Hep C Discussion Forum

news · Guru

RE: Only Four More Days of Incivek

JoAnneh · Guru

Thank you Alan! But I must be honest I was the girl in school Who had it all....friends, popular, made good grades, teachers pet or pest:), cheerleader, in the Student Council and turned into a drug addict during summer before 9th grade!! I Managed to graduate early from high School and was employed at age 17 w a State agency yet I Battled drugs on and off. I tried everything church, marriage, child, home etc.... Finally at age 27 i stopped! I haven't touched alcohol or drugs and now I am 52 years old and cometely sober in AA for over 25 years. I have volunteered at children's home, mission homes Helped addicts sober up, I have raised two fine boys w my husband, volunteered w American Cancer Society. God has used me to Get funds for the needy, buy them clothing etc. lots of special projects. I own a successful business w/good standing in my community. So I got this disease thru my own foolishness! Not easy to swallow! But God is in control and I Can't complain as I have had a blest life and hope to enjoy many more years. I pray I will be well enough on the medicine to Visit my grandson regularly. That's my number one goal:)! I am all about family! Thanks again for the encouragement! JoAnne

Shep · Guru

Alan--I love the picture of you & your grandson. What an amazing person you are! I understand how much your grandson means to you & keeps you young,active and keep fighting. I have one grand daughter who lives half way across the country--but she is my love. Of course I love my daughters too--but that little girl is my heart. I almost ended up raising her when her mother was not facing up to her responsibilites as a parent. She did get it together & I am extremely proud of her. She was a teen mom--it was a challenge for the entire family. My marriage didn't survive--but the love for my girls was made even stronger.

The hard part is that they are not here with me--I miss them so much. My youngest is only an hour away & did come spend the day with me which really lifted my heart. I truly do admire you. And I love to ride bikes also! Not doing it right now--a little to weak and wobbly. Which is killing me cause the mild winter has left us with prime riding weather!

Glad you are feeling better--it is much easier doing just the ribavirin & interferon--not completely easy --but not living from one dose to the next--thank goodness for the alarms on my phone!!
Sending smiles
Shep

JoAnneh · Guru

You give me hope! And what an awesome grandpa u r!! My first grand child is 19 days old. I will start triple tx after I go visit him for two weeks in March! I use to bike a lot.

LanaiSurferGirl · Senior Member

great pic!! :)

news · Guru

Isn't it glorious? No regular, eight-hour dosing schedule, no 20gm fat worries. Just two little riba doses each day and a shot on Sunday night (well, also a Procrit shot on Monday night, but that's different. That's treatment for the treatment). My whole outlook on life has changed. I leave tonight to take Adam snowboarding at Massanutten, VA on Friday and Ssaturday, and the way I feel I think I'll make a few runs each day, too. I have attached a picture of Adam and I on the MS 150 Bike Tour last year, at mile 78 of 100 on the first day. He is my grandson and my pride and joy, and it's his fault I have been snowboarding, canoeing, hiking, and cycling instead of sitting on the porch and scowling. His youth is my main source of energy.

Anna Christie · Senior Member

Congratulations. I know you are so happy. Hugs

LanaiSurferGirl · Senior Member

finished mine off last night with some cold stone ice cream...just how I started it! :) I can't wait to start feeling better and also for my hemoglobin to be at normal levels. Cheers to no purple pills this morning!

news · Guru

Yes, this is my first time on tx. I didn't discover I had it until Oct/Nov 2011. After the liver biopsy the doc said we must start right away. Late November I began a 24-week plan, 12 with Invivek/Pegasys/ribavirin and 12 more w/o Incivek, then a 6-month observation period. I am at that 12-week transition right now. Four days without Incivek, and it is improving each day. I am so pleased. Had I not gotten UND at 8 weeks it all would have changed drastically. But it seems they are going to stick to the plan.

Pretty much everyone I work with and all of my family knows what I am doing. But casual friends and acquaintances are not aware. Even though my doctor thinks I caught this mess from a transfusion in the 80's, I still don't want folks judging me.

You are among friends here, so keep your chin up and wade right into March like you know what you're doing. We'll all be here.

Alan

JoAnneh · Guru

Alan, Is this your first time on tx? My doctor wants me on it for 11 months!!!! JoAnne

JoAnneh · Guru

Meghan, I was very depressed and anemic w standard tx 11 years ago at age 41! I expect this to be worse and My doctor wants tx to be 11 months!! Since I am going to stop working and my children are grown I will have more calm environment to heal in. Work was hard last time. last time and no doubt I can't run a business again. So sorry you caught from your mom. So blest My children do not have it. I believe I have had it 36 years from teenage drug abuse. I brought this on myself!! I have been sober over 25 years. I have Lived a full time till 50! Family, volunteering, Worked out, ski etc... Lots of energy but after 50 really tired easily but still kept full pace till about 4 months ago. I should start tx in March. I can't imagine anything harder than last time But my doctor was straight up w me and told me same thing you Said... It probably will be so thankful I am retiring from work!! . Thank you very much for writing to me.

JoAnneh · Guru

Brad, oh u r still on Treatment. Impressed u r working. I am 52 can't do it. I own a busy hair salon w 8 employees. I worked last time 11 years ago. How old are you? Sounds like h r adjusting okay to Medicine. That's good to hear

JoAnneh · Guru

Brad, Congratulations! How long were you On treatment, they want me on it for 44 weeks, 11 months!! How is choice made: Incivek or Vectrillis?? I appreciate feedback very much Joanne

JoAnneh · Guru

Incivek or vertrillis which should I choose??

JoAnneh · Guru

Did you keep it a secret that u had this disease? I don't think I have the energy to maintain the secret. When I tried 11 years ago I told very few but at 52 I just don't care as Much plus I am going to quit work

news · Guru

It is really unbelievable how fast the Incivek wears off and you start feeling better. This is Tuesday morning and the difference is indescribable. My friends at work are asking what happened. They saw the difference right away.

Anna Christie · Senior Member

Yeah you are done with it. I started feeling a little better the next day. Hope you do too, however my hgb continued to drop but so much easier to deal with not feeling so sick as I did when on Incevik. Keep us posted.

Isiscat2011 · Guru

Excellent, Alan. I wish you much luck!

Shep · Guru

Hope you start feeling better soon!

news · Guru

Well folks, it happened. At 9:50PM EST last night I took the last two Incivek. It was cold, very windy, with a clear sky and a bright moon. I stepped out in the front yard and let out a:

Ayyyyyy-eeeeeeeeee!

that would have made any Cajun proud. The black and tan hound a half mile down the road started barking. I smiled and came inside.

Thus ends the first leg of the journey. I hope you will all be along for the next portion. Twelve-week labs on Monday. Wish me luck.

Alan

news wrote:

I am almost out of the Incivek woods, and wouldn't you know it? At the last minute the rash and itching, particularly on my upper chest near my neck, is becoming unbearable. Hydrocortisone cream, benadryl and good skin lotion still helps but for a very short time. I cannot wait to say goodbye to this stuff.
And, of course, the hematocrit levels got too low, so they had to cut my ribavirin in half and started me on Procrit. Never a dull moment.
My best to all of you, and on Saturday night at 10PM EST when you hear a joyful Cajun yell and see a light in the sky, that's me eating my last two Incivek.

Laissez le Bon Temps Rouler!

Alan

LanaiSurferGirl · Senior Member

JoAnneh, I set it up so I did not have to work through treatment...my husband and I saved money and I filed state disability to collect money from that. I am sure it is possible to work through this but for me it has been invaluable to take it easy and let the meds do their thing. I have 3 days left on the telepravir and can tell you that I have honestly slept 12-14 hours per day. My worst weeks were week 1 while my body was adapting to the meds and weeks 9-10 where my hemoglobin took a dive down to 6.3 and I was severely anemic. Everyone has different side effects so you really can't make a fair judgement of how you will feel based on others experiences.

I did the 3xper week interferon and ribavirin treatment back in 1999-2000 and can tell you I have had a much harder time through this round of treatment....I don't know if it is the added drug, the fact that my body is 12 years older, or both contributing to this. OVERALL IT IS WORTH IT !! I encourage you to give it a try unless you are in great health because there are lots of drugs in the research pipeline right now to be released around 2015 with less side effects.

aloha,

Meghan

krowdog · Senior Member

JoAnneh,

Like Alan, I too have been able to work. A busy job running a printing and graphics dept. I only had to take a half day off, the day after my first shot.

I have found I had to slow down and pace as I got a couple months into TX. But I was lucky. My hemoglobin dropped to 11.9, and stayed stable there.

I have found sleep REALLY helps. I get up for work at 6:30am. As tx progressed, I got to bed earlier and earlier. I now do no later than 10:30pm, and earlier if I can. Lots of sleep really helps my mood. (So did finishing Incivek ;)

Most of us here do ok on TX, and most of us are clearing this virus.

I hope you do to!

Best of luck,

Brad

(Geno 1a, UND@ wks 4,8 & 12. Currently in wk 17 of 24)

-- Edited by krowdog on Sunday 12th of February 2012 01:58:41 AM

deny_zoo29 · Veteran Member

You are almost there! Once I was done with the Incivek things got MUCH better! The body itching, rear end pain, itching, bleeding, exhaustion etc all disappeared within a week after my last pill!

My shots & Riba are nothing compared to the Incivek, but I can't complain too much I am Undetectable!

news · Guru

JoAnneh,

I have only missed three and a half days of work in the entire 12 weeks. Two of those days were this week, when the exhaustion and shortness of breath just got the best of me. Even though they cut my ribavirin in half and I gave myself a procrit shot Monday night, they say it takes a week or two for those changes to take effect. So I bet my hematocrit continued to drop. I have labs on Monday, so I'll know by the end of next week.

But to answer your question, yes, I was able to work almost every day. I have done my best to keep a positive attitude, and my family tried real hard to catch my slack and support me. The guys at work all know what I'm doing, and they cover me if I have labs or doctor visits. And I sleep A LOT. And I drink huge amounts of water, not all at once but continually throughout the day.

Don't be scared about this. Just puff up and wade right in there. It is not a pleasant experience, but it is doable. And if it works out, as it most often does, you'll be so much better off without this virus. I just keep thinking about the long term bennies, and a better life down the road. That's about all I can do.

Chin up, friend. And stay in touch.

Alan

JoAnneh · Guru

I am going to start triple med in March. Geno 1 non responder. Are you able to work? Med made me so sick And foggy and not thinking clearly last time. Adding another med to it is scary. How are you doing

Anna Christie · Senior Member

Robert your time is coming soon to get off the Incevik. Will yell for you too Friday night. Hang in there. It got a lot better for me after the Incevik. The very next day I could eat and like food and not so tired and depressed. Was still anemic and dropped more but 11.9 last week. Hugs

robert d · Member

I'm right there with ya Friday night is my last incivek biggrin I had one transfusion last week hope i can maintain my blood level now. these drugs are working but very hard on ones body and mind.

cntryboyar · Veteran Member

I can't speak from experience because i'm only on the double tx, but from what i read, all you triple tx troops have my respect. The interferon and riba combo is tough enough. Congrats on almost being done with the toxic incivek, hopefully you'll clear most of those sx from that drug soon. Hang in there, i believe it will get better for you very soon!

Anna Christie · Senior Member

Hi Alan. Will be listening for that Cajun Yell Sat. night. Knowing how awful Incevik made me feel and how wonderful it was to get off of it, I am going to yell for you 9pm CST Sat. in happiness for you.

LanaiSurferGirl · Senior Member

Alan...I am right behind you. I have 8 more days and also became very anemic at week 9. We reduced riba for a week, started procrit, and have now stopped riba as hgb continues to drop...Friday it was at 6.3. I feel fine though which I think my body has physiologically adapted to the anemia with increased cardiac output and blood distro to vital organs. Also...I know the riba is still in my system. I might need a transfusion if it has dropped more....good thing we are all in this together!! :)

Shep · Guru

Alan--you are in the home stretch! Hang in there. I will be listening for that Cajun yell! I will be calling the Hogs in response
Shep

x3vanescencex · Member

CONGRATS!! i still have 3 mos of this!! ::shivers::

news · Guru

I am almost out of the Incivek woods, and wouldn't you know it? At the last minute the rash and itching, particularly on my upper chest near my neck, is becoming unbearable. Hydrocortisone cream, benadryl and good skin lotion still helps but for a very short time. I cannot wait to say goodbye to this stuff.
And, of course, the hematocrit levels got too low, so they had to cut my ribavirin in half and started me on Procrit. Never a dull moment.
My best to all of you, and on Saturday night at 10PM EST when you hear a joyful Cajun yell and see a light in the sky, that's me eating my last two Incivek.

Laissez le Bon Temps Rouler!

Alan

Hep C Discussion Forum

Legal Disclaimer: