how do I go about absorbing them better? Diet? With food?

You are right LG. This is a whole big area that I know little about except the common knowledge you’ve already come across here.
ie.
LED has absorption issues if there’s not enough stomach acid present.
DAC has absorption issues with interference with CYP3A4 pathways.

Re ravs, I guess I’m worried about lessening my options for the future now

I think it is fine to stick to LED for the 24 weeks if you would feel happier with that. All the Gilead studies apply to 24 weeks of LED so that is the tested way to go. Switching from LED to DAC has not been tested at all, so in that sense it is more risky. I would never advise on going one way or the other, I just made the decision for myself. I can’t tell you that it’s worked but so far so good. Bloods good and UND.

dt

Hi LG

I am not surprised that you feel your brains are a bit scrambled right now. In your position who wouldn’t. I am also aware that there is a time pressure on you to obtain your next 12 weeks of meds before you run out. So here’s what I think is important for you to focus on right now:

a) the malabsorption issue, if there is one, needs attending to. Ovbiously, you need to be absorbing the meds properly for them to work.

b) the choice of which drug(s) you are going to order, and get the order in.

———————————————————————————————————————

Here’s a few factors which are relevant to b):
–
Simeprevir seems to be difficult and expensive to obtain. Can you get simeprevir in the time frame? If not, forget about that option.
–
Here’s my take on Resistance Testing for RAVs.
The subject of resistance is huge. I’m not sure that you can get the testing done in the timeframe that you have, but I don’t know for sure.
The purpose of resistance testing is to more effectively target the RAVs that are found. This is a good principle and would also be a good practice if we had a whole array of DAAs in our arsenal to target with, but we don’t. Therefore at the current time the choices are to go with what we’ve got and hope for the best, or wait for something better. Now for people who are trying to decide on their next tx the testing is useful because it gives them a better chance of predicting their chances of success based on their particular crop of RAVs and the capabilities of the drugs that they can get. If it doesn’t look hopeful then they can wait. But for people like you who have already started tx you don’t have the choice to wait. You’ve started and while there is hope (and there’s plenty) you need to keep on going. So no matter what the testing finds – led RAVs, dac RAVs, NS3 RAVs, RAVs with cross resistance, what are you going to do? Quit because you have all these RAVs? No, you are going to keep on going and hammer the hell out of them and take your chances. Your first time round is your best chance.

Best wishes,
dt

Hi LG,

Do not despair. It is well known and studied that some people have baseline NS5A RAVs. If you look back at the Gilead studies, the people who had those RAVs and were not cirrhotic still had 100% success rates with 24 weeks tx. If you were cirrhotic it would show up in your blood tests so I don’t see that you can be, false fibroscan notwithstanding, but you probably want to get another fibroscan anyway, just for reassurance.

As far as the gene test goes (do you mean a test for RAVs?) I’d say to take your doc’s advice, but I can’t see how it would be helpful at this time. Everybody who takes an NS5A inhibitor (led and dac) and is not UND will probably have NS5A RAVs present. The challenge, not just for you but for everybody) is to put down for good those last RAVs that are hanging on. For non-cirrhotics, 24 weeks will do it.

dt

This was a private bloods service so there’s no ‘notes’ as such, but apparently I just have to say on the ‘special requests’ part of the form when putting in my order that I want a butterfly. If it doesn’t arrive in the kit then I’m on the phone to them asap. They know that I can just walk away if I’m not happy

As far as the NHS hospital goes, I don’t think they wrote it on my notes but I’ve never had any trouble with them – as far as bloods go anyway. I just ask for a blue butterfly on the day and it’s done. All the bloods nurses there have been lovely. It is just a terrible shame that the service is so patchy within the NHS and even within this clinic. I tend to watch my step. It wouldn’t be the first time that ‘lovely and helpful’ has turned on a dime into ‘gestapo headquarters’. They know that I can’t just walk away if I’m not happy.

dt

it’s hard to let go of the fantasy that I’m going to be cured and then bounce around like a 20 year old… though at 20 I’d already had the virus 2 years and I’m nearly 60 now. Fantasies are funny things..

I think it is a universal fantasy when you get older and start to creak a bit, to wish that you could get back your 20 year old body. But for people who already had hepC in their 20s it is especially poignant because those years are all about being young and carefree and having fun. So if you are not fit enough then they pass you by. I know of really heart wrenching stories from other people who missed out on their 20’s because they weren’t fit enough to keep up with their peers. Coming to terms with the loss of those years is particularly hard. That didn’t happen to me but I still lost about the last 3 decades of my life and I think about how those years might have been if I hadn’t had the virus.

So, I don’t have any recipe for getting over the lost time but I do sometimes manage to be philosophical about it. Life happens. My dad was forced to spend 10 years of his best young years fighting in WW2 and his health was never the same afterwards. If you live in a country that is not at war then you have something to be thankful for because war destroys lives even more thoroughly than hepC. I know that is cold comfort but it’s the best I’ve been able to come up with, for what it is worth.

dt

I didn’t feel strong at all when that jobsworth treated me like she did in her little world of powertripping, just upset, tearful and exhausted by it.

Nobody does. I have also been left stressed to the max and at my wits end at times, especially when I was trying to protect my sick mother from what felt like a very big unstoppable steamroller coming straight for her. It was really like ‘High Noon’. But I knew that it was only getting to her over my dead body. Luckily it didn’t come to that, but it did take me 2 years of osteopathic unwinding afterwards to get my shoulders back down from touching my ears.

None of that should have happened to me and my mother, any more than it should have happened to you. It only could have happened because a lot of people along the way turned a blind eye. I remember each one of those people who turned away when I asked them to intervene, as was their professional duty. Toadies all. So it’s not just the perpetrators, it’s the ones in collusion too, who by their silence let it keep on happening.

So this information about PALS and the Patient Advocate is incredibly useful.

how can things improve if you don’t report them?

Right on!

dt