I am feeling for you after reading your post. My husband is on triple therapy with Victrelis and has 3 and half weeks to go of a 48 week treatment - Yah!!! We were exactly where you are, wondering how the heck we would get through the whole 48 weeks. It was absolutely daunting at times. The forum has been great for loads of information and to have a whinge every so often when the days are a little black.
You will get through this just as those before you have and those after you will.
With regard to light exercise - on those early weeks, my hubby and I tried to walk a few times a week, even just for 15-20mins. In these later weeks, he can do much longer and is fine.
All the best on your journey! Caroline
Cinnamon Girl said
May 29, 2013
Hi Barry, yes Aranesp does the same job as the ones I mentioned. It stimulates the production of red blood cells which carry oxygen around our bodies. As Malcolm said, anaemia is caused by the treatment drugs you`re taking and it`s usual for your doctor or nurse to take appropriate action when your red blood cell count drops below a certain level, so you can continue on your tx.
Make sure you take your ribavirin with food or a snack and it shouldn`t cause you any stomach irritation.
I understand where you`re coming from regarding the antidepressants, and it`s not the best route for everyone. I`m glad you`re able to work from home sometimes, that will take some of the pressure off you I expect. Having to take a step back from your usual activity levels is difficult for a lot of people to get to grips with but it`s part of the process. Keep reminding yourself that you`re not being weak, you`re doing what you need to do for the sake of your health and for your family. Do what you can to deal with the stress and if you feel like having a moan or a rant use this forum, we`re here to support you!
Corrischap said
May 29, 2013
Many thanks for your kind and encuraging replies. Four people whove also cleared is music to my ears
The drug given for my aneamia is calld Aranesp and dont know if it relates to any ofthe drugs in CinamonGirl's message. Heres a link:
Theres two bits Im struggling with: a) taking it easy - as an ex addict I have the desire to push myself and that taking a step back is a sign of weakness hough saying that Im listening to my body today and am working from home b) antidepressants - again as an ex addict I dont like taking mind altering subtances thatay be addictive.
When you say light exercise - can you give examples please
I m qute surprised that the first week of Bocep was ok. Second third week feels like ive been hit by an express train. I have my peg injection on monday so that I feel crap during the week rather than at the weekend. Im going to try the cracker suggestion. Ive also heard that probiotic yoghurt is good for replacing the lining of the stomach the Riba removes?
I like the Bocep BootCamp analogy - that brings out the stubborness of me as well as the sea one. Always fancied myself as a pirate. And thanks for grounding me on the one day at a time message and keeping my mouth shut. Bring in old tools used for previous problems! AA is so together.
many many thanks
mallani said
May 29, 2013
Hi Barry,
Welcome to the Forum. I can relate to everything you say. I finished 48 weeks of the Victrelis triple 15 weeks ago, but I'm almost back to normal, and remain undetected. I often used the Forum to 'Rant'n Rave' as the pill burden, fatigue and Riba. rage took hold of me. The support of the Forum helped me get to the finish line. I'm old and cirrhotic, so all the side effects (Sx) were more pronounced. However these drugs work, and I never thought of quitting.
You need to accept this will change your life and as Vern said, take each day as it comes. Rest as much as you can, and if you feel up to it, do some light exercise. I felt sorry for myself and just slept or sat and watched TV- this led to severe muscle wasting, so try to exercise. You'll get used to the metallic taste, dry eyes and skin, dry mouth, hair loss and weird appetite. When you're cranky, try not to lash out at your loved ones- just go to bed. The Victrelis combo causes anaemia, so the fatigue and shortness of breath are to be expected. Feel free to have a rant here whenever you like. All the best for your 8 week Viral Load. Cheers.
JoAnneh said
May 28, 2013
Hey Barry, You are well into treatment now! I struggled with the no energy As always been very active too. It irritated me to no end then I Surrendered to the idea and embraced/accepted the need to rest. Read and watched TV a lot! You have a long way to go You have already overcome many hurdles. Our goal is to save our liver which we Can't live without! Eat lots of plain crackers to settle the nausea. Count your blessings and not your burdens. Keep using forum to rant as needed, we don't Take it personally as family will:) My doc required I take antidepressant to Help with RIBA rage. This forum is a safe haven with great encouragement and knowledge. You can do this!! As 12step guy suggested One day at a time. We are pulling for you. I just finished 48 weeks last month.
12Step Guy said
May 28, 2013
Barry, actually despite the way treatment is grinding on you, it sounds like you have good insight into yourself and sides. There is no way that I could could look at it as 42 weeks. Doing it one day, one hour, 5 minutes at a time worked best for me. Not sure how much alone time you are getting, you might try encouraging your family to take a weekend holiday to give all of you a break from each other. Carol, my spouse took 5-6 short trips to visit family and friends during my 48 weeks. It did wonders for both of us.
I think you can use vibrant and 42 weeks of being adrift, seasick and feeling cursed in the same sentence. yet I wonder if it isn't more difficult to do then to say.
Stay the course. If need be. lash yourself to the main and steer into the wind. Bite the Bull by the horns. Welcome to Boceprevir Boot Camp.
Corrischap said
May 28, 2013
Hi
Into seventh week of treatment of triple (Bocep 3rd week), previous 2 attempts on double, genos 1 and 2. Bloody hell this is tough. My life feels like its on hold and consists of tacking meds at 6.30, hour travel to work = travel sickness, get to work = feel sick. more meds, go home = feel sick, no diet, and go to bed, more tablets and sleep. Since starting Ive felt nothing but nausea, fatigue, grumpiness, a desire to eat only to have this dashed a few minutes later, a horrible taste in mouth. In the third week my body and hair turned orange for a few days (which no one could put their fingers on). The good news is that my VL dropped from baseline of 6000000 to 60000 at end of week four. The prospect of another 42 weeks (see theres still optimism!!) is daunting. No matter what way I try to count down, nothing makes me feel any better that end date is getting nearer. I really feel for my partner and kids who have to put up with me! Aside from work I manage a day where I either work on house, or go out. The following day I just collapse. I get out of breath really easily and have had a booster injection to improve oxygen levels. Four days in and doesn't seem to have made any difference. Any tips to get through this would be really appreciated as there are some days when I think I just cant stand the gnawing away of feeling sick and lack of energy. I know this is an investment and that after 42 weeks I will be free from this bloody virus once and for all (still positive). Im a vibrant active person and this is killing me by stopping me from enjoying life. Forgive my rant but when people tell me I look really good, I could effin swing for them.
Barry
Cinnamon Girl said
May 28, 2013
Welcome, Barry, you`ve come to the right place, sorry to hear you`re having such a rough time. We all understand how difficult it can be, and there`s plenty of people here who have had experience of doing treatment with victrelis (boceprevir) and other drug combos.
So, was the booster injection to increase your red blood cell count? Epogen or Procrit, or similar? Some of our members have said it can take a week or so to take effect, so give it time. Anaemia can make you very tired and short of breath, and is a common side effect.
As JoAnne mentioned, some people find anti-depressants very helpful to smooth out the irritability and general bad temper, and it`s important to try and get plenty of rest and relaxation. Is there any way you could cut down on your working hours to make things easier, or take some leave? This won`t last forever and you need to do whatever you can to make the process as easy as possible!
Keep in touch, and best of luck this time round! ~ Jill
Hi Barry,
I am feeling for you after reading your post. My husband is on triple therapy with Victrelis and has 3 and half weeks to go of a 48 week treatment - Yah!!! We were exactly where you are, wondering how the heck we would get through the whole 48 weeks. It was absolutely daunting at times. The forum has been great for loads of information and to have a whinge every so often when the days are a little black.
You will get through this just as those before you have and those after you will.
With regard to light exercise - on those early weeks, my hubby and I tried to walk a few times a week, even just for 15-20mins. In these later weeks, he can do much longer and is fine.
All the best on your journey! Caroline
Hi Barry, yes Aranesp does the same job as the ones I mentioned. It stimulates the production of red blood cells which carry oxygen around our bodies. As Malcolm said, anaemia is caused by the treatment drugs you`re taking and it`s usual for your doctor or nurse to take appropriate action when your red blood cell count drops below a certain level, so you can continue on your tx.
Make sure you take your ribavirin with food or a snack and it shouldn`t cause you any stomach irritation.
I understand where you`re coming from regarding the antidepressants, and it`s not the best route for everyone. I`m glad you`re able to work from home sometimes, that will take some of the pressure off you I expect. Having to take a step back from your usual activity levels is difficult for a lot of people to get to grips with but it`s part of the process. Keep reminding yourself that you`re not being weak, you`re doing what you need to do for the sake of your health and for your family. Do what you can to deal with the stress and if you feel like having a moan or a rant use this forum, we`re here to support you!
Many thanks for your kind and encuraging replies. Four people whove also cleared is music to my ears
The drug given for my aneamia is calld Aranesp and dont know if it relates to any ofthe drugs in CinamonGirl's message. Heres a link:
http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Anaemia%20%28all%20types%29&medicine=aranesp&preparationAranesp%20100micrograms/0.5ml%20solution%20for%20injection%20pre-filled%20syringe
Theres two bits Im struggling with: a) taking it easy - as an ex addict I have the desire to push myself and that taking a step back is a sign of weakness hough saying that Im listening to my body today and am working from home b) antidepressants - again as an ex addict I dont like taking mind altering subtances thatay be addictive.
When you say light exercise - can you give examples please
I m qute surprised that the first week of Bocep was ok. Second third week feels like ive been hit by an express train. I have my peg injection on monday so that I feel crap during the week rather than at the weekend. Im going to try the cracker suggestion. Ive also heard that probiotic yoghurt is good for replacing the lining of the stomach the Riba removes?
I like the Bocep BootCamp analogy - that brings out the stubborness of me as well as the sea one. Always fancied myself as a pirate. And thanks for grounding me on the one day at a time message and keeping my mouth shut. Bring in old tools used for previous problems! AA is so together.
many many thanks
Hi Barry,
Welcome to the Forum. I can relate to everything you say. I finished 48 weeks of the Victrelis triple 15 weeks ago, but I'm almost back to normal, and remain undetected. I often used the Forum to 'Rant'n Rave' as the pill burden, fatigue and Riba. rage took hold of me. The support of the Forum helped me get to the finish line. I'm old and cirrhotic, so all the side effects (Sx) were more pronounced. However these drugs work, and I never thought of quitting.
You need to accept this will change your life and as Vern said, take each day as it comes. Rest as much as you can, and if you feel up to it, do some light exercise. I felt sorry for myself and just slept or sat and watched TV- this led to severe muscle wasting, so try to exercise. You'll get used to the metallic taste, dry eyes and skin, dry mouth, hair loss and weird appetite. When you're cranky, try not to lash out at your loved ones- just go to bed. The Victrelis combo causes anaemia, so the fatigue and shortness of breath are to be expected. Feel free to have a rant here whenever you like. All the best for your 8 week Viral Load. Cheers.
You are well into treatment now!
I struggled with the no energy
As always been very active too.
It irritated me to no end then I
Surrendered to the idea and
embraced/accepted the need to rest.
Read and watched TV a lot!
You have a long way to go
You have already overcome many hurdles.
Our goal is to save our liver which we
Can't live without!
Eat lots of plain crackers to settle the nausea.
Count your blessings and not your burdens.
Keep using forum to rant as needed, we don't
Take it personally as family will:)
My doc required I take antidepressant to
Help with RIBA rage. This forum is a safe haven
with great encouragement and knowledge.
You can do this!! As 12step guy suggested
One day at a time. We are pulling for you.
I just finished 48 weeks last month.
Barry, actually despite the way treatment is grinding on you, it sounds like you have good insight into yourself and sides. There is no way that I could could look at it as 42 weeks. Doing it one day, one hour, 5 minutes at a time worked best for me. Not sure how much alone time you are getting, you might try encouraging your family to take a weekend holiday to give all of you a break from each other. Carol, my spouse took 5-6 short trips to visit family and friends during my 48 weeks. It did wonders for both of us.
I think you can use vibrant and 42 weeks of being adrift, seasick and feeling cursed in the same sentence. yet I wonder if it isn't more difficult to do then to say.
Stay the course. If need be. lash yourself to the main and steer into the wind. Bite the Bull by the horns. Welcome to Boceprevir Boot Camp.
Hi
Into seventh week of treatment of triple (Bocep 3rd week), previous 2 attempts on double, genos 1 and 2. Bloody hell this is tough. My life feels like its on hold and consists of tacking meds at 6.30, hour travel to work = travel sickness, get to work = feel sick. more meds, go home = feel sick, no diet, and go to bed, more tablets and sleep. Since starting Ive felt nothing but nausea, fatigue, grumpiness, a desire to eat only to have this dashed a few minutes later, a horrible taste in mouth. In the third week my body and hair turned orange for a few days (which no one could put their fingers on). The good news is that my VL dropped from baseline of 6000000 to 60000 at end of week four. The prospect of another 42 weeks (see theres still optimism!!) is daunting. No matter what way I try to count down, nothing makes me feel any better that end date is getting nearer. I really feel for my partner and kids who have to put up with me! Aside from work I manage a day where I either work on house, or go out. The following day I just collapse. I get out of breath really easily and have had a booster injection to improve oxygen levels. Four days in and doesn't seem to have made any difference. Any tips to get through this would be really appreciated as there are some days when I think I just cant stand the gnawing away of feeling sick and lack of energy. I know this is an investment and that after 42 weeks I will be free from this bloody virus once and for all (still positive). Im a vibrant active person and this is killing me by stopping me from enjoying life. Forgive my rant but when people tell me I look really good, I could effin swing for them.
Barry
Welcome, Barry, you`ve come to the right place, sorry to hear you`re having such a rough time. We all understand how difficult it can be, and there`s plenty of people here who have had experience of doing treatment with victrelis (boceprevir) and other drug combos.
So, was the booster injection to increase your red blood cell count? Epogen or Procrit, or similar? Some of our members have said it can take a week or so to take effect, so give it time. Anaemia can make you very tired and short of breath, and is a common side effect.
As JoAnne mentioned, some people find anti-depressants very helpful to smooth out the irritability and general bad temper, and it`s important to try and get plenty of rest and relaxation. Is there any way you could cut down on your working hours to make things easier, or take some leave? This won`t last forever and you need to do whatever you can to make the process as easy as possible!
Keep in touch, and best of luck this time round!
~ Jill