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Hi London_R
I’m not sure how long I had the virus but it is estimated about 20 years when I was diagnosed. Fatigue and crippling headaches crept up on me over a 12 month or so period which affected my work and home life. I have been extremely lucky insofar as I was alerted to FixHepC very quickly and organised my meds through them. My viral load was fairly high but my liver was in pretty good shape when diagnosed. I went on a waiting list at the Bendigo Base Hospital (which had an 18 month wait) and was well and truly cured with the generics I sourced through FixHepC and I hadn’t even got an appt by that point. I have heard that the people being treated with Harvoni etc. at the liver clinic at the Hospital are those who have very compromised livers and are very unwell. Don’t get me wrong, they are deserved of the treatment and I certainly don’t begrudge that at all although it does mean that those like myself at the time would be waiting quite a long time for treatment.
I reached SVR 12 and am cured. My energy levels have increased ten fold and it is really noticeable given that I was nodding off at my desk at work on occasion. I feel so “different” in a good way as I did two years ago. I feel as wonderful as a 61 year old can feel
This Forum and the support form the people on the Forum was instrumental in keeping me sane throughout it all. I was terrified when I got the diagnosis from the Doctor but after a lot of research and reading the journeys of some on on the Forum I have been incredibly lucky. I made a decision very early on not to got down the road of Interferon and Ribavirin.
Good luck with your treatment and stay tuned to the Forum. There is a lot of support here
Also a lot of humor on occasion too!!
53 WEEKS SINCE I WALKED INTO DR. FREEMAN’S OFFICE UNANNOUNCED … “Here I am”
Yes, one of the trailblazers. It did feel like being in a scene from the Dalas Buyers Club with patients and medications wandering through the office.
Hello Countless,
Your concerns are valid.
With your level of fibrosis, which is cirrhosis level your prognosis is not good. The 10 year mortality with SVR is under 10% and plateauing, whereas without SVR it is nearly 30% and still rising. That in an off itself is probably more than enough reason to treat.
From the professional point of view you need to be cured to work, so that is a reason to treat unless you want to change out of exposure prone procedures which may or may not be practical or desirable.
In terms of cure rate we know that the trial results always exagerate the success rates when compared to what we see in the real world. The VA did a study of over 4000 treatment naive patients taking Gilead branded Harvoni and despite the assertion from the ION trials that the success should have been 97% the VA (an independent umpire if you like) found that cure rates were 91-92%.
So the real failure rate is more like 9% than 3% in the easiest patients to treat when it’s done on a large scale real world population. We see similar results with generics, and this is the worldwide experience. Still a 1:11 chance of failure is 10 chances of success, 1 of failure. Good odds.
The DAA drugs have now been given to 1 million in Egypt (Pharco generics) and 1 million in the rest of the world. If there were any common adverse effects we would know about them now. The experience here is that almost all people have very few issues either on treatment or after treatment. There have been over 2000 people here report their personal experience and there is no censorship to hide the truth.
A Freedom of Information request to the FDA 6 months or so ago turned up this list of adverse drug reactions:
http://fixhepc.com/forum/experts-corner/786-official-foi-fda-side-effect-reports.html
20.8% (158/759) Headache
18.1% (137/759) Fatigue
5.9% (45/759) Insomnia
5.7% (43/759) Nausea
5.7% (43/759) Diarrhoea
3.7% (28/759) Rash
3.2% (24/759) Anxiety
2.8% (21/759) Vomiting
2.0% (15/759) Nasopharyngitis
[snip]Which is a near perfect fit with the “gut feel” we see in the real world. So while some patients do get side effects these are mostly low grade and transient. We observe that for almost all drugs we give if a patient is having problems with that drug taking them off it allows for resolution over time. This certainly seems to be the case for DAAs.
But for me, ultimately I apply the mum test. If this patient was my mum what would I recommend? For you the reasons to treat are the professional implications of not treating, and your current advanced stage of fibrosis.
There will always be better drugs in the future. Pick any disease, at any time in history and you can see that’s the case. While the new drugs may be better in terms of results we don’t know until a large group has taken them just how well they work, and what, if any, long term issues, or unusual issues will happen. What we have now works well and is generally safe. The risks of you treating now are almost certainly minuscule compared to the risks of just waiting around – physical health risks, mental health risks, professional risks.
The decision to treat can be lonely and must sit comfortably with you, but if you were my mum…..
The medical profession remains very split on testosterone but it seems the tide is turning although the Australian Endocrine Society has recently issued advice that flies in the face of recent international opinion.
The normal range – 28 (at age 1
to 8 (at age 80) seems a problem. It seems like it should be age adjusted so 20-40 in the 20s, 15-30 in the 40s and 8-20 in the 60s would be more in line with the question “Is this person normal/deficient for age”. With things like blood pressure we do have different values for different age people because what’s normal for a child is too low for an adult and with age higher blood pressures become normal as the arteries harden.The clinical profile I’ve seen anecdotally is depression, low libido, elevated triglycerides along with more common things like weight gain, diabetes and hypertension. I’ve seen that profile go back to fit and well with testosterone in patients who hit the previous limit of <8 (it's now <6 for government funding). I've seen a few patients in the low double digits, started on testosterone by themselves (Internet) or others report similar things, but mindful of not being too far outside the envelope limit myself to patients with single digit levels in line with the old guidelines.
