Aa
Start treatment and have surgery
My husband is seeing doc next week to hopefully start treatment with the newly approved Sofo with RBV and INF. he has issues with his shoulder and thinks he can get surgery for that while starting this treatment. I do not know yet if his doc will prescribe this regimen and even if his insurance will cover it. (Express scripts). From all I have read, for his Hep C genotype 1a, he is going to have to get the INF regardless. Sooooo.....what do you all think. I am so worried about him, when he had is liver biopsy it said he was at a 3/4 ?? Not sure what that means.he has a lot of sensitivity in the area of his liver, and to me, has also appears to have fluid buildup. He looks 8 months pregnant to me, and the way his stomach bulges, i can't believe it is just fat. If it were you would you attempt shoulder surgery while on treatment. When he had his other shoulder done a few years ago, it was a living hell....please please ....tell me what you think. I can't stand to see him in all this pain. He also has much fatigue and sleepless nights and joint pain in general, I try to watch how much Advil he takes, because I know that is not good for the liver.
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Thank you Nan. His doctor described the Sovaldi as taking a "hammer to a cockroach"!!! It is 5:30 am and I am making his breakfast. Almost time for his 6 am meds!! The past week was rough for him and for me, as my mom is very ill and he insisted on going with me to see her 4 hours away by car. Daily activities knock him out and that trip was way too much.
I am thinking of you and your husband and hope things are improving. You both have been through so much. Hugs.
I am thinking of you and your husband and hope things are improving. You both have been through so much. Hugs.
Faith
Undetectable - the definition is "not able to be detected". What a wonderful word to hear in relation to this insidious virus - Hep C. Your husband's virus is "not able to be detected"...let us all take in the power of that and how it can turn someone's entire future around.
Here's to hearing and reading that word more and more as those with Hep C move forward with these new treatments.
Nan
Undetectable - the definition is "not able to be detected". What a wonderful word to hear in relation to this insidious virus - Hep C. Your husband's virus is "not able to be detected"...let us all take in the power of that and how it can turn someone's entire future around.
Here's to hearing and reading that word more and more as those with Hep C move forward with these new treatments.
Nan
I am excited to report my husband is undetectable!!! He will be at week 6 on Friday, but has been undetectable after the 4th week. We got the results yesterday. We still have a way to go and keeping close eye on his hemoglobin and platelets, so far he is still on the highest dose of RBV at 1200 mg a day along with the weekly Pegasus shot and daily Sovaldi. I continue to give him the meds exactly 12 hours apart at 6 am and 6 pm with food. He eats plenty during the day including snacks. Drinking water has now become habit. I am so grateful to have found this forum.
My hubby is now on week 2, I gave him his 2nd interferon shot on Friday, so he has been out of it all day yesterday and most likely today. I just made breakfast and made sure he took his pills at 6 am this morning. Now he went back to bed. His side effects so far have been major fatigue, diarrhea the day after the shot, flu like symptoms, muscle aches and pains and head ache. ... He did miss 2 days of work last week from the fatigue. Hopefully, once his body gets used to the plethora of meds he is taking, things will settle down. His hemoglobin is at 17 from his blood results on Tuesday, so at least he is starting out high. Onward we March!
I keep telling him to think positive, healing thoughts to help his body stand up to this monster. I am committed to watch over him these next 11 weeks, to make sure he is eating and drinking lots of water.
I keep telling him to think positive, healing thoughts to help his body stand up to this monster. I am committed to watch over him these next 11 weeks, to make sure he is eating and drinking lots of water.
Well the decision has been made. Sovaldi plus Interferon and Ribavarin. I was on the phone last night ordering the Interferon or Ribavarin and they all arrive Friday afternoon. Looks like day one will be Saturday Feb 22. He picks up the Zoloft today. Finally, a plan in place!!!! I still would have preferred the off label combo, but my husband was ok with the triple. It is ultimately his choice and it is only 12 weeks, so I am hoping the side effects aren't going to get too bad.
We go tomorrow to see the doctor. Will let you all know the outcome.
Thank you for your support!
Thank you for your support!
I'm so sorry that a delay arose, but I'd bet it won't mean a major change. I hope not! As for the Zoloft, I have to disagree quite strongly. Its true it is horrible to stop it abruptly - I did that by accident once when I forgot to pack my Zoloft for an extended camping trip, and it was a monstrous experience. However, if you reduce the dose very gradually it is not hard at all. I took Zoloft for about 20 years and quit last fall with no ill effects at all. I was on 150mg a day for many years, and dropped it to 100 for a week, then 75 for a week, then 50 for a week, then 25 for a week, then just for good measure I took 12.5 for a final week. It involved a lot of careful cutting of pills but I had no side effects other than a very slight increase in irritability. My husband didn't even notice it, so it clearly wasn't very bad. I didn't have any of the horrendous nightmares I got the time I did the accidental abrupt stop. I've been off it completely since Thanksgiving and have done just fine! I think if the time in the med was shorter, the withdrawal could probably proceed more quickly too. I couldn't say whether Zoloft will help you, but if it might then it really makes no sense to hold back for fear of the horrors of quitting it. Good luck!
It's hard to say. It could be something so simple as they want to do updated blood work or EKG or something to get started on treatment. Also, information in this field is changing so rapidly, it could be that your husband's gastro has changed his mind and is planning to recommend a different course. Or maybe it's just to review how to take the medications. So, do you have an appt for him to go back in to see the gastro? Let us know what he/she says.
Advocate1955
Advocate1955
Update..well, here it is mid Feb and I am still trying to help my husband get on treatment. We got really far and now all of a sudden his gastro wants him to come in next week to discuss the plan. You see, he wrote a script for Olysio and Sovaldi. We have the bottle of Sovaldi sitting here on the table. The Olysio is at his insurance company just waiting for us to call to have it shipped!!!!!!! The plan was to have him checked for Q80K and then decide. So after waiting for 4 weeks for results (and of course me calling them every few days to see if results came in) GUESS WHAT? He is negative. So what could be the problem? He is genotype 1a, has a major accident last year, over 8 surgeries and still has issues. He is in early stages of cirrhosis. Do you think he is considering going to Sovaldi, RBV and Interferon. I am so upset. I need advice and support. My husband can't understand all this science and gets very confused when I try to explain. His accident also caused two bleeds on his brain, so he has some cognitive issues. I want to cry....I can't see him going through the interferon with all he had already gone through. We have a prescription for Zoloft that he was going to fill if he was to go on the interferon and that was before we got the doc to write a script for the off label combo. However, have you ever gone on an antidepressant and then come off? The withdrawal from that stuff is horrific. Help!!!! I am at my wits end.
Pamelajean, thank you for all of this info. I am sorry they found the Q80K. As you said, if the results are comparable to or BETTER then RBV with or without Interferon, it has to be the best choice! I will pray that you get the meds now without any wrenches!!! I will keep posting our journey, please do the same okay?
Finally! Results show that I do have Q80K. Same here with the labs....the sample has to be frozen within a certain time. Mine were not so had to go back for a redraw. They only test this once a week and it takes 5 days for results. Then the report was confusing so I got the call I was negative and a few hours later that I was positive. Quest labs and yes it's new to them hence all the confusion.
But! After talking to my hep dr we decided to go ahead with the off label of Sovaldi/Olysio regardless. I might mention too that he consulted with the Director and got his approval as well.
I realize that my chances to clear fell from 100% to 91%.....
"When looked at by HCV GT1 subtype, the results show that patients with the Q80K polymorphism did not fare as well. In cohort 1, 89% of patients with that polymorphism achieved an SVR12, compared with 100% of those with GT1a or 1b without Q80K. In cohort 2, 91% of those with the polymorphism achieved an SVR4, compared with 100% of the patients with GT1a or 1b who did not have Q80K."
....but I am willing to go with those odds as opposed to the infer/RIBA route.
Doc actually never mentioned interferon except in the beginning that that wasn't what he supported. He did suggest that I could do Sovaldi and RIBA but it was my personal choice not to.
Soooo......pharmacy has them and confirmed my copay of $30 each. The prescription has been written. As long as Aetna doesn't throw a wrench in the works I should be starting soon. :)
But! After talking to my hep dr we decided to go ahead with the off label of Sovaldi/Olysio regardless. I might mention too that he consulted with the Director and got his approval as well.
I realize that my chances to clear fell from 100% to 91%.....
"When looked at by HCV GT1 subtype, the results show that patients with the Q80K polymorphism did not fare as well. In cohort 1, 89% of patients with that polymorphism achieved an SVR12, compared with 100% of those with GT1a or 1b without Q80K. In cohort 2, 91% of those with the polymorphism achieved an SVR4, compared with 100% of the patients with GT1a or 1b who did not have Q80K."
....but I am willing to go with those odds as opposed to the infer/RIBA route.
Doc actually never mentioned interferon except in the beginning that that wasn't what he supported. He did suggest that I could do Sovaldi and RIBA but it was my personal choice not to.
Soooo......pharmacy has them and confirmed my copay of $30 each. The prescription has been written. As long as Aetna doesn't throw a wrench in the works I should be starting soon. :)
Hi friends, need you positive energy and prayers that my latest plan works. Thanks to all of you and all the info I have gleaned from this site, here is were we are. My husband went to have the test done for Q80K. The tech had no clue on how to handle the prep of the blood for this teat and had him sit there for over an hour contacting his doctor and calling other sources. I guess it is so new! Anyway, supposedly the prep and blood must get processed within a 6 hour timeframe. (I wasn't there so this is what my husband heard them saying). I will be calling to find out the results because he forgot to ask how long it would take for results to come back...ugh...Now, if he is negative and if his insurance will pay for both Sovaldi and Olysio, let the treatment begin!!! If not, we are at Plan B and that is Sovaldi with Copegasus and Pegasus. He saw his primary care doc, and has a script for Zoloft and so in case we go to Plan B, we are ready. I can't tell you how many hours I have spent calling his gastro, talking with his nurse, writing emails providing the info on the clin trials to his doctors, and hours and hours reading and researching. The info you all have provided and the support has giving me the strength to carry on. I also just found out my mom has been having issues and is scheduled for a endometrium biopsy. She lives 4 hours away and I want to run to her but have to make sure my hubby is ok here. Please play, I have faith that Someone above is guiding us to what is His will. If my husband did not have that horrific accident, we would never have found out about this a Hep C! So I believe that everything happens for a reason but sometimes it is not easy to see it at that moment. Thank you all and I will keep you posted on our journey.
Hi, did you get your test results back for Q80K? My husband is getting tested today.
Please keep us posted on how it goes! I am now thinking to ask my husband doc about this as well!!!
Did your gastro test you for the presence of
virus with the NS3 Q80K polymorphism? Alternative therapy should be considered for patients infected with HCV genotype 1a containing the Q80K polymorphism.
virus with the NS3 Q80K polymorphism? Alternative therapy should be considered for patients infected with HCV genotype 1a containing the Q80K polymorphism.
I apologize if I've missed something here....I'm new to the hep world having only been diagnosed 3 months ago. I'm Gt 1a with cirrhosis(F4). Trial results show Sovaldi(sofosbuvir) and Olysio(simeprevir) withOUT inf and even RIBA have same if not better results.
My hep dr has agreed to write 'off label' for treatment with these two drugs. I just don't know why any doctor would prescribe inf at this point...again I'm not an expert. Can only share my experience.
"In a pooled analysis of the 12-week treatment arms in cohorts 1 and 2, SVR4 was achieved among patients treated with simeprevir and sofosbuvir with or without ribavirin, in 96 percent of patients with IL28B non-CC genotype, 91 and 100 percent of patients with a METAVIR score of F4, respectively, and 95 percent of prior null responders.
All patients who completed treatment were HCV RNA undetectable at end of treatment and there were no viral breakthroughs in either cohort 1 or 2. The COSMOS study interim results show no benefit from adding ribavirin to simeprevir and sofosbuvir in this difficult to treat groups of hepatitis C patients and that 12 week treatment may confer similar clinical benefit to 24 week treatment. - See more at: http://hepatitiscnewdrugresearch.com/sofosbuvirgs7977simeprevirtmc435.html#sthash.WXRMZpK3.dpuf"
My hep dr has agreed to write 'off label' for treatment with these two drugs. I just don't know why any doctor would prescribe inf at this point...again I'm not an expert. Can only share my experience.
"In a pooled analysis of the 12-week treatment arms in cohorts 1 and 2, SVR4 was achieved among patients treated with simeprevir and sofosbuvir with or without ribavirin, in 96 percent of patients with IL28B non-CC genotype, 91 and 100 percent of patients with a METAVIR score of F4, respectively, and 95 percent of prior null responders.
All patients who completed treatment were HCV RNA undetectable at end of treatment and there were no viral breakthroughs in either cohort 1 or 2. The COSMOS study interim results show no benefit from adding ribavirin to simeprevir and sofosbuvir in this difficult to treat groups of hepatitis C patients and that 12 week treatment may confer similar clinical benefit to 24 week treatment. - See more at: http://hepatitiscnewdrugresearch.com/sofosbuvirgs7977simeprevirtmc435.html#sthash.WXRMZpK3.dpuf"
Gilead is the only one that can truly answer questions regarding their coupon coverage based on your insurance. It does appear that WyoSue will still need to pay up to 10 percent of the cost (still $$$$), but maybe not?! Good Luck with coverage WyoSue.
Faithdove, hang in there...we can only plan and deal with what we can plan and deal with...so...we plan...and deal with it...one day at a time...
Faithdove, hang in there...we can only plan and deal with what we can plan and deal with...so...we plan...and deal with it...one day at a time...
So I am a nervous wreak over my husband's upcoming treatment. I read another post on this site about side effects during and after treatment. Neuropathy, was one of them. I am trying to remain positive but am such a worry wart. My hubby got up this morning and then went back to bed, I am sitting here thinking too much. I really hope he gets his energy back once we banish this Hep C, this fatigue is really impacting his quality of life. Thank you for listening.
One more thing I just thought of, something has to give with getting these drugs to patients faster and not have insurance holding up treatment.... waiting 6 or more months to get them on their formulary. Many folks needing treatment are baby boomers, so doesn't it behoove the insurance including Medicare, to get these type of meds available instead of having people end up having to deal with further issues from lack of treatment. Boy am I learning a lot and it only makes me madder!!
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However....I've decided to ask my hep dr to let me treat regardless. Results show a 15/20% less effectiveness with Solvadi/Olysio if positive with Q80K but as far as I can see from other (AbbVie) trials that makes them pretty much comparable. I'm dead set on not treating with RIBA much less inf.
I have appt tomorrow so will see what he says...