Hep C Discussion Forum

bubble · Senior Member

RE: Sovaldi/Riba

Cinnamon Girl · Guru

Hi again Randy,

Very good to hear your treatment is going well now and the extreme anxiety has subsided with the help of the buspar. Keep on doing what your doing, sounds like you`re right on track now.

I`m so glad you found this forum and that we`ve been able to help. Keep in touch and best of luck with your 4 week viral load test.

Sounds like you had a fun Easter! smile

Randy · Newbie

Thank u all for the advice n support. ...just wanted to say that im back at work n doing well. ..eating healthy n tons of water along with the buspar has been key for me....I feel like normal n im almost done with week 3 once again thanks everyone I can finally sit through meetings did some Easter egg hunts n back to work have a great day everyone

Snowball271 · Member

Hi Randy and others on Sovaldi/Ribavirin. I am genotype 2 and just finished 12 weeks of treatment a week or so ago. Like others said everyone is different. I was fortunate and had very little side effects. I did notice around week 2 I injured my back, stopped eating as healthy, drinking as much water, and couldn't work out. For that week I started getting severe headaches and overall fatigue. I believe living a healthy lifestyle which most important is drinking tons of water and eating healthy foods is key. Also working out (not too hard) helped. I personally never dealt with anxiety so I can't relate. But noticed your avatar Randy so thought I would say in my experience of being in recovery for 10 years I personally have to be careful taking any habit forming drug (narcotic or not). But if I go to meetings and work with others I believe people like us can take anything as prescribed safely. There is no need to suffer especially if it was making you not want to go to meetings. Hang in there. First couple weeks felt like it was going to be a LONG 12 weeks. In no time I was taking my last pill.

Randy · Newbie

Thank you so much for the feedback and the support its been rough so far...im gonna call the specialist now n gonna let them know about the buspar

Enavigo3891 · Senior Member

Hi Randy and Jennifer!

I am (WAS - will convince myself of this soon) Geno 2 - Did the 12 week Solvaldi/Riba. I had a rough time with the Riba. By week 6 or so it ruled me... I think I described it at one point like being a marionette and the Riba was my puppet master. I drank tons of water, craved (and ate) greasy foods, never did find much relief from the riba rash.

Anyway, one thing I found out early on (thankfully), is that none of my other doctors had any clue about these drugs. Now hopefully that's changed some since this combo has been out but they didn't have a clue. Like Malcolm said already, make sure your Hepa doc knows (I personally wouldn't take anything before I cleared it with my Hepa doc - even if another doc prescribed it). Even post treatment.... Ex. I was recently prescribed Prednisone dose pack for an ear infection (really, who prescribes that for an ear infection, but I digress) ... Lets give the girl who just cleared HCV she had for 30 years an immunosuppresant! Just be careful, and always on your toes.

Best of luck to you both.

mallani · Guru

Randy,

Make sure your Hepatologist knows you are taking buspirone.

It can make you feel 'spacey' and sleepy so be careful.

It also has a lot of drug interactions. Family doctors may not know a lot about Sovaldi and Riba. Cheers.

wmlj1960 · Moderator

Randy wrote:
he put me on buspar n it seems to be working pretty well so far....its just all new and im not liking how I feel

For me, at first, buspar made me feel weird and I almost quit it. But after about a week or so I started feeling better. After the rocky start was over I could see an improvement in my anxiety so I gladly stayed on it. Hopefully it will be the same for you.

Welcome to the forum Randy. smile

Randy · Newbie

Yes I have type 2 and on a 12 week treatment. ...my enzymes was highly elevated like in the 900s....I went to my family doctor today and he put me on buspar n it seems to be working pretty well so far....its just all new and im not liking how I feel but I had my blood work come back in and everything is coming back normal so far so that's a blessing. ...I just couldn't take the panic attacks anymore it was to much for me thank u all for your information n advice im gonna keep reading n learning as I go through this

Thanks

wmlj1960 · Moderator

bokeygirl wrote:
Also my doctor told me this sovaldi/riba tx will take 24 weeks is this normal?

Hi Maria. I've learned that when it comes to treatment for Hep C, what is "normal" for one of us may not be "normal" for another. Although I'm genotype 1a my treatment (7-2014 to 1-2015) was with Sovaldi/Riba for 24 weeks also, so it's not uncommon. My doctor also did not want me to take peginterferon and from what I understand, I'm glad of it. With S/R only I had some issues that were not fun, but like Tig said, "It's totally doable!". Good luck! smile

Cinnamon Girl · Guru

Hi Randy, welcome. I`m glad you`ve found us, you`re with friends here.

I`m sorry you`re having such bad panic attacks, how scary for you. Anxiety is certainly a well known side effect from ribavirin (Ribapak) and it can be very severe for some people.

Firstly, this may well subside in a week or so further on, once your system has adjusted more to the drugs, and secondly I strongly suggest you talk to your doctor about prescribing an anti-anxiety medication for you. Modern anti-anxiety and anti-depressant drugs aren`t actually narcotic based, although of course can be habit forming when taken long term.

If this really is too much to bear then there will be other treatment drugs coming along with might be more suitable for you.

Could you give us a few more details, for example do you know what your current liver status? I`m thinking that if you don`t have advanced liver damage it would be ok for you to wait a while. Also could you tell us what your genotype is and how many weeks treatment are you doing?

These are just a few initial thoughts, I expect other people will want to comment too.

In the meantime, try to stay as calm as you can and avoid stressful situations whenever possible.

Wishing you all the best, Jill

(Ps - I`ve deleted your duplicate post)

Randy · Newbie

Hi my name is Randy I'm new on here so im learning how this works. I'm going through extremely bad panic attacks n anxiety and never had history of anxiety before. My doctor says that this isn't a side affect and I'm going through this alone I refuse to take any narcotic medicine. Does anyone have any ideas on what I can do to get through this. I ccan't even be in meetings around people im comfortable with this is affecting me bad n im only 2 weeks into my treatment

Tig · Admin

Hi Maria,

Glad to see you back on the forum! I hope you have quick success on getting your treatment approved and started. The all oral, Sovaldi and Riba is a current strategy and is effective. Your period of 24 weeks for GT 3 is accurate. The studies showed 12 week treatment not nearly as effective as the 24 week plan.

You shouldn't have much trouble tolerating treatment. The Ribavirin can cause some problems but speaking from lengthy experience with it, it's manageable and we can help you through anything that might occur. But it's not something you should stress over. It's totally doable!

I'm including some info on GT 3 treatment from UW and may answer some questions. Good luck and keep in touch!

http://www.hepatitisc.uw.edu/go/treatment-infection/treatment-genotype-3/core-concept/all

Tig

bokeygirl · Member

Also my doctor told me this sovaldi/riba tx will take 24 weeks is this normal?

bokeygirl · Member

Hello all :) I just received my prescription for tx. I'm being put on Sovaldi and Ribavirin all orally I have genotype 3 I know my only other option is adding peginterferon but my doctor said it's rough and better as a last resort. I thought avoidING injections would ease the side effects but as im reading now some of you still had issues with nausea, rash, hair loss. what're your suggestions? I still have to wait to get denied by my insurance to go another route to obtain my medications.

Gator Man · Senior Member

Hi Jennifer,

As you can see, there is a lot of experience on this forum with Sovaldi and Ribavarin. Tig is a veteran of the Riba wars and his advice is spot on. Your sx are typical for someone on Riba and certainly no reason to think you are a "Debby Downer".

The good news is that you are on the downhill part of tx, it doesn't last 24 or 48 weeks like the old days, you just added dozens of people to your support system, and IT'S WORKING! UND will become SVR!

Glad you joined are group; we are here to help.

john

P.S. I used to have an employee call me Negative Ned and I wasn't even on Peg/Riba at the time.

Rubye! Glad you are on the mend Mike, SVR will be here soon.

wmlj1960 · Moderator

Welcome to the forum Jennifer. I really hope you will be able to stay on your treatment after talking to your Dr. and suggestions your finding here so far. I just finished 24 weeks of Sovaldi / Ribavirin 1000 on Jan 3. The first few weeks I had very little problems with side effects. But then I started having issues with bad depression, anger, super tired and poor appetite. You are so right about an emotional support system. I live alone and did not put much effort into seeking emotional support other than a few superficial post on this forum in the early, easier days. I always received excellent information and understanding here, but then my "debby downer depression" caused me to isolate from people, even on this forum, which I now see was a big mistake.

At week 15 of treatment I was in an accident in which I was badly injured and that really magnified all my Hep C side effects and added plenty of other crap too. But I still kept taking my Sov/Riba because I knew the end of treatment was in the near future, (9 weeks at that time), which did not seem very NEAR at the time. But now that treatment is over I'm so glad I stuck with it. I'm feeling much better every day now that the Ribavirin is history and I'm having way less depression, I'm eating everything in sight and even doing what exercises I can for now. I'm now remembering more and more how wonderful life can be on those good days, and I'm looking forward to joining the many members on this forum who have achieved SVR. I hope you'll join us too! smile

.

malekula man · Senior Member

I was 3 months on sick leave with my first Tx Sovaldi/Peg/Riba... It was hard time. But side effects stop 2-3 weeks after Tx.
Use all the tips Tig gives you, they work.

Good luck!
MM

Tig · Admin

That's excellent Rubye!

The odds of people going on to SVR 12 after achieving SVR 4 are almost identical. You've got every reason to be excited! Keep up the positive attitude, you're just about there!

Tig

Rubye · Senior Member

Hi Jennifer,

Nausea was the hardest part of my treatment also. I was on Sovaldi and Olysio for 15 weeks but at one point around 8 weeks almost quit. However, my doctor finally gave me some Zofran and it made all the difference in the world. I still felt very bad at times but I was able to keep going. You definitely are not alone in this. It really helped me to be able to talk to others about how I was feeling and no one will ever think you're whining. Hang in there and take care for this all will soon be a thing of the past.

Btw, I am undetected now at 5 weeks after treatment and starting to feel normal again.

Groupergetter · Guru

Hi Jennifer, glad you are past the mid point of your tx. Many here have experienced the problems you are having with the Riba. Tig gives good advice, also stay hydrated by drinking plenty of water. You're gonna get through this. Just stay determined to kick dragon butt and get well. The time passes quickly, When you get frustrated, you can always come here for support. Do a search for posts by Taz a member here who is now SVR. She had some difficult times but made it.

You're on a forum with wonderful folks who understand what you're going thru. No one here would ever remotely think you're "whining" It's not easy dealing with the daily stresses and demands........especially while taking powerful meds. Happy Valentine's day.

dragonfly · Senior Member

Hi,

As everyone else has said don't worry, I am only just getting my breath back even though I finished in November. You must tell your doc as Riba often causes anaemia which I am currently being treated for. I think that with all the publicity for these new drugs we thought the sides would be better than the old treatment but for many people they aren't. The difference is; THEY WORK! They truly do, you only have to look at this forum and the amount of those achieving SVR has totally risen.

I hope this helps,

Nxxx

beingsassy · Senior Member

Hey Jennifer,

i was on Solvaldi and ribavirin for 12 weeks and there were days I so wanted to quit. I ended up taking zofran for nausea and lost so much hair I just shaved my head. Many days I called in sick cause I just didn't have the energy to walk the two blocks to my job. It took all my energy just to shower. But, I'm cured and the side effects are gone though they stuck around for awhile after tx. Please don't give up. It may seem like forever, it did to me, but the day will come when you take your last dose. I was so thrilled to reach SVR and your best chance is to complete tx if at all possible. There are other meds but they also have side effects so it's basically pick your poison. Glad you found us cause I know that I wouldn't have finished without the encouragement I got here. So take care, do your best to finish tx and keep posting when you want. This will pass

gigi

Scruffy · Guru

Hiya Vertiess

Great to see you are undetectable. You have to stay on for the full treatment. Just because its not detected in you blood doesn't mean its gone. Its a good indicator that the treatment is working. I was on the old triple with incivek. The riba was the cause of most of my sx. If your getting short of breath its likely your red cell blood count is down. (also a sign that the rida is doing its job) Your Doctor will monitor that. Stick it out and vent here about every little thing it helps. My treatment was 48 weeks. The prize was SVR and it was worth it.

Keep your head up.

Tig · Admin

Hi Jennifer,

Welcome to the forum, I'm glad you found us! I'm also sorry to hear you're having such a hard time with the side effects. From your description, you are experiencing a common reaction to the Ribavirin. It's a difficult medication for many people to adjust to and does occasionally result in some people stopping treatment. Please try your best not to let that happen. I can make some recommendations and I'm sure you'll hear from others as well.

First, you need to discuss this with your doctor if you haven't already. They can prescribe medications for nausea that work great. I was prescribed a drug called Zofran. It worked great! There are other medications available as well. You can try to calm it with things like ginger ale, flat coke or pepsi helps sometimes. A bland diet helps sometimes, but I'm fairly sure it's caused by the Riba. Ribavirin causes terrible rashes in some people, it did affect me that way. Don't scratch, that makes it much worse! Try something like Zyrtec (Certrizine) or Benadryl for the itching, it works. They are safe but get your doctors approval first. Avoid hot showers or baths, luke warm and less frequent if you can stand it. If you bath, use an oatmeal product in the water. There are oatmeal soaps for the shower too. Stay out of the sun, it's not your friend while you take Riba. When you do go outside, be sure to wear good sunglasses, very important! As for the anger and moodiness, Riba is well known for it. I was on the old Triple with Peg/Riba/Vic. The Peg and Riba caused me significant problems, depression and anger both. My doctor started me on an anti depressant, it helped a lot. Do your best to avoid the triggers that make you mad! Leave the room and cool off. This is the one thing you definitely need to mention to your doctor. They may be able to adjust the Ribavirin dose if necessary, but it's best to stay on as high a dose as you can tolerate.

Don't worry about sounding off here on the forum. That's what we're here for! Please keep in touch and let us know how you're doing. Use our search function at the top of the page. We've got lots of information available there. Let me or anyone else know if you have any questions. I'm glad you're here Jennifer, good luck!

Tig

vertiess · Newbie

Hi my name is Jennifer I am on treatment now with 400mg sovaldi and 1200mg ribavirin a day and am currently on week 9 of 16 and on my 8week labs was undetectable. I am having a really hard time with the treatment side effects like massive rashes,anger,super tired, its hard to breath when out walking, I keep getting sick too which sucks on top of treatment. I was a non responder to peg/riba so I am soooo happy that this has worked but am finding it harder and harder to continue to take the treatment especially now knowing that the treatment worked so I keep having thoughts like what if I quit its already gone.

I can honestly say that having a good support system is a must when doing this intense experience as it really takes alot out of a person emotionally as well as physically. Im really praying that it stays gone even after treatment stops as I suffered from the Hep C GT 2 for over 15yrs and it was starting to cause damage and I was getting really sick before starting this regiment. I cant eat a whole lot of food groups I find it sorta difficult to find things to eat that dont make me sick as I throw up everyday and it has done a number on my stomach.

I know that I may sound like a whiner or debby downer but I really am greatful that I have been able to qualify for this drug and to have it actually work is amazing. I really hope that it works this well for others minus all the crappy sides I have delt with. It really is worth it but sometimes hearing reassuring things is a must to keep up moral and give you motivation to push through.

-- Edited by vertiess on Friday 13th of February 2015 09:13:58 PM

-- Edited by vertiess on Friday 13th of February 2015 09:14:37 PM

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