am pretty beat up but then feel better as the week goes on. I started treatment 11/18/11 and can honestly say it is not as bad as I thought it would be. Still play tennis 2 times a week albeit not as competitively as pre-tx. I am 1a, 59 years old. Never had treatment before. Stage 1 grade 1 on my last biopsy.

[rockymoe]

I will ask about the Phenergan next appointment!

[rockymoe]

No my husband and kids do not HCV he has just been with thru all my treatments. i am just not sure what they are reading I have an appointment on 10/11.
I use WEN on my hair expensive but it last a long time and it's very gentle. I just started a new one called 6/13. i order it at QVC online.
The second week of the VIC I had a tooth that abcessed and it was under a bridge I had done in 08. The dentist said she had no idea why the tooth got infected because the bridge was perfect. let me tell you that was the week from hell.

[frijole]

rockymoe -- I just gasped when I read your HGB.  That frightens me.  They are not looking at procrit?  I cannot believe you have been through this 8 times before -- are you saying both you and your husband have treated that many times or just you.  Yes, it is a challenge to not divorce during treatment!

streamline -- I looked yesterday and it is the #2 I want to buy.  The #1 is for norma land thinning;  the #2 is for noticably thinning, and the #3 and I think 4 are for chemically treated hair -- which I take to mean dyed, not chemically treated from the inside - ha ha.  Anyway, I didn't get any yet.  They have a starter pack for about $42 with small bottles and all of the big bottles I found were the wrong numbers, but I need to go ahead and do it.  That mall just wears me out!

[cliff1961]

My Fiancee' named Bobbie has been taking  Phenergan, it helps a little but does not get rid of the Nausea.
Ginger is supposed to be very good for nausea / upset stomach try some Ginger ale, Ginger snap Cookies, get a little root fresh Ginger, and peel approx 1" of the Ginger, then slicethe remain thinly put into approx 2 pints of water and bring to the boil and simmer for approx 20 minutes, add a little honey to sweeten if desired.

[streamline569]

Which Nioxin did you use. I have the shampoo, conditioner and the therapy spray. I just spray the spray on the days I'm not shampooing hoping it will help my scalp although I find it to be a bit itchy sometimes. I think the therapy spray may be a little irritating.

[can-do-man]

Sorry to hear your having a tough time, that nausea can be terrible, have you talked  to your doctor about taking Phenergan? When i was on VIC that was the only thing that worked for me..............Hang in there

[rockymoe]

I am tired and I will be glad when my next appointment gets here. This treatment has hit me the hardest The sx's usually calm down but not this time even the zofran doesn't help the nausea. I will keep you posted when I get copies of my labs!

[cliff1961]

My Fiancee' had her HGB dropped to 9.0 and was left alone, now it has dropped to 8.3 they had given her the opportunity to have "procrit" shots weekly or a blood transfusion. Along with that they have reduced her Ribavirin from 1000mg down to 800mg.
There are advantages and disadvantages in either option you choose and these are some which i gathered from a friend who is a nurse and once suffered Hep C.


The biggest differences are, with the blood transfusion, the improvements are immediate and there is no risk for her body overproducing red blood cells and risking a spleen rupture. A blood transfusion will last usually about 4 weeks until the red blood cells wear out. The biggest worry is rejection where she'd spike a fever or contamination -which is much, much less than it was even 5 years ago. The blood is screened much more carefully now -if it were me, I'd risk it, but I understand her fear as well.


With the Procrit, it forces the bone marrow to produce red blood cells -and the results take about two weeks to begin to show improvement. The "forcing" process can cause severe bone aching (some do not have this) and the shot will continue to work for about 3-4 weeks, possibly requiring another injection in a month to 6 weeks. It can also make the bones produce too many red blood cells, causing blood clots, strokes, and spleen rupture.

Either way, neither should be take lightly. If both of the treatments work the way they are supposed to and without complications, both are excellent.

[evangelin]

Glad the fever/ chills aren't getting you because that would be hard to hide at work.  
Joe is doing better this week than he did last.  The nausea is under control.  Some grouchiness is occuring and we are all approaching with caution.  :>)
Hope you can keep up the cloaking device at work.  I know it must be difficult but I admire your toughness.
Best Wishes,
Ev

[evangelin]

That all sounds very difficult.  You are due a happy ending to all this.  Your Hgb sounds like it needs immediate attention if it is 7.
I do hope it will work for you this time.
Blessings,
Ev

[sandysf]

Your HGB was 7 and they said that was OK?  I think not.  Did you talk to the doc?  7 seems dangerously low to me.. you must feel terrible?  Did they discuss procrit or a transfusion?  

[rockymoe]

they called to tell me my labs came back ok but my hgb dropped from 12 to 7 so that is why I am feeling the shortness of breath and lack of energy but was still ok. will have anther in 2 weeks and can get copies of my labs.

[rockymoe]

This is Round 8  since diagnosed in 99 for my husband and I. the clinic I go to has a full time hep c nurse which is great. she asked me about irratability and I said I've snapped at my husband a few times. She said they have seen people divorce after treatment. I said well if we have made it thru all the treatments so far this one isn't going to break us. I have to say he has been much more understanding and patient this time. This treatment has been one of the worst and I think it is because before I went from one treatment to another all with interferon and Riba included. This time I had a three year break in between, and wre are hoping that all the sx means it's working and are praying. It definately test the in sickness and in health!