Hep C since Infancy

[RiRiRo]

This is my first post on this board/forum. I discovered it while doing google searches to help answer some of the ten thousand questions I have.

I have had Hep C since I was an infant. I was born premature in 1980 and had a few blood transfusions and surgeries. It is believed that is when I contracted Hep C. My mother was officially told of my  Hep C diagnosis when I was 4 and was hospitalized for meningitis.

Anyhow, years later, at age 32, after a routine physical/blood test my general physician calls to tell me there's something fishy about my blood work and wants more extensive work done. I go back in. It comes out as my having Hep C.

I call my mother crying asking "how did this happen I don't even drink or smoke!" To which she relies "you've always had this. We don't know how you got it. We think it was from a blood transfusion."

Long story short, I went to a gastroenterologist, and I am now in Day 27 of Sovaldi and Ribavirin. It is a 90-day treatment.

I went in for my four week since treatment blood work appt today and I was told it was "gone" and there was no viral load detected. My liver fibrosis was "perfect and normal showing no anomalities."

I am to continue the Sovaldi and Rivavirin for the remainder of the two month treatment and go back in after those two months for more blood work.

I have an array of mixed and confused emotions surrounding the entire situation.

However, right now my main concern is my body's reactions to the medication. I've had serious anxiety/panic attacks and insomnia. Then there's the fatigue. I feel like there are days I don't even have the energy to get up and make something to eat.


I was wondering if anyone else was having similar side effects with Sovaldi and Ribavirin.

I apologize in advance for the lack of cohesiveness in my post, but that seems another side effect of the medication. I can't seem to properly organize my thoughts. I'm forgetful and absent minded, which in turn increases my anxiety since I am generally a very well organized person.

[AussieRosa]

Hi, RiRiRo. Welcome to the forum. I found ribavirin increased my anxiety levels. I also had some strange brain glitch moments, one of which was completely forgetting the number of my apartment where I've lived for 17 years. Rest assured, these symptoms will go away when you finish treatment. As far as I was concerned, it was a small price to pay for being cured of this insidious disease. Wishing you all the best for the rest of your treatment and SVR.

[its time]

hi ririro
raney I believe is on same treatment... mayb reading post there could b of some help???

[Philadelphia]

Hi RiRi Ro, the riba is probably responsible for making you tired and fatigued. It depletes your haemoglobin so there's not as much oxygen getting round your system. I found there were days when I couldn't move my legs without great effort. I had to reduce the amount of riba I was taking for other reasons and it made a huge difference to my energy levels.

I never suffered anxiety or insomnia but I have heard other people say that have. You might want to concentrate on the knowledge that these drugs are going to help you feel better in the long run, it might help you feel better about them. I couldn't afford to be ambivalent about them, they were saving my life so I embraced them, down sides and all. You aren't as sick as I was so you have room to dislike them more!

All the best for treatment, everyone here has had some experience with these drugs, it's a great place to come for help.

[KimInTheForest]

Welcome RiRiRo! Congrats on starting treatment and reaching "undetected"! You are, in all likelihood, on your way to be cured permanently. And that is the important thing to keep in mind when you are struggling with the side effects. I didn't have anxiety or panic attacks on my 12 weeks of Harvoni+ribavirin. But I had massive insomnia and also big anemia, which causes the fatigue. I also had a lot of extreme emotions (anger, weepiness). These are all the hallmarks of ribavirin treatment. In fact, there is the phrase "riba rage" to describe unnatural outbursts of anger that can occur.

It is very important on ribavirin that your bloodwork is taken & monitored every 2-4 weeks to make sure your anemia is not dipping to a dangerous level. Ribavirin causes hemolytic anemia in many/most people. It is a temporary effect, but you want to be sure your red blood cells and hemoglobin don't dip too low. If they do, then the customary approach is to reduce your ribavirin. You cannot eliminate the ribavirin altogether. The sovaldi won't work on its own. But doctors will usually reduce the dosage if the anemia is too great.

Are you getting blood tests done with enough frequency to monitor that aspect of the treatment properly?

all the best,
kim

[RiRiRo]

Hi, RiRiRo. Welcome to the forum. I found ribavirin increased my anxiety levels. I also had some strange brain glitch moments, one of which was completely forgetting the number of my apartment where I've lived for 17 years. Rest assured, these symptoms will go away when you finish treatment. As far as I was concerned, it was a small price to pay for being cured of this insidious disease. Wishing you all the best for the rest of your treatment and SVR.

^^
Thank you for your reply! It has helped eased some of my insane worry that perhaps I was responding rather negatively to treatment. Yes, I do have to start doing some positive reframing and think of it as small prices to pay for getting rid of this disease--so thank you for that reminder!

[RiRiRo]

Welcome RiRiRo! Congrats on starting treatment and reaching "undetected"! You are, in all likelihood, on your way to be cured permanently. And that is the important thing to keep in mind when you are struggling with the side effects. I didn't have anxiety or panic attacks on my 12 weeks of Harvoni+ribavirin. But I had massive insomnia and also big anemia, which causes the fatigue. I also had a lot of extreme emotions (anger, weepiness). These are all the hallmarks of ribavirin treatment. In fact, there is the phrase "riba rage" to describe unnatural outbursts of anger that can occur.

It is very important on ribavirin that your bloodwork is taken & monitored every 2-4 weeks to make sure your anemia is not dipping to a dangerous level. Ribavirin causes hemolytic anemia in many/most people. It is a temporary effect, but you want to be sure your red blood cells and hemoglobin don't dip too low. If they do, then the customary approach is to reduce your ribavirin. You cannot eliminate the ribavirin altogether. The sovaldi won't work on its own. But doctors will usually reduce the dosage if the anemia is too great.

Are you getting blood tests done with enough frequency to monitor that aspect of the treatment properly?

all the best,
kim

Hi Kim,

I am honestly so very ignorant on not only the disease itself but the treatment(s) as well. It all seemed like it happened so suddenly, and then of course there was the time span where I was too busy stuck in the denial stage. Whereby I rationalized in my brain "well, if my insurance is refusing to pay for this then it must not be so serious."

Denial was heavily administered. *sigh*

It is because of that, that I am so ignorant. Which is why I am grateful for this board and all your replies. I now have a list of questions to take back to my Gastro.

At my appointment this week, he didn't seem to urgent with my needing further bloodwork. He read my four week blood work said "everything looks great see you in two months" and that was it. I can see now that I will have to call back to ask to be checked for anemia as that may be the underlying cause of the fatigue.

Thank you for your reply. I will be sure to follow up with all the info you have given me. Thanks

[RiRiRo]

Hi RiRi Ro, the riba is probably responsible for making you tired and fatigued. It depletes your haemoglobin so there's not as much oxygen getting round your system. I found there were days when I couldn't move my legs without great effort. I had to reduce the amount of riba I was taking for other reasons and it made a huge difference to my energy levels.

I never suffered anxiety or insomnia but I have heard other people say that have. You might want to concentrate on the knowledge that these drugs are going to help you feel better in the long run, it might help you feel better about them. I couldn't afford to be ambivalent about them, they were saving my life so I embraced them, down sides and all. You aren't as sick as I was so you have room to dislike them more!

All the best for treatment, everyone here has had some experience with these drugs, it's a great place to come for help.

Thanks for your reply Philadelphia, I will have to look into the "riba rage" and dig through the forum some more for more info

[RiRiRo]

hi ririro
raney I believe is on same treatment... mayb reading post there could b of some help???

Thank you for pointing me in the direction of Raney's posts. I have found them and marked them to read them!

[Mike]

Hi RiRi Ro,

I completed 12 weeks of Sovaldi+Ribarivin+Interferon. I had previous experience with Ribv+Intf and started taking Paxil (10mg) about two weeks prior to starting treatment. It helped with the depression and anxiety.

There's not much you can do about the fatigue other than eat healthy and take naps. Your doctor should be monitoring your blood platelets and, in some cases, the Ribv can be decreased if your red blood cell count gets to low (low platelets  can cause fatigue and shortness of breath).

Drink lots of water.

Remember this is only 84 days and you've knocked 27 of those days off. The virus is now undetectable and next 54 days will ensure it stays that way!

Hang in there and best wishes, Mike