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Avatar universal

On OFF LABEL Sovaldi and Olysio!

In my 3rd week now and feeling really strong.  Without the nasty Interferon and Ribavarin this time - I have had minimal side effects and I am so very grateful!  My 2 week labs came in today and ALL of them are in normal range... including AST and ALT.  Second month of the meds have been ordered and are now on their way so stay tuned for more updates as we knock out these 12 weeks of treatment.  I truly believe this 3rd attempt to SVR will be the final one as it will be the cure I have needed using these 2 drugs!
I will keep you all posted.
Hugs and God Bless!
212 Responses
215858 tn?1420171556
So glad it's easy going for you!  You've been on this forum for quite a while and I remember you from my time here in 2006/7.  I feel like the third time is the charm for you.  
Cheers, V.
Avatar universal
What great news! Happy happy happy for you!! Third time is definitely the charm....You go girl! I've heard it said that people actually feel the virus disappearing. Can you just 'feel' something different?

My script was written a week ago tomorrow. Pharmacy company that handles my benefits looking for that 'last questionnaire' sent to doc....doc says they faxed it over but pharmacy says it's a generic form not the one they sent. Grrr...so I'll be back on phone in am.

Grammy, I remember you saying your doc was prescribing off label for all his patients. Do you have any idea what reasons he is giving to insurance....as in key words or arguments he has to support the off label. Hope that makes sense. So tired and it's been a frustrating day.

Again, so very happy for your success! Can you spell CURED? :)
789911 tn?1368636783
Im really looking forward to seeing your SVR with these new drugs!  This is astonishing!
Avatar universal
I do not know if he is putting all patients on the Sovadi/Olysio combo..... but he is putting ALL of the ones that have tried and failed previous treatments that are 1a or 1b.  He did have to provide a statement that explained how my body could not tolerate Interferon or Ribavarin again and that the side effects were extreme... so this combo would be my best hope for SVR.  

Keep pushing until you get this handled!  The difference between this treatment and my previous ones is night and day.  If this really does work then I would question why ANY doctor would put patients on those drain-o level drugs ever again.  Time will tell on this one for sure.

Do I feel it leaving my body?  Not really, but I do feel very strong and healthy right now.  I take the pills with my evening meal - to bed at 10pm and up again by 5:30am.

I cannot tell all of you how scared I was to take these new drugs after being knocked down with the last go round.  I am so glad that the timing worked out that I was a year out of the last tx when these became available and that my Doctor is so awesome!  My body and mind were strong enough to have a go at it again.

If my story sounds similar to your story then you might consider this off label approach..... no fears!
317787 tn?1473358451
Dear Grammy I am so very happy to hear that you have been able to get the meds and start the tx.  This is so exciting to hear that your doctor was able to help you.
I am very glad that you are not having the sides as in the past
My best to you!
Dee
Avatar universal
I'm glad to hear you are doing well on your treatment drugs.  You know we all are rooting for your success this time!
Avatar universal
Hey Mark - how is your treatment doing so far?  Give details please!
Avatar universal
Hey!  Believe it or not, I started turning a bit yellow; I went for blood tests yesterday, and my bilirubin has gone up to 6.3!  This is something that was seen in simeprevir studies, and the hope is that it peaks about now (2 weeks into treatment) and will start heading down.  It presents a mini-dilemma, as I am working and have a problem if I am TOO yellow.  Fortunately, I had a chat with my boss before I started treatment, and now that I do have a side-effect, he seems very understanding.
Other than jaundice, all seems to be OK.  My hemoglobin has dropped two points but I am not feeling the ribavirin fatigue just yet.
And that's the details....
Mark
Avatar universal
Yellow is the color of sunshine is it not?  Shine through it and as long as you have your strength you can take a little color change.  Better then being green.
I know you will work past this to success!
Avatar universal
Its almost too good to be true and definately fantastic news that you are doing so well and with so little (or at least tolerable) sides so far.

I am so glad that there are these new opportunities for treatment.

To continued luck and SVR!

Joanne.
Avatar universal
Are you  taking Olysio Sovaldi combo?
Avatar universal
YES - in the middle of my 5th week and all is great so far!
Avatar universal
So glad you're feeling so good and that it's working for you!  I am waiting for the same off label combo with the pharmacy my doc had sent over.  Also, I had failed the interferon/ribaviron combo with many side effects.  Your progress gives me hope and hopefully soon I'll get approval.
Avatar universal
What time of day do most of you take your medicine?  I am wondering if morning or evening would work better.  I am starting on Olysio and Sovaldi this Monday and it's the first time I've ever treated so I'm a bit nervous but it sounds like the results have been awesome!
Avatar universal
Yes, I am on the Sovaldi/Sofosbuvir combo with the addition of ribavirin. Am now in my 2nd month.  I've had some adverse effects, though. As mentioned, my bilirubin shot up to 6.3.  Second test was better at 5.1.  But that series of tests also showed some kidney failure - my creatinine was at 1.7. So I am hydrating, hydrating, hydrating for my next set of lab tests next week.

We did reduce the ribavirin from 1000 to 600 ( I start off with a very high hemogobin of 18 (Gilbert's syndrome), so a fall of 4 points to 14, while sounding about normal, is for me quite low.

Saving the best news for last: The good news is that my 4 week virus level was completely undetectable!

Mark
Avatar universal
Take my meds after breakfast, same time every day.  Got my 2 week on treatment blood result back last week.  VL down from just under 2 Million IU/ml to 70 IU/ml.  Hoping this treatment will be successful.  Starting out good.  No sides to speak of.
My Dr. said that most people reach UND by 4th week, however some attain it after two weeks on tx.  The only time we will know if med is successful or not is at the EOT (end of tx) bloods.  If UND at 12 weeks after EOT, then he said I can pretty much relax
Avatar universal
Thanks ms maddie!  I am going to start tonite - taking my meds with evening meal.  Dr. said it was my choice, either with breakfast or dinner.  Have to say I'm feeling scared and hoping taking them with dinner is the right choice.  Guess I am hoping if there are sides the bulk of them will happen during my sleep!  Hope all continues to go well for you!
Avatar universal
I just found this forum and wanted to chime in.
I have hepc genotype 1 and cirrhosis, and have never had treatment before.
Finally saw Dr. Martin and his team at the University of Miami, and after a few months was approved for  Sovaldi and Olysio. Today will be my third day of taking the pills and  I,m both excited and a bit fearfull of it not working.
Crossing my fingers and praying.
Bruce
Avatar universal
Hi Bruce, Congrats on starting the Sovaldi/Olysio.  I started it in mid-January and reached UND at the 4 week blood draw.  So thrilled!

BTW the Dr. Martin you speak of, is his first name Paul?  If so, I saw him in Mt. Sinai in NYC back in 2005.  Nice guy.
Avatar universal
I knew Dr. Paul Martin when he was here at Mount Sinai. Yes, a good liver doctor, since moved on to Miami Beach.

Maddie, glad you're doing well.  Bruce, good luck on this combo!
I'm about 6 weeks into this now (also taking ribavirin),  

Mark
Avatar universal
Thanks for the good wishes, Mark.  I truly hope we reach our goal of svr.
Avatar universal
Does everyone here have to get a blood draw weekly for the first 4 weeks? And is it just the CBC with Differential ones?  I had my one week blood draw (CBC w/diff) yesterday and don't have the Hepatic Function Panel, Creatinie Serum and Hepatitis C Quant RNA PCR ones drawn again until week 4.  I'm a first timer treating with Olysio & Sovaldi.  I have to say I am already feeling stronger and not experiencing any sides to speak of.  My platelets jumped from the low 70's to the upper 90's in just one week and I'm attributing that to the meds - correct?  Thanks for any input!!
Avatar universal
I had just the standard CBC at 2 weeks, then at 4 weeks CBC with RNA to ck viral load (which was undetected) then will have another CBC at 8 weeks then another CBC with RNA at completion of the 12 weeks........ THEN 12 weeks AFTER the end of treatment the important CBC with RNA to see if I can be declared CURED!  Which by the way---- I will be!!
Avatar universal
I start the Solvadi/Olysio combo treatment in 2 weeks. I live in a very remote village in Alaska, we have no hospital or lab. My doc will do my blood draws  and then fly them out on small plane to lab in Anchorage, weather permitting. Can anyone give me advice on when to take the pills. With/without food? A.M. or P.M? Together? I just turned 65 and Medicare Part D approved it after the usual back and forth but my co-pay is over $13,000. Family and friends and my credit card are making this work. Lots of prayers too.
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