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Something happened in the middle of the week 5. It first started with blurred vision and some general weakness. I had to go home from work because I could not see much in the computer screen. That blurred vision and weakness soon passed, but ever since that day I am having liver pain – sometimes sharp, sometimes dull pain in my liver region. I have had similar pain before, but never so intense. It is quite unpleasant, present for the most time of the day. I had F2 level fibrosis in biopsy 10 years ago, but liver density measurement showed F1 last year, so I am not exactly sure how damaged my liver is.
What people forget is that just because you have Hep C and just because you are taking treatment…. all the other medical events that happen to people in their 40s, 50s and 60s still happen at the usual rates.
This event sounds like a Transient Ischamic Attack (TIA) otherwise known as a mini stroke. You need Blood Pressure, Cholesterol, Doppler U/S of carotid arteries. 1/2 an ordinary aspirin a day (150 mg) is probably a good idea. Fixing Blood Pressure, and treatment with a Statin (almost regardless of Cholesterol level) decrease the chances of recurrence. Please talk to your doctor about it and get those tests done.
YMMV
24 January 2017 at 7:26 am in reply to: Cimivir-l purchased in India/ Other medical judgments of Hep. C #25116When shipping to Denmark
§ 5. Individuals may for personal use for disease prevention or treatment import legally acquired pharmaceutical products intended for human use per. mail, courier shipping and the like from countries that are members of the European Union or covered by the EEA Agreement.It is illegal to import drugs in transit from a country outside the EU / EEA
It is illegal to import medicines when shipped from a country outside the EU / EEA. This means that the import of medicines by mail or courier from countries such as China, Thailand, Switzerland and the United States is illegal. “The clarity of the Danish rules do rather suggest that:
India / Egypt / Bangladesh -> UK drop box -> On ship to Denmark
If there was some interest in Denmark setting up a trial shipment of two like this might be a good idea. The 1 x extra Fedex cost would be a lot less than physically travelling to the UK.
Once your doctor has seen you do undetected (in the next month) they may be interested in getting treatment for other patients.
YMMV
Hello Spook,
Sorry to hear that. The basic guidelines for retreatment are longer, stronger, add ribavirin – pick at least 2.
There is more on this here: http://fixhepc.com/forum/retreatment-corner.html
Although prices have fallen over the last year the longer/stronger bit means it will probably cost more for retreatment. You would be wise to wait about 6 months to get access to Sofosbuvir + Velpatasvir + Voxilaprevir which will be available this year (when the Vox arrives) and cheaper than anything of similar “kick ass” potency available now.
YMMV
Hi Browny,
Sadly this sounds like a late relapse. Late relapse, between SVR12 and SVR24 is rare – about 777/779 people with SVR12 will get SVR24. The problem with that 777 is it also says 2/779 – roughly 3/1000 will relapse during this period.
http://onlinelibrary.wiley.com/doi/10.1002/hep.27366/full
There have been thousands of patients treated with generics so even these rare “a few chances in a thousand” things will happen a few times.
You need to do a quantitative HCV PCR RNA to confirm. We have seen lab issues where a positive result on the qualitative comes back negative. These sorts of errors are rare but like other rare things do happen.
Assuming that you are positive retreatment is certainly possible. We must have been very close to cure last time….. The basics of retreatment are pick at least 2 of longer, stronger, use ribavirin.
YMMV
The current system is 90% broken. Or maybe it’s 50% broken, but regardless of what number you want to put on it the reality is that Big Pharma is failing to adequately look after the citizen payers that fund it.
It’s worth reading my article from Liver International for an overview http://onlinelibrary.wiley.com/doi/10.1111/liv.13157/full which covers off on a lot of the arguments. Like the 19 x disparity between spending on marketing (25% of gross revenues) and R&D (1.3% of gross revenues)
Profit is a great motivator but as things stand we have a massive lack of innovation because there is more profit to be made at lower risk by minimal modification “me to” drugs and simply ever-greening existing technology through trivial chemical modification. TDF and TAF for HIV are a perfect example of “non innovation” being granted a new patent. The fact that Gilead has pushed the more poisonous TDF onto patients despite developing the lest toxic TAF form of Tenofovir at the same time should be cause for global outrage. It isn’t, but it should be.
For those that don’t know Tenofovir is an HIV/Hep B treatment. The active bit is Tenofovir. The salt bit is either disoproxil fumarate (TDF) or alafenamide (TAF). TDF causes long term side effects. TAF can be taken at a lower dose and causes less. Both were invented at the same time (no doubt along with many other salts of Tenofovir) but TAF was shelved so it could be rolled out as “New improved Tenofovir” but more importantly with a “new patent”. This is bullshit, scamming and ripping off the insurers and taxpayers. It’s better than “New Coke” but at least they did not get to patent that. Pushing forward something more toxic (when you have something less toxic) should be a “Do not pass go, go directly to jail” offence. If not that a “Please explain” congressional hearing. And failing that a “Go and stand in the naughty corner”.
It took a long time for things to get this broken, and it will take a long time to modify things to favour new innovation, however it is something that has to happen.
The simplest way for “fix” drug pricing is to apply market forces.
Parallel imports from allied markets ie From Canada -> USA would halve US drug prices more or less overnight. I expect this is what will transpire as it is the path of least resistance.
YMMV
There’s no doubt that for many patients the impact of treatment is remarkable.
Best of luck for SVR!
YMMV
4 January 2017 at 5:57 am in reply to: Will my lichen planus go away if I fully recover from HepC? #24897Hello Jorge,
Your skin is mostly dead layers peeling off, so even if we could just wave a magic wand and cure the cause your skin would not magically change at that moment.
I presume things are cyclical with better and worse bits. In the event treatment helps it would still take as long as it usually does to settle down, more or less.
YMMV
Re: “Sof/Dac PLUS in July Doc Freeman gave me a Baseball Bat to knock it out and It has WORKED A TREAT.” – would the ‘bat’ be Riba and how long ??
The Ruski drug was BMS originator Asunaprevir which is a GT1 specific NS3/4a DAA like Simeprevir, but at a better price than the $1k per month for Janssen originator Simeprevir out of Egypt.
YMMV
21 December 2016 at 6:37 am in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24776I plan to reassess my treatment duration pending the outcome of the (much awaited) first results.
If I was you I would not be doing that.
While undetected at 4 weeks is a good sign, undetected at 12 weeks is essentially meaningless. Everyone is undetected by this stage. In other words this result informs nothing. Yes, nice to see, but useful or informing treatment duration – no.
YMMV
21 December 2016 at 6:33 am in reply to: Daklinza/Sovaldi- side-effects and treatment duration #24775I have also gained a large amount of weight (11 kg.), since beginning treatment.
I would be worried that is fluid as in ascites. Are your ankles swollen/do your shoes still fit.
If it’s not fluid it’s fat and you would need to be really pouring the food in to gain 1kg of fat a week.
YMMV
MELD is short for “Model of End stage Liver Disease”
It’s utility is for sick people.
In interpreting the MELD Score in hospitalized patients, the 3 month mortality is:
40 or more — 71.3% mortality
30–39 — 52.6% mortality
20–29 — 19.6% mortality
10–19 — 6.0% mortality
<9 — 1.9% mortalitySo at MELD <9 that 1.9% mortality represents about what you'd expect when you consider that's about the average annual death rate for adults ie these patients are dying of other things at expected rates, rather than liver disease.
YMMV
Although it can be a bit of a crap shoot, if there is a UK script my undesrtanding is that VAT can be avoided. If there is not a UK script it can’t (unless they forget about it which does happen).
YMMV
So what happened here is that sumblues sent the money but for reasons unknown HSBC cancelled the transaction. So that left sumblues having sent the money and Beacon not having received it.
Anyway it’s been sorted although the medication won’t ship until the 19th. Why? The first 6 batches of Sofosvel have flown off the shelves and new batches are currently in process.
With Indian production availability said to be 6 months away Bangladesh remains the go to place for those requiring a generic Epclusa.
YMMV
Anyone travelling to Bangladesh may find either of the following contacts useful
Beacon: masfik@beaconpharma.com.bd
Incepta: alimul@inceptapharma.com
Pharma companies are not retail Pharma-cies so arrangements are best made in advance.
It’s not a big drama but don’t just arrive and expect the world to be Western. It isn’t.
Make contact in advance. Outline your requirements and everything will happen.
YMMV
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