I have my full diagnosis and am going to start treatment - help!

[dwebmaiden]

I am Genotype 1a stage 2 with 530,000 viral load - she ordered pegintron ribavirin and incivek...what am in for??  My doctor is not very informative...and her nurse seems hurried like she doesn't have time for all my questions.  I'm scared...I support my family financially and take care of everything.  I'm afraid I'm going to lose my job, my family is going to fall apart etc.  If I lose my job, Can you draw disability with this condition?  I heard some people have mood and behavior changes, can't think straight etc.   That's scary!  Can someone tell me about the side effects on this regimen??  I have read lots of materials and researched...just would rather hear from someone that is or has gone through it.  Any and all information will be helpful...I am a bundle of nerves.  

[pooh55811]

Everyone is different. Some people have few side effects or minor side effects. Others have more side effects or more serious side effects. There really is no way to know before you start. I am going to post some links to previous threads covering the topic of side effects. I think it would be helpful for you to read them. They are posts from some of us and they deal with the side effects.

As far as work is concerned, many people do continue to work during treatment. However, some cannot work. It is best to have a Plan B lined up in case Plan A does not work out. Here are some possibilities to think about: sick days, vacation time, personal leave days, short term or long term disability, Family Medical Leave. I don't know where you live. If you live in CA then you would be able to use the State Disability Insurance (which you pay into every month ... it is automatically deducted from your paycheck). There may be other options too. These are the ones I can think of now.

Since you will be on Incivek, be sure that you take the Incivek every 8 hours and be sure that you take the Incivek within 30 minutes AFTER eating a meal which contains at least 20 grams of fat. Good sources of fats are Greek Gods yogurt, cheddar or Havarti cheese, Brie cheese, bratwurst, liver pate, avocado, peanut butter, cream cheese, and more. Read the labels for the amount that you need to equal 20 grams of fat. Also, the only yogurt that I know of which is high in fat is Greek Gods. It is very creamy and tasty.

To stay on schedule, get a programmable watch and set the times for your pill intake. Set alarms. Carry a portable timer. Anything that will alarm and let you know to take those pills on time. Also, have a system so you remember if you took the pills. Most of us could not remember 5 minutes later if we had taken the pills a lot. Many use a pill organizer box. Having some workable system is important to get those meds in on time and to not miss doses.

Here are the links to threads about the side effects, including the remedies and treatments for them. I think they will be quite helpful. Keep in mind, you won't get all of them, but you may get some of them.

http://www.medhelp.org/posts/Hepatitis-C/starting-treatment-tomorrow/show/1889615#post_8791294

http://www.medhelp.org/posts/Hepatitis-C/just-found-out-genotype-and-meds/show/1881019#post_8739250

http://www.medhelp.org/posts/Hepatitis-C/NEW-to-this-forum--HCV-positive--going-to-start-treatments-soon-and-clueless/show/1872727#post_8690164

Best of luck. Come here and post if you have more questions.

[ppmguy]

   talk to your dr. about family leave or state disability. you mat not need them, but knowing you have that option will help anxiety. if your dr. signs papers stating your temporary disability, you could get up to one year of benefits.  or up to 12 weeks of family leave.  best of luck,    barry

[maybe368]

Try to relax and know that some people sail through with minimal side effects. I recommend preparing for the worst, but hoping for the best. A positive attitude helps a lot. I just finished 48 weeks of triple with Incivek. My experience will be different from yours and yours from everyone else. Search this site, everything you need to know is here, good luck...Mark

[cheflady]

hi first want to say good luck to you both my hubby on wk thirteen and just finished with the incivek that seems to be the worst part cause of strict times you have to keep on the fat thet you have to eat even when you have no appetite my hubby as lost 1.5 stone and now as lots of protein shakes which helps.Best tip what he was given was to have the weekly peg jab just before going to bed that way he slept through alot of the side effects best wishes and good luck to both of you x

[working dog]

let folks your going to be close to know your tx and what you say on tx may not be the real you.......talk with your doctor about what he/she will do if you need rescue drugs like procrit...you may have light sx but you may have bad sx...most folks don't have really bad sx and many can work right through tx...i would have a plan for both..not bad or bad sx...the goal is to svr...drink lots of water...maybe start an ad before tx....get a pilll organizer ..its very important to take your incivek on time....get blood work at least once a week..cbcs...keep an eye on them....drink lots of water....if you have someone to help you out its really nice...and your doing it right ...ask questions here and many folks will help...