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Yes, that’s the same blythe tone that has got me too, when they tell you that you’ll have to wait for an indefinite time for treatment, or they announce that you relapsed but never mind because more expensive drugs are coming soon that you’ll have to wait for. Or they tell you they’ll apply for a care home place for you that you’ll have to wait for – and to meanwhile order up your groceries via home delivery if you can’t manage your shoppng. Or they give your name to the undertaker, except you don’t hear it that time.
We used to just be ‘warehoused’. Nothing moved.
Now we are on the conveyor belt. A very long one. Moving but still no progress.When you hear that blythe tone watch out because it only means one thing for you – the situation is so dire that we’re all going to pretend that everything is aok.
I can’t think of any company in recent times that has attracted so much hatred, even Big polluting Oil. If there is such a thing as karma then they’ll get theirs, but I’m not sure it works that way. I agree with you Vororo that new solutions are our best hope for that.
dt
50 years ago, still relevant today. Happening here.
A lot of people with hepC have anxiety. This is generally put down to having a psychological basis, ie. that they understandably worry about the consequences, the symptoms, the implications for their lives.
In the Traditional chinese Medicine system (TCM), anxiety is associated with a damp unwell liver. I am no expert in TCM but I want to suggest that the anxiety might also be organically rooted in the infected state of our livers.
If so then it’s important because it may underlie the shy, reclusive, publicity-shy nature of most of us. Which means that soon there are going to be an awful lot of people with livers that have become healthy again, and who no longer feel anxious, shy, reclusive and publicity shy. They will have recovered their nerve, along with their livers. I am seeing this already here, as the virus leaves the bodies of those on tx.
dt
Some kind of insomnia is fairly common with all of these drugs, especially the riba. Not falling asleep. Waking up early. Not such a big deal unless you have to go to work all bleary eyed and wore out. Not getting anxious about it helps, even if you have to take a light sleeping pill now and again to break the cycle of sleep deprivation. Other than that I use essential oils. Marjoram is the most sedative but the smell is a bit medicinal. Mix with other more pleasant smells, like lavender and Clary Sage which are both relaxing. Dilute with a few drops of lotion and spread on pulse points, back of neck, anywhere you like really. Focusing on a pleasant smell helps the mind to stop racing. Sometimes that is all it takes to drop off.
dt
For all the old Rockers out there:
dt
For somebody taking riba, my doc does blood tests after the first 2 weeks. He says that if the riba is going to be a problem then it often shows by then. After that he does another test at 6 weeks. The tests are to see if hemo has gone below 10.
I don’t know about the effect of your altitude but could you get a blood test for your hemo level? You are already past the 2 week mark, aren’t you? Depending on the blood result I expect that the good doc can advise you.
Best wishes,
dt“I think they need to be ‘gently encouraged’ to open their minds.”
Ha ha, love the way you put it LG. Would that gentle encouragement include a large sharp object?
Look, my NHS doc really is a good guy, but he has a whole clinic to run. The rest of the clinic staff are mostly lovely people as well, but everybody is towing the party line. I’ve made a few swipes at bringing the genetics into the narrative but the results were not favourable. I think they are all genuinely motivated by the fear that I will get bad drugs, get swindled, poison myself or make myself more resistant. The first problem is that they are not informed about how we have become organized to prevent these things from happening. The 2nd problem is to get the information through the door in the first place to get them informed. They are working on the coal face 24/7 so how have they got time to find out. I am sure that if I just came out with the generics it would be a BAD scene for little to no gain. Call me a coward but in this situation I am going to protect myself and keep quiet.
When the hordes from the Indian, Chinese, Polish and other communities that are not so averse to sourcing the generics overseas, arrive on their doorstep with their bottles of generic drugs, then they’ll have to think about it. If they want to call me in for advice then I’ll be happy to help them,
dt
Hi GAJ,
Thank you for joining up the dots for me. I don’t really believe in mystical planes, but the unerring way that some smart people seem to be able to divine which way the wind is blowing does seem almost mystical to me. Very good common-sense analysis.
dtHey Mike, sounds like you got your scenario figured out re. what you can get away with and what lies are going to be necessary, if any.
I personally hate to lie, I really do. I feel that there is not much in this world worth lying for. Unfortunately, getting rid of HCV has turned out to be one. I have failed to find any strategy that gets me through my tx without lying my head off about what I am doing. I am not advocating that, just saying. With attitudes towards generics the way that they are, I haven’t had the good fortune to find a doctor like yours.I am finding this situation with the drugs a bit mind-boggling actually. It’s either feast or famine. One minute we can’t get our hands on the drugs for love nor money, next minute we have an oversupply from every corner, including our ‘legitimate’ sources who have been nothing but a source of uncertainty up until the point where we give up and order the generics. Does that action somehow open the floodgates on some mystical plane to make our docs and insurance cos. suddenly bend over backwards to cough up the drugs that have hitherto been harder to extract from them than blood from a stone? What’s a sane person supposed to do with all this stop-go madness? And the time going by. And not getting any better. And then these clowns turning up just in time to put a spoke in the works, just when you are all set to go with the generics.
Well, that turned into a bit of a rant. But honestly, frustrating isn’t in it.
dtGuys – there is a little technical hitch that you need to think about.
When you start tx, your doctor will almost certainly take your baseline viral load and bloods. If you have already started on the generics (unbeknown to him) then you are going to have a bit of explaining to do when you come up UND before you even start his factory drugs. Worse case scenario, that anomaly could result is his withdrawing his treatment. I mean why would a doc treat somebody for Hepc who doesn’t have hepC, let alone spend a fortune doing it? This would be especially unfortunate for you if you need his 12 weeks of drugs to supplement the 12 weeks of generics you have already gone out and bought. Plus, you want the medical supervision from him, at least at first.
So it’s tricky. Good luck, however you decide to deal with it.
dtAlsdad – this one looks great for me. No doctor needs to be involved and you get your blood drawn. Perfect. I have been thinking about doing my own blood draw and I’m not too excited about that. Thanks so much for digging this up,
dtMike,
Only 12 weeks and 24 weeks have been tested so we are into the realms of speculation here.
If the chances are linear with time then your conclusion would be correct, but is that so? I don’t know. How long past 12 weeks does it take to eliminate the last group of resistant mutations capable of rebounding back into full HCV infection, if they are indeed still present at 12 weeks? There are different kinds of variants with different fitness levels, so which kind are still present and needing to be knocked off? Some kinds might go in another 4 weeks, some kinds might take longer. How long is a piece of string? In the 24 week tests we don’t know if the last virions standing were still standing right up until the day before the 24 weeks were up, we just know that they were no longer infectious after week 24.Wish I could give you more of the certainty you are looking for but I can only add that this virus is a tricky m.fucker and the one thing there’s not a lot of in its treatment is certainty. Not yet anyway. For this reason I am doing 24 weeks rather than the 12 recommended for my circumstances. Even then, I won’t be sure until I get my SVR24, so you are talking to the completely wrong person for an assurance that less than 24 should be fine. That’s a roll of the dice I’m afraid.
So you can do the 12 weeks and take the 95% and see what happens, then retreat if you are unlucky. That is a valid option. Depends on how that fits into your life. For me I’m 65 with 2 failed treatments behind me. I really need to finish it this time, whatever it takes.
My very best
dtPS- extending the 12 weeks to 24 weeks has been tested and shown to give 100% success, so that’s a better chance.
dtThe test is not really available yet so I’m afraid it is really pot luck. No other way to estimate the probability that you will be in the 95% who achieve SVR with 12 weeks or the 5% who don’t. Current data says that the 4-week test is not a predictor of success. So you pays your money and you takes your choice. I hate it but that’s how it is.
Good luck,
dtMike,
A significant cause of tx failure with Harvoni is the presence of baseline NS5A RAVs. The only way to tell if you have them is to test for them before tx. This is being talked about but it is not yet being done. For example, if you knew you had these RAVs you might want to think about extending tx.Here is a link to a discussion about this.
http://www.clinicaloptions.com/Hepatitis/Conference%20Coverage/Vienna%202015/Clinical%20Thoughts/CT1.aspxdt
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