Hep C Discussion Forum

Cinnamon Girl · Guru

RE: Newly diagnosed Hep C 3A, starting Sovaldi/Ribavirin

Miss Cara · Member

I posted this in the "Hey" Everybody on Sovaldi + Ribavirin!!!! topic, but I'm not sure if you all are on there, so...

big news....just got our labs back and WE ARE BOTH UNDETECTED! Also. No changes in the blood panels either, so no anemia or anything even starting to look out of whack!

Thank God for this, and many prayers for everyone enduring and fighting the same battle!!!!!

Miss Cara · Member

Thank you to all who have replied to me, I'm so grateful for all the effort and help! It had been a super long and trying week, but hubby's MRI came back as a benign hemangioma, nothing to worry about! Specialty pharmacy to ship this week, and then the battle begins.

I would like like to respond more to those who have written to me as soon as I have some spare time, but just wanted to say thank you in the mean time!

Mila · Member

I agree with what others have said about being absolutely compliant; I set double alarms for my meds (the first is to get something to eat, and the second to take the pills.) Then I also have a friend text to make sure...

I also find that drinking a LOT of fluids is critical to feeling better. However, another post here warns of how extremely dangerous water intoxication is so please also be aware that there is always too much of a good thing.

Bloomster · Senior Member

Hi Cara - welcome to the forum!

I second what Mallani (Malcolm) said about the haemangioma. Before my husband had treatment, this showed up and they thought he may have had bowel cancer, and the cancer had spread to the liver. Our world turned upside down for a few months and it did not help that one of my husband's colleagues was terminally ill with bowel cancer at the time. In any case, hubby had a colonoscopy which was clear (thank God) and also more scans on his liver (can't remember what one's in particular), but they came back and said it was effectively 'blood blisters' or haemangioma and that these don't pose a problem.

I didn't have Hep C, but I went through the whole process with my husband's 2nd try of treatment which was 48 weeks. I cannot lie - it was gruelling at times, but doable. If I can give any advice, just do everything to the letter. Set yourself up for success and make sure that all medication is take ritually. We set alarms on both our mobile phones as reminders for all medication. We didn't miss a beat the whole time and have been rewarded with SVR.

All the best as you and your husband go through your treatment and feel free to ask any question to help you get through. Caroline

Enavigo3891 · Senior Member

Hi Miss Cara,

What everyone else has said thus far is good info for you. I don't think I saw anyone explain the viral load to you; don't get caught up in this number until you start treatment. That number fluctuates daily. Your body creates like a billion HepC buggers every day and your immune system fights off what it can. The number itself does not indicate "how bad your HepC is" or "how sick you are" ... Some people here have very low VL's while others have several million. It's the other number, ALT's, AST's, etc that give you a more accurate idea of how well your liver is functioning. However once you start treatment, yes you will be watching your VL as of course the whole purpose of treatment is to stop the replication of the virus so a decreasing number suggests it's working and the ultimate goal is for it to be undetected.

As for symptoms while on treatment, Mila's statement was spot on - everyone is different. I am on the same treatment as Larry who also posted below - Riba + Sovaldi for 12 weeks. Now Larry is much further into the treatment than I (today is day 5 for me) but I have not yet had any sleeping difficulties. Granted that could change as the meds build up in my system but so far so good. I've had some mild headaches but noticed that if I increase my water intake they seem to go away. I have experienced the "morphine itch" which I call the "Vicodin itch" only because I personally have never taken morphine but I surmise its the same. Its occurred twice in 5 days, both times it was brief. No dry skin problems yet but i'm a perpetual lotion applying individual to begin with . The most serious side effect to be expected is as Mallani said - the anemia; but that's nothing you can monitor yourself, your doc will watch that with your blood draws.

I would say the most important thing on treatment is to be consistent and compliant. And don't let it get in your head too much, otherwise every little thing you feel or experience you'll be asking yourself, "oh no, is this a side effect". For example... I woke up really sore yesterday - briefly thought that very question but the answer was, no crazy lady, you're sore because you were shoveling yesterday! biggrin It's all about perception.

Good luck to you both and continue to post your questions here... everyone is friendly and willing to help!

Mila · Member

Hi Miss Cara!

I just gave you a much longer response to this same question in your comment under my Post... The answer is, in a nutshell, everybody is different and there is no way to predict how you or your hubby will feel. But, I believe, that even the worst-case-scenario is completely doable. I am no where near as active as Larry2384, but then I've not felt well enough to do much even prior to the Sovaldi + Ribavirin.

Absolutely agree about taking Ambien. A doctor actually taught me to crush it with my teeth and allow it to further dissolve under my tongue for as long as possible for maximum effectiveness. It knocks me out within 10 minutes max, sometimes right in front of the TV or even while typing mid-sente

SERIOUSLY! However, sometimes if I have distractions going on or try not to give into it for just a minute while I finish something, it won't work at all. So, the best thing is to be in bed fully prepared for sleep, turn everything off and just allow it to work. I do wake up sometimes about 4 hours later when it wears off, but am then groggy so find it fairly easy to get back to sleep again.

Oh, and do NOT eat for as long as possible prior to taking it. Which is difficult, since you must now eat every 12 hours with your meds! Thus, perhaps dissolving it under your tongue might be even more helpful?

mallani · Guru

Hi Cara

Welcome to the Forum. You guys are lucky to be approved for Sovaldi/Riba and should do well. Your Viral Load is very low, and hubby's is medium-high.

On Ultrasound, the commonest echogenic lesion is an haemangioma. These are common and of no significance. On MRI, they are easily distinguishable being hypointense on the T1 images and intensely hyperintense on the T2 images. Obviously, HCC must be excluded. These are usually hypoechoic on Ultrasound but may be echogenic. The MRI will readily distinguish this.

Side effects vary and you may have none. The Riba-induced anaemia is the most common, and your doctor will be watching for this. Cheers.

Larry2384 · Member

Miss Cara,

I can tell you this much from my own experience of taking sovaldi and ribavirin for 2 months now as part of a 90 treatment plan. The side effects haven't been too bad.

The biggest problem that I have had by far is the insomnia. I feel fine all day until I go to bed and then suddenly I realize that I can't shut it down and get restless with tossing and turning all night until I finally pass out long after the sun comes up. It takes very little to wake me up and can't go back to sleep. This has been the experience of others that I have talked to. The solution is to ask your doctor for a good sleeping pill like 10mg ambien and he will probably give to you as it is a common side effect. I have had a handful of nights when even the ambien doesn't get me to sleep. BTW, I have tried vigorous exercise regimens to wear myself down enough to sleep and though I may need ibuprofen to counteract the swelling from the exercise, it has no effect whatsoever on the insomnia and seems to only make it intensify.

Another common side effect is dry skin and what many describe as a morphine type itch. It is an itchy/scratchy/prickly feeling at times but not severe enough to cause any great discomfort. It isn't too bad at all and hardly worth mentioning but you will probably notice it at times.

Mostly though, one can tell the meds are in your system when you try to sleep at night but I have had little trouble during the day at all.

I can't help you much with your numbers except to share my own experience. I have gen 2b and acquired 40 years ago exactly. My viral load at the beginning of treatment was 1.6 million and after a month of treatment I was undetectable <15 and my liver functions are very good now. I am 75% through the treatment without any problems except the insomnia which is no fun but manageable with sleeping pills.

Since your treatment is twice as long as mine, it won't be any fun as the chemicals build up in your body, I suspect the skin will get dryer and dryer and it is a long time to combat insomnia but beats the alternative of interferon darts. On the plus side, I haven't had any limitations or restrictions on what I can or cant do and my diet is the same and I continue to play vigorous racquetball 2-3 times a week and hasn't effected my game at all. I haven't had any headaches, nausea, fatigue or anything of that nature and feel about the same as normal but I can tell you that I am ready to be done with this ASAP.

Keep me posted on your progress and will answer any questions that I can. There are others here more knowledgeable than me.

Sincerely,

Larry2384

Miss Cara · Member

My husband and I were both diagnosed in June of 2013 through our Primary Care Dr, and just got into a GI/Hep Specialist last week. Blood work, ultrasounds, exams, and...

...my liver is fine, Genotype 3A, viral load of 7,785.

...my husband has what they called an "echogenic lesion" on his liver and goes in for an MRI on Monday, Genotype 3A, viral load of 3,158,000.

We found out today that we are both approved for the 24 week Sovaldi/Ribavirin treatment, and feel pretty fortunate, although quite scared.

Can anyone help explain what we might be up against, and/or what we should expect, especially concerning my Husband? No one tells you with any sincerity what all the numbers mean, what it really is or could be that they saw on his liver ultrasound, or how we fill feel during this treatment.

Any help would be great!

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