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6749350 tn?1401980405

Treating Again

hi my dr said im interferon ineglible so has decided to treat with
Sofosbuvir
Simepriver
Daclatisvir
my question is anyone on this treatment did they clear virus side effects etc thanks
                       geo
29 Responses
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Avatar universal
Thanks Mark.  So many people on Tx sometimes its hard to keep up.
I thought maybe Geo was having some of your Sx.
Thanks again for responding as it was you that I was thinking about.
Hope your doing well!
....Kim
Helpful - 0
317787 tn?1473358451
As you know I am not a doctor but was wondering if any of the Ribavirin from your first tx could still be in your body.
I had been told it could take up to 6 months for it to leave the body. Did you finish the end of June?
Just a thought.
It may not make a difference in your blood but you mentioned your doctors were puzzled.
Helpful - 0
317787 tn?1473358451
Thanks so much for the update, I am thrilled that you aren't having any sx or at least they are not bad.
I am so happy for you to be treating again so quickly.  I think that is great.
Please keep in touch, let us know how you are doing
D
Helpful - 0
10175413 tn?1427170251
Hi Geo!  I saw that you are treating again, good for you...I remember you had some reservations before you started. So happy you are doing good. Don't forget to drink lots of water, 12 wks will be over before you know it...
Take care
Peace
Deb
Helpful - 0
Avatar universal
It might be me that you are remembering, although I was on a slightly different treatment - mine was like Geo's but also included Olysio. My bilirubin went up to 6.7 shortly after starting treatment, and came down mainly to 3-ish for the rest of the 12 weejs. Didn't return to baseline until I completed therapy.
I was told it was due to Gilbert's syndrome, a benign condition.

Mark
Helpful - 0
Avatar universal
Geo
There was another person on here that had there Bili go haywire while on Tx.
It was a rare condition but stabilized once Tx ended.  Can't remember who it was but hopefully they will read this and respond.  Know it was one of the guys on here.  Think his Bili went to a 7, but not positive.  There was a name for this condition and its very rare.
....Kim
Helpful - 0
Avatar universal
Geo
I started Tx with a viral load of 357.  Cleared in 2 weeks.  Am now cured.
I think your immune system may have cleared this virus on its own with a little help from your prior Tx.  
We do know that  up to 25% of infected persons can clear the virus on there own.  I do believe that's whats happening to you.
When I was first detected my viral # was 56.  My Hepa said my body was fighting the virus trying to cure itself.  We decided to treat and knock it out for good.  And we did.
Hope that's whats happening to you.   Think it is!
....Kim
Helpful - 0
6749350 tn?1401980405
hi dee thannks for reply and hope u r ok dr decided on sofo/riba for 24 weeks and sides r non existent compared to riba/interferon . been on this tx for 5 weeks and think this is where mystery lies 12 EOT Riba/Interferon detectec waited a few month started Sofo/Riba bloods took day i started and virus was <12  2 weeks into treatment undetected so its inbetween txs what happened  did i cure etc etc
           thanks
                 geo
Helpful - 0
317787 tn?1473358451
Hi I wanted to come back to ask how you are feeling?  I hope you are handling the tx well.  Some people have problems, others don't the best news is that it is only 12 weeks so much less time than the old 48 to 72 weeks.  
Take Care
Helpful - 0
317787 tn?1473358451
Hi there, I am glad you are treating.
As far as geneticist, I remember another member here who's hepatologist had tested him saying that different backgrounds could get different results from various tx's
I am not really up on this stuff but I remember himtalking about taking his blood and he tested for Northern European so his tx would be based on that.  It was interesting as he did not know his back ground.  Evidently there have been studies on this.
It is amazing what they can find out.
I hope these tests will help you.
So...are you taking the medications you listed above or did it change?

Sofosbuvir
Simepriver
Daclatisvir

Take Care :)
Helpful - 0
6749350 tn?1401980405
hi forum hope everyones ok . Seen my dr yesterday and they say lot of strange things been happening so they are sebding my last 5 bloods to a geneticist ( what the f--- ) apart from that everything seems ok any ideas
                           thanks
                                   geo
Helpful - 0
6749350 tn?1401980405
hi everyone thanks for your advice well im 4 weeks into  riba / sofo n more dilemas lol ive put another post about it day i started got bloods virus was <12 done bloods 2 weeks in to treatment and virus is undetected so dr reckons 12 eot was positive but i might have cleared the virus as its very rare but can happen hence <12 so riba has been reduced to 200 in morn and 200 at night  and sofo in morning dr wants mri scan cause bloods have went haywire but albumin was rising ang platletts higest they have ever been at 74 billiruben rose high but goin down so looks good but think dr is little bit stumped so any advice would b brill n thanks for all your words of advice and comfort really is a brill forum
                thanks
                       geo
Helpful - 0
6749350 tn?1401980405
well started treatment again today ( hurrah )
on 12 weeks of ribavarin 400 in morning and 600 in evening
also sofosbuvir 400 in morning so heres hoping i win this battle
   thanks  everyone fore your information
                           geo
Helpful - 0
Avatar universal
That is what I am seeing from posts on here, from my own experience and from what I hearing in my Drs office - at least those Dr is not waiting to treat w/Sovaldi and Daclatasvir after approval (assuming it is approved here AND the Insurance Cos will approve it, off label.   Pat
Helpful - 0
Avatar universal
It's my understanding that they treat 3a's with Solvadi/Riba these days. Interferon is being pulled off the shelves and lawsuits abound due to lasting damage from it.
Helpful - 0
Avatar universal
A totally different story!  You do what you have to do.

Good luck and I wish you SVR this time!!!   Pat
Helpful - 0
6749350 tn?1401980405
thanks for ur input everyone but im actually in the uk and we get treated on the nhs so cost is nothing just wish everyone had that option as debating what treatment u get buecause of cost is not right in my point of view interferon is going to be 135 ml and course is 12 weeks thanks
               geo
Helpful - 0
6749350 tn?1401980405
thanks for ur input everyone but im actually in the uk and we get treated on the nhs so cost is nothing just wish everyone had that option as debating what treatment u get because of cost is not right in my point of view interferon is going to be 135 ml and course is 12 weeks thanks
               geo
Helpful - 0
Avatar universal
Forgot to say I treated w/ Interferon for 7 months in 94/95 - back when that was used by itself - 3 injections a week gor the 7 months, which is why my Dr was able to get Ins Co to approve the Sol/Riba first time.

P
Helpful - 0
Avatar universal
PLEASE talk to your Dr - or better yet - call a transplant center.  I Think that being cirrhotic really should disqualify you from the INF.  

Maybe I am wrong.  We need input from some of our cirrhotic treaters, or post transplant posters.

The Daclatasvir is what my Dr and I have discussed if I fail on this 24 week treatment with Sovaldi (400 mg 1 x day), and Ribavirin (6 200 mg capsules - 3 in am and 3 in pm). As I told you before, I am hepc 3, too.

Good luck, whicever way you go.  Pat

Helpful - 0
1961140 tn?1450738712
Hello, You are on a winning combination therapy, I would be shocked if you did not clear the virus by Week 4, even earlier is quite possible. Even if your starting viral titer is in the millions of IU/ml. INF ( Interferon) is on its' way out, and quickly. Soon to be followed by Ribavirin (RBV). I'm not sure how long your tx period is, but I'm sure your chances of a permanent SVR ( sustained viral response, a.k.a virus free forever) is > 95%. Congratulations on getting access to these drugs, I hope you did not bankrupt yourself to affodr them. Please keep us posted, and good luck.... mac790
Helpful - 0
6749350 tn?1401980405
and im  gt 3a and cirhotic cheers
Helpful - 0
6749350 tn?1401980405
yes they r treating me with interferon again with sobosvir  simpriver was on ribavarin and interferon for 48 weeks so dont know why they changed there mind with interferon thanks for your reply
               geo
Helpful - 0
Avatar universal
OOPS!  Forgot to finish the statement on Daklinzaq:  that should read:  "this combo of 1 DAKLINZA AND 1 SOVALDI per day has been approved in Europe for treatment. That came from the bms.com/news site - a news article listed there.

Sorry,  Pat
Helpful - 0
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