Hep C Discussion Forum

MusicMan · Member

RE: Really Scared!

Cinnamon Girl · Guru

MusicMan wrote:
So everything I have read so far seems to indicate that the success rate of the Sovaldi/Peg/Riba route with 1a people (like me) is around 90%. Did I read that correctly?
I can't seem to find any information that agrees on the success rate of the Sovaldi/Olysio/Riba combo.
I would love to hear from people on both combos.
Thank you!

Hi again MusicMan,

I can give you some information about success rates. According to the published data from the Sovaldi clinical trials, the overall success rate for genotype 1 tx naive with Sovaldi + pag.riba for 12 weeks was 90%, but for genotype 1a it was a bit higher at 92%. You can find that information in the full prescribing details, scroll down to 14.2, Table 8, the Neutrino trial...

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

As far as the Sovaldi/Olysio combo is concerned we don`t have full details yet of the success rates as this is an off-label treatment which is based on the Comos trials which only went to Phase 11 and not Phase 111. The information we do have though indicates SVR4 success rates of 96 to 100% in treatment-naive patients with stage F3 fibrosis or F4 cirrhosis.

Here`s a link to the Cosmos trial results, you can read about it here...

http://www.aidsmap.com/Simeprevir-sofosbuvir-produces-high-sustained-response-rates-for-hard-to-treat-patients-in-COSMOS-trial/page/2787623/

Hope that helps. Try not to be scared, once you get going with your treatment the anxiety will lift and you`ll be so pleased to be on your journey to a healthy life. We`ve all been there, and as Mindovermatter said, your young age is on your side!

mindovermatter · Veteran Member

Hi MusicMan,

I am about the same age as you. I started treatment a couple of months ago.

I, too, was scared. Just as you are.

It's normal to be scared, you know.

It is good that you have told your boss and he is supportive. On treatment there might be days when you do not feel good and consequently want to leave office early or take an off.

BUT, the treatment is very manageable. Do not pay too much attention to stories of horrible side effects of Hepatitis C treatment.

Yes, many people had bad side effects. But most of them are older: people in their 50s or 60s.

You are 32, you are young. You are very likely not to have very bad side-effects, although that is not a given.

I am in my third month of treatment. There are some days when I do not feel that I am undergoing treatment at all. Some days are harder.

In 73 days of treatment so far, there have been around 7 days when I felt like trash.

The other 67 were very manageable.

You know what, I was a lot more anxious before starting treatment than I am now.

And I think that might happen to you to.

Hepatitis C treatment is not as horrible as we are led to believe. No, it is not.

32 is a great age to start treatment. I started at 30.

Go for it, man.

The people on this forum are very knowledgeable and very supportive.

You can always rely on them. They will have answers to most of your questions. You are at the right place, man. And at the right time.

The landscape for Hepatitis C treatment has never been this good.

MusicMan · Member

Thanks everyone!

I'm nervous but excited to begin treatment. I won't know what that will look like until early may.

I have only told my direct boss, and two of my closest coworkers. I felt that was best in case I go the Sovaldi/Peg/Riba route. They are super supportive, and that's all I can ask for. My wife is supportive too. Some people in my family know, but not all extended family.

So everything I have read so far seems to indicate that the success rate of the Sovaldi/Peg/Riba route with 1a people (like me) is around 90%. Did I read that correctly?

I can't seem to find any information that agrees on the success rate of the Sovaldi/Olysio/Riba combo.

I would love to hear from people on both combos.

Can I just say that it is so refreshing, and nice, to have this forum to interact with real people living and fighting this disease. It feels alienating at times.

Thank you!

Cinnamon Girl · Guru

Hi again, MusicMan, good to hear from you, welcome back! I remember when you first joined the forum in 2011 and it`s wonderful to hear how your life has changed for the better since then.

Congratulations to you and your wife on the birth of your baby boy, you must both be thrilled! Great news also about your new house and job too! I think you`ve done very well giving up the drink, I`m sure it can`t have been easy. You certainly have many good reasons to keep yourself healthy with a family and a secure future ahead of you.

We already have a growing number of members doing treatment with Sovadli in various combinations and they are doing amazingly well with minimal side effects...you have every reason to be optimistic!

Stay in touch, we`ll be pleased to hear how it goes. All best wishes, Jill smile

mallani · Guru

Hi MusicMan,

Welcome back! In 3 years the game has changed a lot in HepC treatment.

As Tig said, your have moderately severe liver fibrosis, and I would want treatment soon. You'll probably need 24 weeks of treatment, and the current options are Sovaldi/ Peg/ Riba or Sovaldi/ Olysio/ Riba. There should be other options coming out later this year.

Glad to hear you've given up the booze. That accelerates fibrosis. Good luck.

Tig · Admin

Absolutely! We've got members here that have gone on to SVR and within the first year have shown remarkable improvement in their Metavir scores. The liver is a very resilient organ, particularly when it's healthy! We have a member that had a partial live liver transplant and the section actually grew back rather rapidly and he now has a normal sized liver! Incredible stuff! So you've got every reason to be positive!

Tig

MusicMan · Member

Thank you! Now for another question. After tx, can a liver heal? Or is a stage 3 liver just too far gone?

Tig · Admin

Hi Billy,

Welcome back to the forum! Glad to have you here. Congratulations to you and your wife for your good news! The baby will be a wonderful part of your future together, enjoy the blessing that they bring to your lives. They grow up so quick, so cherish every moment together!

Fibrosis is scored 0 - 4. A score of 3-4 indicates high fibrosis bordering on cirrhosis. If it is actually scored as a 4, then it is considered cirrhosis. But the new triple treatment, Sov/Int/Riba is extremely effective, even with cirrhosis. However, I believe the standard length of treatment for cirrhotic's is 24 weeks. But the old SOCs with Incivek and Victrelis is still 48 weeks for cirrhotic's. It's always improving and the new triples have far less side effects. There are new treatments in trials all the time and your doctor is right, new ones are soon to be released. But with your level of fibrosis, I'd prefer to get started as soon as I could to get that progression halted. Good luck and stay in touch. It's a great time for all of us to finally beat this thing on our terms!

Tig

Fibrosis: http://hepatitis.about.com/od/diagnosis/a/Metavir.htm

MusicMan · Member

Hi everyone. I am the original poster on this thread. Wow it has been 3 years since that first post. Well a lot has changed. Time to come clean. Ready? Ok, here it goes!

Well, my wife and I tried IVF 3 times to have a baby. I'm happy to say we have a happy baby boy now! He's almost 8 months old now. We also moved to a house this passed summer.

I have a good job now with good insurance. That will come in handy.

Also last summer I had a liver biopsy. It came back with active hep c and stage 3 of 4 fibrosis. If anyone can tell me what that means or share some insight, I would be grateful.

The doc recommended we wait for tx for better drugs to come out. I'm genotype 1a.

Also (useful information), I quit drinking (finally) February of 2013. I think I was in denial for the first 2 years. I might have even drank more to forget. Foolish? You bet! But I'm sure someone out there can relate.

Ok so that brings us to yesterday. (A full 3 years after my first post in this thread.)

I called my GI doc for a consult. I have an appointment in May. The NP on the phone seemed cheerfully optimistic and told me about new drugs that are out. (I am almost positive she is talking about Sovaldi.) So I will hopefully begin tx this May or possibly June.

I am excited. From what I read everywhere the success rate is highest on genotype 1a people when used in combination with ribovaren and (unfortunately) interferon (yuck!). I am willing though because it appears, again from my research online, that it is a 12 week treatment, and maybe a 24 week treatment at worst. (I'm pulling for 12)

We shall see in May. Regardless I am back, and although lots of things have changed in my life, I am still "Really Scared!".

I hope you all have been well over the last three years. Thanks for reading this. It sure feels better getting this off my chest.

Oh! And if anyone can share some knowledge about the stage 3 fibrosis, that would be most helpful!

Thanks and be well!

-- Edited by MusicMan on Wednesday 12th of March 2014 02:34:40 AM

-- Edited by MusicMan on Wednesday 12th of March 2014 03:27:24 AM

Ron Gilbert · Senior Member

Thanks Jill,

I love new places too. I never get tired of going to and seeing new places. I got to see San Francisco last summer and it was great. While I was there I drove out to Yosemite National Park and it was really cool too. Its going to be 98 here again today so I will be trying to stay inside during the afternoon.

Glad to hear your doing well. Ron

PJ · Senior Member

Hi Jill! I thought it seemed appropriate....sure hope I'm slaying mine. xoxo pj

Cinnamon Girl · Guru

Hi Ron, you`re right there, anything that helps you get through this is good news. I watched a lot of old comedy repeats while I was on tx and tried to avoid as much stressful stuff as possible. Tx can get tough at times but try to deal with it day at a time and keep on with your energy management, that is so important.

I love to hear about different places in the world. 3 months of the year with sunny 70 degrees would just suit me fine!

Good luck with your 4 wk test, all the best, Jill xxx

Hi PJ, love your new avatar! xx

Ron Gilbert · Senior Member

The weather here is actually great. Enduring the long hot months can be difficult but once that becomes an accepted part of living here we just deal with it. Otherwise it is always a low humidity environment. We have very few overcast days so there is very little gloom type feeling here. Rain days are usually scattered out during late summer. We get a taste of rain and heat (humidity) just a few days a year. lol. It always seems to serve as a reminder of life in Florida. lol. I grew up in Ohio and later my Mom lived in Florida. I spent several month this winter getting my Dad moved out here from Ohio. Talk about inclement weather? Wow, the overcast was continuous. In fact, lol my Dad is like "what the hell" all the time saying "why would ANYONE live in Ohio" lol. lol. He got here on Jan. 15 this year and counted the days looking for a bad one, lol, he gave up counting after 2 months or so. lol. I count my blessings here when we can easily go 3 months at a time with sunny 70 degrees. Anyway, I'm not gloating. I just ended up here in the 70s thanks to one of my Moms excursions and never found a reason to leave.

Thanks for the interest in my test. I'm just going to believe with you that yours will be UND in the first 4 weeks since we wont see your results. This virus has so many unpredictable but the one thing that seems to be constant is that the earlier we hit und the more likely we are to conquer this thing completely so Im pulling for you all the way.

sx seems to have leveled off a bit in the 3rd week. I was getting some anxiety last week wondering how bad it was going to get. 2nd day after the 3rd injection and I'm thinking "ok, I can do this" I'm learning to use my energy wisely and stay positive. Ive been laughing at dumb stuff on purpose trying not to get weighted down to much with this. lol. Anything that helps right? lol. lol.

Try to make it a great day. Ron

PJ · Senior Member

I'm not a fan of heat, and I especially hate the humidity that we have here in the east. I will be hiding inside this summer.

I did visit Phoenix once, in late October, and it was quite nice then. I spent 10 years in Florida and if I never go back that will be too soon lol..

I look forward to hearing your 4 week results, Ron! I won't get mine until at least week 12.

Ron Gilbert · Senior Member

Thanks James and Jill,

I thought the test would be on the last day of the 4th week but better to ask than sit here wondering. I could call the nurse of course but it was a easy question. The dr wanted a hemo test at 1 week but they never scheduled it and I wasn't about to volunteer. lol. The last thing I feel like doing is getting stuck an extra time. There have been no sx that seem worthy of alarm so I will call in and volunteer at the 4 week mark.

Hot is a way of life here about 5-6 month of the year. The high was 93 today and the low is 70. In the desert it can get quite cold at night when the highs are below 90. For the desert rat anything approaching 70 is cod anyway and now the chills and alternating sweats are making it so much more challenging. I say trive under pressure and just get tougher. lol.

Ron

James10500 · Guru

Hi Ron,

So just before your 5th injection, I got blood draws on Thursday and did my shots on Friday.

Nice work on knocking out one more togo before your first box is complete !

James

Cinnamon Girl · Guru

Hi Ron, sorry you`re having some uncomfortable side effects, the first few weeks can be hard going while you`re getting used to the meds. Well done for getting your 3rd injection done. smile

How often are you seeing your doc or hospital team? Some things are different over here in the UK but I had my 4 wk test a wk after the 4th shot, I seem to remember.

Goodness it`s hot in Phoenix!

Good luck Ron and also PJ, love from Jill xxx

Ron Gilbert · Senior Member

The waiting for results is never fun but I was wondering more about the timing of the test itself. Would it be 1 week after the 4th injection?

Ron.

missycat · Senior Member

hi Ron i think it depends where you live but my 4wk blood results took 3 weeks.was a long wait hmm

kaz x

Ron Gilbert · Senior Member

Thanks all,

I'm already getting somewhat used to the added level of discomfort. It not all too bad. Here in Phoenix its already in the 90s and its no fun going out and its only May. Im used to the heat as Ive been here over 30 years but it doesn't make it any more fun.

I actually took the 3rd injection this week which puts me ahead of Pj by about a week (I think) so Im wondering if any of you know how long after the 4 injection I should expect to get my 4 week levels?

Ron

PJ · Senior Member

And, that is why I will be living in Colorado soon!! :))

ty · Guru

Hi Everybody,

Ron - Kaz is right, you never exactly know how the sx are going to be until you get there. After the first four weeks most of my sx would start on Sunday and then last until about Tuesday, although they weren't near as bad as at first. I would feel a little better each day until I had to do the shot again.

Those flu like symptoms went away when I was at about shot seven and if I didn't go crazy and overdo it energywise I could make it through the week without too much trouble. I took sleeping pills to sleep, because, although I was very tired, I could not sleep at all without them. That was my main sx throughout tx until the itching skin near the end.

Congrats on doing shot two! Just hang in there and you will get through this, I know it's hard.

PJ - It's interesting how they run your study. I know that I would require reminders to remember my meds, because when I start focusing on something the rest of the world goes away and I might not come back for hours! I did spend plenty of hours under the electric blanket. As a matter of fact I had an inch of snow on the ground when I woke up this morning, Colorado weather is so wonderful... Hope everyone is as fine as they can be, ty smile

PJ · Senior Member

Hey Ron, hope you're having a better day today. Sorry that week 2 was so rough.

I know my doc told me that my study (I think our site has 8 people) filled up VERY QUICKLY. Most have heard of Teleprevir, and the idea of a study with no placebo is too good to pass up. Anyway, I think when we FINALLY began recruiting, it only took a day or two to fill. Many of the other sites were already up and operational at that point.

There will be lots more studies, I just kind of doubt there will be any more for the two drugs about to be approved. Still, it's much better than it used to be for sure!!

missycat · Senior Member

Hi Ron well done on shot 2 smile i found the first few shots were the worst.yep tx is all about waiting around and seeing what happens hope your drinking plenty of water

you take it easy

kaz

xxx

Ron Gilbert · Senior Member

Well, I made it through the night,

I went to bed feeling very cold. By the time I get up this am I was sweating like crazy and still am now. I hope everyone is doing ok out there.

It sounds like the new drug may be out there later this month. Right about the time I get my 4 week test. All I can do now is wait and see what happens. Hoping for great test results of course.

Ron.

Ron Gilbert · Senior Member

Hope your still doin well PJ.

Wed. is my injection day so Ive made it a full 2 weeks today. The second week has really sucked. I had myself convinced that it wouldn't be so bad. Ugh. I am 51 years old so much of my youth has been spent and I sure wish now I had done this at a younger age.

I am only posting on this thread for now to conserve some energy. Only one of the studies I contacted replied to say they are closed. I see now getting into a study can be very difficult. Sure hope they get the approvals for everyone to start using the faster drug.

Hope everyone is doing as well as posible. Ron

PJ · Senior Member

Hi ty and thanks,

Unlike many studies, the one that I"m in has no placebo arm There are two groups of us, one get teleprevir every 12 hours, and the other every 8. I got into the 12 hour group. That works for me since I can take that and the ribavarin at the same time, and I've set up my schedule to coincide with my epileptic dog's med schedule. Not over-doing may be difficult, but I surprised myself by how little I did over the weekend. I just keep telling myself that this is all temporary.....

Funny you say that about winter. I so wanted my study to be then because at least you can bundle up under blankets. I find myself changing clothes alot, first I'm cold, then warm - but that's normal for Spring I guess.

Yep, the txts are cool. I have a smartphone, but for those who didn't they gave them one for the study.

Ron Gilbert · Senior Member

Thanks for sharing Ty.

I did get cold chills the first couple of nights and they still show up on and off. But for the most part its been the sweats all the time. Its like my body doesn't know what to do and can go back and forth in a matter of minutes.

Im sure glad to hear there is at least a chance this will get easier. lol. I was starting to wonder thinking this is only getting worse so far.

Ron.

ty · Guru

Hi Everybody,

Pj - Maybe they test differently to try to help get rid of some of the placebo effect, but what do I know? It was very interesting to me that they text you to make sure you are staying on schedule, I wondered how they accounted for the variables when dealing with individual patients. I'm also glad to hear that your sides are being kind so far, just don't overdo it, like I would when I was feeling better, lol.

Ron - It's interesting that you are having night sweats from the tx. One hour after my first shot I got very cold and I stayed that way throughout tx. I don't know if it was because of winter or what. I know how bad the early sx can be, I was one who suffered the first four weeks, but it does improve. I'm not sure if it gets better or we get tougher at handling it, but the tx becomes more "doable" over time.

Here's to getting that UND in both of you, ty smile

Ron Gilbert · Senior Member

IM pulling for you to be und on your first test no matter when it is. I had a tough time last night with sweating all night and a terrible head ache. Im hoping that just by chance Im one of those that gets an early response. Im heading into the 3rd injection wed, and I sure hope the sx don't get much worse cuz im not liking this much. Nice to see others here completing the course. thanks everyone.

Ron

PJ · Senior Member

I'm not patient either, but I think that is the lesson that I'm learning now. First, I waited a couple of years for the trial (was eliminated from one, a couple others were cancelled, then the med center and drug company had contractual issues), now I will wait to hear the results. By the time this is over I should be a much more patient person than I used to be :).

Ron Gilbert · Senior Member

Thanks Lesley and PJ,

I will be very glad to get a VL count at 4 weeks. I think I would look for a lab on my own if I had to wait 24 weeks. I'm not that patient of a person and it would be driving me nuts. I will be glad to get my progress even if I'm not und at least I want to know if I'm progressing.

We will be rooting for you PJ and you are much more likely to be und sooner so Im sure it will be worth the wait.

Walking is great, I felt 100 times better this morning after walking.

Thanks for the info Lesley, its nice to not be alone fighting this.

Ron.

PJ · Senior Member

Hi Ron,

One bad thing about the trial is that I may not know until 24 in weeks how I am doing, or at the very earliest, 12 weeks, when the teleprevir part is done. The drug company keeps it very hush-hush. If I am clear at 4 weeks, then I do treatment for a total of 24, if not, then I'll continue on to 48.

I'm glad to hear you're doing OK a couple of weeks in.....it seems that I saw/heard only horror stories before and now that I'm treating, I'm reading more and more from folks like us who are managing without a lot of problems. I also realize that 4 days in is WAY too early to assume that it will all be this easy.

After taking it easy all weekend, I just took a long walk with my dog. One of my biggest fears was that I wouldn't be able to do that. I may not do the power hikes this year, but I will surely get out and walk every day. And, I've been sleeping alot as well. For the last year or so I've been so tired, that I'm lucky to make 8 PM, and I'm sticking to that. I do have the excuse that I get up at 4:30 AM.

Hope that your tx continues as well as it started!

PJ

borowif · Senior Member

Hi Ron,

These figures relates to interferon & ribaviron treatment only:-

To go undetected (EVR)at 4 weeks is (if I recall correctly) an exquisite response (I hope I have the terminology correct) & it means a probable successful outcome to the tx.

To attain EVR at 12 weeks is very good news as the virus is sensitive to the therapy.

Undetected @ 24 wks for genotypes 2&3.( End of treatment.)means that the virus is- just that.......undetected & that you have responded to treatment.

For genotypes 1,4,5,6, this test will take place after 48 wks. (End of treatment)

If after 24 wks post tx, further blood tests come out negative, you are considered to have a sustained virological response ....S.V.R. which is what we are all hoping & praying for.

Hope this helps

Lesleyx

Ron Gilbert · Senior Member

Hi PJ, good to see you here.

I just started a week ago wed. myself. Genotype 1 and dint even know about possible trails when I started. If I had done my research a little better I would have found one first. But Im on my way now and have about 2 weeks to go for the all important 4 week test. There has been some confusion for me about how it works for us as I was told by the drug co, that I should expect to be UND at 4 weeks if its going to work but a number of people here are going UND at 24 weeks.

As far as sx the second week has been a little worse but still quite tolerable. I drink water and take occasional IBprofen. Other than that Im staying active and sleeping a lot otherwise. Both seem to help. Feel free to write.

Ron.

PJ · Senior Member

Hi Musicman and welcome

,

I too am new here and I think you've found the right place.

I just started treatment with interferon, ribovarin and teleprivir last Thursday. So far I'm finding it very tolerable. I'm genotype 1B, and the addition of the third drug makes a big difference for us 1 genotypes, so I would definately ask about it. I'm in a drug trial, but it should be available to everyone soon.

As far as insurance goes, that's not something I can answer, I hope yours is better than you think.

And yes, the treatment is NOT to be done if there's any chance of pregnancy. So, deciding what you want to do first is important for sure. I don't know your age(s), etc., but I would think that getting rid of the virus first is going to ensure that you have enough energy for a little one.

As far as telling people, I think that's something that most of us can relate to. My family knows, and my good friends, but very few co-workers, just my boss and a couple of trusted friends there. I am hoping that I can work through treatment and also keep it under wraps....we shall see.

Best of luck to you,
pj

jimboa · Newbie

Everone is different, there are so many factors that affect progression. I heard of a case where a 80 year old man tested positive and he susspected he was exposed during the war some 60 years ago!

The main thing here is its a chronic infection. Some people shake it on there own, some need medication. The key is, if on Meds, Take the stuff till the end.

if symptoms are too brutal Take less ribovarin but keep your interferon at the correct dosage. If you ever reduce the interferon during treatment, you open the door for the virus to survive.

You can actually shake it with just interferon. But today, I think the better cheaper way is go for the interferon, Ribovarin, plus teleprever, on the shorter time frame.

Ya can get depressed on these meds, just keep telling yourself its just the meds. You can do it. I shook the virus a decade ago.

Ron Gilbert · Senior Member

Hi Musicman, I waited 20 years to get treatment. I cant say if it was a right or wrong decision. I can only say on the pro side I didnt end up suffering from the virus and hopefully the drugs are more advanced than they were 20 years ago. On the con side I can say that for sure I was much better equipped physically to handle the tx. Also, while the side effects are bad I don't think they are near as bad as I had imagined and had myself in a very fearful state about taking the tx for many many years. If I could make the choice over I would have taken the tx much earlier in life as I'm 51 now and realize it would have been easier them.

Ron.

Mashar · Senior Member

Hi there MusicMan!

Welcome to the forum. It has been a great help for me learning and being able to find out things with others dealing with the same issues.
Hope all is going well for you.

Hugs,
Mary

doviine · Member

Hi MusicMan, just want to say hello.. I'm new here too - feeling my way around. Best wishes,

Marge

Cinnamon Girl · Guru

Hi MusicMan, just wanted to say `hello` and welcome - sorry I haven`t got round to speaking to you before. Being newly diagnosed comes as a shock to most people so
give yourself time to let all this new info sink in and to come to terms with it. Good news about your ultrsound results.

I`m with the others on the pregnancy plans - treatment comes first without a doubt I would think. Talk your options over with your medical team and your wife, and get as much info as you can to help you deal with it

Wishing you all the best, Jill xx

sunny77 · Member

If you wanted to gt going on treatement to have it out of the way before the baby gets here, could you bank some sperm now to use for the IVF? Just a thought biggrin

Catie · Veteran Member

Hi MusicMan

My partner Greg is on his way through a 48 week treatment for geno type 1 and I can only imagine how GIGANTIC this must be for you both - especially as it is likely that having a child may have to go on the back burner - (although it did occure to me that getting pregnant before the treatment might not be an option? if the ivf ppl will allow that - although having the treatment while your baby is on the way and into its new life would be damn rough going for you and your wife - it can be quite debilitaing ...)

however - from our limited experience - from mine as Greg's partner - I encourage you AND your wife to get ALL the knowledge you can - don't let it scare you but be aware of what is involved - it give you the opportunity to prepare as well as you can and we have found that to be really important and soooo helpful!!

being young - having no liver damage - having not been long infected (I assume this by your age) - all pluses in your favor with regards to the tx working

cheers - Cate =)

ty · Guru

Hi Musicman, A very warm welcome from me as well. My GI Doc was very firm on the pregnancy advice as well, and I was 59 at the time! Make sure you write down all your questions and candidly let your doctor know what you're thinking. My bet is that it will help him or her make the right decision on the timing for your treatment.
If the Doc says treat first, then get on treatment, get well, and you will be ready for that new baby with all the energy that requires. Take care and stay in touch, ty smile

greenqueen · Guru

Hi Musicman and a very warm welcome

As Fnzol has said, Riba can cause birth defects and may also cause sperm abnormalities.

This link has some more info:

http://www.hcvadvocate.org/hepatitis/easyfacts/Ribavirin_warning.pdf

If you're trying for a baby you need to wait at least 6 months after finishing treatment.

Here's some info on treatment decisions:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Treatment_Decision_Guide_10.pdf

Wishing you all the best!

Love Steff xx

Fnzol · Member

my wife and I are trying for a child through IVF and we know that could be very dangerous.
Ribavirin is a Class X drug regarding pregnancy, which means adverse effects on a fetus are severe and likely. There are known cases of birth defects in babies born to women who were exposed to ribavirin aerosol. Keep your wife away from those capsules and their bottles.

Hep Me · Senior Member

Welcome to the forum Musicman, (and welcome to you too dity3)

I live about 200 mi north of ya in the Great Lakes State Musicman. It's good to hear that your ultrasound shows no sign of scarring. The whole thing is so scary I know.

Try asking your doc if any financial help available through state or fed government. Here is a link you may be able to get some answers about treatment funding for your area.
http://www.hepatitis-central.com/hcv/support/oh/cleveland.html

As far as having a baby vs. getting treatment, you have a tough call to make there too. It might be best for you and your wife to talk with your doc about the options, see what he thinks based on you and your wife's ages, etc.

I'd personally have to say do the year of treatment first and then have a child. When the baby comes there will be more bills and needs to think about as well as taking care of the child.

Take care,
Randy

dity3 · Member

Hello music man,

I was in the same situation last week. My biopsy turned out normal and I also have geyno type 1. Waiting for results is the scary part. I will be starting the 48 week treatment in April. I'm still in a scared state of mind, I even has my kids tested and hubby. They tested negative!! As for starting your family I wish you the best, I'm learning that we have to take care of ourselves first before we can welcome everyday with open arms. If you decide treatment it would be neat to have someone to follow on the 48 week journey ahead.

Best of luck,

Nikki

MusicMan · Member

Hello all. Thanks again for all the words of encouragement. Just thought I would update everyone.

I received my liver ultrasound and my lab results today. I spoke with my doctor's medical secretary. My doc hasn't had a chance to look everything over and give an opinion about when to start tx and what kind, but his secretary did give me the results.

According to her my liver ultrasound looked normal. That's the good news. As far as what the ultrasound showed, there was no sign of scarring and no masses in the liver.

As for my blood, she told me I was genoype 1. I sort of had a feeling, as I've read that it is the most common. She also went on to tell me that it will "require 48 weeks of treatment."

YIKES!! 48 weeks. I didn't expect that. I was hoping for 24.

I'm not sure when I'm going to start etc. I know it's best to start soon and get it over with, but my wife and I are trying for a child through IVF and we know that could be very dangerous. Then say after the baby is born, I'm not sure the right time would be when there is a baby around the house and I'm helping raise a newborn. Maybe when the baby is a year old?

I'm sure you all have gone through thoughts of when to start treatment. I guess I will have to wait until my GI doc contacts me to tell me how emergent it is that we treat this thing.

Thanks again for listening.

MusicMan

Hep C Discussion Forum

Legal Disclaimer: