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8 February 2017 at 6:20 pm in reply to: Psychoemotional ups and downs. Their associations with hepc #25251
Hi GF,
I’d like to say thanks for thinking of a couple of rather anxious people. I appreciated it and share your sentiments about Dr F even if my liver isn’t so thrilled by the Yard’s Thomas Jefferson Ale recommendation. (Damn, its past midnight here and still over 30°C) You of course should relish and enjoy a cold Ale or two due to your good liver status and I feel sure you will find a fulfilling channel for your improved energy and alertness. This is something I feel many of us will need to do post treatment.
Hi RSF,
Thanks for raising what I believe is an important topic. I’ve been struggling to put down my thoughts for the last couple of days and I’m still not quite sure that I’ve worked out how to express it yet but would like to add a couple of comments.
While I wonder and wouldn’t be too surprised if this virus itself physically manifests as anxiety and depression I am sure that the stigma and ignorance associated with it is a very significant factor. For many there is little opportunity to talk about our worries as we would want to and even when there are those we can confide in they often don’t truly understand this virus or comprehend how we feel, yet empathy and understanding are so important when dealing with and alleviating anxiety and depression. Probably not news to those reading but I do want to distinguish between ignorance which we can all help reduce in some small way even amongst some in the medical profession and stigma….for which there can be little excuse.
After SVR? For some it probably will be a case of ‘getting on with the rest of your life’ but for others there will be a need to take stock of what you have been through and how that has affected you and then decide ‘where to from here?’ I don’t have any answers myself (yet) but suggest to those who are in this situation that you now have plenty of time to figure it out. I know you will, so take joy in life and savour it while you are doing so.
Well, enough from me for now, I look forward to hearing others thoughts.
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
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
6 February 2017 at 3:36 am in reply to: Beacon Pharmaceuticals … Sof, Dac, Sof/Dac, Sof/Vel Combo #25218Looks like their server was down? Seems to be okay 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
Well, other fluids are good too. Tea, soup, fruit, etc. will keep you just as hydrated although water has nil calories or caffeine, etc.
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
Sven’s post #23596 restored.
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
Whoops!
Sorry Sven, I just deleted your post below, I’m all thumbs this morning.
I can’t reinstate it so I’ve left a message for someone with Admin access to look into it.
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 Maylily and welcome.
Congratulations on commencing treatment.
As you will have read in this thread most people find Sofosbuvir + Daclatasvir to be fairly easy to take with mild side effects although these seem to vary from person to person so it is difficult to predict which, if any, you will experience. I did notIce the lightheaded/dizzy feeling you mention at the start of my treatment. I found that it reduced considerably over the first week as I adjusted to the meds although the ‘full’ or ‘thick’ effect remained mildly present for a while longer. From my experience these medications do seem to increase our fluids requirements a bit so ensuring you drink plenty of fluids throughout the day to stay well hydrated will assist to reduce any side effects you experience.
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
64xgeo wrote:SVR24 for me, now . Thanks God!…
Congratulations 64xgeo, cured!
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
28 January 2017 at 2:53 am in reply to: Are New Drugs for Hepatitis C Safe? A Report Raises Concerns #25152As noted by others the numbers of adverse events reported in the review is relatively small in comparison to both those treated and the potential risk of non treatment. As such the level of testing before and after treatment should be appropriate to the risk factors for the individual patient and I would be surprised if monitoring doctors did not include CBC, LFT, etc during treatment.
Edit: Some further reading about this report provides additional perspective and the following comments.
Douglas Dieterich, MD, director of the Institute for Liver Medicine at the Mount Sinai Health System in New York City, downplayed the significance of the report and said the findings should not change physician practice.
“The data in this report do not conclusively prove the hepatitis C medications Sovaldi and Harvoni cause liver failure. Without clear evidence of cause and effect, we cannot risk this information deterring patients from seeking the care they need,” he said in a prepared statement…..
……Even if the drugs caused the liver failure — and this report doesn’t prove that — the rate “is likely much lower than that of the liver disease itself,” he said. “We don’t know how many of these patients were cirrhotics but even healthy cirrhotics have a 10% per year mortality rate. For decompensated, it’s more like 30%.”
http://www.medscape.com/viewarticle/875010?src=wnl_edit_tpal&uac=250627FN
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
28 January 2017 at 2:13 am in reply to: Are New Drugs for Hepatitis C Safe? A Report Raises Concerns #25151Moved post to the appropriate thread. Please start at the top.
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
27 January 2017 at 1:23 am in reply to: Are New Drugs for Hepatitis C Safe? A Report Raises Concerns #25145Moved to the other post on topic
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
24 January 2017 at 5:08 pm in reply to: Cimivir-l purchased in India/ Other medical judgments of Hep. C #25123Hi Gert,
I don’t think he meant that the doctors should import it, as you say that would be illegal. But when they saw your results using generic medications they may have more confidence to support and monitor other patients who import generic medications for personal use. Some of them may even have other patients that they want to help by telling them more about personal importation?
Many countries have a three month rule for how much medication can be personally imported. Most allow further imports to be made before the first one runs out if there is a requirement for a longer treatment.
Drop boxes are where something is shipped from one country to an address in another such as the U.K. When it arrives there someone reships from the U.K. to the final destination. (So double the freight cost but should be more acceptable to customs as it was shipped from country within EU.)
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
21 January 2017 at 5:04 pm in reply to: Cimivir-l purchased in India/ Other medical judgments of Hep. C #25098Hi Gert,
Welcome and ongratulations on commencing treatment and starting down the road to better health.
It is a shame that you had to leave your own country and travel to the U.K. to receive delivery of your medicine but I’m glad to hear that you have found a hospital prepared to monitor your blood tests during treatment. It is encouraging that your doctors are prepared to support you and hopefully they will do the same for other patients from Denmark who take a similar path of using affordable generics.
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 DennisP and welcome.
If you read the article that Dr Freeman linked in the following post you will see that it states:
“In patients with HCV gentotype 3, the new drug did better in sustained virologic response and “hints of lesser harm” in that there were fewer reports of adverse events.”
It doesn’t state how much better the SVR rate is but from what I have read elsewhere probably in the order of a couple of percent.
https://fixhepc.com/forum/hcv-research/1348-velpatasvir-not-better-than-earlier-drugs.html#22381
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 doxner, congratulations on your excellent blood test results.
A number of us have experienced higher blood pressure during treatment, mine jumped by 30-40 points during the first month but then settled back to normal. Not sure whethther this is a side effect that the medication has on some of us or just the excitement and stress of being on treatment. I see you have discussed this with your doctor so they should be able to monitor and advise.
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
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