Author Topic: Started sovaldi/ribavirin combo (Read 117282 times)

Rich1957 · « **on:** April 20, 2014, 01:23:36 pm »

Good morning and Happy Easter to all. Today is day 6 in my treatment with sov/rib.I'm Genotype 2. Must be one of the lucky ones so far absolutely no side affects yet. When I started on the 15th my viral load was 3.5 mil. Most of the rest of the blood work was really pretty good AST 39 ALT 43 both within the range. Only thing off was Triglycerides and Cholesterol, but that is a product of poor diet, I think. Since I've read and studied Hep-c I've changed my diet to help myself out. Low carb, no grain,limited fat, and extra protein. Salads daily, multiple fruits, and watch proportion size. Already feel much better than I was. Needed to drop 25 pounds and they are melting off. Hope the diet helps my body fight the virus better, can't hurt. Anyway back to why I'm here this site has been so helpful with info and encouragement I love it ,I try to study everything related to this disease. Can't wait to get more blood work done mid May to see my progress. Lost my wife of 18 yrs to this disease so I know the bad side. The new meds are miracles in the making. Sometimes I feel that I don't deserve it after what I had put my body thru for years. But thank God for them. The only thing that could be better is if the cost was in a range so everyone could get the help they desperately need. Just wish you all the best, and thanks to all that pay it forward,good motto to live by. Fred

lporterrn · « **Reply #1 on:** April 21, 2014, 10:55:00 am »

Hi Fred,
Thank you for such an uplifting message. I love that you used this time to make changes in your diet. I did the same thing, and now, I am clear of hep C, thinner, stronger, and healthier. I feel better than I have in years, and when treatment is over for you, I hope the same is true.

Rich1957 · « **Reply #2 on:** April 21, 2014, 04:46:44 pm »

Thanks I will try to keep posting as I go along. Just keeping my eye on the ball 7 down and 77 to go. Fred

Mike · « **Reply #3 on:** April 21, 2014, 06:20:14 pm »

That's great news, Fred! One day at a time goes pretty quick when there is only 84 days to count!

Hang strong and best wishes, Mike

lporterrn · « **Reply #4 on:** April 21, 2014, 08:08:15 pm »

Yes, at $1000 a pill, you definitely want to keep track! I used a weekly pill container. I am very good at taking my pills, and as a nurse, very good at keeping track of other peoples' medications, but during treatment, all bets were off! It amazed me how many times I'd take a pill and then wonder if I took it - the pill container fixed that.

Rich1957 · « **Reply #5 on:** April 21, 2014, 08:40:54 pm »

Yes I'm of the age that I forget what or if i ate breakfast. My pills came in bottles not on a board , I've had to recount them a couple of times so far. Good idea i'll pick up a daily pill container. Thanks.

Mike · « **Reply #6 on:** April 21, 2014, 08:50:00 pm »

Yes...the pill counter s a life saver. I had two - 1 for the AM; and 1 for the PM. Really helped me keep track. I do take other medication - so it just made it easier.

Best wishes, Mike

lporterrn · « **Reply #7 on:** April 21, 2014, 08:52:14 pm »

Strangely reassuring when others can't recall what they ate for breakfast!

Rich1957 · « **Reply #8 on:** April 21, 2014, 09:28:34 pm »

It's funny how you can remember when you were 5 , but hours ago not! Remember we are like a fine wine , get better with age.

Rich1957 · « **Reply #9 on:** April 23, 2014, 05:48:49 am »

Good Morning all, I guess I do have one side affect , restlessness, cannot sleep more than a couple of hours at a time. Not much to put up with . Just took my meds, starting day 9. Cannot believe how nice it is with the new meds, thank God for the new advancement's in treatment for Hep-C . It's like getting a second chance in life, starting over at 56. Thanks again for all the support and information. Fred

lporterrn · « **Reply #10 on:** April 23, 2014, 10:53:45 am »

Hi Fred,
Yes, that is a common ribavirin side effect. Eventually I needed help with this, esp. for sleep - my doctor prescribed something that really helped. It also helped to take my ribavirin as early in the day as possible. Some docs are also suggesting pts take B12.
And as you noticed, it is still easier than the old days! These issues are manageable.

Rich1957 · « **Reply #11 on:** April 27, 2014, 07:15:48 am »

Quote from: lporterrn on April 23, 2014, 10:53:45 am

Hi Fred,
Yes, that is a common ribavirin side effect. Eventually I needed help with this, esp. for sleep - my doctor prescribed something that really helped. It also helped to take my ribavirin as early in the day as possible. Some docs are also suggesting pts take B12.
And as you noticed, it is still easier than the old days! These issues are manageable.

Good Morning This is day 13 of my sol/rib treatment. Feeling better everyday. Had an observation that may not mean anything but I'm curious. The first couple of days of treatment My stools were very dark, not black, but very dark. Then in about a week everything seemed to change , for the better more normal color and consistency, even regularity. Have not seen this for years. I know I've changed my diet but wanted to know if this could be from a change in my liver itself. Anyone else or is it just me? Fred

Mike · « **Reply #12 on:** April 27, 2014, 03:01:42 pm »

Hi Fred,

A known side effect of RIBV is a change in stool color (usually dark). However, the greatest factor in stool color is diet. I'd imagine the changes you're noticing are a combination of the changes you made in diet and the RIBV.

As far as changes in the liver, it could be. But this needs to be tempered with the fact that Hep-C inflames the liver (which causes the damage). Assuming that the VL has significantly dropped, it can take up to 90 days for the inflamed tissue to normalize. However, liver enzymes can normalize rather quickly, which can indicate that the inflammation is subsiding.

Both these factors would have a positive effect on the overall health of the liver.

Best wishes, Mike

Rich1957 · « **Reply #13 on:** April 27, 2014, 03:15:04 pm »

Mike one more question, on your blood work what indicates how much inflammation there is in the liver? Thanks Fred

Mike · « **Reply #14 on:** April 27, 2014, 04:05:35 pm »

Hi Fred,

Generally, elevated ALT and AST levels suggests inflammation. A liver biopsy, however, is probably the most accurate measure.

When I had my biopsy (2000), I was a 2/2, which means moderate inflammation and moderate fibrosis. However, that was just a real-time snap-shot of the inflammation, as it can wax & wane.

Basically, the research suggests that Hep-C hits the liver in bursts - so one can have a month long period of moderate inflammation (this causes the liver damage) followed by a period of no inflammation (wax/wane).

Once the virus is cleared, it follows that the inflammation stops (as the Hep-C is the pathogen causing the inflammation).

That's why Solvaldi is such a game changer - it knocks the viral load out rabidly - and holds in the majority of those treated (SVR12).

I'm going through the treatment-is-over-and-the-VL-is-undetectable period...all I can do now is wait the 12 weeks to know if it holds. It's really that simple - either it holds or it doesn't.

The first step is getting through the treatment, and I'm glad you're doing well.

We all have a great chance to beat this virus!

Best wishes, Mike

Rich1957 · « **Reply #15 on:** April 27, 2014, 07:36:47 pm »

When I started my alt/ast were within a "normal " range. They did a ultra sound and said that my liver appeared "normal" the kicker was my viral load. probably had Hep-C
for almost 30yrs and this is my first treatment. Did not get a biopsy, at the time my insurance didn't want to pay. Since the load was 3.5 mil they opted for treatment now thank God. Can't believe how good I feel, when my wife went through treatment back inn the 90's she was sick from the interferon it wasn't pretty,but her liver was already in cirrhosis by the time they started. Thanks again Mike and everyone who reads and helps with info. Fred

Coach · « **Reply #16 on:** April 27, 2014, 09:20:02 pm »

Started Riba/sovaldi 2 weeks ago , no side effects. Base blood work was ALT 60 AST 36 VL 133529. GT 3a .After 1 week ALT goes from 60-31 and AST from 36-21..Did not have VL done they said after 4 weeks... Had Hep C since at least 95 never treated. Did intravenous vitamin C Milk Thistle and Max Green which kept #s in check and also helped with fatty liver. Have this treatment scheduled for 6 mos. but am hoping to kick ass and be done in 4 or 5 ?? Any other gt 3 , be interested in hearing your progress..

lporterrn · « **Reply #17 on:** April 28, 2014, 08:30:18 am »

Welcome to the forum Coach - I love your dragon avatar! I am not gen 3, but I did clear using sofosbuvir, ledipasvir, and ribavirin during a clinical trial. I had gen 1a - my 3rd treatment. I wish they had shorter treatments for genotype 3s, but the data is so compelling to treat longer, that I hope you aim for the full 6 - perhaps you and your doc can talk about ribavirin reduction if the going gets tough. Has your doc mentioned B12 supplements? Keep in touch.

Coach · « **Reply #18 on:** April 28, 2014, 09:56:48 am »

Thanks for the reply. So far the effects of rib/sov have been fine. A little spacey at times. What are the b-12 supps for?? I know I probably will go the full 6 mos. on meds. but like to think I could end sooner...

lporterrn · « **Reply #19 on:** May 01, 2014, 10:08:28 am »

Dutch - Here are 2 links to B12 and hep C treatment:
http://www.webmd.com/hepatitis/news/20120717/vitamin-b12-may-boost-hep-c-treatment-response http://group.bmj.com/group/media/latest-news/vitamin-b12-supplements-may-help-treat-hepatitis-c

Rich1957 · « **Reply #20 on:** May 09, 2014, 08:55:59 pm »

Well Monday the 12th of may is my 28th day of treatment and my next Doctors appointment. Everything is going fine , sometimes when I first take my sov/rib I feel tired but other than that I'm great. Just want to see the results from my first blood test, I'm very anxious hope the results are good, that would make the rest of the treatment easier, just knowing it is working. I'm already looking at getting back to work, had resigned myself to never being able again now I have great hope. Thanks,I will report the results of my bloodwork as soon as I receive it.

thecommodore · « **Reply #21 on:** May 11, 2014, 08:32:43 pm »

Fred,

Great news on how you're coming along. I'm curious tho - since your meds are pretty expensive, have you had any trouble with your insurance helping you with that?

Rich1957 · « **Reply #22 on:** May 11, 2014, 10:26:27 pm »

Commodore I am on Medicare/ Humana drug coverage. When I found out I was positive it took me about 3 months to get them to agree that I needed the meds. First time they turned me down and I had to appeal the ruling. After that they told me my co pay would be 7000.00 which I could not afford. Got ahold of PAN(patient access network) who gave me a grant for 7000.00 and my meds cost me 3.44 per month. They were a God send. Humana gives me ribavirin in 200 mg at 5 per day. I will be on my 28th day tomorrow Monday. Can't wait to see if it is all working. There are other places you can go if you are not covered , just be persistent, it's to important to wait on someone else to do it for you. Hope this helped and I will give you anything I know or can help you find. Mike is the one that is an encyclopedia on the subject. Good luck

Coach · « **Reply #23 on:** May 13, 2014, 02:08:51 pm »

Just got back results from 1st month treatment with rib/sovaldi and viral load is 0. down from 133529 a month ago.. ALT 25 AST 24 only problem is my red blood count is dropping. They say adding iron is good but doesn't that feed the virus?? Doc will be in tomorrow will see what he says...GT3a

jberlin · « **Reply #24 on:** May 13, 2014, 02:17:31 pm »

Undetectable! Very nice news, congrats! No, adding iron will not feed the virus, but won't help you much either, and you would be better off eating leafy greens like spinach, but really the iron won't help much as the drugs are effecting your red blood cell production at the source. If your count drops too low they will put you on Procrit. But, the drugs are doing their job and that makes it all worthwhile! Keep us updated, as we don't get many geno 3's here so your treatment results will be helpful to the guests on this forum. Continued success! -jack

Coach · « **Reply #25 on:** May 13, 2014, 02:43:58 pm »

Thanks will keep eating the leafy greens and keep posting..

Mike · « **Reply #26 on:** May 13, 2014, 04:28:03 pm »

Good deal on being undie! Makes the journey a lot easier when you get this kind of news!

Best wishes, Mike

jberlin · « **Reply #27 on:** May 13, 2014, 04:35:24 pm »

Coach, thanks for the great attitude and the chuckle! Made me think of a question though. With Incivek everything tasted like rusty nails for 12 weeks, is taste an issue with sovaldi? -jack

Mike · « **Reply #28 on:** May 13, 2014, 05:16:13 pm »

Yes. I noticed a peppery taste from either the SOL or RIBV. I attribute this to the SOL, as I didn't notice it when I did 48 weeks of INTF+RIBV.

Taste is gone now, and I'm feeling 10 years younger.

Mike

lporterrn · « **Reply #29 on:** May 13, 2014, 05:34:29 pm »

Congratulations Coach! That is great news. Jack is right, and I'll add a little more to that. There are many kinds of anemia, and the type you have is probably from ribavirin, so iron wouldn't help, BUT the only way to know for sure is with the correct lab tests that will verify the cause(s). So, your instincts of waiting to hear from the doc are good. If you need iron, then you should take it, but few of us do. While you are at it, perhaps talk about B12 http://www.ncbi.nlm.nih.gov/pubmed/22810757

Coach · « **Reply #30 on:** May 13, 2014, 11:06:25 pm »

I haven't noticed any difference in taste. Drinking alot of water especially after the riba in the morning. If I do not drink the water I start to feel pretty light headed.

Coach · « **Reply #31 on:** May 14, 2014, 12:27:44 pm »

I will start the B-12 today, thanks Lucinda. Is 2500mcg enough? Also the red blood count is 12.9 so doc wants to continue full 1200 mg of riba. Will keep checking with blood work..

lporterrn · « **Reply #32 on:** May 14, 2014, 03:06:41 pm »

Hi Coach - I'd talk to your doc. In the study they used injectable B12 (5000 mcg every 4 weeks) I don't know what an equivalent sublingual B12 dose is.

Coach · « **Reply #33 on:** May 14, 2014, 03:16:15 pm »

OK will see what he has to say..Thanks Lucinda

Rich1957 · « **Reply #34 on:** May 19, 2014, 11:04:37 am »

Well I'm back , just got my blood work results. I started sov/rib on the 15th of April and on the 12th of May I had my first blood work done. I was amazed at my results, I went from 3.5 mil to 38 on the viral load, a small miracle in my eyes. I've got 7 more weeks , been lucky , I've had no side affects from any of the medication. Hope everyone has results like this it really eases your mind. Thanks for listening. Fred

Coach · « **Reply #35 on:** May 19, 2014, 11:26:48 am »

Thats great news on the viral count...Kick the dragons ass...

jberlin · « **Reply #36 on:** May 19, 2014, 11:54:29 am »

Rich, somewhere close to 6 log drop in 4 weeks is fantastic! My 1st go round with the dual therapy it took me 24 weeks to drop that far, and even after another 24 weeks of that hell I still relapsed. These drugs are breakthrough treatments for sure! Keep it going and cure thyself! Best wishes, jack

papaCE · « **Reply #37 on:** May 24, 2014, 02:47:06 am »

Hang in there, I am 2 weeks post Solvaldi/Rib 12 week journey. I was undetectable at 2 week blood test and ever since. I HAD HCV G2 3.4 load at start.
My company changed Insurances mid stream which made things interesting but treatment was already approved.
Just getting my energy back and wind, the Anemia was a challenge in at the end and DR said it takes about a month to get Ribavirin out of system. Getting better everyday. My grandkids shared a cold with me the week I finished meds so I'm getting over that as well. Most side effects came and went some more extreme. The sleeplessness lasted about a month in the beginning.

No matter what...it's a blessing.

Colormepurple · « **Reply #38 on:** May 24, 2014, 09:05:07 am »

Husband just started 10th week and had a 8th week VL done just got results and nothing detected so hopefully will stay that way from now until forever.
Thank you God and to Sovaldi and peg. Finally some good news . Smiles forever. So to the others here look up so far so good. The journey is bearable hard on loved ones but worth the journey.

Now to see if stage 3 and cirrhosis will heal up some on its own .

One step at a time

jberlin · « **Reply #39 on:** May 24, 2014, 02:59:00 pm »

Awesome news.. The hope is there for all of us: "not detected forever"! -jack

Coach · « **Reply #40 on:** June 07, 2014, 09:58:19 am »

Just got 8 week BW done will let you know results next week. They did not do viral count just the other stuff. Asked Doc why not do viral every month and he said its protocol that they will do viral at 12 weeks??? Any thoughts? It seems you would want to see viral often..

lporterrn · « **Reply #41 on:** June 07, 2014, 10:12:48 am »

Coach - The reason we do viral load tests at week 4 and 12 is to verify the meds are working. If we did it at week 8 it would not alter the course of treatment. It is a pricey test. If the viral load is non-detectable, we celebrate; detectable we worry, but the course of treatment remains the same, what's the point? Does this makes sense?

Coach · « **Reply #42 on:** June 07, 2014, 10:54:31 am »

OK good to confirm that with you. I believe you have to be your own advocate and I like to double check everything my doc tells me. He has 2 patients on this protocol and it is all very new. Thanks for confirming the info..

Coach · « **Reply #43 on:** June 09, 2014, 03:23:37 pm »

Just got back results of 8 weeks on sol/riba, and all is great. Hemo steady at 13.5, AST- 23 and ALT--20. The next set of tests in 4 weeks will show the Viral count..

jberlin · « **Reply #44 on:** June 09, 2014, 03:25:59 pm »

Good news, and it is gonna get better... 4 weeks from now, then 16 weeks from now bloodwork... Will be UD I just know! keep the updates coming and get cured.

Best wishes,
jack

Coach · « **Reply #45 on:** June 09, 2014, 03:29:34 pm »

Thanks for the positive vibs. always good...

Rich1957 · « **Reply #46 on:** June 10, 2014, 09:15:52 pm »

We'll hope this finds everyone doing well. I started my 9th week today of sov/rib treatment . Went in for my blood work today also, this means I'm in the home stretch . My Doctor informed me today that after my blood work at 12 weeks he doesn't want to see me for 6 months. Will talk to you all after my results are back. Thanks for listening. Fred

Colormepurple · « **Reply #47 on:** June 11, 2014, 02:02:52 pm »

Well all I keep looking to check on all of you to see how things are going tomorrow is the last day of meds for my husband and no more needles last one last Thursday, Here's to Slaying the Dragon. But unlike Mike , they are waiting 6 months to do another Viral load, just to make sure. They tell me here he is the first one to do sovaldi here so here's to go news in December. Will be a good Birthday Present for him

hope it is working for you call and look forward to seeing your results in July Mike.

jberlin · « **Reply #48 on:** June 11, 2014, 03:00:37 pm »

Congrats to him! I remember taking my last shot, then my last pill... I couldn't believe it. Great feeling of relief and accomplishment. I have a beef with your MD though! The CDC has maintained for way too long that the Hep C incubation period is 6 months post treatment, but hepatologsts' consensus is 3 months is all you need. There are zero cases of someone being UD at 3 months post treatment relapsing before 6 months! Why should you have to wait? Can't wait to hear his good news! -jack

Coach · « **Reply #49 on:** June 11, 2014, 03:05:10 pm »

Good to know about 3months after. Keep the info flowing..Thks

Mike · « **Reply #50 on:** June 11, 2014, 04:58:10 pm »

An undetectable viral load 12 weeks after completing Solvaldi-based treatment is 99.9% indicative of a cure.

Moreover, an undetectable viral load at 4-weeks post treatment is almost as conclusive (99% of those who are clear at this threshold, remain clear at the 3 and 6 month post-treatment thresholds).

Lastly, there will be a lot more numbers, data and research available after July, as the first large group of the general population will be completing treatment (the current research is based on analyzing the clinical trial results and data from 2013).

Best wishes, Mike

Rich1957 · « **Reply #51 on:** June 26, 2014, 05:06:50 pm »

I'm back, got the results of my eight week blood work. Was at 38 on my 4 week results. Now at ud all the other blood work looks good. I am at 11 day's to go. Ready to be done. The only serious side affect from sov/rib is the sun, even just driving have to watch the sun on my arm. Will blister real fast. So far I've lost 45 lbs, looking to loose 15lbs more. Still eating healthy feeling great. Will report if anything changes , but I don't see it. Ready to start the next chapter of my life, Virus free. Hope everyone has the great result's that I've had. Thanks for being hear for me to ask questions and share my experiences. It's been a pleasant journey. Good luck to all. Fred

jberlin · « **Reply #52 on:** June 26, 2014, 05:10:33 pm »

Great news... You will soon be done with this virus. Let us know the results of your post treatment blood work! -jack

Mike · « **Reply #53 on:** June 26, 2014, 10:49:25 pm »

That's great news Fred! It makes the journey worth it!

Best wishes, Mike

lporterrn · « **Reply #54 on:** June 26, 2014, 11:27:06 pm »

Wonderful news Fred!

Coach · « **Reply #55 on:** July 07, 2014, 02:27:48 pm »

Results of 12 week half way point just came back.. Viral Zero Alt-20 Ast-20.. All is very good. Hemo down to 13.0 but Doc not concerned.. Next test week 16.

jberlin · « **Reply #56 on:** July 07, 2014, 02:52:54 pm »

Great news... on the far turn now, headed for the home stretch! Glad to hear your med tolerance is good, and blood count is not falling too low. They won't worry unless you start approaching 10. Best news is the treatment is working! Any weight loss? Keep giving us updates. -jack

Coach · « **Reply #57 on:** July 07, 2014, 03:13:16 pm »

No weight loss in fact I've put on 5-7 lbs. Hungry from this stuff all the time. A little bit like when you're on steriods. I never eat sweets and now I feel like them all the time..I used to eat a big brkfst skip lunch and have an early dinner. Now if I skip lunch I feel a little off from meds.. Just have to workout more.. Any thoughts??

jberlin · « **Reply #58 on:** July 07, 2014, 03:34:29 pm »

No suggestions, except perhaps have fruit and veggies around for snacks to stay away from the empty calories... In 2004 when I did the 48 week dual therapy I dropped from 180 to 140, and looked like a skeleton. The interferon diet.. hair loss too. Had to have both red and white blood booster injections too. Then, with the Incivek triple therapy you had to eat fat content with the pills 3 times a day for 12 weeks to keep the incivek from tearing your insides up, then back to the dual therapy for 12 more weeks, and I lost maybe 12-15 pounds. So, I am amazed by the changes in 10 years, it's awesome, all the while cure rates go up and treatment times go down. -get yourself cured! jack

Coach · « **Reply #59 on:** July 07, 2014, 03:37:23 pm »

I can see you've been to hell and back a few times. Thanks for the info.

jberlin · « **Reply #60 on:** July 07, 2014, 03:44:16 pm »

Cry no tears for me my man! I am really lucky. I had a disease with no cure in the 80s, and my liver held up long enough for me to get cured. It wasn't fun, but well worth it, and if I had waited for better treatments, maybe my liver crosses the point of no return? I am really happy drugs are improved and a bit easier to tolerate, but I have no complaints at all! Hell, I am cured! You will be very soon! It is more fun to be the one doing the cheering now, instead of the one being cheered on... Join me! Best wishes, jack

Coach · « **Reply #61 on:** August 03, 2014, 09:29:32 am »

Just did 16 week BW will post results asap. A friend just finished GT 3a 24 week and has a viral of 119000. He started in the millions. They now want him to do 12 more weeks with a shot of Peg once a week??? Anyone ever heard of this or are Docs just trying anything at this point. Also he had done the peg/riba for 18 mos in the past.

DesertGuy · « **Reply #62 on:** August 03, 2014, 02:06:20 pm »

can't wait to hear about your friend

I am also Gen type 3 am
and wondering outcome

rainbowray · « **Reply #63 on:** August 04, 2014, 05:00:32 pm »

HCV RNA, PCR Quant <15
HCV RNA, PCR, Quant <1.8
Note HCV RNA NOT DETECTED

What a great day after being diagnosed over 43 years ago.

Coach · « **Reply #64 on:** August 05, 2014, 07:14:05 am »

Rainbroway, Congrats on those #s How long have you been on meds and what kind.?? To All my 16 week results came in 13.8 on Hemo .. ALT and AST 25.. All is great. 8 more weeks to go..

rainbowray · « **Reply #65 on:** August 05, 2014, 09:16:17 am »

To Coach,
I took the lab at 28 days of sovaldi/ribavirin combo. Liver enzymes were normal at two weeks. Hard to believe, but true.

Coach · « **Reply #66 on:** August 05, 2014, 09:52:07 am »

And you are GT 3a ? How are you feeling on the meds???

rainbowray · « **Reply #67 on:** August 05, 2014, 11:09:57 am »

Hi Coach,
I am Gen 1B, I will be on treatment 24 weeks. I am only feeling tired at the end of the day when I arrive from my job. Kind of overly tired than normal. Sometimes takes awhile to get to sleep, but not major, and small spasms now and then on back and legs. Very tolerable so far. Now with non-detected I am inspired to go all the way no matter what.

Coach · « **Reply #68 on:** August 05, 2014, 04:16:33 pm »

Your in the ring with the dragon and kicking a** . No Quit .. Good Luck .Keep us posted...

Coach · « **Reply #69 on:** October 08, 2014, 01:34:05 pm »

Got back results of 1 week post treatment and undetected alt-16 ast-20 . going back in a few weeks for more BW, Still drinking plenty of water to help clear the body of meds. Feeling stronger more energy. Will keep you posted

Rich1957 · « **Reply #70 on:** October 09, 2014, 05:34:24 am »

Well it's been a little bit since I've been on this forum. Things could not be better. Finished 12 wks. of sov/rib on July 8th, results at that time were undetectable. Have to wait till Nov. 13th for my next visit. Had to get a new Doc moved to a new State. Have my fingers crossed, but feel things will be good. Fri. I'll be 57 and am just starting my life after years of this hanging over my head, feels like I got out of prison or something. Just want to thank everyone who was there when I needed the support and knowledge about this plague. Hope everyone gets the results that have blessed me.

zeena · « **Reply #71 on:** October 15, 2014, 11:03:51 pm »

has anyone had problems with electrolytes? my doc said i was dehydrated because of electrolytes at the time i was in a lot of pain in my liver and bladder and kidneys what is the best way to keep electrolytes in the body? i had taken a small amout of hydrocodiene and ibuprofen and then saw the contraindications with hydrocodiene. actually i started feeling horrible after i took it and it lasted for 2 days.could that have screwed up my electrolytes? i threw the remaining away.hepc 53 i am in sales too, and the anxiety / energy i get from riba i can process into sales. its when my mind doesnt have something to obsess about that the anxiety goes into outer space.i am not on any antidepressents because i cant be affected by a slow down in productiivity. oh well...

zeena · « **Reply #72 on:** October 15, 2014, 11:12:28 pm »

its just weird that the side effects are so invisable,and can change on a dime.i remember me telling my doc a long time ago that i could feelpain in pain in my liver, and he said i couldnt because it doesnt have nerve endings or something like that. i dont hear that now. because i feel pain in my liver a lot!oh well.. cheers to our good health and second chance in life not talking about livers but eating them with onions.

Coach · « **Reply #73 on:** November 03, 2014, 12:56:05 pm »

Got back the results of 5 weeks after, and the Dragon is back . 2 million which is more then before. GT 3a is a bitch. Will have to wait for something new to come down the line. Good Luck to all who are fighting the fight..

DesertGuy · « **Reply #74 on:** November 03, 2014, 01:02:03 pm »

Sorry--been reading your posts--that's same treatment as me, same geno

rainbowray · « **Reply #75 on:** November 03, 2014, 01:35:55 pm »

Dammit

DesertGuy · « **Reply #76 on:** November 03, 2014, 01:46:14 pm »

Rainbo--I'm not a happy guy either, can't really put it in words

zeena · « **Reply #77 on:** November 03, 2014, 02:53:30 pm »

i am geno type three too. i believe this is our time, the drug companies are not giving up on us,and the new ribaviren peg free drugs will be easier to handle.hold on to how strong you feel coach!! the finish line may have been moved, but we will get there!!

Coach · « **Reply #78 on:** November 03, 2014, 03:00:15 pm »

Thanks to all for your replies and thoughts. So true what you said Zeena about the drug companies and the finish line. I have a ton of things to be thankful for in my life. Don't give up. Don't ever give up. (Jimmy V)

rainbowray · « **Reply #79 on:** November 03, 2014, 03:41:46 pm »

This Appvie combo is looking good.

Read more: http://www.hepmag.com/articles/express_scripts_abbvie_switch_2831_26351.shtml

Coach · « **Reply #80 on:** November 03, 2014, 03:48:05 pm »

Couldn't get on that site without a pword. But will look into it and everything else that comes up ..Thanks

rainbowray · « **Reply #81 on:** November 03, 2014, 03:55:09 pm »

I screwed up the link, copy and paste it to your url.

rainbowray · « **Reply #82 on:** November 03, 2014, 03:57:31 pm »

See if this works.

http://www.hepmag.com/articles/express_scripts_abbvie_switch_2831_26351.shtml

Bucky · « **Reply #83 on:** November 03, 2014, 04:24:44 pm »

http://www.hepmag.com/articles/express_scripts_abbvie_switch_2831_26351.shtml

IDK why underlining the link matters?
Bucky

rainbowray · « **Reply #84 on:** November 03, 2014, 04:39:02 pm »

Thanks, I don't know either.
Gilead is coming out with a different combo also, that is good for all Genotypes.
I don't have that link.

Coach · « **Reply #85 on:** December 08, 2014, 12:36:59 pm »

Does anyone have info on Daclatisvir/Solvaldi it is in the Ally 3 trials and sounds like a possible for gt3.. Is it 12 or 24 wks for a sol/rib non responder, ??

BattleTheBeast · « **Reply #86 on:** December 08, 2014, 05:37:49 pm »

This may help:

http://hepatitiscnewdrugresearch.com/on-the-road-to-hcv-interferon-free-therapy.html

Coach · « **Reply #87 on:** December 09, 2014, 01:26:20 pm »

GT 3 finished sol/rib 9/22 , four weeks after VL came back . My AST was 28 now 126 and ALT was 30 now 280. Now Doc tells me they don't prescribe sol/rib for gt3 . Second guessing myself for ever trying this stuff, I was way better off before the tx. How does taking the meds make things worse?

DesertGuy · « **Reply #88 on:** December 09, 2014, 02:10:00 pm »

This really pisses me off--BUT THANK YOU for posting this
In 7 days I finish 24 weeks of same thing--I'm gen 3 also--My doctor has already basically told me that it is not going to work (because we did not use Interferon), I have felt from the beginning something was wrong. To but us thru weeks of this treatment, and I agree with you that I was way better before beginning treatment, there was previous knowledge of the shitty outcome. Believe me---I'm going to be first in line signing up for the class action suite I see coming !!!!

Coach · « **Reply #89 on:** December 10, 2014, 01:06:15 pm »

I hope your dr. is wrong and it does work for you. I didn't know the disease would come back with a vengeance if tx failed. My #s are off the charts and now I have no choice but to try the next drug of choice for gt 3. It looks like it might be solvaldi and daclastivir . Can't think about law suits, cause I might not be around to spend the $$..Got to figure out the next step and hope the drug co. is not just blowing smoke up our a---es. Good luck to you .. Keep us posted..

Luna7 · « **Reply #90 on:** December 10, 2014, 02:52:20 pm »

Ack that is my worst nightmare...do deal with riba rage for 6 months for nothing.
I think I will hope for Daclatasvir with Sovaldi to treat genotype 3, but there seems to be some controversy with it at this time due to differing companies creating each drug.
This just isn't right...it's been known for some time that these drugs in combination are very effective with genotype 3.

Lynn K · « **Reply #91 on:** December 10, 2014, 05:05:20 pm »

Hi Coach

I think you need a new doctor
Per the prescribing information sheet for Sovaldi

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

The recommended treatment regime for GT 3 is Sovaldi with Ribavirin for 24 weeks. you were on the currently recommend treatment per the American Association for the Study of Liver Diseases (AASLD)

http://www.hcvguidelines.org/sites/default/files/full_report.pdf

III. Genotype 3

Recommended regimen for treatment-naive patients with HCV genotype 3, regardless of eligibility for IFN therapy:
Daily sofosbuvir (400 mg) and weight-based RBV (1000 mg [<75 kg] to 1200 mg [≥75 kg]) for 24 weeks is recommended for treatment-naive patients with HCV genotype 3 infection.

The VALENCE study assessed the efficacy and safety of sofosbuvir (400 mg daily) plus RBV for 24 weeks in 250 treatment-naive (42%) and treatment-experienced (58%) subjects with HCV genotype 3 infection. The overall SVR12 was 84% and was higher among treatment-naive than treatment-experienced patients (93% versus 77%, respectively). These results suggest higher response rates can be achieved with a 24-week duration of sofosbuvir plus RBV than those reported for the 12- or 16-week durations studied in the FISSION (Lawitz, 2013b) (12 weeks, SVR12: 63%), POSITRON, (Jacobson, 2013c) (12 weeks, SVR 12: 61%) and FUSION (12 weeks, SVR12: 30%, 16 weeks, SVR12: 62%) trials. The primary reason for the higher SVR with extended therapy among treatment-naive patients was a reduction in the relapse rate from 40% to 5%. In sub-analysis, response rates were similarly high among those with (n=45) and without (n=100) cirrhosis (92% and 93%, respectively).
Alternative regimens for treatment-naive patients with genotype 3 who are eligible to receive IFN.
Daily sofosbuvir (400 mg) and weight-based RBV (1000 mg [<75 kg] to 1200 mg [≥75 kg]) plus weekly PEG for 12 weeks is an acceptable regimen for IFN-eligible persons with HCV genotype 3.
Rating: Class IIa, Level A
The combination of sofosbuvir plus PEG/RBV has been evaluated in patients with genotype 3 infection. In 2 phase 2 clinical trials, PROTON and ELECTRON, 38 of 39 (97%) treatment-naive patients with genotype 3 infection achieved SVR with sofosbuvir plus PEG (4 to 12 weeks of therapy)/RBV. (Gane, 2013b) For many patients with genotype 3, the adverse effects and increased monitoring requirements of PEG make this less acceptable than the recommended regimen of sofosbuvir plus weight-based RBV.

So sorry to read about your relapse. I am genotype 1a and relapsed after 12 weeks Sovaldi Olysio but for me the recommendation has been changed because I have cirrhosis to 24 weeks Sov oly. So I am now on 24 weeks of Harvoni which I believe they are studying if that can be effective in GT 3 as well.

At least while you were treating your liver was not under attack from the hepatitis c virus so the clock was stopped on your liver damage.

There are new treatments coming soon that will give you all another shot at this disease.

Best to you all
Lynn

Coach · « **Reply #92 on:** December 10, 2014, 10:16:34 pm »

Not sure if I follow ..I need a new doctor.. I was on sol/riba for 24 weeks. for gt 3.

Lynn K · « **Reply #93 on:** December 10, 2014, 10:23:04 pm »

I was going by your remark
"Now Doc tells me they don't prescribe sol/rib for gt3 ."

Which is not correct sol rib 24 weeks is per prescription and the AASLD guidelines.

So I am under the impression based on your remark that your doctor is not up to speed on current treatments

Coach · « **Reply #94 on:** December 10, 2014, 10:36:22 pm »

OK..I actually went to a new specialist in liver disease (a new doc) last week and she told me they are no longer are prescribing the sol/riba for gt3.. ?? So I have a gastro and a liver specialist to try and figure the next step out.. I will be my own advocate to educate myself .. So any thoughts or info you have is greatly appreciated..

Lynn K · « **Reply #95 on:** December 10, 2014, 11:03:49 pm »

Well I don't know as much about GT3 just what I read in the AASLD which is going to be revised soon based on the Confeence in October and newly approved treatments. Sov riba is good for GT 3 but maybe something better is coming that your docs know about from the conference

Anyway good luck fellow traveler
Lynn

DesertGuy · « **Reply #96 on:** December 11, 2014, 07:26:23 am »

Please--tell my what your doc said is the reason they are no longer prescribing sol/Rib----------is this just that office or were they told by the drug co?
I really want to hear.

Coach · « **Reply #97 on:** December 11, 2014, 08:31:04 am »

I am not sure. She said we no longer prescribe sol/rib for gt 3..I'll try to find out..I guess it's just not working anywhere near the 70-80-90% they claimed in the Valence study..

rainbowray · « **Reply #98 on:** December 11, 2014, 11:40:44 am »

Hey DesertGuy,
Hope all is fine, We are completing the ordeal, I took my final blood draw and will see the Doc. on Dec. 18. It really is a useless visit as being undetected should be a no brainer. It is 12 weeks from now that is crucial. I feel for you cause the 24 weeks is brutal, and Gen 3 is now the scarey one. I thought at the beginning of treatment my Gen 1B was some gamble but it turns out Gen 3 is now the old Gen 1. I am praying we both get the cure anyway, but I hear you!! Why give a treatment when other treatments known are better ? Makes you wonder what the reason. Is the medical
field ignorant, shouldn't be. Maybe we are ignorant to listen to some of them. I have my doubts about incentives that some drug companies present for prescribing certain drugs. I have my doubts about the FDA too. It is reason of concern.
But don't let the effects of the Ribavirin defeat you now, get cleaned up and take care of yourself while waiting out the next 3 months, and keep your faith.

DesertGuy · « **Reply #99 on:** December 11, 2014, 02:07:57 pm »

Rainbo--yep almost done--I wish I could have my blood draw before my last visit which is next week. My doctor is so lame I will have the blood drawn after I see him--next week I will get the results from last month.
So my plan is to see him--get the draw--and then request all of my records a week later and never go back to this guy.
Yep--no brainer on being undetectable at this point--have taken enough drugs to have wiped me out both mentally and physically, so I'm sure the virus is knoked down now.
So hopefully my brain will clear enough to attempt to re-join society soon. Yes I plan to mellow out--turn my records over to the V A and let them monitor me.
Another treatment if I relapse--I doubt it--face it I have had cirrrohsis I know of since 2006--hep c 1986. I just turned 60 last weekend and if I recover close to what I was feeling like before the treatment, I think I will let it just take it's course. My liver will not heal at this point, and how I feel amounts to what I put in my body to feed it. I feel the treatment, even if I hold at undetectable, has taken some remaining time away from me. I can tell my heart condition has worsened and I don't know what else.
And I will be reading this and the others forums often, looking to see what has happened to the people using these super drugs. I don't know if you remember the new super pain killer Vioxx that came out in the 90's, well it is the reason I have a heart condition now, so I do have a history of believing what drug companies tell you. LOL.

rainbowray · « **Reply #100 on:** December 11, 2014, 02:22:36 pm »

DesertGuy,
If by chance you relapse, letting it take it's course is something you really need to think about. The Ribavirin is the damaging drug, in my opinion. So the Harvoni and
other combos for multiple genotypes have two direct acting agents that actually
break the virus RNA, not just stuff the reproduction like the 35 Year old ribavirin.
If I relapse I will try again. Nothing could be worse than the ribavirin side effects.
Also, the end stage effects of advanced Hepc can be compared as 4-10 times worse
than ribavirin. Hope you get cured, but think about plan B just in case.

BattleTheBeast · « **Reply #101 on:** December 11, 2014, 04:39:44 pm »

DesertGuy,

I am not religious but this Hep C thing has made me pray more than I ever did the previous 55 years of my life. I am praying for you not to relapse, you have been through so much and deserve a break.

It sucks so much to be sick, I am so sick of being sick. I barely leave my house, I am totally isolating, this needs to stop but I can't make it. I just keep hoping that somehow when this evil is outside of my body I won't feel so yuck and may want to re-enter the human race.

Anyway I am thinking about you and saying a prayer for you.

Mel~

DesertGuy · « **Reply #102 on:** December 11, 2014, 05:47:39 pm »

Hey guys--Thanks, and I understand it all---sure none of us are rushing to that day we check out, but at sometime also you just need to step back and look at a calendar. these are the things I see
How old are you?---How long do people in your family live?--Where are you in that chart?-----next -How do you feel?--Are you getting worse day by day?--Does letting someone beat you with a stick for 6 months make you feel better?
This Riba has made me think about a lot of deep thoughts. My wife has a very strong faith and I feel also. But in my life about 45 years ago I started pulling my own chain--up until 24 weeks ago. Then I put myself ( not knowing what was going to happen) in the hands of a stranger. I'm not a fatalist--I sure hope that in 6 months I am still undetectable. That is why I did this!!!!! . But also in 6 months if I am back to the person I was 6 months ago and the virus comes back, when the doctor (excuse me--DOPE DEALER ) waves his newest product under my nose, I'm not going to be so quick to take it.

BattleTheBeast · « **Reply #103 on:** December 11, 2014, 05:54:28 pm »

Quote from: DesertGuy on December 11, 2014, 05:47:39 pm

Hey guys--Thanks, and I understand it all---sure none of us are rushing to that day we check out, but at sometime also you just need to step back and look at a calendar. these are the things I see
How old are you?---How long do people in your family live?--Where are you in that chart?-----next -How do you feel?--Are you getting worse day by day?--Does letting someone beat you with a stick for 6 months make you feel better?
This Riba has made me think about a lot of deep thoughts. My wife has a very strong faith and I feel also. But in my life about 45 years ago I started pulling my own chain--up until 24 weeks ago. Then I put myself ( not knowing what was going to happen) in the hands of a stranger. I'm not a fatalist--I sure hope that in 6 months I am still undetectable. That is why I did this!!!!! . But also in 6 months if I am back to the person I was 6 months ago and the virus comes back, when the doctor (excuse me--DOPE DEALER ) waves his newest product under my nose, I'm not going to be so quick to take it.

Hey DesertGuy,

I hear you, they come out with all of these drugs and we so badly want to get better that we believe. Sometimes it's better to let it be for a bit before jumping into the fire. Take me and Olysio; we were a really really bad match and I was in misery for 8 weeks but I stuck with it in hopes that I can beat this infection that has my liver cirrhotic.
Then I look at my grandson who had some chemical inbalances he was born with due to being born addicted to a multitude of substances and think about all the new fancy medications they used to "stabilize" him which instead made him angry and caused other nasty side effects. We went back to the old classics and he has been really stable and happy for over 4 years, even through puberty. Makes you want to just step back a bit.
I hope you win the battle this time and totally understand where you are coming from. I support whatever you choose to do and totally get it.

Mel

Mike · « **Reply #104 on:** December 11, 2014, 06:43:11 pm »

Hi DesertGuy,

I know that treatment can be an emotional rollercoaster.

But Remember: You are undectected, which is what you want at the end of treatment. You have an excellent chance beating HCV and the statistics on treatment efficacy for GT3 reflects this. You made it through treatment and the Ribavirin side effects will begin to disappear.

Simply put, your glass is more than halfway full!

Shake the negatives and focus on the positives.

Keep your chin up and know you have real hope for a cure!

Best, best wishes, Mike

zeena · « **Reply #105 on:** December 13, 2014, 10:37:21 pm »

desertguy
its been 3 weeks now since i stopped.and wow!! what a difference,i am less paranoid, not as angry and definatly not ragey.i sleep well, eat more,after 6 months of being unsure of who was in my body, this is a nice surprise. it will happen for you too.the last weeks were the hardest for me, it goes quickly. and good luck to you!! you live in natures lap, enjoy your treasures!!,

Coach · « **Reply #106 on:** January 15, 2015, 12:33:38 pm »

Got back BW 3 months after failing tx with sol/rib for gt3. It seems things have settled down after Flare up.. VL 2.1 million drop to 388000. AST from 126 drop to 51. ALT from 280 drop to 108. So these #s are encouraging, hopefully I won't have to rush into next tx.. Doing plenty of Milk thistle, green max and N=acetyl- cysteine in the mean time.. How are things going with YOU..

rainbowray · « **Reply #107 on:** January 15, 2015, 02:32:57 pm »

Yep,
I take my bloodwork today for 4 week post treatment. My friend who is cirrohtic failed this combo. 24 weeks and he is suffering with all kinds of effects. (1A)
I will find out in about a week the results for viral load. If I am detected, even
1 I will go immediatly into the Abbvie treatment, now it is suppose to be 100% for 1B. 94% for 1A. I am 1B. I just feel having a plan B is the thing to do.
Not giving in, sorry. I am not cirrotic, (yet)
And after being off 1 month, I still have bouts of fatigue, itching, rash. My P-Neuropothy has not improved. I still go to work everyday, but admit it has been a tough go.

Coach · « **Reply #108 on:** January 15, 2015, 04:09:25 pm »

I hope things work out for you.. As far as plan B there are some options for you.. Gt 3 has no options now and the ones that are coming are a couple of years away according to my Doctor...

DesertGuy · « **Reply #109 on:** January 15, 2015, 04:53:11 pm »

I take my 4 week bloodwork tomorrow also--and will also be a week or so before I hear back. I don't even want to think about being detectable now--gimme a break. Wait until 12 weeks out to knock me down again. I am just starting to get back to normal, less depression, stronger, less fatigue, and better bowel movements. I still have my fingers crossed because this is my first treatment and I did 24 weeks, that it will stick, but I can see that being cirrhotic has a much less chance of being cured. I'm not ready to start looking for another doc--won't go thru this again with the same one. Glad to see us ole-timers are still monitoring the forum, LOL.

rainbowray · « **Reply #110 on:** January 15, 2015, 08:13:44 pm »

DesertGuy,

If the 4 week is 0, the chances of it staying 0 are very high.

Long_Haul · « **Reply #111 on:** January 16, 2015, 10:16:17 am »

Best of Luck DesertGuy. I hope your results are UNDETECTED!
(I'm an old guy at 66, do I qualify as old enough?) :^)
AL

kimharvest · « **Reply #112 on:** April 23, 2015, 12:24:00 am »

GT - 3a: I just started my 2nd half of Sovaldi and Ribavirin, starting month 4. My one month viral load test showed no detection from 10,000,000. They cancelled my 3 month viral reading. I did this week start showing macrocytosis, enlarging of red blood cells. Anyone have that? Is that the same as anemia? Hopefully just a B12 thing. Need to take more blood tests now. Missed two doses last month, getting harder every month. Never planned on going 6 months. But if that is what it takes... Anything to rid myself of this. Will be MOST unhappy if this fails like I am hearing for 3a. I also have had tinging in points around my face along with sensitivity over my scalp and hair follicles. Very tired. Just trying to not stress out about anything but everything gets on my nerves.

rainbowray · « **Reply #113 on:** April 23, 2015, 01:23:38 am »

kimharvest,

I read that macrocytosis can be caused by hypothyroid, and ribavirin can cause thyroid damage. Also severe anemia can cause it also, and ribavirin is known for that. Stay on top of this, you can reduce the dose of ribavirin as a precaution. Ask your doc, I would not hesitate to get answers on this right away.

Coach · « **Reply #114 on:** January 04, 2017, 01:07:53 pm »

Failed solrib over a year ago. Thinking of trying new tx for gt3a. Looking at Epclusa . Looking for other options?? Meeting with Doc next week.. Seems like pretty bad sides from most Epclusa patients?? Any good new on it??

andrew90 · « **Reply #115 on:** January 04, 2017, 01:24:17 pm »

zero sides for me with Epclusa

hoping im Undetected by EOT was still detected by 5 weeks in but from 6.4 million to 35 so huge drop.!

Coach · « **Reply #116 on:** January 04, 2017, 01:36:45 pm »

Hope it continues to drop and go well for you.. Good to hear sides are not bad for all. I guess thats why my Doc tells me not to read the blogs , but I do anyway..

andrew90 · « **Reply #117 on:** January 04, 2017, 02:08:06 pm »

Yeah after reading these blogs i did not want to take Harvoni at all.. i was scared.

Epclusa was newer and i did not read much "bad" so it made taking this drug less stressful and without Symptoms i have no worries at all. i had a day or so of headaches and that was the worst side effect.

Lynn K · « **Reply #118 on:** January 04, 2017, 08:10:59 pm »

It is not uncommon for people who have problems would want to vent their issues while those who did not have any problems often remain silent and don't go to forums to complain when they had nothing to complain about. So the tendency is that problems often get overrepresented online.

While unfortunately a few folks do seem have problems it is yet to be determined if their problems were from treatment or possibly coincidently another health problem arose while they were on treatment. Another possibly their treatment may have activated or reactivated a preexisting problem they may have already had. But not much has been proven at this point as to the underlying cause. Still of course something that we should bear in mind for ourselves as a remote possibility.

The clinical trial data with admittedly a limited number of people who participated most people only experienced mild to no side effects.

Coach · « **Reply #119 on:** January 04, 2017, 09:59:50 pm »

True and that is why the Docs tell you not to read the blogs, but I have to get as much info as possible before starting tx. Is there anyway to find out how this first wave of people on Epclusa are doing?? I think I went into Sol/Rib to fast and its was found not to be very successful on gt3a.. Don't want to be a guiena pig again??

Lynn K · « **Reply #120 on:** January 04, 2017, 10:37:00 pm »

http://www.epclusainfo.com

"In clinical studies, EPCLUSA had high overall cure rates of 99% for genotype 2 (GT2) patients and 95% for genotype 3 (GT3) patients†. EPCLUSA was also found to be highly effective in patients with GT1, GT4, GT5, and GT6, with overall cure rates ranging from 97–100%.

Cure means the Hep C virus is not detected in the blood when measured three months after treatment is completed."

For GT3 treatment for 24 weeks of Sovaldi plus Ribavirin was rated at 93% in clinical trails. So nothing in life is guaranteed but your odds are better this time around and no ribavirin needed.

elias · « **Reply #121 on:** January 04, 2017, 11:43:19 pm »

Quote

Failed solrib over a year ago. Thinking of trying new tx for gt3a. Looking at Epclusa . Looking for other options?? Meeting with Doc next week.. Seems like pretty bad sides from most Epclusa patients?? Any good new on it??

The good news is most have mild side effects on Epclusa.

Epclusa might well have the highest SVR rates of whats available now. There are even better meds awaiting FDA approval specifically for "salvage therapy": meaning re-treatment after DAA failure. For those with low fibrosis score who failed earlier DAA treatment, might be worth waiting for those..

In my case, i did/do have some pretty harsh side-effects on Epclusa. But as Lynn says, it may have exacerbated a pre-existing sleep issue. I was having this horrid side effect, a week or so before having taken my first pill. Really odd?

Coach · « **Reply #122 on:** January 05, 2017, 11:09:36 am »

Thanks Lynn K and Elias for your responses. What tx are coming in the near future. Trying to figure out if I should go with Epclusa or see what comes up next. My #s and sono's have been good, feeling great. Things did get better even though I failed the sol/rib tx. Any info is greatly appreciated. Meeting with Doc next week . Gotta do my homework..

elias · « **Reply #123 on:** January 05, 2017, 02:08:07 pm »

Hi there Coach:

The two regimens I had in mind were:

Sof/Vel/Vox by Gilead Sciences, which is a combination of Epclusa+Voxilaprevir. Gilead specifically researched this combo as a salvage treatment. Seems it succeeded in that role. But they failed to show it can be used for shorter periods than the 12 weeks of Epclusa for treatment naive

Glecaprevir/Pibrentasvir (G/P) by AbbVie

This was thoroughly researched in several Phase III studies. Very high success rates in re-treatment of DAA failures. It even outdid Gilead's Sof/Vel/Vox in that the 8 week regimen for treatment naive had very high SVR-12 rates.

Both of the above are now awaiting FDA approval and were granted breakthrough status. A third regimen yet is not far behind.

You can hear quite a bit of details on these in this symposium based on AASLD review by experts in this field. It may help decide. The first half of this deals with re-treatments. There's long intro which you can skip:

http://hosted.medipix.com/aasld2016/

I'm not clear what your and fibrosis/cirrhosis status is? Might be determinative factor in choosing. Also hard to say how insurance works with re-treatment approvals. But would be good to discuss those two new approaches with yhour doctor. He might have some idea as to how long it'll be for FDA approval and odds of getting it insurance approved if its not yet in their formularies

Coach · « **Reply #124 on:** January 05, 2017, 05:37:20 pm »

Not really sure about fibrosis. I go for sono every6 months and no fatty liver it looks clean is what they tell me.

But they did say no scarring. I'm actually looking for a tx for 8 weeks. If that exists for 3a who failed tx. I saw sof/Vel plus gs 9857 for 8 weeks. Keep me posted on any info u have . Thanks.

elias · « **Reply #125 on:** January 05, 2017, 08:18:54 pm »

Hi again Coach:

Quote

Not really sure about fibrosis. I go for sono every6 months and no fatty liver it looks clean is what they tell me. But they did say no scarring.

Does this mean you are F0? (=no fibrosis)?

If so, it gives u some time to sort it out...I'd ask for an F-level if I were you just to be sure..

Quote

If that exists for 3a who failed tx. I saw sof/Vel plus gs 9857 for 8 weeks. Keep me posted on any info u have

Yes, that is Gilead's Sof/Vel/Vox I mentioned earlier . That GS- drug has now been given a name: "Voxilaprevir" and this triplet combo is now awaiting FDA approval.

The 8-week regimen was for treatment naive. I think. And it was no better than the 12 week Epclusa regimen. Actually, Epclusa 12 weeks did slightly better than this new Sof/Vel/Vox 8 weeks. The strength of the Sof/Vel/Vox was more in terms of its re-treatment potential than in shortening the tx duration.

The AbbVie Glecaprevir/Pibrentasvir (G/P) did better in 8 weeks. So if 8 weeks-rather than 12- is of very high importance..this might be worth looking into further

I'd go through that CME Symposium carefully (the first half of it anyhow) if I were you to get clearer details on all this. For example, when they say prior "treatment failure" what treatment regimens r they referring to? And if that includes Sof/Ribavirin combo...etc..:

http://hosted.medipix.com/aasld2016/

Its still based on unpublished releases and posters, so its not yet peer-review published data. I gather that in addition to this CME symposium, it was presented at the November 2016 Liver Meeting

Basic point here is. Pretty much all treatment failures can now be salvaged. But important to get the right one based on all considerations such as GT, Fibrosis level, RAV's ..etc.. And of course, unfortunately insurance coverage for re-treatment and "non-formulary" might be a major limiting factor. Hopefully, it won't

Coach · « **Reply #126 on:** January 05, 2017, 09:36:26 pm »

Thanks for the Help Elias, I have some research to do..What is an F-level?? I hope its not a biopsy.

elias · « **Reply #127 on:** January 05, 2017, 09:54:25 pm »

No, its not a biopsy. nor does it require one. It's a score from 0-4 which tells degree of fibrosis and if cirrhosis is present. They probably gave u such a score already since u did get Sovaldi in the past. Unless u have cirrhosis treatments are pretty much the same. Reason I asked was in terms of having time to wait until the more powerful re-treatment drugs are approved. Epclusa is already powerful in terms of success with SRV and was specifically tested for GT2 and GT 3, but I dont know if it was studied in terms of treating those who failed Sof/Riba on GT3. There is no 8 week protocol AFAIK with Epclusa. So far as I know, those in the Phase III trials of Epclusa who were "treatment experienced" had been treated by some interferon-based regimen

Coach · « **Reply #128 on:** January 05, 2017, 10:06:37 pm »

Thanks again Elias.

elias · « **Reply #129 on:** January 05, 2017, 10:10:35 pm »

Good luck, Coach. And please keep us posted as to how it goes in that meeting with the dr. Good news is that pretty much everyone is now curable. Proper choosing of the meds and access to them will be the major issues

Gaj · « **Reply #130 on:** January 05, 2017, 10:40:35 pm »

Hi Coach,

Lots of good information there from Elias.

F-score or Fibrosis level use to be a biopsy procedure but these days there are non intrusive tests such as fibroscan (similar to an ultrasound) or blood tests available. I suspect you will already have been tested and have the results on your file.
As you have only treated with Sofosbuvir and riba you won't have an acquired NS5a resistance which potentially opens up opportunities with current treatments that do include a NS5a active drug. Whatever you use I think your doctor will want you to treat for a minimum of 12 weeks to give you the best chance of success on this attempt.

There are a couple of other options that are currently available to research and discuss with your doctor:

- Sofosbuvir + Daclacasvir - This is a currently AASLD recommended treatment but in your case for retreatment may require addition of riba.

- Zepatier + Sofosbuvir - This is a new combination of two medications that have each been available for a while although I understand it is already an approved treatment option for GT3s in Canada. The results of trials as presented at AASLD in Nov were excellent (96-97% even with cirrhosis) but would require "off-label" prescription so not sure how that would play out with insurance, etc. http://www.infohep.org/Grazoprevirelbasvir-sofosbuvir-highly-effective-for-hard-to-treat-genotype-3-hepatitis-C-patients/page/3099138/

Coach · « **Reply #131 on:** January 06, 2017, 10:11:49 am »

Hi Gaj, thanks for the info. I don't think I could do the rib again, I did it for 6 months and it definitely messed with my mind. What is the ALB in your test scores?? And also what is NS5a resistance .. Thanks for your help.

rainbowray · « **Reply #132 on:** January 06, 2017, 01:01:04 pm »

Well, It is over two years since Sol/riba treatment. I am not detected. My Liver pains from stage 3 are all but gone, just a few discomforts now and then on the liver. My neuropothy is still the same. Evidently nerve damage from autoimmune issue from Cryoglobunimia is not going to heal . The Cryo is still there also, although very mild.
So I guess I should count my blessings especially after knowing I had Heb C for 44 years before getting treatment.

Gaj · « **Reply #133 on:** January 06, 2017, 10:36:43 pm »

Hi Coach, I can understand your dislike of riba having done two 6 month tx with it. While it can give a bit of a boost when added to some of the other tx there are often other options which have less sides available these days. It is far cheaper than others though which I suspect is why it is often used but do listen to your specialists advice before making any decisions.

ALB is albumin which is a good overall indicator/predictor of liver health and low levels are associated with things like edema, low platelets, inflammation, etc. It should be 0.35 - 0.50 and mine has been low (down to 0.26) for a number of years so was very happy and started recording it when it bounced back up to normal range within 4 weeks of commencing tx and has thankfully stayed there with other results all gradually stabilising too.

In simple terms, NS5a is one of the protein sites used by HCV during its replication process. Some of the antivirals such as Ledipasvir, Daclatasvir and Velpatasvir attempt to target and inhibit or block that site in different ways so that the virus is unable to use it to replicate. But in certain cases the virus finds a way around these blocks and then is able to replicate and pass on that ability to its own replicas at which point it has acquired resistance. If that happens then the drug and possibly others in the same class become much less effective. As neither Ribavirin nor Sovaldi target the NS5a protein you (or more correctly the virus) will not have 'acquired' resistance to any of the relevant NS5a inhibiting medicines from your previous tx so have a wider range of choices available.

Coach · « **Reply #134 on:** January 12, 2017, 10:54:20 am »

Went to my gastro Doc today and he said Epclusa 12 weeks was the current recomendation for 3gta with failed sol/rib. I told him I was interested in epclusa +gs59857 for 6 or 8 weeks , but it is in trial and we will see how these come out. No F-score for me? He said I would have to go into the nyc for a fibroscan. All my other numbers are in the good range, so I am not looking to rush into tx. I have another appt with a hep specialist next month to see what she has to offer. Appreciate all the advice that has come this way and look forward to any more info that comes your way.

Coach · « **Reply #135 on:** January 12, 2017, 11:03:13 am »

Just to clarify the Epclusa +GS9857 is also called sofosbuvir/Velpatasvir + GS 9857 (Voxilaprevir) very confusing ..?

elias · « **Reply #136 on:** January 12, 2017, 03:40:27 pm »

The investigational drug Sof/Vel/Vox will likely be approved by FDA this year. It is Epclusa+ a third drug added to it: Velpatasvir. It has been studied specifically for treatment failures. As a salvage drug for those who failed DAA, I believe it's 12 week regimen that's optimal. You can hear the views of experts on this in the first part of this symposium:

http://hosted.medipix.com/aasld2016/

Hope your insurance would cover it , if that's the route you and your dr choose to go.I wouldnt try for an 8 week regiment where a 12 week is recommended.

Good luck and keep us posted

Coach · « **Reply #137 on:** January 12, 2017, 04:48:23 pm »

Hi Elias, I agree w/u I would do the recommended tx. I just saw something about it being a 6 or 8 week tx. ? I want to put as little of these meds into me as possible.. Read something about companies making these regiments much longer then needed.. LMK if u get any relevent info..Also I flunked sol/riba not a DAA is there a difference. Maybe this isn't for me?? Thanks

elias · « **Reply #138 on:** January 12, 2017, 04:57:31 pm »

The studies looked into shorter treatment duration and found them to be lacking. Epclusa 12 weeks did better than Sof/Vel/Vox 8 weeks. It is not recommended as a salvage regimen.

PS: Sofosbuvir (Sovaldi) is a DAA

Coach · « **Reply #139 on:** January 13, 2017, 03:45:07 am »

Which is recommended as a "salvage" treatment , which i assume I am? The Epclusa or the new combo for 12 weeks.

elias · « **Reply #140 on:** January 13, 2017, 10:10:22 am »

Hi Coach;

That new combo. But that does not at all mean Epclusa wont do the trick, since it does have a higher success rate than does Sof/Ribavirin. I just dont think its been tested specifically for this

I'm basing much of what I'm saying on that symposium webcast along with the charts it provides. It does speak of 3 new salvage regimens, two of which have already applied for FDA approval. Worth listening to it.

Coach · « **Reply #141 on:** January 14, 2017, 10:15:55 am »

Thanks Elias, going to a Hep specialist feb. 7 so I'll see what she has to say.

Coach · « **Reply #142 on:** February 07, 2017, 12:29:37 pm »

Got back from the Hep specialist. She strongly recommended the Epclusa for my Gt 3 and having failed Sol/Rib previously. I asked about the sol/vol/vex and she said I would have problems getting it since I didn't try this first ?? So before I change my mind I think I am going to start with this.. Will keep you posted.

Coach · « **Reply #143 on:** February 16, 2017, 09:38:11 am »

Failed sol/Rib my #s are good. Having trouble deciding between waiting for Sol/v/v or doing Epclusa now. Docs say do Epclusa and if it fails you can try the other combo when it is available. That just sounds like a protocol to me. Also they said I would have to do Epclusa first and fail to get sol/v/v approved. ?? My head is spinning on which way to go ..Treat now or wait??

elias · « **Reply #144 on:** February 16, 2017, 01:39:12 pm »

Quote

if it fails you can try the other combo when it is available. That just sounds like a protocol to me. Also they said I would have to do Epclusa first and fail to get sol/v/v approved. ?? My head is spinning on which way to go ..Treat now or wait??

I'd say to treat now. You do not have cirrhosis. The Astral-3 trials with Epclusa showed it to have 97% success rate for GT3 without cirrhosis:

Quote

Among patients
who received sofosbuvir–velpatasvir, the rate of
sustained virologic response was 91% among
those with cirrhosis, as compared with 97%
among those without cirrhosis."
==============

This article was published on November 17,
2015, at NEJM.org.
N Engl J Med 2015;373:2608-17.

The sof/vel/vox triplet is not yet approved. And it probably is the case that insurance will want you to have gone through Epclusa first , because it has been researched as a "salvage" treatment. Listen to that podcast I posted the link to above:

http://hosted.medipix.com/aasld2016/

Discussion of Sof/Vel/Vox in first half..

Might help to clarify a bit.

Yeah, some of this might come down to "protocol" but insurance does wield lots of power in this.

Coach · « **Reply #145 on:** February 16, 2017, 02:16:35 pm »

Thanks for your thoughts. Will definitely check out video.

lporterrn · « **Reply #146 on:** February 20, 2017, 12:56:32 pm »

Hi Coach,
Would you mind saying more about your reservations? I am curious as to why you wouldn't go ahead with the suggested treatment?

Coach · « **Reply #147 on:** February 20, 2017, 01:37:46 pm »

It seems that the Sol/Rib tx was not what they said it would be. Then all of a sudden it's not being used for gt3 anymore. Now the Epclusa is supposed to be the one yet they have another one sol/vol/vex coming down the line. In 1996 or so a Doc was straight with me about the interfeuron tx for 18 months. He said it is protocol that they recommend it, but chances of success were not very good. He told me to wait and only do it if my # s went up. Another Doc told me I'd be dead in 2 years if I didn't do the interfeuron. So I guess I am a little skeptical about Docs Drug Co. etc. Also I've been reading stuff about the new drugs causing cancer?? I value your opinion and I am leaning heavily to starting Epclusa this week. What do you think???

Coach · « **Reply #148 on:** February 23, 2017, 12:29:41 pm »

I decided to do the Epclusa. The insurance company told my Doc. that since I failed once with Sol/Rib I would have to do Epclusa and Ribavarin?? Not going to do Riba again. Both docs told me just the Epclusa originally.. Not sure what is going on but will wait for the next drug ? Sol'Vol/Vex ?? has anyone else had this situation..

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