Author Topic: Finally real world info is surfacing on sofosbuvir (Read 16322 times)

Tess1971 · « **on:** August 27, 2015, 09:00:29 pm »

If you do a search for Real world info on Sofosbuvir" there is now surfacing some information that is not related to studies, but, real world data.
It is about time is all I can say and some of it is disconcerting.

KimInTheForest · « **Reply #1 on:** August 27, 2015, 09:21:57 pm »

Do you have any links you can share, Tess? I have been wondering about this too. Figured the real world experience cannot possibly be as neat and tidy and idealized as the study results would indicate.

… Just looking now… I see what you mean. Here's one:

http://www.pm360online.com/ddw-svr-rates-slump-with-real-world-use-of-sofosbuvir-based-hcv-regimens/

kim

Tess1971 · « **Reply #2 on:** August 27, 2015, 10:16:17 pm »

http://assets.fiercemarkets.net/public/hepatitiscutilization.pdf

This one is really interesting and informative.

Tess1971 · « **Reply #3 on:** August 27, 2015, 10:23:33 pm »

This is the one that I found a but scary;

http://www.medscape.com/viewarticle/842315

Jazz · « **Reply #4 on:** August 27, 2015, 11:21:23 pm »

Thanks Tess. Yes early days.

Lynn K · « **Reply #5 on:** August 28, 2015, 01:53:55 am »

From what I have read real world data seldom achieves the same results as clinical trials as they are more tightly controlled and often the patients are highly motivated

badbradley · « **Reply #6 on:** August 28, 2015, 02:38:45 am »

Study shows low SVR among veterans on Sovaldi-based regimens

http://www.healio.com/hepatology/hepatitis-c/news/online/%7Ba024e17c-a849-4cdd-86d2-3efab75cf434%7D/study-shows-low-svr-among-veterans-on-sovaldi-based-regimens?utm_source=maestro&utm_medium=email&utm_campaign=hepatology%20news

gnatcatcher · « **Reply #7 on:** August 28, 2015, 10:42:14 am »

Quote from: Tess1971 on August 27, 2015, 10:16:17 pm

http://assets.fiercemarkets.net/public/hepatitiscutilization.pdf

This one is really interesting and informative.

Yes -- CVS/caremark specialty pharmacies are definitely collecting adherence data. A nurse from there phones me once/month to see how I'm doing and whether I took my daily pill, drank plenty of fluids, and kept doctor and lab appointments. They're very nice about it, but "this phone call is being recorded" so they must be gathering data for a sequel.

Thanks, Tess1971. -Gnatty

Tess1971 · « **Reply #8 on:** August 28, 2015, 11:22:48 am »

CVS Specialty Pharm is who supplied me when in treatment. They called me at first then stopped telling me they were no longer required to followup if patient was taking ribavirin. It seems Harvoni and other new regimens were all they were interested in now.
I also acquired hepc in 1971.

gnatcatcher · « **Reply #9 on:** August 28, 2015, 11:34:53 am »

I n t e r e s t i n g! I had thought they were an example of good customer service

Tess1971 · « **Reply #10 on:** August 28, 2015, 12:06:33 pm »

I am not knocking them at all, the specialty pharm was great when I called them with questions, but, they stopped calling me after first two week call due to my taking ribavirin regimen (so they said when I asked). They are my pharm if I need specialty drugs etc since I am retired gov and I had no issues getting the sovaldi and ribavirin at all. Only had to pay a $55 co-pay each month - definitely worth it I thought.

atomic dog · « **Reply #11 on:** August 29, 2015, 06:22:26 pm »

This data cited is a year old, hardly new or revealing.

Tess1971 · « **Reply #12 on:** August 29, 2015, 09:53:27 pm »

Article 842315 that I put link for on Medscape for some reason is no longer accessible. It was on cardia toxicity of sofosbuvir. I find that interesting that you have to sign up now to see it.

MelHu · « **Reply #13 on:** September 01, 2015, 02:09:31 pm »

Hi
I'm also wondering myself about those statistics. I am GT 2b and on Sovaldi/ribavirin and on the 9th week of TX. I have F3 scoring for my liver. Initial VL was 3,250,000 UI/ml at 6 weeks still had VL of 49 IU/ml and at 8 weeks 40 IU/ml. I feel that I will probably be one of those that do not achieve SVR at the end of the 12 week mark. My NP had mentioned that there have been others who had "quantifiable VL" that do achieve SVR after 1month post TX. Has anyone heard of this before? Also told that this was the only Tx for GT2. It's very scary. Input from anyone would be greatly appreciated
Melhu

gnatcatcher · « **Reply #14 on:** September 01, 2015, 02:50:53 pm »

Melhu, your NP is correct. Forum member dragonslayer had a VL of 29 at end of treatment (8 weeks of Harvoni), was still detected at 7.5 weeks after treatment, but achieved SVR12 and SVR24. There were others, too, who were slow to reach a VL of undetected but were also cured. (Sorry I can't remember their forum names.) You still have good odds.
Should you need further treatment, there are TWO possible re-treatment options for GT2. The Hep editors recently posted the updated recommendations for re-treatment for all genotypes from the American Association for the Study of Liver Diseases (AASLD) and Infectious Diseases Society of America (IDSA). Click on this link: http://www.hepmag.com/articles/2512_20532.shtml and scroll down to the appropriate box. The article was last revised on August 17, 2015, so your NP may not have this version of the guidelines yet.
Best of luck to you. -Gnatty

Tess1971 · « **Reply #15 on:** September 03, 2015, 12:18:49 am »

Melhu I am also G2b and my VL was even higher than yours. And I had had hcv for 40+ years. My VL was never tested until treatment ended for that reason. I had no VL checked throughout entire treatment. So I would relax and let the meds do their thing and try and eat super healthy and hydrate.

MelHu · « **Reply #16 on:** September 20, 2015, 02:51:59 am »

Thanks so much for the input Gnatty. Such a wonderful place for us to get "real-life experienced " info here. As with all of us on this journey there's just so much more LIFE ahead of us. I awaken every morning thankful and never take things for granted. I took my last Sovaldi this morning, Ribavirin at 12 and 5 and took my labs today. So.... Here goes hoping for the best. Sure appreciate this forum. Let you know how things go with lab results. Thanks Melhu

KimInTheForest · « **Reply #17 on:** September 20, 2015, 12:38:13 pm »

Quote from: MelHu on September 20, 2015, 02:51:59 am

Thanks so much for the input Gnatty. Such a wonderful place for us to get "real-life experienced " info here. As with all of us on this journey there's just so much more LIFE ahead of us. I awaken every morning thankful and never take things for granted. I took my last Sovaldi this morning, Ribavirin at 12 and 5 and took my labs today. So.... Here goes hoping for the best. Sure appreciate this forum. Let you know how things go with lab results. Thanks Melhu

Congrats on finishing treatment, MelHu!! And good luck on your labs.

kim

MelHu · « **Reply #18 on:** September 23, 2015, 02:16:17 am »

Thanks Tess1971 for your encouraging words. I am hopeful and appreciate the input from all that are on this treatment. It's been a really wild ride.

MelHu · « **Reply #19 on:** September 24, 2015, 01:59:08 am »

Thanks Kim also. Will post later results. I bless each day I awaken and see the world in such a different light. Seems like ally senses are fine tuned. Hope that's due to the meds eradicating the virus!!!'

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Author Topic: Finally real world info is surfacing on sofosbuvir (Read 16322 times)