Hep C Discussion Forum

Cinnamon Girl · Guru

RE: So very uneducated

Tig · Admin

Hi Patricia,

Welcome to the forum! I'm glad to hear you have gotten treatment underway. This is one of the best!

I invite you to share your news on our thread established for the members on Harvoni. We call it the Harvoni Train, all aboard. You'll have the opportunity to meet lots of people on the same treatment. Good luck!

http://hepcfriends.activeboard.com/t58762824/all-aboard-for-the-harvoni-treatment-train-enjoy-the-ride-fo/#lastPostAnchor

Tig

susieq · Newbie

i am so overwhelmed today Day 12 of harvoni

Gator Man · Senior Member

Hi J-M,

As an S/O veteran along with Duane, there weren't any other options at the time we started tx over a year ago. Today as a compensated cirrhotic, Harvoni would be the first line drug following the AASLD guidelines .

Olysio does have a few side effects, sun sensitivity being the primary one. It's still easily tolerated, especially compared to interferon therapies. Stay hydrated and take Olysio with a little food.

Your chance of tx success is excellent and I'm confident you will join our non exclusive SVR club in the future!

Keep us posted!

john

RudiRoo · Senior Member

"I just really wish I knew why my Dr. Went with the S/O and not the Harvoni as I have read the success rates are pretty darn good with it"

Hi JM,

Just my 2 cents. I figure since I pay the doctor for answers there's nothing wrong with expecting to get them.

If you aren't comfortable with your doctor, perhaps consider a change. Otherwise, ask your doc to explain it to you in laymen's terms.

You are worth answers, so please don't leave a doctor's office without getting what you went there for. You'll end up with a brain full of confusion and a gut full of worry. Nobody needs that!

Hugs,

Rudi

bubble · Senior Member

These are nucleotides that venture well into the bone marrow where the HCV darlings think they can still hide after defeating the Peg/Riba. tx. Come out and fight ya cowards. Vikerians will conquer you. ( Sorry I guess I watched "The Ten Commandments" again).

Jm: You should ask again your Harvoni/Vikera options. It's a switch to see them give you a more expensive-older treatment. I cant understand it unless your insurance co. isnt up on what's out there.

1a should have Ribavirin. I cant help you on the side effects. Mine wern't permanent at all. Will see this time. Stay tuned.

Cinnamon Girl · Guru

Hi again J-M,

Just to give you a few more details about Sovaldi/Olysio in case you`d like to read it. It was approved by the FDA as an `all oral` combination therapy in November last year and here`s a link to the press release. It also gives details of possible side effects, treatment duration etc.

http://www.prnewswire.com/news-releases/olysio-simeprevir-gains-additional-fda-approval-as-once-daily-all-oral-interferon--and-ribavirin-free-treatment-option-in-combination-with-sofosbuvir-for-adults-with-genotype-1-chronic-hepatitis-c-infection-281674661.html

Before that time the 2 drugs had both been individually FDA approved and when they were prescribed together in combination it was called `off label`, as Duane rightly said.

Hope you`re feeling ok today! smile

Rubye · Senior Member

Hi Just-Me,

It seems I was just talking off the top of my head, as usual. biggrin

The FDA had just approved S/O for 24 weeks in my last month, of 12 weeks of treatment, and since I also have cirrhosis I tried to get the 24 weeks from my doctor but he said no, saying that the cost of S/O was more then the Harvoni and if I should fail treatment then we could entertain re-treating with Harvoni later on. That doesn't make a lot of sense but it's really a mute point now. With a little bit of luck, I was able to get an extra 4 weeks and at 15 weeks I knew I was clear and didn't take the last week. I know that sounds kind of crazy but all I can say is I knew inside of me, intuitively, that I didn't need any more of the S/O to remain undetected. At 12 weeks I was pretty sure there was still some virus lurking in the background even though I was showing undetected. Again, just talking here and definitely not recommending it.

I think what Duane and I were saying is that nowadays Harvoni and then Viekira Pak are pretty much the standard and so the S/O sounded unusual is all. Hey, it worked for me and many many others. And I am Q80K positive with cirrhosis. With your attitude and 24 weeks of treatment you are bound to beat this. I definitely think it is a good thing and that you are lucky to have the 24 weeks. Take care.

Oh yeah, make sure you wear sunblock and wear a hat when outside because the Olysio can cause bad burning.

wmlj1960 · Moderator

Just-me wrote:
As for the 24 weeks, if that's what the Dr's say then certainly that's what I'll do, after all what's 24 weeks compared to the 20+years I've carried this mess! It will be well worth it indeed.

That positive attitude is excellent and is very important to have. I did 24 weeks with some side effects and also with having to deal with other major health issues, but I kept my HCV treatment as 1st priority and now I'm glad I did. 24 weeks will come and go quicker than you would think and when it's over you'll be very glad that you stuck with it.

I also would like to welcome you to the forum. I was also "so very uneducated" when I first got here, but the many helpful members here have the solution for that, as you can already see. So make yourself at home. We're glad your here. smile

Just-me · Member

Duane, I don't mind at all. I'm soaking all the info in! I just really wish I knew why my Dr. Went with the S/O and not the Harvoni as I have read the success rates are pretty darn good with it!

mallani · Guru

Duane,

You're spot on. 24 weeks of Sovaldi/Olysio costs about $300k compared to about $188k for 24 weeks of Harvoni. Who knows about discounts??

The ongoing Cosmos Phase 3 Trial will decide whether Ribavirin should be added to S/O for Geno 1a cirrhotics.

S/O receives a much lower rating by the AASLD, well behind Harvoni and Viekira Pak.

Anyway, back to J-M's thread.

Dzdayscomin · Senior Member

So then this still doesn't make a lot of sense from the insurance stand point then, as Harvoni for 12 or even 24 weeks would vastly less expensive than 24 weeks of S/O at what about 300k for 24 weeks and Harvoni at 190k for 24 weeks....unless the prices went way down?

Don't get me wrong here both of these good treatments, but S/O was originally off label .....something seems a miss as Harvoni is said to be much superior tx and at a nearly 2/3rds of the cost why would that be prescribed that way?

JM you will be rid of this virus in short order and that certainly is my wishes....the rest of this is just talking points and I hope you don't mind.....sometimes I miss part o f the history with these rapidly evolving treatments which may play a part in your Dr's course of tx.

Regards,

Duane

-- Edited by Dzdayscomin on Sunday 5th of April 2015 10:48:17 PM

mallani · Guru

Hi J-M,

With a Fibroscan score of 48, I'd definitely want the full 24 weeks.

Duane, mate, you were lucky!

Sovaldi has virtually no side effects. Olysio does- as others have said, stay out of the sun. Cheers.

Just-me · Member

Hi Tig and Jill!!

After thinking about my post and the question about long term side effects, I realized they haven't been out that long so there's probably none known at this point! just a little ahead of myself there.

As for the 24 weeks, if that's what the Dr's say then certainly that's what I'll do, after all what's 24 weeks compared to the 20+years I've carried this mess! It will be well worth it indeed.

As always, thanks for the words of encouragement!!!

Cinnamon Girl · Guru

Hi again J-M,

I must say I agree with what Tig said, there`s a reason that you`ve been prescribed 24 rather than 12 weeks and it`s much better to finish the whole course and make sure you give yourself the best possible chances of clearing the virus and staying undetected.

I know it seems like a long time but the side effects should be quite manageable and you`ll be so pleased you did it when it`s all over with.

Make sure you keep yourself well hydrated and try not to worry, you`ll be fine!

Keep in touch! smile

Ps- Thanks for filling in your Signature line, that`s very helpful.

Tig · Admin

Hi JM,

Regarding the length of treatment, if you are cirrhotic, that's why the decision to go 24 weeks was made. With that thought in mind, I would want to do the entire course of treatment. It's not the rapidity of the undetected VL with this protocol, which is certainly promising, but the duration of exposure to the medication. The length of treatment ensures total perfusion of the drugs into all areas of the body. With cirrhosis, that is very important.

These new protocols haven't been out that long, so long term effects are yet to be determined. So far the outlook is promising.

Tig

Just-me · Member

Bubble, no Riba. im thinking fatty liver could be possible, it has been mentioned! Glad your side effects are getting better!!

Duane, I'm not sure about the 24 weeks, but I think Ms. Rubye posted that answer! Does anyone know of any long term effects from these meds? Ms. Rubye, if I have reached SVR after 12 weeks do you think they would discontinue the meds?? This is certainly something I'm going to ask about This coming week.

Just took second dose and so far , so good. Had a mild headache last night, but it was tolerable! Thank God.

Thanks a million for all of the well wishes, I wish them right back to you all!

Rubye · Senior Member

Duane, when the FDA approved Sovaldi and Olysio last November, they recommended 24 weeks for people with cirrhosis. Before FDA approval the AASLD was only recommending 12 weeks. I agree with you that the shorter the time the better and wonder if 24 weeks is too much. These are some pretty strong drugs.

Dzdayscomin · Senior Member

JM wonder why they went with 24 weeks ? I did 12 weeks and am UND nearly a yr later and I was gt 1a and i have decompensted cirhosiss? I'm wondering why or when the tx protocol changed to 24 weeks?did I miss something in your diagnosis that would require an additional 12 weeks? I also believe that taking these drugs for the shortest length of time to get the job done is the best course as the long term effects of these meds are still somewhat unknown.

Wishing you the best and hope tx goes very smooth....careful in the sun so ya don't get sunburned....it happens very very fast.

Regards....Duane

bubble · Senior Member

Jm: Those platelets are way better than mine. I am borderline F3 Fibrosis. In 2009 it was fatty liver but now the doc said that wont show up on an MRI. He put me on Riba doing a worst case scenario too. Low blood platelets are a marker for Cirrhosis. It's good being over protective. No Riba? Oh...everyone I am like Zavr now, my side effects are becoming less. I get a 2 week blood test next Saturday. Good luck Jm !

mallani · Guru

Hi again Just-me.

A Fibroscan score of 48 is high, and probably incorrect. My score was 30 which I think was higher than it should have been.

You probably have fatty liver disease, which really raises the score.

Don't know why a trans-caval biopsy was suggested, and with platelets of 138, that would have been fine anyhow.

Forget all that, and assume you have cirrhosis.

With Harvoni available, I don't know why you are on Sovaldi/Olysio. However, 24 weeks should do the trick. The SVR rate is just a bit lower.

Best of luck and keep us informed. Platelets of 138 are not a cause for concern. Cheers.

Cinnamon Girl · Guru

Hi again, J-M,

Thanks for the update and I`m so pleased you have more information now! Don`t worry, it will all start to make more sense as you go along, just take it step by step.

I`ll let Malcolm reply to your comments regarding your liver status but here`s a link to some information on how to fill in your details in your signature line, very helpfully provided by our member Mike (wmlj2960). If you look at our signatures you`ll see the sort of things we write...

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/

Wishing you all the best of luck with your Olysio/Sovaldi treatment, you`re on your way to a new Hep C free life!

Let us know now it goes! smile

Just-me · Member

Hi All!!

What a day! Made my appointment, and I will take my first round of meds tomorrow morning 04-04-15 My treatment will be Olysio/ Sovaldi for 24 weeks.

I am GT 1a with a VL of 1 million. And Q80k is not detected.

I'm not gonna lie... I'm nervous, but yet excited to get rid of Hep C.

There are still some things that are confusing to me but I guess I'll learn as i go.

Malcolm, I asked about the Harvoni, and there are some confusing factors that made them go with the Olysio/ Sovaldi. The Fibra Scan was a 48 which is wayyy high, my platelets are low at 138. They told me based on these results they coincide with having cirrhosis however the MRI results do not show any. The last biopsy they wanted to do was going to be through my vena cava, they didn't want to risk a bleed With my platelets being low, however because this was a specialty procedure and very expensibe, the hospital wanted too much up front so they are pretty much treating me going with a "worst case scenario" .

Geez I hope this makes sense! : /

Bubble, I have that 5 cents, I'm all ears!! LOL ; )

Tig and Jill, I need to figure out how and what to put in the signature area!

looking forward to hearing from you folks!

Tig · Admin

Hey Bubble,

She's on her way as we speak to see her doctor for the first appointment. She doesn't know anything yet. Hopefully we'll get an update soon and then we can assist her setting up her signature.

Tig

bubble · Senior Member

Hey JM, could you please fill your signature with your stats so we can get a handle on you. Maybe you have or I missed it. The Doctor is in....... Fire away! Oh.. 5 cents please. LOL. Welcome !

Tig · Admin

Good luck!

Tig

Just-me · Member

Thank you all so much for your replies!

I am headed to the Dr. right now, for my "learning appt."

and to begin my treatment. Thoughts, prayers and good ju ju are much appreciated.

I will update this evening!

Many blessings to you ALL!

Groupergetter · Guru

Hi J-M welcome to a great forum, with wonderful people who are glad to share their knowledge and experience with this disease. You've started on your journey to be rid of this virus at a great time. Happy and excited for you.

Tess · Senior Member

Welcome J-M! You will kick this disease! The treatments have improved enormously in just the last year.

You've been through/are going through a lot. Caring for your dad took a lot of strength, and your body was fighting the dragon at the same time. Things will change as time goes on, and you will feel better physically and emotionally. You are young and you have a lot of living ahead of you :)

I wanted to mention that you should feel free to ask for your test results. They are required to give them to you if you ask. Be proactive when it comes to your healthcare. The doctors are there to help you, but know that you are your best advocate!

Take care,

- Tess

bubble · Senior Member

Hi J M : Welcome to the train station. I was encouraged to join this site by another Jerzey guy and really am glad. You cant exactly talk in public about this disease but here is all friends.

Your initial feeling of weakness was exactly what took me to the Doctor in 2001. You will make it. You will remove this disease from your system. The treatment is alot more easier this time for me. We are all here for you. All aboard.

MzmiffY · Veteran Member

Hello and welcome J-M !

Bills · Guru

hi J-M

I agree the symtoms sound very familiar. Mine were so bad I only gave myself 6 months when i first found out that was in 2008. I had the virus over 30 years, I'm doing my 4th treatment, Harvoni. I'm 15 weeks in UND and have about 9 weeks to go. Please don't be to hard on yourself there are many of us here still kicking and screaming. You will also find the success rates very encouraging. these guys here can help you understand whats true about hep c and what really matters. Ask away and welcome

BillS

zavr · Veteran Member

A warm welcome, J-M! Happy to read you will soon start treatment!

Cinnamon Girl · Guru

Hi again, J-M, please don`t feel bad for not researching HCV before now, you`ve had other priorities and I`m so sorry to hear about your dad. He was lucky to have such a caring daughter and my condolences go out to you.

It sounds very likely that you were infected via a blood transfusion as donated blood wasn`t tested for HCV at that time, not until 1990. The hep C virus wasn`t identified until 1989 and before that it was known merely as `non A, non B` hepatitis.

The main thing is that you`re moving forward now and about to start treatment, and I think it`s a very good idea to write out a list of questions before your next doctor`s appointment.

I don`t want to overwhelm you with information but you might find this series of fact sheets helpful from the HCV Advocate website. They cover just about every area of Hep C.

http://www.hcvadvocate.org/hepatitis/factsheets.asp

You`ll also find loads of information just by looking around on the forum, as you`ve found out already!

beingsassy · Senior Member

Aloha and welcome to the forum. I lived with Hep C at least 20 years before doing tx. I also had a sense of doom when I learned that I had the disease, it just seemed like I should buy a burial plot already. But, I lived and didn't really have symptoms. I was treated last year with sovaldi and ribavirin and have reached SVR status. I was always scared to do early tx with interferon. The thought of having to give myself shots kept me from doing tx. But, there are so many options for tx now. You stand a good chance of being cured. I see more and more of us being cured. Glad you are here. As others have said, find out your stats, ask about your genotype, viral load, etc. feel free to vent here or ask questions, there are some very knowledgeable people here so use them as a resource. Good luck with tx and stay positive, it does make a difference in tx outcomes.

gigi

Just-me · Member

All i can say right about now is WOW!!!! Thank you all for your replies to my out cry. Rubye, CONGRATS on your hep c free status, thats truly amazing. I hope and pray to follow in your footsteps.

As far as i can tell, i contracted this "dragon" in 1989, i had a traumatic injury that let to a blood transfusion and from what i have been told, back then they did not test blood products like they do now.

When I was going through the forum looking at the posts, i noticed everyone had their particulars in the signature area, this made me really realize ALOT!! I know absolutely nothing regarding my stats. As i said i was diagnosed 5 years ago, however i delayed things by 2 years when my dad was diagnosed with multiple myeloma in 2011. I am an only child so at that time supporting my dads battle was far more important to me than my own battle at that time. Unfortunately, I lost my Dad in May of 2012. Then it was time to work on myself.

I went back to my Dr. and they started my labs and such again, never have I received a copy of them to learn for myself and they have never really been explained to me. I have been a "listener" I know that when i was diagnosed, my viral load was just under 1 million, and that on the scale they used 1-4 , damage wise i was at a 2 according to the biopsy. How sad is that?? I'm really disappointed in myself for not asking questions, for not knowing and understanding what is going on with my body, where the HCV is concerned. That changes as of today!! I WILL know this after my appt. next Friday 04-03

I'm trying to write down things i need to know and want to ask the Dr. so that I can better understand. They best look out I'm on a mission. By Gosh Im gonna get those particulars in my signature area . HA!

Many, many THANKS to you ALL!

Rubye · Senior Member

I understand that feeling of impending doom. I was diagnosed with cirrhosis about 3 years ago and told I would only live 2-3 years. It helped me to learn all I could about Hep C and cirrhosis. This is my favorite site and resource -- www.hepatitisc.uw.edu/index.php
Also, this forum is the best and has an abundance of knowledge and experience.

I just finished treating with Sovaldi and Olysio 12 weeks ago and remain undetected today. It was a difficult treatment for me but I am older and have cirrhosis. Regardless, it was tolerable. The hardest part for me was coping with nausea and fatigue but I was given a prescription that helped with the nausea. It was easily worth the trip because now I no longer have Hep C after having had it for 40 years. Most people on these drugs have no side effects at all.

Anyway, the feeling of doom is gone. Good luck!

Tig · Admin

Hi Me,

Welcome from me too! I'm so glad you found our forum. As you've already seen, we have a great bunch of knowledgeable, friendly people here, that are involved in their care and the support of others. It was a great day when I found this place. I know you'll enjoy our group! As Jill mentioned, if you have any questions at all, let us know.

There are many faces to the disease HCV. It can effect everyone a bit differently at times. Some don't know it for decades and have never felt badly at all. Then there are others that are devastated by it. It can manifest itself in many ways. Until recently many physicians didn't consider testing for HCV and missed the diagnosis for years or decades. I went undiagnosed for 15 years and wasn't successfully treated for close to 35. Research and training has taught most doctors to test when certain symptoms appear or their patient falls into certain categories, such as age and lifestyle choices. I'm happy to see the changes that are occurring. Routine testing of all people is needed and along with these new, effective treatments, I hope to see a significant blow dealt to this disease.

You should do very well on the Sovaldi/Olysio treatment. It's one of the better treatments currently available. There are many new and effective treatments today and each is tailored to specific criteria such as genotype and previous treatments. The success rates of these new protocols far surpass the old. Once you start, you should take care of yourself, and be compliant. Following those two rules will help you succeed. We'll be able to help you along the way too. We've got members that traveled the same road and I know they'll be here to provide advice when needed.

Jill (Cinnamon Girl) mentioned adding your particulars in your signature line. I'm going to include a link at the bottom that will describe the process. It also includes information on the abbreviations we use here. They should help you understand our jargon a lot better.

I look forward to hearing more about you and your progress. Things are getting better all the time! Good luck...

Tig

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/?page=1#comment-58862021

mallani · Guru

Hi and welcome.

Symtoms vary enormously from person to person. What you describe is not uncommon.

Diabetes is also common in chronic HepC. It's usually mild and can be controlled by diet in most cases. It's due to Insulin resistance.

You're obviously Genotype 1 if you're being treated with Sovaldi/Olysio. Ask you doctor why you can't have Harvoni. It's cheaper and more effective.

No need to feel doomed-you'll clear the virus. Cheers.

Cinnamon Girl · Guru

Hi there, Just-Me, welcome!

I`m glad you found us, the internet can be a very confusing place when you`re looking for reliable information! Please don`t think that having Hep C is a death sentence...very far from it! I`m glad to read in your biography that you`re about to start treatment with Olysio and Sovaldi, and once you`ve cleared the virus there`s a very good likelihood that you`ll be feeling a lot better. You have a lot of living to do yet, be sure of it!

We have many people here who have successfully treated the virus with this combo and you should expect to do very well, so you have every reason to be optimistic!

Being infected with Hep C can definitely cause tiredness and generally `feeling bad` and that was certainly my experience, and I`m sure many others here will agree. It does vary quite a lot from person to person though, with some people having no symptoms at all and others being virtually incapacitated by it.

Please feel free to ask any questions and we`ll do our best to help, and note that we have a `Search` box at the top of every page...just enter a key word and a list of previous discussions will come up.

I`m sure other people will be along to greet you soon...best of luck! smile

(PS - It would be helpful if you could write the details of your treatment in your `Signature` too then it will show up at the bottom of all your posts... that would help a lot when we`re replying to you.)

Just-me · Member

Hi there!

I just found this forum and I must say I'm really imressed with all of the knowledge on here.

I was diagnosed 5 years ago and it has seemed like a downhill spiral so to speak. I do not feel like I have been educated nearly enough. I read and try to research online and it seems as though every website says something different. Sooooo confusing confuse !!!!!!

I'm really curious to know if any of you have or had any symptoms ? I am also diabetic, was diagnosed with that as well 5 years ago. I originally went to the doctor because i started experiencing feeling faint, like i was going to pass out and just an over all sensation of "feeling bad" and feeling tired all of the time. I STILL have this feeling, almost like impending doom. It has really consumed me.

I have asked my Dr. if this is related to the HCV and they tell me it is not, but then i read things online that makes me question that. I'm 45 years old and i feel like i have been given a death sentence.

Any info you all are willing to share will be greatly appreciated, bare with me here, i'm still trying to learn and figure all of this out.

Thanks for reading!!!

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