Aa
Sovaldi and Olysio Sides
I've looked back over the posts for the last few months regarding Sovaldi and Olysio side effects and decided to start a new post for those of us just now starting.
Finally, I was approved for Sovaldi and Olysio and am supposed to start on Wednesday. I was given no instructions from my doctor except to make an appointment two weeks out. I've been reading the posts here since January but still have some questions and concerns.My struggle was with getting the prescription more than insurance. I have Original Medicare with Extra Help and was approved on the first appeal.
I'm 1a, tx naive, VL of 2.5 million, with compensated cirrhosis.
My main worry is about sunburn. Do you all go out during the day with sunblock or wait until night? I live in a small studio with a large window that takes up one wall but don't receive direct sun since the view faces north. Is this sort of indirect light okay?
I see people talking about drinking a lot of water. How much water?
Is short travel by plane safe enough?
What time of day do you take your pills? Both together?
Any tips you guys can give me would be appreciated because I am more than a little nervous. :)
Finally, I was approved for Sovaldi and Olysio and am supposed to start on Wednesday. I was given no instructions from my doctor except to make an appointment two weeks out. I've been reading the posts here since January but still have some questions and concerns.My struggle was with getting the prescription more than insurance. I have Original Medicare with Extra Help and was approved on the first appeal.
I'm 1a, tx naive, VL of 2.5 million, with compensated cirrhosis.
My main worry is about sunburn. Do you all go out during the day with sunblock or wait until night? I live in a small studio with a large window that takes up one wall but don't receive direct sun since the view faces north. Is this sort of indirect light okay?
I see people talking about drinking a lot of water. How much water?
Is short travel by plane safe enough?
What time of day do you take your pills? Both together?
Any tips you guys can give me would be appreciated because I am more than a little nervous. :)
Best Answer
Your handle fits beautiful attitude and sensibilities! Just wanted to say that when I felt so bad (on some, or actually most days in my own personal case) The tx and the withdrawal seemed sooo long. Each day was a week, etc. Now that I'm off all that the days fly by like they used to and I'm aging quickly ;-) I know it's so hard to 'get that' while you are suffering sides, but I love how relatively quickly that stuff left my system, if we're comparing it the older treatments. I had friends who took a year (or more) to feel really better after those. The longer it's in, the longer it takes and 3 months (or now it's coming two? I'm not certain) is really not that long, at all. The gift of ridding oneself of this dreaded dragon is more than worth it to me. SVR for all, (even those who relapsed) -- we're in a whole new age and I feel lucky about that. There are sooo many diseases where there is no cure, at all and p** poor treatments...I know friends who suffer with them. It hasn't been easy but I beat cancer (I know there are other cancer survivors on here) and maybe now this. I feel blessed and bless you all!
I am in week 9 and have severe headaches from sunlight. I have stayed out of the sun as I had terrible side effects from Incivek. I too am undetectable since week 6. I keep my lips moisturized and my face and hands, with sunscreen and also wear hats and sunglasses. I have had no problems as I was warned. I take it at 11:30 and don't have a problem with insomnia. I am hoping after 3 times this is the magic bullet. Don't take any chances.
I started O & S on Sept. 9 and I have had quite a few side effects; headaches, rash, fatigue, severe itching, muscle & joint pain mostly in legs and lower back. I also went to a saturday morning football game that started at 9:30 am which lasted a little over an hour and my nose and the part in my hair got sunburned and blistered.
At 2 wks my AST & ALT were within normal range and today I found out my 4 wk results showed UNDETECTED! I wanted to scream it out from a mountain top and tell the world how happy that made me. Of course I didnt, I only shared it with my husband & my mom.
So with that being said yes the side effects for me have been rough but worth it!
Hang it there, I wish you the best and we both can do this!
At 2 wks my AST & ALT were within normal range and today I found out my 4 wk results showed UNDETECTED! I wanted to scream it out from a mountain top and tell the world how happy that made me. Of course I didnt, I only shared it with my husband & my mom.
So with that being said yes the side effects for me have been rough but worth it!
Hang it there, I wish you the best and we both can do this!
Treated and cured with solvaldi and olysio. Just got the news. It really is a miracle drug. No side effects including sun/rashes. Felt good and strong throughout.
In 15 days, I will be finished S/O. Everyday is different. Today has actually been a bad day. Generally a good day follows a bad day. Hang on tight and ride the cure!.
So proud of all of you for understanding the ups and downs of Tx, and doing what you have to do to get thru it. Yes, some days are worse then others, but some days are good. You must always remember that this is what the meds are doing to your body and not that your going crazy. I really like the idea of trying to distract yourself and lose some inner perspective. Nature is at its finest while on Tx.
Sovaldi13. So very happy that you have gotten thru that post Tx era. The meds have cleared your system pretty much and now you are good to go.
It's been 6 months since EOT, and I have no repercussions from Tx. Feel great and life is good. Had RA going in and that still remains, but this I can live with in my life.
Think your intuition tells you if you've cleared the virus or not post Tx. Glad to hear that you feel as tho its gone. Hopefully the bloodwork will confirm it.
Personally I knew without a doubt that I no longer harbored the virus and didn't even care if I took the final test.
Keep on hanging on everyone and it will be over before you know it.
Take care and keep the faith
....Kim
Sovaldi13. So very happy that you have gotten thru that post Tx era. The meds have cleared your system pretty much and now you are good to go.
It's been 6 months since EOT, and I have no repercussions from Tx. Feel great and life is good. Had RA going in and that still remains, but this I can live with in my life.
Think your intuition tells you if you've cleared the virus or not post Tx. Glad to hear that you feel as tho its gone. Hopefully the bloodwork will confirm it.
Personally I knew without a doubt that I no longer harbored the virus and didn't even care if I took the final test.
Keep on hanging on everyone and it will be over before you know it.
Take care and keep the faith
....Kim
Geo: Thar should have read '......SEEMS likd you dis all the right things..'
Can't even blame autocorrect as I had my husband turn it off. : -). P
Can't even blame autocorrect as I had my husband turn it off. : -). P
Congratulations on completing treatment. It should like you did all the right to minimize your side effects and give your body the best shot at 'helping' the meds do their job.
Another step on the way to SVR, but still, a step in the right direction!
Here's wishing you few sides on the period post-treatment as your body clears the meds AND SVR!! Pat
Another step on the way to SVR, but still, a step in the right direction!
Here's wishing you few sides on the period post-treatment as your body clears the meds AND SVR!! Pat
Just completed 12 wk S/O and had bloodwork. Since I have been und <15 since the 4 wk bloodwork I am gonna assume that should remain unchanged. I realize that the only test that really counts is 12 weeks EOT and am keeping my fingers crossed that all remains consistent.VL to start was 2.6 million so to get to <15 was a real morale booster not to mention a well needed rest for my liver.Sides weren't terrible. Fatigue was # 1 with a rash on my back taking 2nd.I was aware of a change in my remembering things but whether that was brain fog or not I dont know.I took great care in the sun,long sleeves,spf 100,hat&glasses and with all that,limited my time outdoors. I also drank plenty of water,maybe too much.I tried to average 100 oz daily which is more than 1 oz per every 2 lbs of body weight.Keeping my fingers crossed that I can use the phrase SVR in the future. Regards to all. George
I think a lot of it is age and health-to-start related. Like for me, I'm 67 and for the last year have been having pain associated with neuropathy and arthritis and my symptoms pretty much are exaggerations of what was already going on. Plus, whether or not you have cirrhosis and how severe it is would make a difference. So considering my age and the cirrhosis and bone/joint problems I feel like I'm doing great.
My first 2 days on S&O uneventful but the last 3 days I'm really tired
and feeling kind of ****** about 2 hours after I dose,nothing I can't handle
so far. Hows everyone else doing?
and feeling kind of ****** about 2 hours after I dose,nothing I can't handle
so far. Hows everyone else doing?
I have to qualify that I had a bone-marrow transplant 2 years ago, so that might skew my own stats a bit. But I took the Sovaldi Olysio and it looks like I'm SVR (even though I won't know for sure until the end of this month) the reason that my docs think this is that my liver functions tests, that used to average in the 60s, 70s were just taken and they are still 19 -20 which is really good. Plus, all the symptoms that I was experiencing from the Hep C are virtually gone, particularly that liver ache, water retention, cloud of depression, joint aches, etc. It's weird, you kind of know when you don't have that cr*p and it's wonderful. Course, I could be surprised but I really doubt it. My hepatologist told me that the virus itself can make some people (particularly women but not only women) people go a little auto-
immune in their symptoms. Course, some people can have hep c, even in the advanced stages, and not experience symptoms, at all. That's why I think it's so important to be checked.
Anyway, it took over a few months for me to quit experiencing the many sides of the Sovaldi Olysio treatment, and they were pretty distinct. I'm so glad that so many people taking S & O hardly had any real symptoms to speak of, I just wasn't one of those people. Comparatively speaking
though? I would rather take S & O than the many other treatments, but that's just my own opinion. I'm curious to see what's coming down the pike in a few months, but I guess it might be a moot point for me now. Hopefully, it is kinder and gentler and of less duration. While it wasn't a walk in the park for me, it was very doable, particularly as I was growing sicker from the Hep and that's now not hanging over my head. I'm very, very thankful. So yes, for me at least, it took a little over 2 months for the symptoms of S & O to go away for the most part. Considering that I took it for 3 months I figure that's not too bad. While I was on it I ate with my meds that I took every day around the same time (at around 2 pm) and I took both together, that's what the distributing pharmacy told me to do, to pick a time of day and stick to that and take them together.
I drank a lot of water (with a splash of black cherry juice for flavoring, but just a little bit). I ate and ate and gained weight (but I was and continue to be just a few pounds over my ideal weight, which I think held me in good stead, from all I've read, my doc agrees with this too) I tended to eat pretty well, but I've eaten pretty well for a long time now (since my 20s) so I'm used to it. I figure to eat well on anything, drugs or no drugs, well help you anyway -- But I'm not a Monk...;-)
I was a bit slammed on the drugs, so I couldn't do a lot of exercise if I wanted to, but I stretched and did what I could without overdoing it. The first month off was a bit hellish for me, but I was mostly okay with that because I knew there would be an endpoint. When you know there is an endpoint, at least for me...It gives me the will to go on and just deal with the best I could. And yes, that endpoint came and went, I really don't feel the effect from the meds anymore, not to any great extent. So my recommendation is just to keep the faith, watch a lot of great, funny movies that give you an up attitude, etc. I'm really glad I had my dog here to distract me too, she was great for me. (I don't have kids) I think things that take you out of yourself and your own mind and troubles are key. I did a lot of guided meditations with my ipod and tablet, that helps me a lot. Guess other people have prayer, etc.
And like I said, I read these boards a lot from time to time..This one and others, and I think just from my own observations, that most people taking this tx don't have a lot of downside to them. During or after. I think that those of us who did are in the minority, not majority. But that's just my own observation and I'm sure no expert. Funny how they don't keep a lot of records of patient symptoms, before and after treatment, not that I've seen anyway. That's why these boards with patients' own experiences are so important to me. It did make me feel far less alone with this and I'm grateful to them.
I'm F1 liver damage. Female, 5'6, 135 pounds, 61 years old (I know if I was 20 years young I would have sailed through this a lot easier, but that's just my own opinion) in fairly good shape before I started treatment, have had hep for at least 30 years, if not more. So glad that it looks like it's gone...
immune in their symptoms. Course, some people can have hep c, even in the advanced stages, and not experience symptoms, at all. That's why I think it's so important to be checked.
Anyway, it took over a few months for me to quit experiencing the many sides of the Sovaldi Olysio treatment, and they were pretty distinct. I'm so glad that so many people taking S & O hardly had any real symptoms to speak of, I just wasn't one of those people. Comparatively speaking
though? I would rather take S & O than the many other treatments, but that's just my own opinion. I'm curious to see what's coming down the pike in a few months, but I guess it might be a moot point for me now. Hopefully, it is kinder and gentler and of less duration. While it wasn't a walk in the park for me, it was very doable, particularly as I was growing sicker from the Hep and that's now not hanging over my head. I'm very, very thankful. So yes, for me at least, it took a little over 2 months for the symptoms of S & O to go away for the most part. Considering that I took it for 3 months I figure that's not too bad. While I was on it I ate with my meds that I took every day around the same time (at around 2 pm) and I took both together, that's what the distributing pharmacy told me to do, to pick a time of day and stick to that and take them together.
I drank a lot of water (with a splash of black cherry juice for flavoring, but just a little bit). I ate and ate and gained weight (but I was and continue to be just a few pounds over my ideal weight, which I think held me in good stead, from all I've read, my doc agrees with this too) I tended to eat pretty well, but I've eaten pretty well for a long time now (since my 20s) so I'm used to it. I figure to eat well on anything, drugs or no drugs, well help you anyway -- But I'm not a Monk...;-)
I was a bit slammed on the drugs, so I couldn't do a lot of exercise if I wanted to, but I stretched and did what I could without overdoing it. The first month off was a bit hellish for me, but I was mostly okay with that because I knew there would be an endpoint. When you know there is an endpoint, at least for me...It gives me the will to go on and just deal with the best I could. And yes, that endpoint came and went, I really don't feel the effect from the meds anymore, not to any great extent. So my recommendation is just to keep the faith, watch a lot of great, funny movies that give you an up attitude, etc. I'm really glad I had my dog here to distract me too, she was great for me. (I don't have kids) I think things that take you out of yourself and your own mind and troubles are key. I did a lot of guided meditations with my ipod and tablet, that helps me a lot. Guess other people have prayer, etc.
And like I said, I read these boards a lot from time to time..This one and others, and I think just from my own observations, that most people taking this tx don't have a lot of downside to them. During or after. I think that those of us who did are in the minority, not majority. But that's just my own observation and I'm sure no expert. Funny how they don't keep a lot of records of patient symptoms, before and after treatment, not that I've seen anyway. That's why these boards with patients' own experiences are so important to me. It did make me feel far less alone with this and I'm grateful to them.
I'm F1 liver damage. Female, 5'6, 135 pounds, 61 years old (I know if I was 20 years young I would have sailed through this a lot easier, but that's just my own opinion) in fairly good shape before I started treatment, have had hep for at least 30 years, if not more. So glad that it looks like it's gone...
The last couple of days I've felt extremely tired around 5pm, I take meds at 7pm, and feel real achy and cold. Also, arthritis pain is back with a vengeance. Drinking lots of water though. Oh, I also crave sugar like crazy. I've been thinking about going over to the bakery and buying an entire lemon meringue pie. Such are my fantasies lately. :)
Does anyone else on Sovaldi/Olysio crave sugar?
Mostly, I'm bumping this thread up so that anyone else with these symptoms knows they're not alone. However, I think most people are going for the new and better Sovaldi around this time.
Does anyone else on Sovaldi/Olysio crave sugar?
Mostly, I'm bumping this thread up so that anyone else with these symptoms knows they're not alone. However, I think most people are going for the new and better Sovaldi around this time.
Kim, I would be willing to hibernate for three months if need be. :)
I'm kind of a toes in first to test the waters kind of girl and now that I'm in my second week I feel pretty safe. My biggest problem right now is how irritated I get with people. Have I said that before? she said smiling.
I'm kind of a toes in first to test the waters kind of girl and now that I'm in my second week I feel pretty safe. My biggest problem right now is how irritated I get with people. Have I said that before? she said smiling.
i did n't have any sides except very tired ... I used sunscreen and didn't "lay out" or go swimming.
6 weeks since eot and feeling lots of energy.. yippeeeeee
6 weeks since eot and feeling lots of energy.. yippeeeeee
The hardest part of Tx is always getting started. Once your underway its easy to figure out how to not let the Sx get the better of you. One thing that you and Randy need to know is that these drugs will not harm you and the unpleasant Sx are only temporary. Every time you take a pill keep in mind that it is saving your life. When you think about your own life-span, a couple of months of down time is so worth a life time of renewed health. We are so very lucky as researchers have finally broken the code and we can now be cured.
We are your support team and will be with you all the way. No question or concern will go unanswered. Personally it would have been a scary situation had it not been for the caring and compassionate fellow friends that helped me from the beginning. You will have some ups and down along the way, but in the end it is so worth it, as you reclaim your life.
Keep the faith
.....Kim
We are your support team and will be with you all the way. No question or concern will go unanswered. Personally it would have been a scary situation had it not been for the caring and compassionate fellow friends that helped me from the beginning. You will have some ups and down along the way, but in the end it is so worth it, as you reclaim your life.
Keep the faith
.....Kim
Hey there! I am so glad you started this, it will help a lot of people to see that you are doing well.
Everyone is nervous before they start, everyone.
It is the unknown, it sounds like you are doing great. Please keep in touch, let everyone know how you are doing.
Ranman you are up next :) I will be looking for your posts as well :)
Everyone is nervous before they start, everyone.
It is the unknown, it sounds like you are doing great. Please keep in touch, let everyone know how you are doing.
Ranman you are up next :) I will be looking for your posts as well :)
Thanks for the info. I will let you know how I feel, it just seems like part
of me can't wait to get started and the other part is the unknown. Heres
to more smooth sailing for you. SVR is the goal!
of me can't wait to get started and the other part is the unknown. Heres
to more smooth sailing for you. SVR is the goal!
Hi Randy,
Welcome!
I am on my 7th day and really have nothing bad to report. I feel like I'm stoned most the time and am tired all the time and have a little bit of nausea off and on. I take both pills at 7pm so that I won't be so tired all day. It seems like men have an easier time of it because most of the ones I know have no side effects whatsoever. Hopefully, you will be one of those. Here's to hoping we both reach SVR with no problems.
Welcome!
I am on my 7th day and really have nothing bad to report. I feel like I'm stoned most the time and am tired all the time and have a little bit of nausea off and on. I take both pills at 7pm so that I won't be so tired all day. It seems like men have an easier time of it because most of the ones I know have no side effects whatsoever. Hopefully, you will be one of those. Here's to hoping we both reach SVR with no problems.
On 10/2/14 I will start Solvaldi and Olysio,Genotype 1 with cirrhosis 3
I believe I've had it at least 20-25 years,pure luck in March I went in for a
physical and enzyme levels were at 300. Went to GI and they ran all the tests and seem cancer free so far,I'm not really worried about side effects,I just want to kick this damn disease, so how should I take care of myself
physically and mentally once I start the meds? I am really moved reading about all the people who are fighting
this awful virus. God Bless, Randy
I believe I've had it at least 20-25 years,pure luck in March I went in for a
physical and enzyme levels were at 300. Went to GI and they ran all the tests and seem cancer free so far,I'm not really worried about side effects,I just want to kick this damn disease, so how should I take care of myself
physically and mentally once I start the meds? I am really moved reading about all the people who are fighting
this awful virus. God Bless, Randy
Thanks Tammy. I like the choo choo train analogy and I'm sure I'll think of it every time I take the pills.
Part of my problem is that my doctor is not available. He's with one of those clinic factories imo, but who needs him anyway. I have the people here. I was fortunate in that my insurance called me to say I was approved. The doctor's office had no clue.
Part of my problem is that my doctor is not available. He's with one of those clinic factories imo, but who needs him anyway. I have the people here. I was fortunate in that my insurance called me to say I was approved. The doctor's office had no clue.
Sorry to hear you were taken off , the new meds coming soon are suppose to be better with less sides. Take care.
If you look at the top of the page you'll see, Post a Comment.
If your logged in you can start your own thread. That way you'll get your own comments. No one but the ones that click on Rubey_Jack's thread will see your comment. Start your own. You'll see what I mean by the people that really out of the goodness of their hearts give information, not per say professional, but through experience. In my own opinion (IMOO) or honest opinion.
If your logged in you can start your own thread. That way you'll get your own comments. No one but the ones that click on Rubey_Jack's thread will see your comment. Start your own. You'll see what I mean by the people that really out of the goodness of their hearts give information, not per say professional, but through experience. In my own opinion (IMOO) or honest opinion.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
I too my 600mg Riba in the morning when I woke up. The Solv and Oly around lunch time and 400 Riba around dinner. I also experienced minor insomnia from the Riba so a Melatonin fixed that problem.
Travel was a non issue. I just brought enough for the trip so I wouldn't lose them all if my luggage was lost for whatever reason.
You can call the number of the company (Express Scripts/Accredo in my case) and they can answer any question you have. They amazed me with their thoroughness and personal attention to you as a patient.