Author Topic: I am supposed to start Sovaldi / Ribivarin 12 week tx. I am afriad. (Read 23077 times)

Raney · « **on:** May 21, 2016, 03:26:45 pm »

I was diagnosed with hep c in December 2014 via a routine physical/pcp visit.. My viral was 20000. In Nov 2015, it was 306. In March it was 40,000. My last blood work showed 1,500 in the beginning of May. My Gastro Dr put in for tx after that and I was approved for Sovaldi and Ribivarin 200mg (3 pills 2x a day, with breakfast and dinner). I have received the medicine and am supposed to start it today.

I have been reading the discussion boards and forums and have read pages and pages of people sharing their experiences. EVERYONE has mentioned the terrible side effects. Their counts have also been in the millions. I do not feel sick now, I have not felt sick at any time since I have found out.

Has ANYONE ever had an experience without drastic side effects? I am a 45 year old single mother, I work full time and am going to school.. I am 5 classes away from my degree and cannot afford (mostly financially) to be taking time off work for being sick over these nest 12 weeks.

As I stated, my viral load is only 1,500. I have no physical effects that I can tell from hep c. I would rather put off tx until I graduate in December and have a chance to save money for the time I may need to take off work.

I am apprehensive now that I have read the pamphlets that come with the medicine. I have a call in to my Drs office, but it is the weekend.

Any advice or input. or personal experiences from side effects, good or bad, are greatly appreciated.

AllShookUp · « **Reply #1 on:** May 21, 2016, 11:28:16 pm »

What geno type of the virus do you have?
From what you say, I see no reason to rush in on this. I would definitely wait until you finish school. Don't drink alcohol.
Perhaps, just a 8 week treatment of just Harvoni might be appropriate.
Mind you, that is my opinion. I am not a doctor.

Raney · « **Reply #2 on:** May 22, 2016, 01:08:52 am »

Thank you so much for your input.

I have genotype 2a. I am almost 4 years clean (probably where I caught it from in my past) .. & I never drink. My alt (& other one. I forget what it's called) levels are all in range. My liver has less then 1% scarring.

Raney · « **Reply #3 on:** May 22, 2016, 01:12:14 am »

Aside from a 1500 viral load, all of my labs, routine bloodwork and pertaining to liver function, were all in range as of May 7 2016.

Raney · « **Reply #4 on:** May 22, 2016, 01:15:01 am »

& so happy for you that your hep free!

AllShookUp · « **Reply #5 on:** May 22, 2016, 02:29:02 am »

There are some newer DAAs that will treat G2a that are on the market or will soon be that have very high cure rates and do not require the addition of the dreaded Ribavirin. I do not remember the names but I am sure someone else will chime in with more info. I need to sign off and get some sleep. I still suggest that you wait and don't worry about the virus till completion of school and then seek the newer drugs when the time is right.

Luna7 · « **Reply #6 on:** May 22, 2016, 10:13:17 am »

Raney,

In my opinion this is just too much of a risk to take due to all the responsibilities you have at this time in your life.
Now if you were VERY ill, and if it were certain you could never access medication again, I might feel differently.

Some people have very little trouble with the Riba, but with others it seems to be a nightmare experience.

Wishing you the best...

KimInTheForest · « **Reply #7 on:** May 22, 2016, 11:04:02 am »

HI Raney. Welcome to the forums!

I believe that, as a Geno 2a who has never treated before and doesn't have cirrhosis, you can treat with Daklinza+Sovaldi for 12 weeks. This treatment chart lists that as an option for 2a:

https://www.hepmag.com/basics/hepatitis-c-basics/hepatitis-c-treatment-naive-recommendations

That way you would avoid the ribavirin. Other people here on these forums have done Daklinza+Sovaldi and reported minimal to no side effects.

Good luck!
kim

Raney · « **Reply #8 on:** May 22, 2016, 12:37:04 pm »

Thank you Kim!

Raney · « **Reply #9 on:** May 22, 2016, 12:43:18 pm »

Thank you Kim and everyone. I really feel much better knowing I'm not alone...and that there are still other options to look into.

Rosie13 · « **Reply #10 on:** May 22, 2016, 10:30:21 pm »

Hi Raney, welcome to the forum! You are smart to do your research & those viral loads do jump around for all of us. My Dr. told me even though I had a relatively low viral load it could jump or lower. MY ALT & AST (liver enzymes) were pretty high so that's why it was important to get going with Harvoni. It was the easiest time with little to no sides. Headaches & tiredness are common but not anything to worry about. You should question the riba because my Dr. ,who I just was with last week for my 24 wk. post treatment labs, told me that Gilliad has a new drug for all genotypes with the same incredible results as Harvoni. It is being introduced this summer. Lots of people were able to work ,take care of kids, & work out throughout their treatment with Harvoni so you can bet the other drug will be great if your Dr. will work with you ! Good luck & keep posting!

Raney · « **Reply #11 on:** May 24, 2016, 01:20:21 pm »

The new drug, Daklinza, was mentioned here earlier, so I started to look into that. While it IS used for gt 2a, my Dr said my insurance won't cover it. My insurance covers the Sovaldi and ribi, but not the Daklinza.

Does anyone know if the pharma company will help cover the cost of the meds, or how to go about doing that?

KimInTheForest · « **Reply #12 on:** May 24, 2016, 01:48:49 pm »

It is possible to participate in the worldwide Redemption eTrials through the Fix Hep C organization in Australia, and that way you would receive 12 weeks of Sovaldi+Daklinza (sofosbuvir+daclatasvir) for $1,500 USD. That is one way to purchase the generic version of the drug combo you are looking for. Other people on this forum have gone that route. The link is here:

http://fixhepc.com/redemption-imagine-freedom-from-hepatitis-c

I believe you need a doctor where you live to agree to monitor you while on treatment (blood work, etc.) And you will need some initial tests/paperwork showing your genotype and probably other things. Info is on the website.

It's just one possible route.

I also know of Genotype 2 people who have gotten Daklinza approved instead of ribavirin because they could make the case that they have a history of either depression or anemia, both of which can be aggravated by ribavirin, so Daklinza was the safer choice for them.

good luck!
kim

KimInTheForest · « **Reply #13 on:** May 24, 2016, 01:49:41 pm »

Raney · « **Reply #14 on:** May 24, 2016, 01:57:36 pm »

KimInTheForest,

I will look into that and discuss it with my Dr if she would be willing to monitor my treatment. Thank you again!

BillT · « **Reply #15 on:** May 25, 2016, 10:24:41 am »

Hi Raney,
From the posts here it seems to be the riba is causing the biggest problems.If I'm not mistaken there were some that did the Harvoni without and didn't seem to have any problems.Talk to your doctor and ask about doing it without.Your numbers are great so they may ok it.As has been pointed out there are new one's coming out(I believe in June)so there will be other options.Keep us posted.

Read Bloodandkoolaid's post int the On Treatment.It look like Future and Blood did it without the riba.As I understand it the riba is only added if there is cirrhosis.It's worth asking about.GL

KimInTheForest · « **Reply #16 on:** May 25, 2016, 03:52:03 pm »

Quote from: BillT on May 25, 2016, 10:24:41 am

Hi Raney,
From the posts here it seems to be the riba is causing the biggest problems.If I'm not mistaken there were some that did the Harvoni without and didn't seem to have any problems.Talk to your doctor and ask about doing it without.Your numbers are great so they may ok it.As has been pointed out there are new one's coming out(I believe in June)so there will be other options.Keep us posted.

Read Bloodandkoolaid's post int the On Treatment.It look like Future and Blood did it without the riba.As I understand it the riba is only added if there is cirrhosis.It's worth asking about.GL

Raney is Genotype 2a. Harvoni isn't an option for Geno 2, according to this chart of treatment recommendations from AASLD: https://www.hepmag.com/basics/hepatitis-c-basics/hepatitis-c-treatment-naive-recommendations

And Sovaldi (which is the recommended treatment for Geno 2) cannot be taken by itself. But there are certainly ways to avoid the riba and substitute something else... Although it may involve a fight with insurance, or buying generic versions overseas.

kim

Rosie13 · « **Reply #17 on:** May 25, 2016, 04:25:08 pm »

Did anyone hear about the new drug from Gilliad that is coming out this summer for all genotypes? How cool for all to be able to take one drug once a day ...

BillT · « **Reply #18 on:** May 25, 2016, 10:30:46 pm »

Thanks Kim.I wasn't thinking,maybe I've been gone too long.

FutureThinker · « **Reply #19 on:** May 26, 2016, 12:15:04 pm »

Hey Rosie13 and so glad to hear all is going well with you!

Gilead's new drug is to be decided upon for approval by the FDA by June 28th, so I'm keeping my eye on that, as I am so curious at what price they will put on it in view of all the heat they received on their Harvoni price tag. FT

Raney · « **Reply #20 on:** May 26, 2016, 01:51:53 pm »

@KimInTheForest,

I just double checked an am actually 2b, not 2a. I have read, which supports what you have said, that Harvoni is not for 2 anything.. I just received my most recent labwork copies ( see below)

Diagnosed: Dec 2014
GT: 2b
F2

April 30, 2016 labs:
Viral load: 1546
Alt: 15
Ast: 17

I have talked to my Dr and decided against rushing into tx at this time. Hopefully, there will be another one in a few months that isn't quite as harsh on the system. The only thing is, the insurance I have isn't too keen on okaying the new meds. I asked about the Daklinza, Dr said, with my insurance, is a no go.

Raney · « **Reply #21 on:** May 26, 2016, 01:53:14 pm »

Quote from: Rosie13 on May 25, 2016, 04:25:08 pm

Did anyone hear about the new drug from Gilliad that is coming out this summer for all genotypes? How cool for all to be able to take one drug once a day ...

That would be amazing Rosie13!

Raney · « **Reply #22 on:** May 26, 2016, 01:58:00 pm »

I am so happy for all of you who have beaten this!!

@BILLT, I will def ask my dr about the ribi / cirrhosis combo you mentioned.

Rosie13 · « **Reply #23 on:** May 26, 2016, 02:24:22 pm »

Hey Raney, most of us would have loved to have had those numbers !!! My LORD! I think you are right to wait to see this summer about the new one for all genotypes. Your liver enzyme numbers are better than mine without hepc...

Lynn K · « **Reply #24 on:** May 26, 2016, 08:52:07 pm »

Quote from: Raney on May 26, 2016, 01:58:00 pm

@BILLT, I will def ask my dr about the ribi / cirrhosis combo you mentioned.

Bill was thinking you were taking Harvoni with Ribavirin which that combo is for people with cirrhosis and not genotype 2

Sovaldi is not taken alone. For those who are taking sovaldi it has to be taken with Ribavirin it does not work as a solo medicine.

Best of luck hope the new meds are approved for you soon

Raney · « **Reply #25 on:** June 17, 2016, 03:18:46 pm »

Thank you all for your words and feedback. I have decided to start it and I have started another topic.. outlining my journey..so others may have that ray of hope.

Rosie13 · « **Reply #26 on:** June 17, 2016, 04:29:23 pm »

Raney, I have you in my thoughts & prayers for a smooth run & lots of good reports along the way. There are so many here that took your combo successfully &, being young, you will most likely power through ! Lot's to look forward too.

Raney · « **Reply #27 on:** June 17, 2016, 04:34:42 pm »

@Rosie13;

Thank you Thank you!! My journey is titled "My Sova / Riba 12 week journey" in the forum "On Hep C Treatment" .. I am only on day 7, but so far, so good.

Rosie13 · « **Reply #28 on:** June 17, 2016, 04:38:53 pm »

GREAT Raney! glad you have this forum to document your cure. I will be following for sure!

Coach Mike · « **Reply #29 on:** June 19, 2016, 12:02:18 pm »

Hi Raney,
Go to FixHepC, join and air your concerns there. This is a major decision and your numbers indicate you don't need to rush into taking something that will most likely have unpleasant side effects. You need the daclatasvir, not ribavirin. For a few hundred dollars, you can get well with virtually no side effects if you already have the Sovaldi.
Given Gilead's past pricing, I imagine their new regimen will be very expensive as well.
Good Luck!
cm

FutureThinker · « **Reply #30 on:** June 19, 2016, 01:28:17 pm »

Hi CM, I agree re: Gilead, I'm not holding my breath that they'll do a better job w/ pricing for the new drug, but we will know in the next 10 days. There is a tiny possibility that they might price it at a "reasonable" number in view of it being for all genotypes, therefore probability of a huge volume of business to be made. We'll see soon! FT

Raney · « **Reply #31 on:** June 19, 2016, 01:57:07 pm »

Thank you Coach Mike and Future Thinker. I decided to take the meds since it is paid for 100% by my current insurance. I am on Day 8 and so far...no side effects really. A little tired in the day but I am used to that as I lead a busy lifestyle. I started a topic to document my "Sov / Riba 12 week journey" ..

The fact that the cure...whatever combo it came in..has worked for so many of you, helped me weigh the pros and cons. Obviously the pros won and I jumped right in. Thank you all. . & Congrats!

FutureThinker · « **Reply #32 on:** June 19, 2016, 02:45:55 pm »

Raney, I am glad the decision is behind you and the path to SVR is ahead! Wishing you a smooth journey, and keep a positive attitude. The future is bright, FT

Raney · « **Reply #33 on:** June 30, 2016, 06:28:55 pm »

FutureThinker:
Thank you!! I received my 1st lab results back today and all my numbers are in range. This is good news since I have heard of the meds possibly making numbers whack out a bit. I have posted the lab results in my other topic. I am eager to get the 1 month labs July 9 to see my vl. Even though I know it is the after tx numbers that really count, every little progression counts!

& so far, 21 days in, no side effects to mention!

FutureThinker · « **Reply #34 on:** July 01, 2016, 12:43:00 pm »

Raney, so glad to hear all is going well, and keep moving forward! FT

Rosie13 · « **Reply #35 on:** July 03, 2016, 01:37:34 pm »

Hey Raney! Look at those liver enzyme numbers! AWESOME. Great news!

Raney · « **Reply #36 on:** July 03, 2016, 01:42:01 pm »

Thank you Future Thinker & Rosie13!

Lynn K · « **Reply #37 on:** July 04, 2016, 05:51:03 am »

I think my platelets looked better on treatment with ribavirin due to everything else like RBC being low so it was a false bit of what looked like positive news on my CBC

But the liver enzyme reduction is real it means hep c is not beating up your liver because it is being eradicated

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Author Topic: I am supposed to start Sovaldi / Ribivarin 12 week tx. I am afriad. (Read 23077 times)