Allen's Sovaldi + Ribavirin Treatment Log

When we were at clinic yesterday they told us most common sides were

Nausea
Headache
Fatigue

But not horrible.

Good luck.

Carol

hi Allen and others treating with sovaldi. i did treatment 3 times and remember the dr ordering the pill that dissoves under your tongue. it is called zofran(odansetron is generic name) and is used for severe nausea from chemo therapy and related txs. it comes in 2 sizes (4 & 8mg). ask your dr, it can make things easier for you. ribavirin causes breakdown of red blood cells and can cause fatigue and shortness of breathe. just part of the tx. good luck to all. cant wait to see all of you cross the finish line, with SVR.
barry

hey Allen, drinking 3 liters of water and gatorade(electrolytes) daily has always been part of treatments past. hydration and otc pain relievers help side effects. between you and your dr staying on top of sides, you can eliminate the chances of stopping tx. side effects with DAAs(direct acting antivirals) usually subside to some degree after the virus becomess undetectable.

i had to use tylenol everyday of treatment for a year x3, and still made it to svr. As always we are not drs, so run everything by your dr.
barry

Hi Allen, just wondering how you are doing and if you'd care to share any lab results.

music

I actually don't go for another blood test until this Thursday and the only lab results I have asked for since then was my ALT as it was around 689 and recently it went down to 291 and that blood was taken February 6th the day I began my treatment. I'm not sure what other results to ask for that might tell me I am doing better?

I am pretty sure they will not do a viral load test here until the end of the 3 months, it seems when they do them you go in and take blood and then they do in batches and when I initially got it done it took about 2 weeks for results and they said my viral load was 4.7 million.

As for how I'm feeling? I have a huge amount of headaches in the same spot for days now...I am drinking plenty of water and eating well, sleeping as well as I can also but last night and tonight again these fricken headaches woke me up and then I can't go back to bed. Other than the headaches I am doing ok...a few times I still get the mild sickness feeling.

I'd be able to last three months with these headaches if I absolutely have too but have to say this isn't fun, first day or two their was no sign of this and then one day after working out it seemed I had a headache and it got worse and worse...would go to sleep and wake up and still have the headache?

Just for reference I rarely ever have headaches, honestly the only time I really would get them would be if I drank to much alcohol or something but I rarely drink that much the last few years so headaches are rare for me so I am pretty sure this is a side effect of the medications, I actually think its the Ribavirin because I get the headaches in the morning after waking up and if they go away at all during the day they end up returning it seems after I take my two Ribavirin pills at dinner.

I notice sometimes the headache just disappears for like 20 minutes and then all of a sudden its back and constant for hours on end, I plan to try to get in to see my family doctor today to see if he can help but its a holiday. It seems occasionally my pain killers will get rid of the headaches for a short bit but....the last guy that filled in for my doctor didn't realize I take 30 mg in the morning and 20 mg in the afternoon and he changed to 20mg and 20mg so I called the pharmacy yesterday for a refill and guess what? She tells me that she's really sorry I can't get my refill until Thursday as the numbers don't match up and because the doctor has a note on only giving so many at once!!

I didn't sleep well tonight, I napped on the couch last night for about an hour and then slept for just over four hours and woke up with a fricken headache, took my pills and think its gotten a bit worse but can already tell its gonna be one of those full day headaches!

Any specific lab results I should ask for? I know I had asked him to make sure all my liver tests are being done as well as platelet counts and stuff, things someone mentioned in another thread but honestly all I have been monitoring is the ALT levels personally.

Not happy I have the headaches but even so if I have to go 90 days with headaches to get rid of the hepatitis I will, thankfully I am self employed and will try not to take any extra work outside the home until this is over. I only took Advil twice now until I speak with my doctor to see if he thinks its ok..personally I'd rather not if its gonna cause my liver any stress right now.

Thanks for the support guys, the headaches are the only really bothersome thing right now and it sorta caught me off guard because when I read that as a side effect I think "yeah whatever" and I'm more worried about hair loss or heart attacks or anything weird but headaches? You never think their a problem until you have them days on end...

Heart attack and hair loss were at the top of my "worried about" list, too :) Heart attack was definitely leading the way, though.
Since your headache came so soon after after working out, I wonder if the 2 could possibly be related?
Also, I came across this so wanted to pass it on. See second paragraph under "Blood Count".

www.fountia.com/ribavirin-side-effects/

p.s. I don't personally know what kind of tests to ask for, as I'm pretty much a noob. Hopefully one of the many experts here can help answer that.

And as music said, I am also very grateful for this group. It's been my go-to for support and info and it seems to have not only the most, but also the most organized real-time info for this treatment anywhere on the web. I've scoured the entire internet in the last few weeks, too :)

That's awesome to hear the silver bullet was naproxen :) And that you're back to your daily activities that you love to do!
Those headaches sounded pretty horrible, especially to continue for that long.
It's so hard to tell if something is a side or not, or if you should be worried about something or not, etc.
Looking forward to hearing good news from you soon!

I have something like that also from the local Hepatitis Support Center but my nurse is on holidays and my fricken specialist hasn't called once since I started the medications! Her secretary called the other day to offer me a requisition to get blood taken every two weeks and I let her know I already asked my family doctor to do that on February 6th.

I sorta find my specialist useless and as I mentioned in the beginning on January 8th she told me I would have to wait 2-3 years to get Sovaldi before it was approved...some fricken specialist she is when she doesn't even have a clue whats going on in her field. My wife and I have basically done everything and all she did was schedule a biopsy and then the followup she claimed I couldn't get solvaldi and to prepare in 3 months for Peg+Rib treatment...had we not found the DIN# ourselves then we would have been going down that path.

I am doing ok today and no headaches for two days, I just felt sorta nauseous when eating dinner and notice certain textures or smells make me feel sick when eating but other than that I am feeling positive today and its the start of WEEK 3 for me and I am happy for that!

The headaches part last week worried me if I would of had to deal with that for another 10 weeks that would suck but now that they are gone I am feeling really positive!

Also, when I got my prescription the Ribavirin could not be purchased alone and came with the Peg-Interferon and so they told me to throw it out, then they decided to just depackage and dispose of it instead of even sending it to me which I agreed to for my first batch then sent it but then I had a thought one night....

I thought instead of wasting that Peg-Interferon I asked Bioscript to donate my prescription to the Hepatitis Support Center in the hopes that maybe they have patients that need it and aren't covered in some way etc. , I just didn't think it was right my insurance paying for it and I know its not cheap so I ask that it be donated to someone that could use it locally.

I wish it was extra Sovaldi because I know the Peg-Interferon has bad side effects but unfortunately I have no extra Sovaldi or I would for sure be helping someone on this forum that is less fortunate and doesn't yet have coverage :-(

Al

Bump

Hopefully it continues- a bit tired is a blessing as far as being the only symptom to report!
That's really about all I've experienced so far.
Keep up the routine and hope to hear more good news soon!

ppm guy , basically the ONLY results I was given from my biopsy in Dcember was I was told the damage was caused by Hepatitis and the specialist offered nothing more but I will request it soon.

As for viral loads, perhaps its different in the U.S but in Canada it seems like they make it seem like big deal as far as I have been told they will only be doing Viral Loads at the end of treatment thought a new blood requisition is being sent by the specialists office so perhaps she has changed things and requested that.

I think they said on a scale of 1-5 my damage was a 3 but I also recall the specialist saying something about moderate scarring. As mentioned before my specialist has not done a very good job of staying in touch and asking me how things are going, she is impossible to contact and her secretary is not a nurse and only works mornings however the time she does work she doesn't answer the phone and it all goes to voicemail which she returns days later.

For Sovaldi based treatment viral loads are not as important as they were with Incivek or Victrelis as they were response guided therapies (I.e., frequent viral loads required). Almost everyone goes negative by week 4 on Sovaldi.