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Started Sovaldi and Ribivarin Today, July 21, 2014

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Posted 7/21/2014 11:05 PM (GMT 0)
Today I took my first dose of Sovaldi and Ribivarin. 12 weeks to go...

I have Hep C, Type 2 about 4.3 million units of virus
I've had the Hep C since I was 16 in 1966, so for most of my life but I've never drunk alcohol so my liver is in good shape. All of my blood and liver tests have always been within normal ranges and I have minimal damage to my liver. I'm 63 and pretty healthy.

According to what i have read on these blogs I don't expect any severe problems but I'm expecting to have fatigue, depression and irritability.

I'm going to try and keep exercising and riding a bike every day and eating right. I also will drink lots of water.
We'll see how it goes.

I'll try and post with news when I notice changes. Right now I've got a headache but it's only my first day and about 8 hours into the meds so it could just be stress.

I've had headaches for several years and hope that getting rid of the Hep C will help. I've tried everything, CPAP, allergy testing, drinking lots of water. They don't respond to anything but Imitrex but that is pretty strong and I don't like to take it. They could be stress related.

Hope this stuff works. Seems like it should. When I first learned about Hep C in 1990 I refused to take Interferon. Now that Sovaldi is here I'm confident it will work on me because my liver is in pretty good shape and I'm healthy.
Posted 7/21/2014 11:19 PM (GMT 0)
Welcome Rob. It sounds as though you are prepared for this journey. You are fortunate to never have used alcohol and done so well with this disease. I just finished 12 wks of riba/interferon/sovaldi last week and am waiting for viral load done on July 15. I hope you sail thru treatment with minimal side effects. Best of luck!
Posted 7/21/2014 11:52 PM (GMT 0)
Hi Rob, Welcome to the Hep forum! Glad you found us. My husband, themister, did the Interferon/Riba treatment, twice. It was barbaric stuff. These 12 week courses seem to be very tolerable. I see no reason you will not be able to continue biking. Make sure to drink 1/2 your body weight in oz of water, per day. Also, take some fat with the riba. A nut butter on a soda cracker, or toast, or avocado. You will do fine! Big Hugs, and again, Welcome.
Posted 7/25/2014 2:23 AM (GMT 0)
Hi Rob,

You started the same treatment that I finished the day before. I'll go for my SVR12 the day of your completion (10/13). I'm also G2, never treated. I also was infected as a kid and am looking forward to see who I'll be assuming I clear! I had a lot of fear going into treatment but breezed right through. I did have a fair amount of fatigue and a few rough nights of sleep but it was so much easier than I feared. I hope that for you.

I would only add one thing to the excellent advice you've gotten which is to eat regularly every few hours if possible. At the very least, 3 square meal with protein. It really helped stabilize me and it could help with headaches (assuming you don't have a regular meals).

Good luck, Hold Fast
Posted 7/26/2014 4:34 PM (GMT 0)
Thanks for the encouragement!
I am starting day 6. I had headaches the first two days but they are gone now.
I'm not sure if I have any other symptoms except sometimes it's hard to sleep.
So far so good.
Wishing everyone well!
Posted 7/30/2014 5:03 PM (GMT 0)
Day 10
Doing fine. No significant side effects. I'm wondering if they will kick in after 3 weeks?

I had my first labs and everything was still in the normal range for all of my labs. Some spikes in my Blood Differentials that are puzzling. I don't know what "monos auto%" are but they went from 7% to 14% since starting the meds. That is now at the upper limit of normal. Something must be happening because I can see distinct changes since my baseline blood work was done before starting.
Posted 8/1/2014 5:09 AM (GMT 0)
My Bilirubin took a sharp upward spike from the test after one week on Sovaldi and Ribavarin. Now it's at the upper limit of normal but you can see it went up sharply since I started the meds 11 days ago.

Anyone have similar reactions? If so, did it continue to rise and what effects if any did you notice?

I'm getting labs once a week. It will be interesting to see them next week. I'm still feeling well.
Posted 8/1/2014 7:14 AM (GMT 0)
Hi Rob,
My bili levels jumped up sharply then dropped down the third week. They are still above normal now but not as high as the second week. I just finished week 3 of (24 weeks.). Some of my other levels have changed too ( drop in hematocrit and hemoglobin and it sounds like they'll be keeping an eye on all this weekly. I'm just ten days ahead of you- good luck and keep us posted!
Plant
Posted 8/1/2014 10:04 PM (GMT 0)
Rob,

My 2 cents: It's expected to see your blood counts flucuate and/or swing throughout treatment with sovaldi and riba. But I tried to remember that it's just numbers on a sheet. I'm an analyzer but gave up trying to make sense of it all by the end. One thing I did discover is that there is an inverse relationship to components of the CBC, so when one is up the other will be down and vice versa. The way the riba kills the hemoglobin makes your bloodwork a bit like a house of cards. And no two people seem to react the same -- it' complicated.

I'm not telling you not to review your bloodwork as it's always good to be your doctor's second set of eyes just don't let it upset you if things seem odd.

The most important thing is that you feel well!! Take stock in that.

HF
Posted 8/2/2014 7:01 PM (GMT 0)
Hey RobV,
Congratulations on starting treatment!
You've been given an awesome gift in the opportunity to treat with this new drug and I'm sure you'll get the result that is expected :)
I am (*was*) also genotype 2 with similar RNA counts and just received results of SVR12 yesterday.
It doesn't get any easier than taking some pills for a few months.
Best of luck to you and stay strong!
Posted 8/5/2014 8:01 AM (GMT 0)
Hey Everybody,
Starting Week 3. Had labs today. Everything still within normal ranges. Some fatigue. I was really tired on Sunday and just lay around but it doesn't seem to be consistent. Today I am OK. It's a little hard getting up in the morning but I wake up and can't sleep after about 6-7 hours so I guess, all in all, I'm doing fine.

about the labs Hold Fast, I think you're right. I was expecting to see some jumps or spikes but haven't seen them. In fact, the readings are staying close together.

Good luck to all
Rob
Posted 8/13/2014 9:52 PM (GMT 0)
Hi Everyone,
I don't know if anyone is reading this. I've had few responses.

I'm in the middle of week 4. Starting to feel the fatigue and low energy. Labs are good, some anaemia but everything else is stable. Today I'm really dragging my butt. i got up at 8:30am to take meds and then went back to bed. No energy today.

Compared to others I feel like my health is better than most and that I should come out of this well. They will do a viral count next week I hope and after 4 weeks I expect to see the viral load down to near zero. We will see if I am right or not.

I guess the real test is after the 12 weeks will I snap back and have more energy or continue to have fatigue? I've read others on this forum who are struggling with that. My doc said it takes 6 months to get rid of the Ribivarin.

Time will tell. I hope I can get more energy. I need to be doing things. Fortunately I am retired and don't have a lot of obligations. I just don't like the low energy levels keeping me down.

Wishing health to all,
Rob
Posted 8/13/2014 10:12 PM (GMT 0)
Hey Rob, the low energy is unfortunately pretty common. I had to nap frequently which was very unusual for me, but it got me through. I've read the half life of ribavirin is 12 or 14 days, depending on the source. I hope you have several good or decent days in between the fatigue and do what you must to cope. Wishing you the best and keep us posted.
Posted 8/13/2014 10:15 PM (GMT 0)
Hi Pet Lover,
Yes I understand. I don't nap well but sometimes I have no energy like today.
I knew this could be a problem so it was no surprise.
Thanks
Rob
Posted 8/13/2014 10:31 PM (GMT 0)
Hello Rob,

Great to hear that your feeling pretty good. I just started today with Sov/Rib for 24 weeks. so far, so good.

Willy
Posted 8/14/2014 12:16 AM (GMT 0)
Rob I'm ending week five ( out of 24 weeks treatment)and am having low energy, weakness, etc. it's because the ribavirin lowers the RBC and hematocrit. I'm trying to just scale back, rest when I'm beat, and make some adjustments. I understand that this is just one of the side effects. I'm catching up on some good reading. I also take walks- just relaxing ones, not really pushing a hard pace. They feel good too, although I really miss running.
Best to you,
Plant
Posted 8/14/2014 12:39 AM (GMT 0)
Good Luck Willy!

Thanks Plant.
Posted 8/14/2014 1:14 AM (GMT 0)
I am reading your posts, Rob! And many people lurk but never post a reply. I hope to hear you have RVR at the week 4 VL. You hang in there and keep keeping on!...Big Hugs
Posted 8/14/2014 1:26 AM (GMT 0)
Ok Miz!
Thanks.

You might post a list of acronyms for the medically uneducated.... :-)
Posted 8/14/2014 2:20 AM (GMT 0)
We do tend to speak our own language around here, haha.

At the top of our forum there is a sticky called Hepatitis Resource's. I need to look closely at it tomorrow. I edited my post, but now see the stuff like ESLD (end stage liver disease) and HE (hepatic encephalopathy), SVR (sustained viral response) MELD (model for end stage liver disease) are part of my signature line!!

Thanks for the head's up. I will look into that. Big Hugs,
Posted 8/19/2014 10:20 PM (GMT 0)
I JUST GOT MY WEEK 3 VIRAL LOAD TEST RESULTS!

UNDETECTABLE!! (less than 15)

That's pretty good for only 3 weeks of meds. I was expecting as much. It's great news. I had 4.3M units at baseline prior to treatment.

Some low energy, fatigue but very few other problems.

I've started Week 5 now. Next viral load test will be after week 7. I'll expect the same results. I'm eating well and keeping busy.

https://www.healingwell.com/community/emoticons/turn.gif

I wish you all well!
Posted 8/19/2014 11:39 PM (GMT 0)
Congrats! UND means you're halfway there. Sounds like you are doing really well!
Posted 9/27/2014 11:55 PM (GMT 0)
That's great news Rob !
Posted 9/28/2014 12:18 AM (GMT 0)
Hi
Yes, thanks.
I've had viral tests at 3, 5 and 7 weeks. The last two showed no virus detected. The test at 3 weeks showed 43 units down from 4.3million.

I'll start the last 2 weeks of meds on Monday.

The fatigue and other side effects have taken a big toll but the end is in sight. I think I'm a lot better off than many other people.

I'm done with the docs and nurses. They have decided that I don't need to return to see them except for lab tests for viral counts at the end of treatment and then at 3 and 6 months after.

I'm certain that it's been wiped out. Having been trained as an engineer I know they always have a safety factor, usually 150% - 200% doses to assure no residual reoccurrence. In my case I'm certain it's not necessary any longer and I'm sure I could have stopped meds sooner but the system does not allow for individual analysis to support that so I'll follow the plan.

I'm not sure which is worse the Ribavirin (I suspect) or the Sovaldi but once they get more data next year I'm sure we'll see these treatment plans modified and reduced in some cases.

The cost factor will help to reduce the treatment time once they get more data.

So I'm pretty much done. I'm certain I'll be virus free as I am now.

Hope everyone else has great success and good results.
Rob
Posted 9/28/2014 12:57 AM (GMT 0)
Nice report! Love the engineer analysis. But still, really happy you will follow the plan *wink*. Riba is rather nasty with sides. I hope you will post as you get future labs. Take good care. Big Hugs
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