Looking for Support

[Bashly]

Hi everyone. My name is Jeanie. I'm a 30 year old mother of 3 little girls. I was an IV drug user and that is how I ended up with Hep C. I have 7 years clean now though. I was diagnosed with Hep C in 2001, genotype 3a, and this will be my first time attempting treatment. I have kids ages 7, 6, and 4 and a husband who is only 33 but just had 3 stents put in his heart in June of this year. I want to get and stay healthy to take care of my kids and husband, but to do that I have to take care of Me. So my Dr and I decided to begin treatment. I go on the 28th of this month for my "teaching". I decided to look around and try some groups and forums to get some support for the time I'm receiving treatment since I don't have much support at home. My kids are too little and my husband is having issues of his own. I do, however have my Mother as support. I will be doing the Peg-Intron ready pen and the ribivirin. I was just curious if anyone had any advice pertaining to the ready-pen, I've heard they can be difficult? Also, are there any other forums or groups you could recommend? I've found some, but a lot don't seem to be very active. I also tried to find some support groups in my area, but found none unless I'm willing to drive pretty far. Thanks so much for the help, and for these forums. I've learned quite a bit in just reading for a short time.

[JDB1964]

Good luck with your treatment!

[desrt]

The IL28B test can be done any time. Your genes aren't going to change, and it really only seems relevant to 2s and 3s if you're not undetectable at 4 weeks (RVR).

[Bashly]

Ok, so to help me slim this down to bring to my teaching. I've got a little list here of stuff I've gathered from these posts and article links. Am I missing anything?

Questions to ask my Doctor

1. What is your opinion on the IL28B test?
2. Do you assess treatment at 4w?
3. And what will we do if I am unresponsive at 4w?
4. Do I need a biopsy prior to treatment?
5. Why or why not?
6. How can I contact you in case of emergency?
7. What about on a weekend or after hours?
8. Will my Ribavirin dose be the typical for my genotype or weight based?
9. How experienced are you in dealing with Hep C?
10. How often will I be doing labs during treatment?
11. What is your protocol for dealing with low WBC or RBC?
12. What about other side effects?
13. How often will I be seeing you during treatment?
14. What do I do if for some reason I don't have my medicine when I am due for it?
15. How often do you recommend Vitamin D, TSH, and other levels checked during treatment? (kinda goes with question 10)

And things I should be sure of

1. Make sure I get copies of ALL test results
2. Make sure my Dr follows all standard treatment protocols for my genotype etc.
3. Bring someone with me to appointments to help remind me of questions and to help remember what was discussed.

Obviously these are in no particular order, lol. I like to make a list to bring with me when I see a doctor to be sure I don't forget anything. So I wanted to get this all together and prepared ahead of time.
Oh, and as far as the IL28B test, the article talked about the test being done when SVR isn't achieved. Should I ask for the test prior to treatment, or wait and see if I achieve SVR first? Thanks so much for the help everyone! Trying to sort though what info is available online is difficult. alot is outdated and a lot of it you can't verify. It's nice to get the info straight from someone who's done it and been through it. Just joining this forum has greatly reduced my anxiety about beginning treatment. Thanks to you all!

[Idyllic]

I wholeheartedly agree with everything said so far. I wish it weren't such an overwhelming body of information but trust me you will use every tip offered in this post. I wish I had the foresight to insist on the IL28B test desrt mentioned. As will's article says, "The presence of the CC variant of IL28b could help in the initial prognosis and the need for additional treatment, if an RVR is not achieved."

I would have done it in the beginning if I had the foresight. I barely responded to the Peg & Riba. :(  I would do it again but it was a hardship body sure could have gone without.

I used the Pegintron Redipen the first time I treated and I really liked it. It is a needle-based injector and ridiculously easy and effortless to use. I think I prefer the pre-filled syringes I am currently using but keep in mind both delivery systems are peginterferon alfa-2b.

♦♦ Be sure to ask for weight-based Ribavarin and not the standard 800 mg. I don't know how much you weigh but the difference in dose could mean taking 1000 mg/day or the 800.

Be sure to ask your doctor all the questions OrphanedHawk put in her post. I know it seems like a lot but you really need to know up front if your doctor is going to treat your side effects and just how much experience he really has. You will find you are going to end up learning a lot since even normal medical health professionals aren't all that informed about Hepatitis C.

Depression can sometimes be a side effect of the Interferon. It doesn't happen to everyone but it is very real and could happen. I went on an anti-depressant a few months before I started treatment just to be on the safe side. In my case I am glad I did. I just thought I would mention this since no one else really did and it is a possibility you might want to ask your doctor about.
___________________________
Your husband just had some pretty major surgery and I would guess is recuperating and getting healthy again. It would be ideal if you began treatment when he is able to resume normal activities. The good thing is you are young and healthy and you have your mum around :) And us.

[desrt]

Good stuff will. Thank you.

Coffee, IL28B(&A), and Roferon. A new favorite to read an re-read.  :-)

[James10500]

Welcome, and good luck with tx.  Interferon,and RIBA is not so fun at times but, much easier than 3x tx.  I'm 18 months post tx and feel pretty good, and HCV free.  You can put this in the past in no time.

[willbb]

Here is a current in-depth articel  (below)explaining  most about the treatment of HCV  Genotype 3  inclusive of the possible importance of the IL28B gene test(as desrt mentions), as well as other predictors of response and possible treatment of the future of this genotype.

Welcome to you...you have found the best site for info and support for HCV  going.......

Will

http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02715.x/full

[orphanedhawk]

I'm genotype 2. When I asked my hepatologist about the triple tx, he told me that statistically it does not improve results for geno 2 or 3.
No need to take an additional strong drug when two do the job better.

[can-do-man]

desrt above makes some good points, do you know if he plans on treating you on weight based Riba or the standard 800mg that some go by with type 2's and 3's.........

Welcome here, Wishing you the best...

[ceanothus]

Welcome to the forum - you have found the very best website for factual information and great support! There are a couple of other good sites for info, with http://www.hcvadvocate.org being one, but no other place is as supportive, other than maybe an in-person local support group if you can find one. I know very little about genotypes 2 or 3, so I'm not giving any specific advice, but I'd like to give some general advice: educate yourself about the virus and about the accepted treatment protocols and be active in your own care. Make sure you get copies of ALL your test results, question your doctors if they seem to not to be following the accepted standard protocol for your treatment. Some are lax about ordering all the tests on the correct schedule, and it can make a big difference in your treatment at certain points, so the info provided by those tests is critical. Make sure you know how to contact your doctor or treating facility in an emergency. Side effects can occasionally pop up quite dramatically, and it usually happens early in a weekend. Ask in advance about how you can reach your team under those circumstances. Bring someone (maybe your mom) along with you to your doctor appointments if you can. They can help you remember to ask questions or to remember what the doctor said, plus many doctors will take more care and spend a little more time with you when you have an observer along. Last but not least: ask lots of questions both here and at the doctor's office. Good luck!

[frijole]

finishline -- PIs are not used in the treatment of genotypes 2 and 3.

Bashley
Welcome to the forum and congratulations for making the decision to treat.  Has a liver biopsy been suggested by any of your doctors?  A biopsy will tell you what the amount of inflammation is in your liver and how much fibrosis (scarring) you have.  Many doctors don't do these for genotype 2s and 3s because the treatment time is only 24 weeks.  However I think it is a good idea for any genotype and may make a difference later as you are treating.

I used the PegIntron RediPen for my 48 weeks of treatment.  I hated it at first and even asked my doctor to change to a vial and syringes.  But as time went on I really liked it.  The needle is 30 gauge and less than a 1/2 inch long.  It very very seldom left any injection mark.  I had to use the injection guide for a long time until I was sure of all the steps.

As for the drug itself, I found it much different and harder on my system that Pegasys, the INF I used for my first treatment.  The molecule configuration is different and as someone explained it to me, it actually doesn't even out as well as Pegasys so you may have days when you really feel it and others that you don't.  I don't want to frighten you -- either is acceptable.  I didn't clear with Pegasys and I have to wait 6 months to find out whether the PegIntron did it.  

good luck going forward
frijole

[finishline225]

Better to ask your doctor why he is not prescribing the 3rd treatment?  

[Advocate1955]

Yes, I believe that's correct.  I believe triple tx is only for Genotype 1's.
Advocate1955

[orphanedhawk]

Welcome to the forum!

Triple treatment is not for genotype 2 or 3 only. Be glad you only need two strong drugs and not three.

Normally, labs are done the day or two before taking your shot. So, if you're doing your shot on Sunday, you would need to do labs on Saturday or Friday. Many labs aren't open on Saturdays.
For this reason, you may want to rethink the day of the week you choose for labs.

I put together a list of questions for newbies to ask their doctors which you can see here:
http://www.medhelp.org/user_journals/show/360204/guestions-for-doctor-for-newbies-to-tx?personal_page_id=17823

Good luck !

[Bashly]

At this time I'm not really working. I make crafts and jewelry that I sell online and at local shows just to make some extra money for bills and such. My husband works full time. I always figured when my girls were in school full time I would go back to work. But I think I'm going to wait until I'm done treatment to start looking.

desrt I've been reading up on this a little. As a matter of fact when i got my lab results in the box where my genotype results were it mentions that I should have the IL28B test done, that it may help in determining treatment. Not sure though if my doctor will be ordering it. I have my appointment for my teaching on the 28th. They said at that appointment I will be shown how to use the medications, side effects, what to do if certain things happen, etc. I already have my list of questions for the appointment, lol.

One question I do have is about the triple treatment. Is that something that is based on genotype? Seems it's only genotype 1 people that do it? I was told I would be only doing the Peg-Intron and the Ribivirin.

[Bashly]

Thanks so much. I'm going to try my shots on a Sunday evening. I waited until the end of this month to begin my treatment because my girls start school on the 29th. So I figured that would be the best time, this way they are in school most of the day, 5 days a week. This gives me all day to either get work done, or rest. I do most of my running around on the weekends so if I take the shot on Sunday evening I "should" be feeling a little better by the time Friday comes around.

[desrt]

Welcome to the group. One thing you might want to do pre-treatment is show your doctor this article

http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract

and ask him his opinion on doing the IL28B test and assessing your response to treatment at 4 weeks to determine whether you should stay the course, extend treatment, or stop and wait for a non-interferon based treatment to become available.
I cleared geno 3 using PegIntron, but even a 24 week tx can be tough for some people. If you have minimal liver damage and a poor resonse to interferon, stopping and waiting for something better to become available can be an option.
Good luck.

[his3707]

You will find a lot of support here!  Most of us say that this forum made it easier and gave us strength to get thru treatment.  Everyone looks at their own situation for deciding when it is best to start treatment.  Sounds like your mother is going to be there for you.  Just get some meals prepared and put in the freezer.  Get someone to take the kids for you . Are you working outside of the home?     You might be just fine in the side effects (sx) department and adjust quickly.  The treatment will be over before you know it and you can live the rest of your life HCV free!  Come back and post often about how your treatment is going!
Congrats on your sobriety!

[Advocate1955]

Hi!  Welcome to the forum.  Congratulations on 7 years of being clean, and also for making the decision to treat your Hep C.  I don't know very much about Genotype 3a.  My husband has Genotype 1a.  The treatment you describe is, I believe, the standard of care for Genotype 3a.  The injections with the ready pen should not be difficult, but the treatment itself can be difficult.  Side effects vary from person to person, but you can anticipate that you may have some flu like symptoms for a couple of days after your injection.  You may also have some fatigue and possibly some nausea and later on a strange metallic taste in your mouth that changes the taste of food.  The best advice I can offer is drink lots of water, take your Ribavirin with food, and try to time your injection for a day when you will have the following day or two to rest.  My husband did his injections on Friday afternoons and rested as much as he could on Saturdays and Sundays.  It's great that you have your mom for support.  Later on in treatment you may need a little extra help with things like grocery shopping or driving to your doctor's appointments.  This treatment can cause anemia, which can make you feel weak, short of breath, or dizzy.  This is typical side effect of treatment.
Best wishes, and please keep posting, so we can offer suggestions and support.
Advocate1955