Aa
My SOVALDI/OLYSIO Treatment Experience!
Hi! I began my treatment with Sovaldi and Olysio 21 days ago, and I'm doing great. I have not had ANY side effects, and simply feel normal, or perhaps a bit more clear-headed and energetic. I had my two week labs done, and the results have absolutely amazed me -- all results (ALT, AST, etc) are within the normal range, and my viral load (formerly 789000) is undetectable!
I so hope that you all can get this or one of the newer treatments coming out this summer. I was treatment naive, having learned in 2006 that I was hep-c positive, from a blood transfusion I'd received 25 years earlier. Everyone, please remember, if you had a blood transfusion before 1992, you should be tested for Hepatitis! I'm very lucky to have a top doc and great insurance.
I so hope that you all can get this or one of the newer treatments coming out this summer. I was treatment naive, having learned in 2006 that I was hep-c positive, from a blood transfusion I'd received 25 years earlier. Everyone, please remember, if you had a blood transfusion before 1992, you should be tested for Hepatitis! I'm very lucky to have a top doc and great insurance.
Thank you so very much for sharing! This is great news and will be really helpful for others.
Congratulations!
Dee
Congratulations!
Dee
Thank you for sharing
I finished Sovaldi and olysio two and 1/2 weeks ago
I am still undetected 4/8 and 12 weeks
But the real test will be 12 weeks after to be considered SVR
I had pretty bad fatigue, but that's pretty much it (maybe a few nights of insomnia too)
Not bad for a cure, 3 weeks after treatment blood test still clear!!
Biggest warning stay out of the sun, or long sleeves and sunscreen, and sunglasses,
I finished Sovaldi and olysio two and 1/2 weeks ago
I am still undetected 4/8 and 12 weeks
But the real test will be 12 weeks after to be considered SVR
I had pretty bad fatigue, but that's pretty much it (maybe a few nights of insomnia too)
Not bad for a cure, 3 weeks after treatment blood test still clear!!
Biggest warning stay out of the sun, or long sleeves and sunscreen, and sunglasses,
Thank-you Candyce!
I have had some insomnia too, but not every night, thankfully. I will be careful in the sun, and I appreciate your advice. I will be praying for your continued SVR. Please keep us all posted as you get re-tested!
I have had some insomnia too, but not every night, thankfully. I will be careful in the sun, and I appreciate your advice. I will be praying for your continued SVR. Please keep us all posted as you get re-tested!
Hi
I am Robin , new to the forum. What genotype are you? my doctor says I have to do the interferon, ribiavirin and one other prescription treatment.
I am Robin , new to the forum. What genotype are you? my doctor says I have to do the interferon, ribiavirin and one other prescription treatment.
HI Robin, HI Boobert -
I am genotype 1B. Robin - I agree with Boobert's reply - I've never experienced the impact of riba or interferon, but the experience of most who have taken them is pretty negative.
Maybe your doctor doesn't know how to acquire 'off-label' meds for you. Both of the drugs I take, Solvaldi and Olysio have been FDA approved, but they didn't receive any specific FDA approval to be used together, making them 'off-label' when used together. Either get a 2nd opinion from a doctor who specializes in Hepatitis from a well respected hospital in the largest city near you, or wait until later this year when the new, one pill a day therapy comes onto the market from another major pharmaceutical company. (Abbvie, I believe). My understanding is that the upcoming pill is similar in content to the two drugs I'm now taking.
Btw…. Viral load was undetectable at 2 weeks, ALT and AST were normal, and I'm feeling great! No major side effects, and I feel energetic on most days.
Good Luck!!
I am genotype 1B. Robin - I agree with Boobert's reply - I've never experienced the impact of riba or interferon, but the experience of most who have taken them is pretty negative.
Maybe your doctor doesn't know how to acquire 'off-label' meds for you. Both of the drugs I take, Solvaldi and Olysio have been FDA approved, but they didn't receive any specific FDA approval to be used together, making them 'off-label' when used together. Either get a 2nd opinion from a doctor who specializes in Hepatitis from a well respected hospital in the largest city near you, or wait until later this year when the new, one pill a day therapy comes onto the market from another major pharmaceutical company. (Abbvie, I believe). My understanding is that the upcoming pill is similar in content to the two drugs I'm now taking.
Btw…. Viral load was undetectable at 2 weeks, ALT and AST were normal, and I'm feeling great! No major side effects, and I feel energetic on most days.
Good Luck!!
Robin,
If you have a private insurance you can call Sovaldi and Olysio yourself and
they are going to pre-approve you and then just wait for your doctors' script.
get on their sites and you will find what genotypes the treatment is good for...
Don't do interferron, it is brutal!!! and leaves you sick and does not help a lot of people at all. I did it for 6 months and have had health issues for 15 years after that.....
Especially if you have never been treated. These days a lot of good and low side effects drugs are coming out this year if it is not this one...you are going to be eligible for the next one...but you can do all the leg work yourself if you doctor is reluctant. I am 1b...
If you have a private insurance you can call Sovaldi and Olysio yourself and
they are going to pre-approve you and then just wait for your doctors' script.
get on their sites and you will find what genotypes the treatment is good for...
Don't do interferron, it is brutal!!! and leaves you sick and does not help a lot of people at all. I did it for 6 months and have had health issues for 15 years after that.....
Especially if you have never been treated. These days a lot of good and low side effects drugs are coming out this year if it is not this one...you are going to be eligible for the next one...but you can do all the leg work yourself if you doctor is reluctant. I am 1b...
I am 1960 as well: read this...not sure the other port reached you:
Robin,
If you have a private insurance you can call Sovaldi and Olysio yourself and they are going to pre-approve you and then just wait for your doctors' script.
get on their sites and you will find what genotypes the treatment is good for...
Don't do interferron, it is brutal!!! and leaves you sick and does not help a lot of people at all. I did it for 6 months and have had health issues for 15 years after that.....
Especially if you have never been treated. These days a lot of good and low side effects drugs are coming out (this year and next year)if it is not this one...you are going to be eligible for the next one...but you can do all the leg work yourself if you doctor is reluctant. I am 1b...
Robin,
If you have a private insurance you can call Sovaldi and Olysio yourself and they are going to pre-approve you and then just wait for your doctors' script.
get on their sites and you will find what genotypes the treatment is good for...
Don't do interferron, it is brutal!!! and leaves you sick and does not help a lot of people at all. I did it for 6 months and have had health issues for 15 years after that.....
Especially if you have never been treated. These days a lot of good and low side effects drugs are coming out (this year and next year)if it is not this one...you are going to be eligible for the next one...but you can do all the leg work yourself if you doctor is reluctant. I am 1b...
I was 1b, for 43 years, cleared with Sovaldi and olysio 12 weeks ,end of treatment labs were undetected so i am finished with treatment,
But final SVR labs in 10 weeks to be sure it's official then
I agree I never did interferon ( can not I have auto immune disease) heard from people that did it was terrible
But final SVR labs in 10 weeks to be sure it's official then
I agree I never did interferon ( can not I have auto immune disease) heard from people that did it was terrible
I contracted hep c in the US Army due to medical malpractice and also type 2 diabetes due to agent orange. The VA refuses to accept any responsibility and denied my claims for disability. That agency is so corrupt and incompetent that I have given up on them and the rest of the country as well. I haven't voted in a single "election" in the past 10 years.....what's the use? When they're done with you; they just want you to die and go away.
My liver enzymes and such look OK. there are some small fatty areas but no liver damage or cerosis. sorry bout the spelling....spell check don't know either!?
About 10 years ago I started on Pegasys and interferon injections. The doctor I had at the time refused to treat the bone pain and extreme nausea. After 3 weeks I told him I would rather die than continue with that level of suffering with such a low probability of a successful outcome.
8 weeks ago my new doctor told me about Solvaldi and Ribavrin and the real possibility of a cure with minimal side effects.
My viral load before treatment was 1,600,000+. I was a little on the anemic side before I started but my red blood cell count is still at an acceptable level. My platelets were a little low before treatment, 8 weeks in they have risen modestly, which typically go down.
My viral load after 8 weeks is less than 15 and undetectable in some tests.
I can't say I feel "great". The insomnia is 3 and more nights a week. I have no problem falling asleep as I am totally exhausted by 2PM every day. I just wake up a odd hours between midnight and 2AM, and can't go back to sleep.
I am still trying to go to work. About 3 days a week is all I can muster.
There are very few bouts of nausea and vomiting. When it comes; there is hell to pay.
Before I started treatment I was injecting 20 units of 75/25 humulin in the am and 15 units in the PM. I have halved my insulin dosage and still crashed today with a blood glucose level of 60. I guess I'll have to cut back some more.
I am experiencing a certain level of unexplained anxiety and general nervousness in the AM. usually by lunch time it is gone and exhaustion begins to set in. My doctor said this is one of the side effects. Some patients are showing some aggressive behaviour. He said I can call him at any time if I get concerned.....Great Doctor!
As the only patient in this practice who is an insulin dependent diabetic, my doctor can only assume the Solvaldi might be the reason I need less insulin at this time.
It's not a walk in the park by any means. This is one I can tough out because a real cure is right around the corner. I end treatment in September. I should know if the cure is successful right around Christmas time! I couldn't think of a better gift!
I am a 66 year old male in fairly good shape except for a few blown disks in my neck and lower back. I also suffer from "low T" and inject doctor prescribed testosterone on a weekly schedule which helps my energy level. When I add 2 extra mg to my prescribed dose I can work a few more hours a week.
I can't afford to retire and must work till I either get run off or drop dead on the job. Social Security is not a liveable income. For any guy that's been through a nasty divorce.....you know what I'm talking about!
My liver enzymes and such look OK. there are some small fatty areas but no liver damage or cerosis. sorry bout the spelling....spell check don't know either!?
About 10 years ago I started on Pegasys and interferon injections. The doctor I had at the time refused to treat the bone pain and extreme nausea. After 3 weeks I told him I would rather die than continue with that level of suffering with such a low probability of a successful outcome.
8 weeks ago my new doctor told me about Solvaldi and Ribavrin and the real possibility of a cure with minimal side effects.
My viral load before treatment was 1,600,000+. I was a little on the anemic side before I started but my red blood cell count is still at an acceptable level. My platelets were a little low before treatment, 8 weeks in they have risen modestly, which typically go down.
My viral load after 8 weeks is less than 15 and undetectable in some tests.
I can't say I feel "great". The insomnia is 3 and more nights a week. I have no problem falling asleep as I am totally exhausted by 2PM every day. I just wake up a odd hours between midnight and 2AM, and can't go back to sleep.
I am still trying to go to work. About 3 days a week is all I can muster.
There are very few bouts of nausea and vomiting. When it comes; there is hell to pay.
Before I started treatment I was injecting 20 units of 75/25 humulin in the am and 15 units in the PM. I have halved my insulin dosage and still crashed today with a blood glucose level of 60. I guess I'll have to cut back some more.
I am experiencing a certain level of unexplained anxiety and general nervousness in the AM. usually by lunch time it is gone and exhaustion begins to set in. My doctor said this is one of the side effects. Some patients are showing some aggressive behaviour. He said I can call him at any time if I get concerned.....Great Doctor!
As the only patient in this practice who is an insulin dependent diabetic, my doctor can only assume the Solvaldi might be the reason I need less insulin at this time.
It's not a walk in the park by any means. This is one I can tough out because a real cure is right around the corner. I end treatment in September. I should know if the cure is successful right around Christmas time! I couldn't think of a better gift!
I am a 66 year old male in fairly good shape except for a few blown disks in my neck and lower back. I also suffer from "low T" and inject doctor prescribed testosterone on a weekly schedule which helps my energy level. When I add 2 extra mg to my prescribed dose I can work a few more hours a week.
I can't afford to retire and must work till I either get run off or drop dead on the job. Social Security is not a liveable income. For any guy that's been through a nasty divorce.....you know what I'm talking about!
I'm sorry to hear about your experience with the VA. I am always left stunned and speechless when I hear examples about how our vets have been treated in the past 15 years.
I hope that this will be the treatment that works for you! I don't have to take riba, just olysio and solvaldi, so our treatments are a bit different, but I'll be hoping that yours will cure you completely and be easy enough to see it through until September.
It's great that you have a good doctor now, and that you two have such a good rapport!
Fingers crossed that all goes optimally for you!!
I hope that this will be the treatment that works for you! I don't have to take riba, just olysio and solvaldi, so our treatments are a bit different, but I'll be hoping that yours will cure you completely and be easy enough to see it through until September.
It's great that you have a good doctor now, and that you two have such a good rapport!
Fingers crossed that all goes optimally for you!!
I am 1a, never treated, cirrhotic, and just started Sovaldi/Olysio. I waited, perhaps rashly since the HCV became cirrhotic, for new meds to be approved. I was not willing to take interferon regimen, and my hepatologist supported me. I am not in the genotype that had an acceptable level of response/cure from the old interferon regimens. HCV was diagnosed about 15 years ago -- hospital acquired probably 30 years ago before/during a surgery.
As others have said, there are more effective, much less brutal tx options now - see another doctor for second opinion.
As others have said, there are more effective, much less brutal tx options now - see another doctor for second opinion.
I don't think I said what genome type I have. It is type 1. I am not going to take my AM insulin injection today (I'll be home all day) and see what happens. My doctor said it would be better if my glucose level was around 150 to 160. Right now I am taking in extra carbs to get my sugar levels up when it gets too low.
Now that I am really paying attention to my diabetes; I've realized it can become complicated. I don't think taking in more sugar to counter the effects of the insulin is the best approach, or the healthiest.
As for the VA: I lost 2 friends due to post surgery infections because they wouldn't see them until their next scheduled appointments! WTF? a 6 week wait to treat gangrene is 100% fatal! I don't want their alleged "doctors" to treat me, I just want the money to offset the cost to myself and the private sector. The VA is all about money and how to evade their moral responsibilities by forcing their responsibilities into the private sector so they don't have to pay.
When a "sacrifice" is forced on you: and it is not your choice; IT IS TYRANNY!
When younger people approach me and ask about military service: I tell them of my experiences and the other malicious actions of the military and no VA support: they are convinced that there is no up side to joining. About the best I can get from my bronze star is a cup of coffee from McDs so long as I got 2 bucks to go with it. Their medals mean nothing when you realize you were just a patsy in a war mongering empire that has no moral compass!
Now that I am really paying attention to my diabetes; I've realized it can become complicated. I don't think taking in more sugar to counter the effects of the insulin is the best approach, or the healthiest.
As for the VA: I lost 2 friends due to post surgery infections because they wouldn't see them until their next scheduled appointments! WTF? a 6 week wait to treat gangrene is 100% fatal! I don't want their alleged "doctors" to treat me, I just want the money to offset the cost to myself and the private sector. The VA is all about money and how to evade their moral responsibilities by forcing their responsibilities into the private sector so they don't have to pay.
When a "sacrifice" is forced on you: and it is not your choice; IT IS TYRANNY!
When younger people approach me and ask about military service: I tell them of my experiences and the other malicious actions of the military and no VA support: they are convinced that there is no up side to joining. About the best I can get from my bronze star is a cup of coffee from McDs so long as I got 2 bucks to go with it. Their medals mean nothing when you realize you were just a patsy in a war mongering empire that has no moral compass!
Thank-you for your service to our country, Scooterkim, on this day and everyday!
I hope that you are doing well, and that you will have a good week!
I hope that you are doing well, and that you will have a good week!
Please explain the issue with being in the sun, no one has told me this and I've been in the sun a lot 4 weeks on o/s
Hi Sober
That concern about sun exposure can be found in the full prescribing information:
http://www.olysio.com/shared/product/olysio/prescribing-information.pdf
"Photosensitivity: Serious photosensitivity reactions have been observed during
combination therapy with OLYSIO, peginterferon alfa and ribavirin. Use sun
protection measures and limit sun exposure. Consider discontinuation if a
photosensitivity reaction occurs. (5.2)"
I also found:
"Dermatologic
Fifty-six percent (56%) of rash events occurred in the first 4 weeks; 42% in the first 2 weeks. Most rash events were of mild or moderate severity. Severe rash was reported in 1% of subjects. Simeprevir was discontinued due to rash in 1% of subjects. The frequencies of rash and photosensitivity reactions were higher in subjects with higher simeprevir (the active ingredient contained in Olysio) exposures.
All trial subjects were directed to use sun protection measures. Most photosensitivity reactions were of mild or moderate severity. Two subjects had photosensitivity reactions that required hospitalization.
Very common (10% or more): Rash (including photosensitivity; term includes rash, erythema, eczema, maculopapular rash, macular rash, dermatitis, papular rash, skin exfoliation, pruritic rash, erythematous rash, urticaria, generalized rash, drug eruption, allergic dermatitis, dermatosis, vasculitic rash, toxic skin eruption, exfoliative rash, generalized erythema, dermatitis exfoliative, cutaneous vasculitis, photosensitivity reaction, polymorphic light eruption, solar dermatitis, photodermatosis, sunburn; 28%), pruritus (term includes pruritus, generalized pruritus; 22%)
Common (1% to 10%): Photosensitivity (5%)"
Just something to be aware of and take appropriate measures. I like in WA state so not as much of a problem here yet anyway still raining here lol
Good luck on treatment
Lynn
That concern about sun exposure can be found in the full prescribing information:
http://www.olysio.com/shared/product/olysio/prescribing-information.pdf
"Photosensitivity: Serious photosensitivity reactions have been observed during
combination therapy with OLYSIO, peginterferon alfa and ribavirin. Use sun
protection measures and limit sun exposure. Consider discontinuation if a
photosensitivity reaction occurs. (5.2)"
I also found:
"Dermatologic
Fifty-six percent (56%) of rash events occurred in the first 4 weeks; 42% in the first 2 weeks. Most rash events were of mild or moderate severity. Severe rash was reported in 1% of subjects. Simeprevir was discontinued due to rash in 1% of subjects. The frequencies of rash and photosensitivity reactions were higher in subjects with higher simeprevir (the active ingredient contained in Olysio) exposures.
All trial subjects were directed to use sun protection measures. Most photosensitivity reactions were of mild or moderate severity. Two subjects had photosensitivity reactions that required hospitalization.
Very common (10% or more): Rash (including photosensitivity; term includes rash, erythema, eczema, maculopapular rash, macular rash, dermatitis, papular rash, skin exfoliation, pruritic rash, erythematous rash, urticaria, generalized rash, drug eruption, allergic dermatitis, dermatosis, vasculitic rash, toxic skin eruption, exfoliative rash, generalized erythema, dermatitis exfoliative, cutaneous vasculitis, photosensitivity reaction, polymorphic light eruption, solar dermatitis, photodermatosis, sunburn; 28%), pruritus (term includes pruritus, generalized pruritus; 22%)
Common (1% to 10%): Photosensitivity (5%)"
Just something to be aware of and take appropriate measures. I like in WA state so not as much of a problem here yet anyway still raining here lol
Good luck on treatment
Lynn
There is a BIG warming on the olysio website, and under warnings and contraindications , on the paperwork
You can Burn very Bradley without proper sun block long sleeves hats etc
I know some people on another hep c website who have burned from sun exposure . Be careful
Surprised your md did not tell you
Mine did, to be careful
You can Burn very Bradley without proper sun block long sleeves hats etc
I know some people on another hep c website who have burned from sun exposure . Be careful
Surprised your md did not tell you
Mine did, to be careful
Hi All -
Just had my one month check-up. The lab work all continues to look good - everything is within normal ranges, and viral load is undetected! My doc assumes treatment will continue uneventfully, and I will be undetected throughout the rest of treatment, and hopefully at the 12-week point as well. For those still waiting, sovaldi and the new combo drug (begins with an L*) is on it's way, and should be available by year's end, or earlier! That has a 90% cure rate! REMEMBER - if you, your friends, or family have had a blood transfusion before 1992 - get tested! There has never been an easier time to be cured!
Stay well, and good luck everyone!
Just had my one month check-up. The lab work all continues to look good - everything is within normal ranges, and viral load is undetected! My doc assumes treatment will continue uneventfully, and I will be undetected throughout the rest of treatment, and hopefully at the 12-week point as well. For those still waiting, sovaldi and the new combo drug (begins with an L*) is on it's way, and should be available by year's end, or earlier! That has a 90% cure rate! REMEMBER - if you, your friends, or family have had a blood transfusion before 1992 - get tested! There has never been an easier time to be cured!
Stay well, and good luck everyone!
Hi Candyce and Everyone -
Well, I am almost at the end of two months on Sovaldi/Olysio. I'm feeling so much more fatigued than I'd expected, and I'm also experiencing daily aching and soreness across my pelvic area. My right knee has become arthritic, and I have fierce shin splints on the right leg as well. Yeesh - it must sound like I'm completely falling apart! Lol. However, this lethargy and achiness is really pulling me down.
I'll get blood work done later this week. 4-week readings were good, and the Fiberscan was good also.
Are any of you who are on Sovaldi/Olysio experiencing these types of side effects? I'd really like to hear from you, whether you have or you haven't! I'd also love to hear from any of you who have finished this tx, and can let me know how you all feel now. Thanks!! I hope that everyone on this site is doing well, and that the love and laughter of good friends brightens each day for you all. I look forward to hearing from you! :)
Well, I am almost at the end of two months on Sovaldi/Olysio. I'm feeling so much more fatigued than I'd expected, and I'm also experiencing daily aching and soreness across my pelvic area. My right knee has become arthritic, and I have fierce shin splints on the right leg as well. Yeesh - it must sound like I'm completely falling apart! Lol. However, this lethargy and achiness is really pulling me down.
I'll get blood work done later this week. 4-week readings were good, and the Fiberscan was good also.
Are any of you who are on Sovaldi/Olysio experiencing these types of side effects? I'd really like to hear from you, whether you have or you haven't! I'd also love to hear from any of you who have finished this tx, and can let me know how you all feel now. Thanks!! I hope that everyone on this site is doing well, and that the love and laughter of good friends brightens each day for you all. I look forward to hearing from you! :)
Hi there Rikee I am very sorry about what you are going thru, I didn't have the aches, but know allot of other people on another group that did
I did have allot of fatigue, more than ever, couldn't function well at all
But I was undetected at 4/8/12 weeks on treatment
And finished May 5th
And was undetected at 4 weeks after treatment ended
Waiting to do 8 week after in another week
Hang in there
It is worth it!!
Xoxox
Ch
I did have allot of fatigue, more than ever, couldn't function well at all
But I was undetected at 4/8/12 weeks on treatment
And finished May 5th
And was undetected at 4 weeks after treatment ended
Waiting to do 8 week after in another week
Hang in there
It is worth it!!
Xoxox
Ch
Hi Candyce!
Thanks so much for your reply! The extra information and support is really helpful. Let me know how your 8 week labs are - I'll be looking forward to hearing more good news! :) :) :)
Thanks so much for your reply! The extra information and support is really helpful. Let me know how your 8 week labs are - I'll be looking forward to hearing more good news! :) :) :)
Candyce,
I was wondering if you had any issues with your BP going much higher thatn usual in your second month of treatment.
I am doing great tes twise I am still detected (very very low at 15 - have a great lab) at day 32...but hoping that it will go away in a couple of days...everything else is normalizing too...
All of a sudden BP went up to 200/110 with a headche and I thew up several times...and it would not go down even though I have been on a BP pill for 2/1/2 years....second pill did not help either....
Let me know if you remember anyone sharing this .....
Otherwise good luck to all of my fellow offlabelers for sOVALDI/OLYSIO and the rest of fighters...
Lets hope we are close to recovery....
Optimist3
I was wondering if you had any issues with your BP going much higher thatn usual in your second month of treatment.
I am doing great tes twise I am still detected (very very low at 15 - have a great lab) at day 32...but hoping that it will go away in a couple of days...everything else is normalizing too...
All of a sudden BP went up to 200/110 with a headche and I thew up several times...and it would not go down even though I have been on a BP pill for 2/1/2 years....second pill did not help either....
Let me know if you remember anyone sharing this .....
Otherwise good luck to all of my fellow offlabelers for sOVALDI/OLYSIO and the rest of fighters...
Lets hope we are close to recovery....
Optimist3
Very important call your md about this !!!!
I didn't have elevated BP
It is possible the hep c meds are interfering with your blood pressure meds or vice versa
You need to go over this with your md ASAP
Keep me posted
Xox CH
I didn't have elevated BP
It is possible the hep c meds are interfering with your blood pressure meds or vice versa
You need to go over this with your md ASAP
Keep me posted
Xox CH
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