Sovaldi, & SOC-here I come! Well, hopefully...

[susan400]

It's looking good for me to be started Sovaldi + SOC treatment soon.   I heard from the male nurse at my doctors office (who is the one working with Dr. 's HEP C patients.  My appt. to see Dr. is Wed. and I'll know for sure if he's going to prescribe them then.  I won't actually start taking the meds until June 18th though as I had some more personal things I needed to get out of the way before started treatment.  Like my B-day on the 17th... LOL.  Getting brakes put on my car and A/C in condo-maintenance.  Anyhow, pray for me to get this all set up, the insurance coverage, etc. and the treatment to work-that I would not only get UNDetected, but that it would be an EVR!  I want to have a Halleleujah party when that day comes!!!  Susan400

[susan400]

I am on Interferon and Riba w/the Sovaldi, it's just the timing of the Peg is on Mon. nights and the other two drugs were started before that on Wed. 6/18.  I have treated about 10 or 11 times, 4 of those being clinical trials and one of those being a maintenance therapy regimen x 6 mon.  I am a null responder on all the prior treatments.  I am genotype 1A.  Have not been given the Q phenotype test as my doctor says it's not necessary and will not change what we decide to do or not do on treatment. He says it's an expensive test and that it would probably be at my cost.  I also did not get a variant test because I am not using the Olyssio, so it was a non-issue.  The Sovaldi is a different drug as it is not a protease inhibitor.  In a perfect world, all doctors would run all tests and all insurance companies would pay 100% of the cost and the ideal treatments would be given to all patients.  Unfortunately, in real world, that does not always happen that way.  I am on Sovaldi 400mg once a day and 5 Ribas daily 3 in the AM and 2 in the PM.  The Sovaldi I take in the AM with the 3 Ribas w/food.  As of Mon. night, I will be on the above recommended protocol of PEG Interferon once a week w/the Sovaldi and Riba daily.  Hope that answers your question??   Thanks for the well wishes and good thoughts!  Susan400

[flyinlynn]

From what I understand the treatment protocols are based on the American Association for the Study of Liver Diseases (AASLD) Recommendations for Testing, Managing, and Treating Hepatitis C
here is a link to the  PDF of the report

http://www.hcvguidelines.org/sites/default/files/full_report.pdf

I dont recall your Genotype or if you are a non responder or relapser but per the report page 18

"This section provides guidance on the recommended initial treatments for persons with chronic HCV infection who are naive to HCV
treatment or who have achieved an undetectable level of virus during a prior treatment course of PEG/RBV and relapsed (relapsers)."

For Genotype 1

"Recommended regimen for treatment-naive patients with HCV genotype 1 who are eligible to receive IFN.

Daily sofosbuvir (400 mg) and weight-based RBV (1000 mg [<75 kg] to 1200 mg [≥75 kg]) plus weekly PEG for 12 weeks is recommended for IFN-eligible persons with HCV genotype 1 infection, regardless of subtype."

So this is where hopefully most doctors are getting their guidence on how best to treat hep c patients

Good Luck hope you win the battle and the war
Lynn

[susan400]

Hi, good to hear from you.  Right now, as far as what is planned is just 12 wks on the 3 drugs.  My doctor's office is so sure that I'm going to be clear on week 4 that they wouldn't tell me what the plan is, if like for some reason, I don't clear until like week 8?  One would think that if that was to happen, that at the very least, the SOC would be extended out to 24 wks??  That would make sense to me, but what do I know?  I am only the patient!  Seems like we're always at the mercy of the doctors, drug companies and insurance companies and our opinion doesn't always seem to matter that much to them, on some things.  As I told the CMA who is in charge of the doctor's office hep C patients..., I would rather go through extended SOC if I clear later than 4 wks, than to have a few viruses hanging around that don't get wiped out by the meds..., that then, replicate.  I want this GONE. I want it GONE for good, you know?  But, in the spirit of positive thinking, I have to repeat the mantra..., I AM GOING TO BE UNDETECTED by 4 WKS!!

[FlGuy]

That moved along quickly.  Good for you.  How long is this tx?

[susan400]

Yahoo.  My meds are in the house.  Now on to clearing, undetected, SVR..., that what I'm saying.. Susan400

[susan400]

Good news.  I was pre-auth'd for Sovald, Peg and Riba. I just found out today.  Start date planned for 6/18/14.

Yes, I know, I'm a glutton for punishment.  Tx number #11 or is it #12?  Geeez, I've lost count. But, 4 of those were clinical trials, so it's really not full 48 wk tx on every one of those tx's.  I just found out today that my husband's insurance has approved the preauth for the Peg and Sovaldi.  The Riba didn't need a preauth they said since it's gone generic and is no longer a high priced drug on their formulary.  The people working with me on the phone at my husband's insurance company were fantastic, beyond helpful.  The people that I have to deal with in my doctor's office, not as much.  But, oh well, at least I have an answer now.  Now, I am doing my 'getting ready for tx' prep work, like getting 'to-do's' out of the way as much as possible, so I'll have less to deal with on TX.  Stocking up on moisturizing cream (in my case - Eucerin calming), calamine lotion, bought a 12 pack of organic nutritional shakes (like Boost, but organic), for those times when appetite is absent. Getting dental appts every 4 mon. now, so not due yet there. Had eyes checked about 4-5 mon., so not due there.  On planning getting a good shorter haircut.., I already wear it a little longer than chin length, but will chop off another inch just to not have as much work to do with blow dryer.  I'll probably fix up a meal or two that it easy on the stomach, but has some nutritional punch to it.  Wish I could buy some over the top optimism and positive thinking ..., I always go into it with that mindset, but sometimes it lags during the actual tx time.  I always hope to be able to one day add my name to the ever growing list of SVR's.    Susan400

[mzkity]

Keeping the faith!!  :)

[susan400]

Hi everybody.  Just a quick update. I am still waiting for the preauth on the SOC and Sovaldi.  The drugs are covered drugs under my husband's insur. but have to get the preauth first.  It's been 3 wks since my doctor's appt. when he prescribed it and I'm getting sort of tired of waiting for an answer one way or another. I just want to know, yes or no.  You know?  As of yesterday, the insurance company told my pharmacy that they had all the info that they need and now it's in clinical review for the next 3-5 days, at which point, I may have my answer.  If it's a yes, I am still planning to start on 6/18/14.  

Susan400

[Dee1956]

Hi I just saw this, I am thinking of you praying for you.  I am amazed at how many times you have treated
You are my hero!

[susan400]

Saw the doctor and the prescription is in for Pegasys, Ribavirin and Sovaldi.  Now it goes on to the insurance company for preauth.  My husband has a good insurance plan through his job and he has me on it now, too.  It covers alot better than my medicare HMO, so I'm just going to use his instead.    I will seem weird to me treating with a regular private physician for treatment since the last 4 TX's have been clinical trials.  I remember doing my earlier TX's with regular private doctors.  It's good in some ways because you know you are getting the real drug right from the get go and there's more ability to prescribe things for sides, like Procrit if needed-although I didn't also have to have it.  Or, like I can stay on my Ambien for sleep, which is a good thing.  Does anybody know if it's okay to drink green tea when treating with Sovaldi?  I know grapefruit juice is off limits.  I've been having to be on prescription strength of VIt. D, but now that my levels are high again, I'm going to be able to switch from 1 a week to 1 every other week and use the OTC Vit D on the off week from the Prescription strength.  The Prescription strength is so strong that it does a number on my stomach. It's like 50,0000 iu or something like that.  It's because I have Osteopenia and I'm unable to get enough sun because of skin thing-to get the maximum benefit of the sun Vitamin.  Anyhow, wish me luck, or pray, for me that the pre-authorization will be approved! Thanks!

[FlGuy]

Hope number 11 will be the charm. Or is it 12?