TOPIC:

Thanks DT
Dr F thinks I am F4 from pre tx bloods
Don't understand why it wasn't picked up on before.
I have been questioning the whole thing for over a year, got nowhere.

Having said that, recent USound said I didn't have cirrhosis, but they didn't look sure and asked if i'd 'had any operations' so I guess there was some scarring spotted.

Hopefully, if no cirrhosis and a few RAVs 12 weeks of Sofo/Led then 12 of Sofo/DAC may do the trick?
My concern is, if it doesn't I'll have RAVs to both Led & DAC by then.
If I could have a gene test now, surely any RAVs twards DAC would show up as I've been on Sofo/Led?
That could well be helpful and help my decision, you know? Think you can also check resistance to Simeprevir?
It's all rather confusing right now, need to work it out, and soon due to needing to order more meds so no gap in treatment.

This new LiverMultiScan nxt weekend should give a much better picture of liver health hopefully, albeit kind of a bit scarey !
ps Alt 14, so at least something's working

Another thought, if no cirrhosis is found, would it not be possible to extend current treatment fir an extra12 weeks? and maybe lead out with some Riba? or woukd it be better to change mid tx?

LG,

Well, it's up to you, but if it were me I'd err on the side of caution and go with Dr F's assessment until proven otherwise. As you have decided to do 24 weeks anyway, determining cirrhosis or not doesn't matter now in terms of making that decision. I understand that the sudden news of possible cirrhosis would be a big shock. My recipe is that now you have made the big decision to go 24 weeks, just take the next days one at a time. The main thing is to maintain an optimistic view based on the realistic chances that your tx will be successful. Again, go over the Gilead trial results. Even cirrhoics on 24 weeks had high odds of success.

I also switched from led to dac at 12 weeks. I put a lot of study time into the led & dac Ravs question. My conclusion is that if you fail tx and you are left with NS5A RAVs then you are. Whether it's both kinds or just one kind isn't going to matter a lot. The choice is to use up your biggest guns first time around or keep something in reserve for another round. You have to balance that by considering that your chances of success on the first round are better than on subsequent rounds with the current DAAs. My choice has been to use the big guns up front. If it does not work then I'll wait for velpatasvir which is rumoured to plough through all RAVs, no matter what kind. But we'll have to wait and see about that. Anyway, there will be something coming that will be strong enough to do that - hopefully.

I still think the gene test will be superfluous. Some RAVs are sensitive to led, some RAVs are sensitive to dac, some RAVs are difficult to clear for both drugs and just need to be battered for a long time. Remember that it is Sof that does most of the battering, not the led or dac. But I'm not a doctor. If doc Freeman thinks it's worth while then it is. If you do go ahead with the testing then yes, you can test for NS3 resistance (simeprevir) as well. There's info on this post from somebody who got the testing done:
fixhepc.com/forum/patient-stories/744-vi...nt.html?limitstart=0

dt

Hi LG,
Have you talked with Dr. James lately?
M

Thank-you DT, yes I think i am in shock!
Good to hear your opinions and your own experience, thank-you.

I am not thinking so clearly right now, there I was, thinking I had it sorted and really optimistic and wham - Have to consider treatment options all over again. Hoping the scan nxt weekend will give a more clear picture.
I have always suspected my F score was wrong .

Hi M, Yes, it was Dr F who thankfully took the time to notice things weren't right and looked into my blood tests pre tx.

As I say, I had looked into bloods myself a while ago and asked questions at every consultation I could, but was met with 'You are mild fibrosis, you can wait' without any testing, nothing! I got in touch with my previous brilliant consultant, a Professor, now retired. he told ne to get an USound and to 'push' for treatment.(just had that, they said they couldn't see any cirrhosis ). It seems now, the new HepC consultants just glance at your last fibro and then put you back on hold. This is why I decided to take matters into my own hands and start treatment, instinct and quite a bit of reading. The time difference with Aus is a little tricky, I am just aware that I need to order some meds and soon, in case anything goes wrong with delivery and just talk it over a bit, you know?

Have changed uk consultant now who is being very helpful, but it's always worth asking for fellow patient experience no? It does help me to think more straight. I thank you all for that

Hi LG,

Between Dr F and your consultant you will get the correct advice. You have one of the most experienced clinician with DAAs in your corner and your UK consultant will know where and how to get any tests you need or can find out for you. Get as much advice as you can from both and listen to them rather than us amateurs. And any cirrhosis would need to be very well compensated to get LFTs that low so probably just a bit of fibrosis. There is no value in worrying, you will always have options so relax and let them sort it out with you. Remember the and get them in a nice neat line.
Thinking of you.

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

DT the malabsorption thing - I have been trying to address the issue of malabsorption for what seems like forever and a day, I had it with food pre tx - My triglycerides were totally out of range, very low, I read this points to malabsorption / malnutrition, I was way too thin.

Now on tx, I have gained some weight, but is it the right kind of fat? maybe i still have trouble absorbing anything I swallow properly? It is a complex subject, I do not profess to understand it. The abnormal test result showed up in a private blood test under the cholestorol section. It took me a while to find any data on it because most papers are written about too much bad fat concerns but when I did Bingo ! Seemed to make total sense to me as to why I could not hold any weight .
I have mentioned this to a variety of people but no-one seems to think it's an issue or have any answers. But maybe, just maybe it is hard for me to absorb the meds properly as Dr James mentioned? If this is true, how do I go about absorbing them better? Diet? With food? or is it a completely different & much more complex matter? I wish I knew the answer.

Re ravs, I guess I'm worried about lessening my options for the future now , it's all new thinking for me as if yesterday and I'm not really 'getting it' yet and my mind seems to be foggy .I appreciate your experience and opinion.

I think I could maybe access Simeprevir but whether I can afford it is another matter.
I think this scan nxt weekend would help me decide, if there is cirrhosis or not, hopefully I will find out, meanwhile I can ask advise of Dr F and my other Drs and be prepared!
Thanks DT

ps How is your 2nd lot of tx doing? How are your bloods VL etc?

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

I've been reading all your posts LG...Indeed dointime...absorbing...LG...Have you ever tried or heard about makrobiotics...I know It's weird to talk about it right now...I'm just wondering what you eat really...what are you eating actually...?

Interestingly, my last blood test showed a slight high out of range in Mean corpus. Haemoglobin (MCH)
On reading about it, it can cause malabsorption of nutrients etc due to low VitB12 . I am taking VitB12 supplements, so if I wasn't, it may well be further out of range.It seems it's all about a messed up digestive system, bile and stomach acid etc and is common in liver desease Hmmm Could it be that malabsorption of nutrients could also apply to malabsorption of medicines? or is that a crazy banana kind of notion.

Think I've read about this before and that's why I have taken VitB12 for a while now. I did alot of reading, but cannot always recall at a later date why, just that I did and came to that conclusion through much research!

Just found out, that low VtB12 can cause low stomach acid!
and apparently Sofo/Led needs this.
Well folks, how to I get that stomach acid going?

Hey Life How are you? I eat a pretty healthy diet I think, Fish, veggies, pasta, rice, fruit, porridge, wholegrain bread, errrmm cheese (lots) Hot cross buns ha ha Lentils, eggs, love dahl, curries , Everything except meat, but fish is meat right?

I drink alot of coffee on waking, maybe too much, it's a cleaner after all?

"Inadequate stomach acid. A much more common cause of deficiency, especially in older people, is a lack of stomach acid, because stomach acid is required to liberate vitamin B12 from food. An estimated 10 to 30 percent of adults over the age of 50 have difficulty absorbing vitamin B12 from food. (1) People who regularly take medications that suppress stomach acid—such as proton-pump inhibitors, H2 blockers, or other antacids—may also have difficulty absorbing vitamin B12 from food. Even people who lack adequate stomach acid can typically absorb vitamin B12" www.hsph.harvard.edu/nutritionsource/b-12-deficiency/

I think this scan nxt weekend would help me decide, if there is cirrhosis or not, hopefully I will find out

I can understand that this question must be giving you a lot of anxiety and you want an answer on it.
What I'm not sure about is how that answer will help you decide on anything? As far as I'm aware, the only decision that is relevant to cirrhosis is whether to treat for 12 or 24 weeks. As I understand it, 24 weeks is already decided upon.

If you are just needing a milestone in the future as a way of delaying your decision while you gather your wits about you and consult with your doctors then that is very reasonable. Otherwise, with time not on your side, I'm not sure what factors to the decision making process that you hope to gain based on the results of your upcoming scan.

dt

well, yes dt, I will do 24 weeks, but if cirrhosis is there it could be more thoughts on which meds,
Riba has been suggested eg

I am looking at your stats, I can see you're like me a late respond-er if memory serves me correct your
Fiber score was F2 7.4 now its being suggested you're a F4 17/20, you're also a G1 which responds well
too this treatment.

I know,fiber scans can be off I have never heard of it being off too that degree,I think you said James
thinks you're a F4 is is possible he is saying you're Acting like a F4, by this he means you're reacting like someone
cirrhotic slow to respond they are two different things. He said same too me it all worked out my end.

Sure, you're Viral load is going down albeit slower then others, if you recall my own Viral load tests at
at week 6 was 17 higher then you it was still detected then week 10 its Undetected you still have six weeks
plus to get undetected.

I think this needs some very careful evaluating I don't think you're F4 we all have some scarring on our livers
its not something I've ever worried about.

Hi Sirch,

Thanks for your input. I am now in week 8, so I have only just over 4 weeks to go, not over 6.
My feeling is that I have trouble with absorption, but what do I know? I don't think I absorb food properly and I don't think I'm absorbing the medicines right either, poss due to low stomach acid (shown as a possibilty in latest bloods). Well, that is todays theory anyway. Either way, it has been a worry and I'm just trying to hash it out.

Aside from that, it is our good & knowledgeable Dr Freeman who has checked my pre tx bloods and thinks I could be F4 - It gave me quite a fright. He is looking for reasons for what he calls my 'very slow and rare response' according to his data which he has shown me He is also considering other options such as genetic resistance and problems with absorption. I am undecided re the F4 idea, but how can I know? but if you read through the posts, I am having an MRI nxt weekend which could maybe clarify and recent Ultrasound showed ' no cirrhosis as far as they could see' but they could see scarring. So it's not something I have dreamed up, rather we are trying to get to he bottom of it. I was 8.7 fibro in 2014. Next fibro was questionable and I didn't trust it at all.

If I need to do an extra12 weeks, as highly recommended by Dr Freeman as my 'minimum option' then I have around 4 weeks to make a decision. So that is what I'm trying to do while I'm not at work and have time. This is all on advise of Drs . Sure, I was concerned that at 7 1/2 weeks VL was 68.

Re the Riba, this has also been suggested by Dr F and another hepatologist as a possibility along with Simeprevir, I hadn't thought about it until concern was show and latest VL test, would probably like to continue longer on Sofo/ Led if I could, but thinking the lack of stomach acid may be a problem