Genotype 4 starting 1st shot tonight.

[dutch_boy]

Hello everyone, I am a "newbie" and glad to have found you all.  I was dx in June with Hep C: Genotype 4. Very frightened at first, dissapointed in myself, learned to accept it, educated myself, and finally start Pegasys/Copegus TONIGHT! Yikes! I don't know how I contracted this, I don't match any known ways of transmittion. Maybe past sexual activity but doctor said unlikely. Wasted effort to dwell on it! I am 43, bx showed Grade 1/Stage 0 with a low viral load RNA 53,900IU/ML. AST/ALT levels in normal range. My gastroenterologist strongly supports me in treating as I have low viral load with little liver damage so far, and under 45, all contributing to better chance of SVR (doctor thinks 50%+-) My symptoms are joint pain and tiring more easily and dull pain under right ribs..and fear! I unfortunately have only 1 kidney which my nephrologist is monitoring and approved treatment for Hep C. Creatinine levels are high at 1.3, clearance at 105. I chose Pegasys as it is processed by liver vs. kidney with PegIntron.  Worried about the 1 kidney I have!
This unusual Geno 4 is my doctors first case. I am starting 1st shot 180mcgPegasys/800mgCopegus tonight.  I am aware that others take a higher dose of Riba. Knowing Geno type 4 is difficult to treat I hope I'm getting enough for SVR. Is this weight based? (I'm 150 lbs).
Are there others who have treated with only 1 kidney out there?
Any Geno 4's with SVR?
Am I getting enough Riba for success?
Thank you to all of you for your support. I admire and respect your strength, wisdom, and knowledge. I'm ready for my battle!
Scott

[cuteus]

just make sure to check with your urologist on the water intake, excessive water intake can also be serious.

[dutch_boy]

Thank you to everyone who jumped in and gave me advice not only on the Ribavirin dosing I was getting but also the headache issue.  I appreciate all your kind words of wisdom and I'm sure glad you are all there for the support being a "newbie". The beginning of this journey from learning you have HepC to the point of starting treatment is daunting.....looking at a full year of this chemo can be overwhelming...but I think if I just look it a week at a time I can do this. The great news is that my headache DID go away, just like you all said....it took three days but today I feel almost "normal" other than aches in my skin....kind of like I'm just about to get a flu not it doesn't progress to the flu.  I have only suffered since I last posted with fever only twice and it only went to 100...so the great news is that I feel so incredibly lucky that this has been mild!!! (Although that constant 3 day headache was definately not a picnic...sounds like you all speak from similar experience!) but the way I look at it is that I can just feel that Hep C getting "eaten alive" with every moment that passes on this treatment...I actually find peace in knowing that I took the step to give myself a chance at beating this virus.  So I'm in it for the long haul.  As for your suggestions about dropping caffeine: I took on this challenge 1.5 months ago and started drinking almost over 1.5 gallons of water a day and enjoy it!  Good thing I love water! I learned to drink alot due to having only one kidney. Of course now the problem is that I get up to pee all night long and don't get a good nights sleep!  Oh, well that is a small price to pay for lessening the sides. Thanks again for all your support.  It means so much to me to know you are all there.
Your kindness is appreciated to all.
scott

[nanniegea]

I also suffered with the headaches but found that drinking tons of water helped to get rid of them. I can't stress water enough...you might feel like you don't or can't drink that much but believe me, it helps a lot. Also, I found that not drinking caffiene filled drinks helped too. If you are already used to caffiene, get rid of it slowly, going cold turkey will only give you more of a headache. I wish you the best and don't give up!!!

[cuteus]

like Honey said, most days you wake up and feel like calling in sick, but realize that you can still walk and breathe and the bad feeling is not enough to waste a sick day.  I lost a day or two in 72 wks of treatment(tx) although I wanted to stay home many a day. Concentration was definetely off also, but I have read many comments here where the person finished school while on Tx and some that had demanding jobs that they were able to continue.
You won't know how it will affect you until you do it, that is the bottom line. You might luck out and get close to none or you might get the other end. Most of us seem to fall in between, with manageable sides.  If you do get low HGB make sure they intervene with Procrit so that you can continue functioning. Anemia can cause a lot of problems.
You will do fine, once you committ to the tx.

[honey1616]

Hi...Glad to see you made it through first shot... Sounds like you did just fine.  My first shot was the worse and then got better each week.  The headache,,,I had also in beginning and usually ibuprofen would take the edge off.  Maybe,,,hot tea or something to relax you would help also but I'm sure it will be going away soon.  Its probably just your body adjusting to the interferon.  Alot of people here are on tx so usually when you have problems or need advice for sides,,,,someone always jumps in and usually more with ideas!  Best Wishes and Nil Sides to you!

[new-sojourn]

I, too, have a 19yr old daughter who could have b/wasn't infected @ birth.  I am/was a 2b w/end stage liver disease who had the virus since 1967 from a transfusion and I cleared the virus in 18days.  That was in May 2002.  So there is hope.

The hair loss was just like a dog shedding and it was worse @ the end for me b/I am a 2b and did 24wks.  B/the funny thing is that my hair grew in dark and curly--w/o the grey.  Now it grows so fast I have to trim more often.

How you feel, you can't predict.  You would think I would have had a bad time b/I didn't.  of course I don't work.  I purposely started in the spring so that I could veg in the summer.

We live in the country so we took walks w/our dogs almost every day and we still went to concerts @ the gorge and rodeos, fairs, etc, bumbershoot.

We are very 'organic' so I planted a garden and we went to farmer's markets for fun and food.  Juicing is very good and we made protein fruit yogurt smmoothiess.

You'll do fine.

[dutch_boy]

Thank you all so much for your valuable input.  These last several days have been very stressful and I was so nervous to start treatment on Sunday night but got through it just fine.  I felt fine through the night after taking the Pegasys shot but woke to a headache that hasn't gone away since......this is a small price to pay considering it could be so much worse as I know others have had a difficult time.  For those who have not yet taken their first shot and Ribavirin.....I think my fears and anticipation were much worse than the actual event!    I must admit however I am wondering when this headache will end or at least subside as it is a concern. Just when I think it is easing up it hits me like a brick again!.....Is this normal?  I didn't have the flu symptoms, or the aches or fever.....just this nagging headpain.  Any words of wisdom on this will be appreciated.
I was SO IMPRESSED with several of your comments about my low dose of Copegus/Ribavirin for my genotype 4. I'm so grateful to also learn there are others here with Genotype 4 which I've been told not much is known.  Most research  goes to the more common genotypes found in the USA and genotype 4 is hard to get information on.  Thank you all so much for your wisdom and knowledge on this as I needed to hear this information. My fear was that I was in fact not getting enough Ribavirin for the SVR GOAL!!!  So I downloaded the article that "dirac" recommended (thank you) and then called the Pegasys on-call nurse and spoke to her about my 800mg dosage prescribed and she confirmed that for my weight (150lb.s) that I need to take 1,000 mg of Copegus...just what I suspected and you all recommended.  So I called my doctors office....became a "squeeky wheel" (which I've learned is the ONLY way to get "noticed") and spoke with the RN who confirmed with the doctor that I was in fact NOT getting the correct amount of Ribavirin....they appologized and thanked me for being a proactive participant in my health care. ( I thank YOU who responded to me for this)....So last night I upped my dose of Ribavirin and find much more peace of mind knowing I'm giving this my best shot for SVR.  I didn't want to live knowing that I didnt' do everything possible to help obtain that goal.
As for my one kidney and taking this treatment I didn't get any response on that issue...I may be the only one with this situation?
Thank you all so much for your input.  Just knowing that you are all out there going through this makes me feel more confident and less alone as I look at the year (or more?) before me... I hope you all are doing well and I may be a "newbie" but I feel connected and grateful to you all.  Thank you for your support and encouragement....I hope to return that kindness.
Off to go for a long walk...maybe that will help this headache!

[KICKED]

at my work I had to go up & down stairs.  Went slow and held on. Never too time off.  If I did I would have created another problem (depression). Sitting at home feeling sorry for myself.  My job helps me keep my mind busy and clear. Even through the headaches.  The only thing that scares me is when I sneeze while driving.  I pull over because I feel that I may pass out.  Go slow but go steady. You need to keep you strenght up at all cost.

[cuteus]

check the thread by Cao on 1/23/05, dallas reported back on that day.
hope you are well

[hepatits19]

does the treatment would cause me to feel weak to a point i wont be able to work?..will i lose alot of weight plus how bad is the headache. im still doing school right now and work 30hours a week. does that mean when im on the treatment i have to leave everything behind?.i m very scared, i dont know what to do..everything seems so fine right now..why do i have to undergo such cruel moment at this early age. i want to cry but i just cant. please people let me everything that i should need to know.im very concern about the concentration that im may lack of to use for school and work. i need the job and i dont want to lose any hair. i know life is more valuable than every strand but i just want to know that way i can prepare the worse ahead. i really dont know..

[GALLIUM]

there are a couple of us geno type 4's here i also am a 4 i finish treatment on march 11th, i also have leukemia.
i have been undectable since week 12 and am looking forward to finishing up treatment.
just a side not to dallastar how are you doing i rember you as alos haveing leukemia and were awaiting a transplant. havent heard from you in a long time and have been wondering how you are doing?

[DRAGON SLAYER]

I'm glad that your health is improving & the end of Tx is near for you. Always nice to hear from you & thank you for your well wishes. My health has improved much since I finished Tx except for the MDD issue which I'm being treated for now. I excpect to beat it as well in the same fashion as I have overcame HCV.

Stay well & best regards to your family......

Good luck luck to all,
Ben

[hepcgetlost]

Hi there Scott,

Wow...another genotype 4...I'm the other genotype 4 Ben was talking about. I agree with DIRAC that your ribavirin dose should be increased to 1,200mg for maximum efficacy. I'm not a doctor, but I think at 150 lbs, 1,200 would be okay (I weigh 110-115 and take 1,000 mg). I began tx 15 months ago. (I'm doing 72 weeks because as you know, genotype 4 is hard to treat).  It's great that you've come here...so many kind and well-informed people who will support and encourage you. Go to the websites that have been posted by the people who responded to your post above me and stay informed.

I've been clear of the virus since week 19 of my treatment. Fortunately, the health complications Ben mentioned  have resolved by now and my side effects are manageable. I do whatever I can to promote my good health by eating wholesome foods, trying to get enough sleep (insomnia is a big problem), avoiding unnecessary stress, maintaining good oral and general hygeine, and keeping myself hydrated (lots of H2O) and my skin well moisturized. This all might sound very ordinary, but it's absolutely necessary for us when we're on treatment as you'll discover.

Each of us responds differently to treatment. As you continue your treatment you'll figure out the best way to handle everything. For some people, side effects don't seem to be as much of a problem as for others. Do whatever you need to do to stay the course so that you  have the best opportunity to achieve SVR. The main thing is to get through it and kill that dragon. Everyone here will help, support and encourage you. I wish you success and will look for your posts so I know how you're doing.  Wishing you easy sides and hope to hear more from you as treatment progresses.

Ben, how are you doing? Better and better every day I hope. I'm on week #59 now. Home stretch...Be well.
Judi

[hepatits19]

hi,everyone i havent start my treatment yet but soon will be. im very scare and depress. i dont know what to do. there's so many question i would like to ask. but i prefer to ask someone who have the experience rather than the doctor. im only 20 and i got it from my mom. i want to know how much of the hair loss i may have to lose?..im currently working right now but does that mean i have to

[honey1616]

Hi,,,I understand only too well about you being scared but,,,you will be fine.  You are young and will clear the virus and move on with your life.  You are weak from treatment but not to weak to work,,,or at least I wasn't.  I got little annoying headaches throughout the treatment but usually ibuprofen relieved that.  My hair,,,I lost about 60% but,,,everyone claimed they could not tell.  Its not like it was bald in spots or anything like that,,,just thin and I could really tell when I washed it. It covered my head LOL,,,,,but when the wind blew,,,it was cooler! I was so scared also and had so many questions and also was worried about the hair but really,,,it wasn't as bad as the anticipation of it.  Best way for me to explain it is,,,I felt everyday like I was coming down with the flu but not full flu where you have to go to bed.  Just you don't feel up to par.  I'm sorry this has happened to you and my heart goes out to you as my daughter is a year older then you and I was so relieved that she didn't have it.  You can come here and ask as many questions as you want and its great to have people that are going through it,,,to help you.  Best of Luck to you and remember,,,Be Positive,,,You will get through this stage.  Look at as a challenge...

[DRAGON SLAYER]

Hey Scott,

Unfortunately I can't answer most of your questions but I'm sure others will. However, there's a woman on this forum called "hepcgetlost" who is inflicted with HCV type 4 & undergoing Tx. She doesn't come here too often now 'cause of health complications.....but pls remember her name. I'm sure that she can provide you with many answers since there aren't many (or any other-if my memory serves me right) type 4's on this forum.

Good luck to all,
Ben

[Dirac]

I wish you the best of luck. However I beleive the ribavirine dose you are gtting is small. It is an important factor in determining the output for genotype 4. I had this genotype and I used 1200 not 800. I do not have the virus any more.
Please read the following article and print it out for your doctor to discuss with him the dose you are taking. You do not want to relapse and waste other 48 weeks of higher dose.
The article is
http://www.hivandhepatitis.com/hep_c/news/011703b.html
Good luck.

[KICKED]

Good luck.  Keep your spirits up and when you feel like giving up DON'T!!!!!!!!!!!  My first shot was wicked.  I seen God 5 times that night.  The second time appprox. 50% less and so on. In my mind I quit tons of times but really did not.  First test for me came back undetectable. I am geno type 1b. Most common and harder to cure.  Good luck once again.  I have just found this web site two nights ago and it has been the best thing for me.  Talking to people going through the same thing and same syptoms make you stronger.  Fantastic support group.

[Better Angels]

This is a great <a href="http://www.hivandhepatitis.com"> website </a> to go and get answers. There is also a section where you can post a question to some of the best doctors out there fighting this disease. I have found a lot of information here on dosing, particularly weight-based considerations as well as viral load. Since treating your genotype is similar to geno-1 the information is probably still applicable. In fact, I just read an article at this same website that specifically addresses the viral load count both from an SVR standpoint as well as dosing amounts. The fact that you have little liver damage (if any) and such a low viral load puts the odds in your favor. I'm sure others will be along soon to add to this.

Your first shot - keep water handy and don't just stare at it, drink it. My husband had severe rigors his first 2 shots so keep a heating pad and blankets nearby. My husband would also take 2 Tylenol extra strength about an hour before the shot. Then he'd get in his recliner and demand the remote control (Of course I never gave up that little piece of real estate) but I would kiss his forehead and hold his hand, and off we went...  
Really, I wish the best of luck to you.
Debbe