Forum Replies Created
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Hi all,
My understanding of quantitative viral load testing is that while pretreatment levels were considered somewhat indicative of likely response under the old interferon treatments they are much less relevant with the new DAAs. They are still useful while monitoring treatment to see whether you are responding quickly but mostly at a “comfort” level with the real tests being qualitative at EOT and most importantly SVRxx. (And obviously important for RVR testing such as Dr James was recently performing with the Sof/Dac tablets to show they were as effective as the seperate APIs)
When writing my scrip and 4 week monitoring tests my specialist checked my records and said something to the effect “oh, we don’t have a current VL. No matter, we know from previously that it will be high so let’s just see where it goes at 4 weeks”. And given that Dr James says I am only entitled to 2 freebies per year I can understand that approach because it means I am still entitled to another one later if 4 wk isn’t UND.
However that doesn’t really help you 2b with your expectation that you would get a 4wk VL result and the ease of mind that a good result would give. Keep pushing them for what you requested and they agreed to at the time. And keep pushing your doctor to support you in managing your health by explaining to you in plain English what your results mean. And probably interceding on your behalf with the testing company if that is the U.S. approach like it is in Australia.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Jolie,
Just returned from my GP who checked my BP while there and It is back into my normal range.
I do know that when my blood pressure is raised due to stress I feel very little difference and can’t really pick it by how my body feels. It is most noticeable to me when driving so I diagnose by how loudly I’m shouting at other “idiot” drivers and how deep are the finger impressions I leave in the steering wheel. A 260 horsepower Blood Pressure Monitor with mag wheels!
I do wonder how much of this is us anticipating and therefore looking for sides, so when we find something that is new or unnoticed previously, our minds focus on that and magnify it out of proportion to its true meaning. Particularly late at night in bed when our imagination is free to roam far and wide and with us being so quiet and still, everything that our body does is more noticeable.* This isn’t to devalue your’s and others (and indeed my own) experiences as they are important to us and by sharing them we can get a better idea of how universal they are and build a database of expected sides vs those that may require urgent medical attention.
G
* remind me to tell you how I spent a night in hospital in Feb this year having a “heart attack”. 15hrs with ECGs, treadmill stress tests, the works! Got a clean bill of health, nothing wrong. (My excuse now is that I’d been outside in the heat (40°C) all day and was tired and dehydrated)
illy:' />
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
If you can’t get to Dr then I would think any chemist/pharmacy would be able to do a quick check and stop you from worrying.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Jolie,
Assume you have seen mine and Enkels posts in Dan’s thread today. His sound more like yours.
http://fixhepc.com/forum/patient-stories/388-dan-s-twinvir-story.html?start=30
I wouldn’t worry too much about your blood pressure yet as easy to do wrong if you don’t have experience and worrying will just make it worse. As the hitchhiker’s guide says: DON’T PANIC
But I would go see your Dr today to a) get BP checked professionally b) get him to show you how to use monitor correctly.However, mine was up 10 days ago when I visited GP and it normally sits very steady these days as long as I take my tablets. We just put it down to my excitement over Tx and the fact that I was rapid fire telling him all about it which may well be the same sort of thing with you. But I’m back there in 9 hrs to get LFT results so will check again and report back.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Sleep disturbance is a known issue for heppers. Can be a problem on meds too. Although I’ve noticed that I’m sleeping through the last couple of days. Only about six hours then wide awake with no hope of dozing again but haven’t slept right through for years so fingers crossed that it keeps up.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Very true Paul. My specialist told me that when approval came I would be ‘one of the earlier ones’ which didn’t quite sound front of queue to me. Also told me I really needed treatment now and wrote private script for generics so that would happen so I’m not complaining.
(Hey just noticed you were BMS Dac 2011. I was class of 2013)
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Beaches,
Hehe, devils advocate eh?
Actually I reckon that is better to consider all your options so you can make educated decision rather than just rubber stamp but does confuse and discourage some.We have a few RPA monitored people here so someone should be able to advise.
Have you been promised definite treatment as soon as approval goes through? Or the usual “wait till approved” then treatment will be available. If the latter then if no luck with generic script from RPA there are other options we can suggest. Then get RPA to monitor.G
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Thanks Berrinice, good points. People get concerned about “generics” – they are exactly the same quality active raw ingredients (and the Fixhepc ones are tested to make sure) they just don’t carry the “Brand” name and the high prices.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
CJ wrote:Ha! Paul, you needed a sausage dog!
Or me! I like Brussel sprouts, can’t wait for winter each year. Yum!
…..but I don’t boil them until they are grey and mushy and stink of sulphur like Mum did.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Sounds a bit similar although tiredness is just my normal feeling from when I do too much. I’m three weeks in now and don’t seem to notice as much so either it has lessened or I’m just getting more use to it now.
What other symptoms?
G
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Also, in the forum section, it helps if you add something about yourself to the signature panel. Stuff like your genotype, fibrosis stage, how long you’ve had hep. That makes it easier to answer your questions without having to check everything with you each time. Click on the profile tab. Look for the edit tab on the right side of the grey bar and click on that then put your password in twice. Then click on the profile information tab and scroll down to the signature panel and enter a bit about yourself like I have at the bottom of my posts.
G
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Yes, want to get up, rush around but nothing to do. So sit back down, then want to get up again. Getting more use to it now.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Enkel,
Well, not really a pumping sensation as such, more a feeling of adrenaline/amphetamine. Like excited, inflated chest effect and wanting to rush around doing things.
That is why I asked Dan what he meant. Is your similar? It sounds a bit different but always hard to put physical feelings into words.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi Beaches,
The Fixhepc buyers club arranges testing of each members ordered batch of drugs prior to arranging for them to be encapsulated by a compounding chemist.
No batches have failed testing to my knowledge. If they did I assume the policy would be the same as Dr Freeman told his very first patient and they would be thrown in the bin.
There have been quite a lot of people in treatment but due to the newness only a few have completed so far.
As per the Sunrise article expectation of cure is better than 95% but will vary a bit depending on things like genotype, length of infection, level of fibrosis, etc.
I’m also not sure about resistance or numbers treated. Hopefully someone else can answer those questions here.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
JHi Beaches,
I have taken the liberty of starting a new thread with your post in the Q&A section. Click on the link below to go there.
http://fixhepc.com/forum/questions-and-answers/405-beachs-new-member-questions.html
Oops, sorry Chapel. Didn’t see you answering till I’d created new thread via link.
LOL you too zhuk.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
