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Hep C Discussion Forum -> On Treatment -> Ribavirin/Sovaldi worry
Post Info TOPIC: Ribavirin/Sovaldi worry
Snowball271


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RE: Ribavirin/Sovaldi worry
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Hi all,

Just checking in.  I just got home from a week in Fort Lauderdale area.  It was beautiful and 80s every day.  Back to single digits this morning!  Oh well. I was worried about the sun while on treatment, but like everything else I have been worried about it was fine.  I have been very lucky with minimul to no side effects with this medication. Once a week or so riba rage comes out and my wife of course takes the brunt.  But not bad and always quickly apologize.  I wore a hat and sunscreen but was able to enjoy the beach and got a nice tan.  Just opened my last package of treatment (6 days to go)  Looking back now it has gone by fast.  Thank you all for support.

Joe

 

 



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Tig


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Hi Joseph,

I'm happy to hear that you're doing so well. Already undetected and only 5 weeks to go, yay! I'm impressed with your ability to keep up that kind of workout regimen, just don't over do it. You can injure your muscles and tendons easily, you are likely experiencing some anemia and the oxygen supply to the tissues is diminished. That's a big reason for the fatigue so many people experience from Ribavirin and treatment in general. There will be plenty of time to return to your pre treatment condition, so I'd recommend scaling it back some. 

Jill's hydration advice is solid, just be sure to keep at it throughout treatment. Keeping well hydrated has prevented many side effects people were having once they increased their intake. I liked to keep up a 3-4 liter per day intake and that was sufficient. Surprisingly I didn't use the restroom at night during that period, but once I finished, I'm back to my 58 year old nightly visit. You know what that is.... Ugh!

The weather here in Florida is in the 60-70 degree range. Not beach weather for us natives, but there are plenty of daring tourists/visitors braving the 70 degree water here in southwest FL. It might be a good time to come. The sun is still warm but not powerfully hot and no rain this time of the year. You could get some time away from that snow and with care enjoy the sun in small doses. Wear a hat, clothing suitable for your condition and sunscreen. Oh and get some good sunglasses, you'll need them. Keep in touch!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Cinnamon Girl


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Hi Joseph, congrats on your 4 wk viral load result, that must have given you a real boost!

Good to hear things are going well for you and you`re managing to keep up with some gym work.  Moderate exercise is great while on treatment and can lift your spirits but don`t feel bad that you`re not able to keep up the same routine as you normally have been doing, you`ll soon be able to get back into it once your tx is over and your body has recovered from the side effects of the Ribavirin. 

I agree with what others have said about the need to protect yourself from the sun, and please do be careful to cover up if you do take a vacation in Florida.  I can certainly understand why the thought of warmer weather is so appealing to you though!  You`re over half way through your 12 weeks now and you`re responding well, so just keep going for the last few weeks, it`s not for much longer!

Take care and thanks for the update, keep us posted! 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Snowball271


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Thanks to all for the responses.  I am about through week 7 of 12 on Ribavirin/Sovaldi.  After a few rough days around week 3 it has been pretty smooth sailing.  I think like many have said water is the thing I was lacking those few days.  Been getting to the gym regularly weight lifting goes fine but my endurance on the treadmill is awful compared to what I usually do.  I have taken others advice though and not pushed it too much.  Still contemplating a week vacation in Florida.  Worried how everyone says you burn so easily. Vacation in Florida without being in the sun dosen't seem right.  Love to go somewhere a little warm at least though.  Here in Maine this winter  has been one of the coldest and by far the most snow I have ever seen.  Labs after 4 weeks showed the virus undedected.  Was very happy to hear that. Thanks for all the help.

 



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Liamc


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Hi Joseph,

l am on week 13 of riba/Solvaldi another 11 to go. It was rough for the first few weeks, but after that it settled down. I was expecting it to be a lot more debilitating, I have to be kind to myself and take it easy when I can. So true about water, just keep drinking it and moisturise every day. I keep focusing on the new life I will have when this is all over, it's worth it.

 

cheers



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GT3a Age 61. Clinical trial sovaldi/riba 24 weeks. finished trial 17th April 2015 undetected. EOT+4 weeks undetected.24th July 2015 "SVR"

24 week SVR!!
dragonfly


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Hi Joseph,

Ribavarin is a horrid drug and causes a lot of sides but on the other hand - I got told today by my clinical nurse that the only 4 patients who relapsed did not have Riba.  I know it can be really unpleasant but hang on in there.  I look forward to your SVR, these drugs work!

Nxxx



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Enavigo3891


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Hey snowball... I am 31 and did the same treatment as you last year 2/11 to 5/5. I think everyone is different in how we respond regarding side effects. I personally didn't feel terrible the first 4 weeks, the next 4 got tough. For me that's when the skin rashes started "riba rash". The last 4 were thr worst but it was the fact i was on the home stretch that helped. I actually kept a calendar thru treatment that was numbered up and down so i always knew what day of tx i was on and how many days left. When you are on day 64 and not feeling so hot there is something mentally satisfying about saying i only have 20 days left! The main thing that helped me was the water. I didnt go anywhere without my jug of water. And after treatment, i finished on a monday and then flew up to NY that friday for a family reunion. Just listen to your body and dont over do it. If you click on my profile you can see what posts i have made if you want to read back. I posted some detailed descriptions of my experience through this tx. Stay positive and take it easy. Good luck.

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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
TazKat


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Just remember ur body is handling some very toxic stuff & there are going to some uncomfortable points. but that lets us know that is working, I kept telling myself that.

which meds are u taking??



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
TazKat


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what Tig said.. I could not get in sun either. just wear really protective gear, have an umbrella that u could sit under. if want to play in water, just briefly.. the weeks will pass by fast. I did 4 treatment.& the solvadi did it for me... yay SVR!!! so keep ur chin up & u will get there too!!!!!! looking forward to ur SVR dance!! smilesmile

 

Peace out

Taz



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Tig


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Hi Joseph,

I live in southwest Florida myself and can attest to the fact that Ribavirin can and does cause sun sensitivity. I was on treatment from May through December, our hottest months. I experienced problems even with limited exposure. I failed on a few occasions to wear a hat (I've got a lot of hair too) and my scalp blistered each time! I don't typically burn but again minor exposure just turned me red and caused my skin to both sting and itch. I then developed the Riba rash on my abdomen and it didn't let up until well after I was finished with Tx. So my recommendation is to use a hat, at least a SPF 25, cover up as well and limit your exposure to minutes at a time. One other thing to emphasize is to wear quality sunglasses! There was never a warning beforehand, so don't think you'll know when you've had enough! Riba is not to be doubted! Think you're cranky now? Get a good Riba rash and sunburn going at the same time and you'll be sorry! Just use your head and be extra cautious right now. Good luck and enjoy our beautiful state!

Tig            



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Scruffy


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I wasn't on Sovaldi but I was on the ribavirin. On me the sun reacted with the riba as in I got a itchy hive type rash from it. From what I understand You have to be extra careful in the sun from the Sovadi also. Maybe some one that was on it can chime in. Anyway while in Florida wear sun screen and try not to stay in it for to long. just try it out and see how it works. I live in Florida, for me the heat and the sun did nothing but hinder me.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Snowball271


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Thanks I will take advice and go light on weights and easy on treadmill.  Today seems much better so far got back to drinking a lot of water and did some light duty work.  Hope if I keep up with this it will go back to the way it was the first couple weeks.

One more question, My wife and I have a week to Florida planned around week 10.  I have heard the sun can really affect skin.  I'm not fair skinned and usually don't burn bad.  Think I can still go as long as I'm not in direct sun for too long and wear sunscreen?

 



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Scruffy


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Hi Snowball

I have to agree with Tig 100%. Exercise is good while on treatmen and your young enough to do it but I would not lift heavy right now. Go light if you feel the need and some one to spot you, or just walk. You can lighten up for the time your on treatment. Heck its just 12 weeks then you have the rest of your life to max on the weights.

Best wishes



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Tig


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Hi Joseph,

If I can recommend one thing, it's to not push yourself too hard during treatment. You're experiencing some reduction in your bloods ability to transfer oxygen to the muscle. Overdoing it can cause the heavy fatigue you're experiencing, as well as the possibility of hurting yourself longer term. Exercise is good, but be cautious and go slow. You'll feel better once you're finished. Right now I suggest one thing at a time. Good luck!

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Snowball271


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Thank you for those who have responded. I think one thing that has made a difference is that the first couple weeks I was working out, drinking protein shakes and eating healthier.  I hurt my back weightlifting heavy (which I won't be doing anymore) and haven't been to the gym for a week. Going to ease my way back into it this week, lighter weight and more cardio. Just most worried about this hanging on after treatment.  The summer is my busy time of the season, hope to feel better by then.



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Tig


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Hi Joseph,

Welcome to the forum, I'm glad you're here and I hope we can help you with your questions. First, you sound like you're experiencing side effects of both drugs, but imo it sounds more like the Ribavirin. It has a nasty way of affecting your mood and motivation. I suffered from it, many of us did along the way. It will cause everything you're experiencing, some days worse than others. It causes what we call hemolytic anemia, which directly affects the red blood cells and their ability to carry oxygen (decreases hemoglobin). Because of that you don't have the ability to oxygenate your tissue. It's similar to running until you can't catch your breath. When that happens, fatigue and weakness set in and any host of other problems. There are times when they will reduce the Ribavirin dose if your hemoglobin drops below 10, not always. Your periodic blood tests tell the doctor how you're responding and however your look at it, this is a sign that the drugs are performing as desired. It's no darn fun, but it happens and treating it symptomatically is often all you can do. Try to eat the best you can and hydrate, hydrate, hydrate! Water is your friend, rely on it to help you through this!

As Scruffy mentioned, some days will be worse than others. I can also confirm that it gets better once you're through with treatment, but some of the side effects last for up to six months afterwards, but not like you're feeling now. That I can promise you. I know you don't believe it will ever be over (at times) but trust me, it goes by quickly. You just don't realize it til you have the chance to look back on it! Hang in there buddy, you're going to do fine! We're here to help you through this.... Good luck...

Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Rubye


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Hi Snowball,

I'm sorry to hear you're having such a hard time. I think some of us may have an allergy to these drugs because most people seem to do just fine on them. I, however, also had a very hard time on them. I'm only two weeks off of them and the first week I felt great and then this second week I've done nothing but sleep and watch tv due to fatigue and nausea. But, people tell me that after a month or so you start to feel better.

I hope you feel better soon. Hang in there and take care.



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UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.
Scruffy


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Hiya Snowball and welcome.

The first time I treated I was on riba/interf combo. I was in my late 40's and I never missed a day of work. Last time I treated was with the old triple tx and was 60 and IMO age makes a difference. At 4 weeks in my red blood cells dropped a bunch and I was fatigue most of the time. (big time) The combo I was on only added to the sx form the riba. Even if it doesn't get better or gets worse your only doing 12 weeks so at your age I wouldn't worry and yes you will feel better once you stop the drugs but the riba does take 6 months to clear. MY opinion is based on my treatment before the Sovaldi was approved. 

Best wishes for you.



-- Edited by Scruffy on Sunday 25th of January 2015 05:41:36 PM

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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Snowball271


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Hi there.  First post here.  I have looked at old posts and understand there is many on this subject.  So sorry if this is just a repeat, more looking for advise that it will get better.  But rather have the truth if that is not the case.  I am almost done with week 4 of 12 week treatment.  First 2 weeks weren't bad at all.  A few short waves of fatigue/headache/nausea rolled in one and a little short tempered.  Then in the last week it has hit me with the same symptoms but much bigger and longer waves.  Thankfully sleeping fine and no skin rash or itchy.  I am relatively young (35) and healthy as an ox otherwise.  I start a new job the same time I get done with the treatment which is very physically demanding.  So two questions: A)Do you think this is what these side effects are going be like for the next 2 moths or could it go back to not too bad like the first couple weeks?  B)If these grueling side effects do keep up the next two months will the majority go away within a week or so of stopping pills or will I feel like total crap like this for another 6 months.  Thank you



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