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Post Info TOPIC: Hi everyone, I just joined this forum and currently treatment.
Anamul Haque


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Hi everyone, I just joined this forum and currently treatment.
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-- Edited by Tig56 on Sunday 15th of November 2015 10:07:16 AM

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billym


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Thanks Robert, I will be doing just that.

Bill



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
billym


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Thank you Matt, much appreciated. I will be seeing my Cardio this week to discuss this need.

Bill



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
billym


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Thanks for your reply, Mallani. I purchased a reputable Indian generic Sof supplied through Greg Jefferys and Beyond Borders Group. The Dac I was lucky enough to qualify for here, on the limited compassionate grounds through my hospital. I see my Cardio again Wednesday and I guess will probably do a monitor. I just read that there have been heart arrhythmia issues with Sof/Dac in France but only in 3 of 415 patients and they were taking other meds also. I'm not and I'm relatively fit and healthy, besides the liver damage, so I feel a little unlucky I'm getting trouble. I'm in week 11 of 24 and I don't really want to pull out but the episodes have been increasing and kind of scary, so I need to really consider my options asap.

Bill



-- Edited by billym on Sunday 15th of November 2015 03:21:02 AM

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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
robertsamx


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Bill, 1 1/2  years ago I did  sof/riba for 16 weeks and I had a slight left ventrical afib going into treatment. It became more pronounce  as treatment went along. I was being watched by my local Cardio guy and the trial Dr"s.  You should get that checked out soon. asap.  RC.  BTW  this summer I had the afib oblated and now have no afib!!



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Matt Chris


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Hey Bill

Welcome to the forum from me as well, its great that you have landed the greatest latest Hep-C Meds. Great timing on your part, and a very high SVR rate for your Geno type.

Like Malcolm recommended you may want to have a way to make your self feel comfortable and relieve stress by having a way to monitor your heart.

Stay 100% compliant and you will enjoy your SVR in due time.

matt 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
mallani


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Hi Bill,

Welcome from a fellow Aussie.

You're on a great combo and should do well. You will have an easier ride than I did. Well done for getting access to the drugs as they haven't made our PBS yet.

Most people are anxious when they start treatment. I haven't read of any arrhythmia problems directly attributable to Sovaldi. Wear a 24 hour monitor if you're worried about it. All the best. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
billym


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Thanks you wmlj1960, for the reply and support.



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
billym


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Thanks for your reply, Observer. My enzymes are now normal. Seems as though Sofosbuvir does has some issues with slowing of the heart, although I havn't found anything about arrhythmia problems as yet.



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
billym


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Thank you Groupergetter!



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
Observer


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Welcome bill,

Isn't that a great feeling to be 'undetectable'. How are your enzymes doing?

 I'm on a treatment that includes ribiviron and I did develop sore lungs and a cough and had a couple of nights of a racing heart, but the members here suggested extra water on top of the tons of water I was drinking and that has helped my lungs and pounding heart and to a lesser degree, my cough.

I don't know anything about the meds you are on, but there are a lot of very knowledgeable folks here that may be helpful to you, and it sounds like you have an engaged medical team so I hope it gets sorted soon.

I did want to welcome you

Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
wmlj1960


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Hi Bill.

Welcome to the forum from me as well. I can't be of any help with your heart rhythm issues but I certainly will cheer you on to a successful treatment outcome for the next 14 weeks. biggrin

We have several very HCV knowledgeable members here that are happy to help in any way we can so make yourself at home. We are glad to have you here! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Groupergetter


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Welcome Bill, this is a great forum.  Lot's of wonderful folks.  Sounds like you have a good understanding of your situation, and treatment protocol.  Hoping you reach SVR,   Be well sir. 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
billym


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Thanks for getting back Tig56. I am not on any other medication at this time and will try and avoid any while on treatment. I occasionally take an anti inflammatory as I have a mild Rheumatoid arthritis condition (why no prior interferon) but most of the time I can manage drug free. I do take fish oil though and considering dropping that. I was hoping other people would be on the Sof/Dac combo so I could get some feed back but understand these drugs are still very new. I have been constantly reading information and news stories for the last 12 months and have a good understanding of all the new drugs and what's happening out there in the hep c community. I was aware of the problem they have had with Amiodarone and was actually discussing it with my hep c nurse the other day while I was trying to find out any more info on the side affects I'm suffering. These are still early days in the real world treatment, everyone is different and Im sure they're are still finding out things they never knew about these drugs. I just want to get though the full 24 weeks and hopefully clear it. I've been lucky not to have suffered too much over the last 35 years of having the virus and felt well, most of the time. Diet and activity, along with no alcohol plays a big part I think. Non the less, my viral load is high and my liver has deteriorated over the last decade. It was time and lucky enough these new drugs appeared. Fingers x!



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
billym


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Thank you for your reply 96tears. Not on any other meds and yes, monitored by a specialist at a major hospital. Not to say he knows everything about these new drugs and everyone is different in the way they react. I'm just hoping the strange side effects are a temporary thing and I can get through the full 24 weeks ok.

Bill



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55 yrs M Geno 3a Sof/Dac 24 weeks started 6-10-15 F3 ALT 126 VL 14'000'000
96tears


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hi and welcome, i am recent myself but have found a wealth of info here. not sure what could cause the weird rhythms in the heart but some of the side effects from the meds might cause it and i imagine the doc. is monitoring your blood for any complications, that said i feel more comfortable doing my own research as well in order to keep up on things and also give me some what of a feeling of control in a bad situation... the good news is that the new meds are more effective and now ,after almost 50 yrs of being infected i am quickly and steadily becoming virus free. i doubt that my case is anything like unique so it is a very hopeful sign for anyone "taking the cure"  good  fortune to you and your treatment, you should be well soon..those weeks have been flying by for me and as you start to feel better you will be amazed at how quickly they go by.



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96 geno type-2/viral load 3 mil. sovaldi/ribavirin w/onset of cirrosis, 1st time treatment (12 week treatment).
Tig


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Hi Bill,

Welcome to the forum! We have other members from Australia as well, but if memory serves me, you may be the first on a Dalkinza/Sovaldi protocol. I'm certain there will be several others welcoming you soon. We have a great bunch of helpful people, so make yourself at home.

I don't see much documentation regarding your combo and cardiac irregularities. The one mention to note however, is if you are on any other medications that may have an adverse reaction. The one that really stands out is Amiodarone. That drug is well known to cause significant issues, namely bradycardia, when taken with Dak/Sovaldi. The literature doesnt list any other drug interactions specifically. It sounds like you're on top of these possibilities, so I'm sure you and your medical team have reviewed every possibility. I'm sorry you're dealing with these problems, I'm sure it can be worrisome for you. But it does sound like you're on top of it. I don't have to remind you to be cautious and aware of any changes!

The Dak/Sov protocol of 24 weeks is indicated for those with advanced fibrosis and has a rate of success right around 90+/-% for Geno 3's. A Fibroscan of 11.6 equals an F3 and those 18's would be classed as F4 and indicate cirrhosis. The liver enzymes alone aren't an accurate indicator of fibrosis. Did they run a Fibrosure blood test by chance? That is a blood test that can "ballpark" fibrosis levels, but biopsy and Fibroscan are your most accurate. So imo the 24 week course seems warranted and appropriate. The Ally trials seem to provide the most documentation on the results of this very effective protocol. If I can provide you links to that, let me know.

I wish you the best of luck going forward. Please keep in touch and let us know how things are progressing. You're one of the few we have on this newer combination and everything you care to share will be most helpful and informative. If I can be of assistance at all, don't hesitate to ask! Good luck mate!!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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billym


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I'm 55 yrs, male, married, 2 grown up children, retired city Firefighter and also have a photography business.  Fit and active, love the ocean and go surfing most days and overall have been generally well living with HCV, although have had recent pain in the gall area for 6 months prior to starting treatment, which has all but disappeared a few weeks after starting the meds.

Contracted hep c geno 3a in my early 20's. ALT's 100+, Viral load 14,000,000. Last couple of Fibra scans have been around 11.6 but I have had a couple of 18's a year or so ago, so they are not sure if I have cirrhosis or not. But they're guessing that Im F3 because my bloods are not that bad.

I have started 24 weeks Sofosbuvir/Daclatasvir. Now in week 10. Viral load of 15 at week 4. Undetectable week 6. Side affects - insomnia and anxiety. Anxiety was bad but has settled some what. I have also been experiencing what feels to be a heart arrhythmia problem when exercising sometimes. It feels like my heart is skipping beats, feels very strange. Sometimes when I stand up or lay down also but more often when my heart is elevated. All my bloods are great and blood pressure if normal. They didnt pick it up during a stress test as it didnt happen but it seems to be happening more frequently over the last few weeks. Ive also had a heart CT scan which showed no defects or disease. Going back to see my cardiologist in a week to try and figure out more. I was wondering if anyone on treatment has experienced anything similar happening with their heart while on treatment? It doesn't seem to be on the usual list of side affects.

Bill

55 yrs, Gen 3, tx - Sof/Dac 24w

 

 



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