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Sovaldi/Olysis fatigue
Hi,this is my first post...although I have been reading you guys for some time.I am Genotype 1 and started my Sovaldi/Olysio treatment on January 24,2014. The first 4 weeks of treatment was awesome and nothing compared to the Peg,Interferon and Ribavirus;which was absolutely awful and I became suicidal and couldn't continue after only 3 weeks.I am now in my 9th week of the 12 regimen and there are times that I feel so very fatigued.Has anyone,had this response after the first 3 or 4 weeks of this regimen.
Best Answer
I am also Type 1a and on Sovaldi/Olysio, in the middle of my third week. I started out week 1 with lots of energy but now am experiencing a lot of fatigue. Some days worse than others. Just try to listen to your body and rest when you feel you need it. It's a small price to pay for a chance at The Cure! Keep your eye on the prize, we are so lucky to have been approved for this treatment!!
Congrats on finishing tx! Waiting to hear your good results:-)
I'm done too, now the waiting begins for the rest of the results. Next month hurry and get here!
I'm done too, now the waiting begins for the rest of the results. Next month hurry and get here!
Hi Peter, funny I look back at my post from 4/15, and I have crashed, totally exhausted, major fatigue, and then up again, the yo yo syndrome
But I guess what goes up must come down !
Thank you for those suggestions for after treatment , if I am still fatigued
Which I assume with the auto immune stuff I will still have
So thank you
Xoxo
Oh 8 week labs still undetected , and 11 days to go :-))
But I guess what goes up must come down !
Thank you for those suggestions for after treatment , if I am still fatigued
Which I assume with the auto immune stuff I will still have
So thank you
Xoxo
Oh 8 week labs still undetected , and 11 days to go :-))
Hi Candyce,
Sorry it took so long to get back to you. I don't know much about PBC but it seems like it is an auto immune thing? If so..things that modulate the immune system might help. LDN (low dose naltrexone) works for some auto immune illnesses. Many people with MS benefit. Also Chaga mushroom dual extracted form is supposed to modulate the immune system.
I'm far from a doctor though and the immune system is very complex so I would research anything very well before I took it. There are some warnings that chaga isn't good for people taking immune suppressant meds for any reason.
LDN has worked wonders for me in terms of fatigue and getting rid of all the aches and pains that come along with HCV and cirrhosis. But it interferes with sleep for some people (like me) and so I have to take it in the morning and at lower doses)I take between 1.5-2.0mg.
It sounds like you are doing well with these new meds..Grrreat!
Not much longer for you to go. I'm on day 14 and get my first bloodwork tomorrow.
Keep us posted on how it's going!
Cheers!
Peter
Sorry it took so long to get back to you. I don't know much about PBC but it seems like it is an auto immune thing? If so..things that modulate the immune system might help. LDN (low dose naltrexone) works for some auto immune illnesses. Many people with MS benefit. Also Chaga mushroom dual extracted form is supposed to modulate the immune system.
I'm far from a doctor though and the immune system is very complex so I would research anything very well before I took it. There are some warnings that chaga isn't good for people taking immune suppressant meds for any reason.
LDN has worked wonders for me in terms of fatigue and getting rid of all the aches and pains that come along with HCV and cirrhosis. But it interferes with sleep for some people (like me) and so I have to take it in the morning and at lower doses)I take between 1.5-2.0mg.
It sounds like you are doing well with these new meds..Grrreat!
Not much longer for you to go. I'm on day 14 and get my first bloodwork tomorrow.
Keep us posted on how it's going!
Cheers!
Peter
I know.I finish treatment tomorrow and will see my doctor on Monday...I still have a jittery feeling in my stomach.Hoping for the continuing best.
We are almost there! The finish line is staring at us and waving us over now, see you there I'm one day behind you :-)
We should have our one month PCR post tx about the same time too, can't wait to celebrate, and will put on my dancing shoes! The shoes have been in hiding for all these years ready to be used for this occasion :-) haha
We should have our one month PCR post tx about the same time too, can't wait to celebrate, and will put on my dancing shoes! The shoes have been in hiding for all these years ready to be used for this occasion :-) haha
Y'know...I still have episodes of fatigue...but not like before...it comes and goes for me...but,when I get fatigued...wherever,I take a break or slow down
Drastic change is side effects for me
I am now in Week 9
1) Lots and lots on energy
2) A brain I can multi task and think
3)And the weirdest thing is a libido
Would of thought I was crazy but on another support group 6 other people , men and woman saying same thin
Yeah!!!!!'
I am now in Week 9
1) Lots and lots on energy
2) A brain I can multi task and think
3)And the weirdest thing is a libido
Would of thought I was crazy but on another support group 6 other people , men and woman saying same thin
Yeah!!!!!'
week 4
feeling really crappy
very run down and tired
Trying to work but I just get exhausted
hoping for imporoved results in a week or 2
feeling really crappy
very run down and tired
Trying to work but I just get exhausted
hoping for imporoved results in a week or 2
3 doses,3 days to go....I'm heading to the finish line...nervously excited and apprehensive...on to the real test...praying that this it IT.
Hi everyone
I'm on week 6 of Sovaldi and Olysio. Had hepc for god knows how long and was never treated, since I'm 1b, and none of the previous treatments really worked for my genotype.
I have cirrhosis and esophogeal varices, which I'm told are very dangerous.
Got my blood drawn 4 weeks in, and viral load came back very low. When I had my apt with the hepatologist 5 days later, he repeated blood test and viral load came back "un detectable". Made me really happy, although we all have to see where we are 6 months after treatment.
I have 10 days left on my second month, and then one more month.
Blessings and gratitude to those who developed these new drugs.
I'm on week 6 of Sovaldi and Olysio. Had hepc for god knows how long and was never treated, since I'm 1b, and none of the previous treatments really worked for my genotype.
I have cirrhosis and esophogeal varices, which I'm told are very dangerous.
Got my blood drawn 4 weeks in, and viral load came back very low. When I had my apt with the hepatologist 5 days later, he repeated blood test and viral load came back "un detectable". Made me really happy, although we all have to see where we are 6 months after treatment.
I have 10 days left on my second month, and then one more month.
Blessings and gratitude to those who developed these new drugs.
My fatigue was the worst first 4 weeks, everyday
Then became more intermittent , with mild insomnia
But I fatigued easily before treatment too
I am now on week 8, and feel less fatigue than in the beginning
I think the extreme was the meds killing the virus, and now am undetected
Fingers crossed it will stay like that for all of us!
Then became more intermittent , with mild insomnia
But I fatigued easily before treatment too
I am now on week 8, and feel less fatigue than in the beginning
I think the extreme was the meds killing the virus, and now am undetected
Fingers crossed it will stay like that for all of us!
After I take my dose of Sovaldi?Olysio today,I will have 9 daily doses to go to complete 12 weeks .I I was extremely fatigued between week 3 and about week 9 !/2... the fatigue just went away.I was clear at 2 weeks and remain clear...will have blood tests later on this month.Then,on my knees,I will wait to see if I have beaten this monster...so,I can begin to live again.
OK
After saying how good I felt, I am officially feeling REALLY tired and run down today
3 weeks of treatment Sovaldi/Olysio
hope it gets better cuz this sure is not fun
After saying how good I felt, I am officially feeling REALLY tired and run down today
3 weeks of treatment Sovaldi/Olysio
hope it gets better cuz this sure is not fun
Ooops! I spoke to soon. I have NOT been approved. The people at Olysio have totally screwed up my chances of getting this drug in a timely manner and, today lied to me about my being approved. They even called my doctor's office and told my doctor I was approved (they claim to have gotten the information from Optimum RX). Only problem: when the doctor tried to put the prescription through it didn't work. And when I called Optimum RX they had a different story. Their prior authorization department still had me down as 'prior authorization pending'. This whole thing is worthy of a new thread. The bottom line: I don't trust (nor have any affinity for) drug companies.
Hi PMCG
Love your blog, I just looked, I like you have hep C an insane amount of time 43 years! I am so impressed with your knowledge about the interaction of the meds and food
I know about the grapefruit and St. John's wart, but wonder about other things, I drink allot of grape juice, and I heard that Seville oranges can be a problem, but don't know about the juice, also in love wasabi peas, I so don't want to mess up my treatment with Sovaldi and Olysio, I want to make sure I eat the right things, have you heard anything about dairy?
I am allergic to wheat so I don't eat that at all
So great to speak with someone who knows about foods
I also have primary Bilary Cirrhosis and hypothyroid ,
I am freaked about the PBC cause that eats up your bile ducts, and other than a possible connection to gluten they don't know what causes it?
Any info you may have I would so appreciate
Thank you :-)
Love your blog, I just looked, I like you have hep C an insane amount of time 43 years! I am so impressed with your knowledge about the interaction of the meds and food
I know about the grapefruit and St. John's wart, but wonder about other things, I drink allot of grape juice, and I heard that Seville oranges can be a problem, but don't know about the juice, also in love wasabi peas, I so don't want to mess up my treatment with Sovaldi and Olysio, I want to make sure I eat the right things, have you heard anything about dairy?
I am allergic to wheat so I don't eat that at all
So great to speak with someone who knows about foods
I also have primary Bilary Cirrhosis and hypothyroid ,
I am freaked about the PBC cause that eats up your bile ducts, and other than a possible connection to gluten they don't know what causes it?
Any info you may have I would so appreciate
Thank you :-)
I was just approved for Sovaldi/Olysio. I am 1b and have had the virus for about 40-45 years and have compensated cirrhosis. I will be starting as soon as my doctors office puts me in touch with the specialty pharmacy that will work with me.
I already have fatigue and insomnia so I am wondering what the treatment will be like. I have not tried any other treatment. I am used to treating symptoms with herbs and supplements and will have to cut those out apparently. I am excited and nervous.
I have spent years fighting to NOT treat with ribavarin and interferon and now am eager to get rid of this damn virus that has caused me so much grief in my life and has resulted in severe liver damage and other problems!
As far as the grapefruit juice goes: These drugs work through the CYPA3 pathway in the liver. That's why no grapefruit juice or St Johns Wort or Milk Thistle or Ginkgo or Medical marijuana, etc as they all affect the CPPA3 pathway. It they stimulate CYPA3...then the drug is broken down faster and you get less..if they inhibit CYPA3 then the drug is broken down slower and you absorb more (stronger side effects). The dosage has been carefully worked out so that you abosrb the amount needed to kill the virus with minimal side effects.
Of course individual variability plays a HUGE role in this with some people having a much more efficient CYPA3 pathway than others. It's also possible to have a modified CYPA3 pathway due to genetic abnormalities. This can be tested for (I think Genova Labs can test for this).
Anyway.. I have a blog I am writing about hepC and I'll be posting there regularly. I have a lot of experience on management of this disease as that has been my life's work since I became disabled by the fatigue and could no longer work in 2002. I know a lot about diet, naturopathic care, supplements, and vitamins. Here's a link to my blog: http://hepcstories.wordpress.com
And I wish a world of good outcomes to all with this disease!
I already have fatigue and insomnia so I am wondering what the treatment will be like. I have not tried any other treatment. I am used to treating symptoms with herbs and supplements and will have to cut those out apparently. I am excited and nervous.
I have spent years fighting to NOT treat with ribavarin and interferon and now am eager to get rid of this damn virus that has caused me so much grief in my life and has resulted in severe liver damage and other problems!
As far as the grapefruit juice goes: These drugs work through the CYPA3 pathway in the liver. That's why no grapefruit juice or St Johns Wort or Milk Thistle or Ginkgo or Medical marijuana, etc as they all affect the CPPA3 pathway. It they stimulate CYPA3...then the drug is broken down faster and you get less..if they inhibit CYPA3 then the drug is broken down slower and you absorb more (stronger side effects). The dosage has been carefully worked out so that you abosrb the amount needed to kill the virus with minimal side effects.
Of course individual variability plays a HUGE role in this with some people having a much more efficient CYPA3 pathway than others. It's also possible to have a modified CYPA3 pathway due to genetic abnormalities. This can be tested for (I think Genova Labs can test for this).
Anyway.. I have a blog I am writing about hepC and I'll be posting there regularly. I have a lot of experience on management of this disease as that has been my life's work since I became disabled by the fatigue and could no longer work in 2002. I know a lot about diet, naturopathic care, supplements, and vitamins. Here's a link to my blog: http://hepcstories.wordpress.com
And I wish a world of good outcomes to all with this disease!
Hi.. I know this is not exactly the topic of this thread but I am wondering, for all of you on the sovaldi/olysio combo- did you have to meet certain criteria to get this as opposed to having to do the interferon/RIBA / sovaldi? My mom has hep c and has never had treatment .. She is 65 and I'm very worried about her handling those poison meds. Also has anyone had any luck with Medicare approving the off label combo? Please let me know! I want to be as prepared as informed as possible for the appt next week. Thanks so much
I am week 8 ( of S+O no RIBA)
I slept all the time first 2-3 weeks,
now have alternating days of very tired and great ( with a sprinkle of insomnia) but I have other auto immune diseases, so hard to tell what are side effects and what are side effects,as fatigue is normal for me,unfortunately , but I love the days with energy!
Was undetected at 4weeks
GT 1B/ TT/ 43 years of Hep C/ hypothyroid / primary Bilary Cirrhosis
I slept all the time first 2-3 weeks,
now have alternating days of very tired and great ( with a sprinkle of insomnia) but I have other auto immune diseases, so hard to tell what are side effects and what are side effects,as fatigue is normal for me,unfortunately , but I love the days with energy!
Was undetected at 4weeks
GT 1B/ TT/ 43 years of Hep C/ hypothyroid / primary Bilary Cirrhosis
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