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Hep C Discussion Forum -> On Treatment -> Week 8 sof/fav/riba
Post Info TOPIC: Week 8 sof/fav/riba
Sydhanrahan


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RE: Week 8 sof/fav/riba
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Ahhh, so that explains it. 

I am going to my GP in the morning to ask for another blood test and to ask her have a look at my urea levels and whatever else relates to kidney stress. 

I think to a certain extent a might be just falling through the cracks in the system. There probably haven't been too many patients accessing these drugs who are involved in both systems. I didn't want it that way - the hospital clinic was the only way to gain access to Daclatisvir on compassionate grounds. But I think both private and public systems are expecting me to be treated by the other one. If that muddle makes sense. 

I don't want to kick up a fuss and make either side angry with me. So it makes sense to just go back to my GP and ask her to do more bloods so that she can decide where I go from here. She is a very thorough and well versed GP and  I trust her.

its still great though to have your advice on what to ask and where to direct my attention and I really appreciate the time you take helping me and many others.

cheers,

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
mallani


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Syd,

Just for info, I AM a doctor, albeit a retired GI Radiologist. However my musings are just that. Always listen to your own Medical team, but it's OK to ask questions. I drive my Hepatologist to despair! 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
wmlj1960


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Sydhanrahan wrote:
 because you've been on the journey and your background and interest in keeping abreast with all the latest Research means you know more than most doctors too. 

Syd

 I assure you that is more true than you realize. He is a very valuable asset for all of us here.



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Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Sydhanrahan


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Sorry Mallani, 

your word is gospel to me!!

Seriously I read your input with so much respect. I know you're not a doctor but you spend more time thinking about individual's progress than the average dr, have.great empathy because you've been on the journey and your background and interest in keeping abreast with all the latest Research means you know more than most doctors too. 

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
mallani


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Good point!

Anything said on the Forum is NEVER to be taken as medical advice.

It is just one person's opinion and is meant to be just that- a personal opinion. 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
JimmyK


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Greetings Syd.

You have to stay all over these folks. One of my nurses actually apologized for some of the bumbling of blood work that happened in my case but then went on to say, and this is verbatim,

"....but the good news is, you're clear of the virus."

By that time "happy" was not in the same room with me I can tell you.

I responded with, "Clear? If you mean UND then I don't know what you are looking at but 115 is neither clear nor UND."

"Wait just a moment..." <papers being shuffled then I hear> "Oh my, you are correct."

The plain fact is if it were not for this website, I would have been clueless and would not have known she was wrong.

So as a bit of further advice for you, please by all means stick with us here. Make frequent stops in here and arm yourself with as much knowledge as you can. You will NOT get Medical Advice here and that is in fact reserved for your Health Care Provider. But you will be armed with enough to question their every HUMAN step and thereby garner greater attention for yourself from them.

It is perhaps a great thing you found this out now rather than at what should have been your future SVR12 after a regime that was just short of the goal post.

 

Hang in there!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

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Sydhanrahan


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Hi Tig,

i know it's the best way to look at it. No time for negatives like blaming others for incompetency. I am glad ive been offered this extra therapy AND that I'll be one of the first in Australia to get it on the PBS automatically. Just took me 24 hours before the emotions caught up with the logic.

thanks for your encouragement.

Cheers, 

Syd

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Tig


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Hey Syd,

I'm sure the news that your treatment could be extended by another 12 weeks comes as a shock. I like your attitude though, that you're ready to take whatever they throw at you. The only unfortunate thing is that they didn't prepare you for 24 in the first place. I'm thrilled that they discovered this oversight (error) regarding the cirrhosis and are able to simply extend treatment. Had you found out after the fact and things not worked in your favor, that would've been infuriating. Fortunately you're going to get this resolved in short order and continue on to a successful conclusion. 

You've got us all cheering for you and I know there is nothing but good news ahead! Stay positive, stay compliant, keep hydrated and before you know it, we'll be doing some celebrating!! Keep us informed, we're here for you...



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Tig

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Sydhanrahan


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Thanks Mallani,

i was hoping you'd look at the results I did get. I have written your advice down and will see my GP during the week.

Chhers, 

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
mallani


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Hi Syd,

Insist on getting a copy of all your blood work.

It's good to see the ALT coming down.

I'd be a bit concerned about the eGFR. 64 is a bit low. I'd get a full urine analysis and monitor it. Below 60, and I'd want to see a Nephrologist.

The low albumin is a definite sign of cirrhosis.

Even for a Geno 2, 24 weeks would be a good option. Best of luck. Cheers.



__________________

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
Sydhanrahan


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Hi fellow commuters,

I went for my 8 week check up today. The doctors are very busy in that clinic and this dr said she hadn't noticed I had cirrhosis because my June tests aren't with them, they are with the specialist. So she suggested in light of that, that I should be on 24 weeks of treatment instead of 12.

These drugs will be available of the PBS on the 1st March and my treatment was to finish on the 4th. so I am booked to go back on the 2nd when, hopefully, they will be ordered and available for me to pick up. I know eventually I will be grateful about the added insurance of the extra 12 weeks as well as  about the amazingly arsey timing. However at the moment I feel like someone who thought they were three quarters of the way along the track, only to find out it's not even half way. I don't feel as though the Ribaviran is doing me any favours and was so looking forward to no more itching, nausea, mood swings.

i did ask for a copy of my liver results but only got a what must be a general blood test result.

Hopefully it will show up as an attachment.

And maybe by tomorrow I will have caught the whatever-you-throw-at-me-I'm- ready-to catch -it attitude of so many of you on this forum.

Cheers to all, 

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
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