Welcome Billy,

I’m not a doc so take my comments with a grain of salt, but my understanding is that the heart issues have mostly related to Sofosbuvir where patients with cardiac issues were already using amiodarone. The symptoms are a very slowed heart rate and the incidence seems to occur within about a week of commencing treatment so it doesn’t appear to be related to our own experiences. As you will have read from my post I experienced what I thought were cardiac issues and ended up in hospital with the same results as you in that they didn’t find anything. However that occurred in Feb and so well before I commenced treatment.
From what I’ve seen it does seem that these DAAs have more side effects in those of us with greater liver damage (noting you are F3/4) and we need to keep in mind that while hep c primarily impacts the liver, in those of us who have had it for a long time it does effect the rest of our body in various ways too. And although the meds knock out the virus quickly and that is seen in liver function recovery, it is going to take a while to heal other damage and some things may never fully repair. But at least with the virus gone and our livers working much better we can finally start that process.
And hey, I know a lot of people in their mid fifties without hep who couldn’t hope to paddle a board let alone stand and then lie down on it! :~}

But very wise advice for everyone to check any sides that really worry them with the experts and test for anything you are concerned about.
While these sides can be hard to handle they are nowhere near the old Peg/Riba for me but of course everybody seems to differ. But in my case my GP is happy so far, my basic bloods are good and I’m due at the clinic for a check on Thursday. Unfortunately my 4 week viral load results probably won’t be available till after Xmas (but hopefully before NY) but given the great results everyone else is getting around here I’m not too fussed and figure that worst case I will be undetected at 8 weeks anyway! I’ll definitely be trying for the full 24 weeks to really beat this and as my specialist said, worst case I can drop the riba and keep the sof/dac going.

If the riba question was to me, then the shipment was delayed and as the specialist said to try and take it for as long as possible but try for minimum 12 weeks, I decided to start the Sof/Dac asap and add the ribavarin when it arrived rather than wait. Impatient ol’ bastard that I am.

Hi Billy,

I’m sure that the effects you are feeling with go once you complete treatment. We all seem to be effected a little differently by the meds, some breeze through, others struggle as you will see when you look around here. Join in and ask questions, there’s lots of good information and understanding of what we are all going through together. After all we are sort of pioneers. We have a few good laughs too which is important. BTW are you supported/monitored by a clinic? Or going it alone?

Yeah, insomnia definitely won’t be helping and will only increase the symptoms you have. Are you taking anything for it?
If not have a talk with your clinic or GP about some mild tablets that won’t interact with the sof/dac. It can make a world of difference getting a reasonable nights sleep.
So far this time I have been sleeping okay, well six hours anyway, so haven’t needed anything but last treatment attempt I was a wreck until I spoke to the clinic about quitting and they gave me a script. I don’t normally like taking those sort of meds so only took a half tablet when I couldn’t get to sleep. But I always had a half sitting on the bedside table with water so if I woke during the night and couldn’t get back I would just have that. Having half tablets of the mildest version of Temazepam available was just enough to make me drowsy and sleep for at least a few hours usually. But only when I really needed them (probably 3 or 4 nights a week) which was enough to get me through the last 4 months with some sanity left.

G

Hi All,

I have that pumping sensation as if my body is imitating the heartbeat. Sometimes the pulsating migrates in ears too. I have concluded that it is a mis-coordination of vagus nerve which connect all the organs. Due to the damage of HCV on vagus nerve in liver and other parts, the signals get mixed. The signal of heartbeat may go to the musculature of intestine, whenever where vagus nerve goes.

Billy,

You can see from this thread a lot of variance in symptoms/sides both pre and during treatment. Your last post reminded me about ‘
LondonGirl’s post on the first page. I also get the phone effect sometimes.

Thanks G, I will look around here for sure, it’s always good to see whats going on with others and there are so many good news stories these days with the new DDAs. Ive spent a lot of time reading over the last year or so, trying to get a handle on whats happening out there, thats how I came across Greg Jefferys just as he was doing his India visit.

I am under a great hepatologist and nurse at a major hospital. I’m taking an Indian generic Sof, the Dac I qualified for through the hospital. It was looking like I would get the Sof through the hospital at one stage as well but good o’l Gilead pulled the plug on their compassionate access program before it even started. At least BMS and Abbvee have come through.

Funny you should say that about the half tabs of Temaz that you kept ready beside you for insomnia as I do exactly the same thing, though I often avoid them for too long trying to get back sleep by myself and then it becomes pointless when dawn is almost there. Plus I try not to do more than 3 nights in a row if I do take them and also skip night between if I can. I only really take them when desperate from being totally worn out. I have gone through stages of getting 5-6 hrs sleep some weeks and thats enough to get by but most of the time I have shockers where Im lucky to get an hr or two at the beginning and then its all over. When the palpitations are bad it’s almost impossible to sleep much even with half a temaz. I wont take more though as I leant my lesson a while back while traveling. I took a half or a whole 5mg every day for a month and ended up with withdrawals for a few months after and that wasn’t a nice experience. Its actually very similar to what I’m going through some days right now! Haha! Just got to roll with it I guess.

Bill