TOPIC:

Although I've been reading the posts on here for ages this is my first entry, mainly because the side effects have hit me hard and I didn't want to go on too much about them, as I am extremely grateful to be part of this redemption trial. I would also like to thank Dr. Freeman for making it possible, Dr. Debasis who wrote my prescription and gave me hope, and Jan and Iain on the admin staff who have been really helpful.

I've had hep c 2b for around 40 years (I think) and was diagnosed about 8 years ago and referred by my GP to my local teaching hospital with a specialist liver clinic (in the UK), who did their utmost to persuade me to take interferon which I declined. However my ALT was 150 so something needed to be done. Fortunately I was already paying privately to see a Chinese doctor/acupuncturist/herbalist who prescribed me herbal meds that brought my ALT levels down to around 49 which I've been taking for the past 7 years.

I attend the liver clinic once a year to keep an eye on my readings and in 2016 my fibroscan was 5.5kPa and my ALT as usual 49. It was at this time I was informed about the new treatment for hep c but told that I wasn't eligible as I hadn't tried interferon first and I have no liver scarring.
Needless to say I was very upset, but through a friend of a friend I learned about this website, as she was on the redemption trial herself at the time.

I returned to the hospital in January of this year to ask if they would monitor me while I was taking the generic meds, but the consultant was far from happy about it, she was aggressive and rude and basically reduced me to tears. She even refused to give me a copy of my latest blood tests, when I pointed out that it was my legal right she told me that I had to go through an agency, pay a fee and wait 6 weeks. It was obvious I wouldn't get any help from them without a fight, which I just didn't have the energy to engage in, so I asked my GP if their practice would monitor me, to which she very reluctantly agreed.

I'm now half way through my treatment and have only just received all of my 4 week blood test results. My liver function came back as normal, and ALT level down to 31 and no problem with my full blood count, which is marvelous. My GP telephoned me tonight with my viral load result, I was really hoping that it would be undetectable but the report states RNA detectable 26iu/mil log = 1.42. The doctor is a general practitioner and not a liver specialist and does not know what these readings mean. It would also help if I knew my previous reading but I could only remember the fibro and ALT results. However does anyone know if this is a low reading - as 26 doesn't sound high to me but what do I know? I would really appreciate it if anyone can shed some light on this for me please?

Also has anyone else still suffered the side effects when into the 6th week of treatment? I have good days and some partly good days, but in the main I feel pretty dreadful with the stomach aches and upsets being the worst aspect of it. I wonder if it's because I'm 61 and had this disease for such a long time and also could it be that I only weight 115 pounds. Having said that it's a small price to pay for getting rid of this horrible disease that has affected my life in so many ways for so long now.

Anyway I hope to hear back from someone regarding the readings, my friend tells me that Dr. Freeman reads these posts, if so any feedback would be most appreciated.

Hello 2bornot2b,

26 is ok. About 22% of people return a reading greater than undetected at the 4 week mark. It's nothing to panic about but does require consideration.

In the original trials <25 was the standard (that was the best we had). We now have better tests that go down to <15, <12 and even <10. I still get some <30 results.

The significance for you is that of patients that fail to SVR 44% will still be detected at this point (like you) against 22% in the group that do SVR.

This produces an Odds Ratio (OR) of around 2. Without boring you with the maths too much the chances of success with GT2 are very high - probably genuinely around 97% so there is a 3% failure rate

For you, being still detected that 3% and OR of 2 looks like a 6% failure rate. Still good odds at about 94% but slightly lower than a patient who is undetected at 4 weeks.

In our data we have saw 32/448 patients still detected at end of treatment. Even then 75% (24/32) still went on to SVR. Your result is much better than theirs.

So what we have seen is a slightly less speedy response from you. It is still a very good response, just a little slower. What it means is that there is going to be less over-treatment buffer in the last 4 weeks or so than there is for someone who has fallen faster. You can probably imagine a faster response gets to absolute zero faster, and that's when we win.

One option to consider would be to add in 4 weeks of extra treatment. You should not need more than that.

What you don't mention is whether you are you on Sofosbuvir+Velpatasvir or Sofosbuvir+Daclatasvir?

We have 38/38 SVR12 with Sof+Dac but the results for Vel are still waiting for enough time to have passed.

I only weight 115 pounds

We have seen in people around 50 kg or below side effects that clearly related to 60 mg of Daclatasvir being just a little more than was required.

The one size fits all dosing seems OK in the 55 kg and up people, but can cause issues with small people.

Same question as before - Sof+Dac or Sof+Vel?

Do you know your renal function?

Are you taking any other medications, supplements, energy drinks, or other things (including foods) every day?

Daclatasvir metabolism is reduced by a number of foods of which Grapefruit is the most likely culprit, given it's a common breakfast food/drink.

Hi 2bornot2b,
Sorry to read about your continuing tummy troubles. One thing you did not say is whether during your DAA treatment, you are continuing to take the traditional Chinese medicines? Some Chinese remedies can cause side effects when combined with other medicines. Another issue is that some Chinese remedies contain unexpected ingredients, and those may interfere with other treatments. Please let me know if you want references for this.
Best wishes!

Thanks so much for your prompt and informative reply Dr. Freeman.

To answer your questions I'm taking Sof and Dac.

As far as I know my renal function is fine. Would it help if I uploaded all of my results? If so I'll have a go at doing it later when I have more time MSM as I'm new to this particular computer.

I am not taking any other medications and I never eat grapefruit.

I have however been taking some supplements, but always at the other end of the day from my meds. I only take them every 2 or 3 days as I was concerned that they might have a detrimental affect on my treatment. I take magnesium as I have a long standing back problem and if my levels are low then my muscles get very tight. Also a combined glucosamine, MSM and chondroitin tablet and fish oils as I have arthritis in one finger joint, which is enlarged at the moment as I'm not taking them every day. Also a good quality multivitamin as my tummy has been so upset some days that I don't eat very much. Finally a Chinese HRT tablet that helps with the hot flushes, but again not every day. I will however stop taking all of these things, and wish I had done sooner, but what's done is done and no point in regrets.

Hi Mnem,

Thanks for your kind words and concern.

I haven't been taking the traditional Chinese medicine for my liver, but as you can see in my reply to Dr. Freeman I have been taking a Chinese remedy for HRT occasionally. This is all going to stop from now on. Thanks again for your input.

Here are my liver function and full blood count results which I have just scanned as promised.

They all look (are) normal.

It's possible there is something in the Chinese HRT that is interacting so stopping that is a good idea. The others are harmless, although fish oil does not give the benefits of real fish.

Thanks Dr. J - good to know, I've now stopped taking the Chinese medicine, fingers crossed I'll be undetectable at 8 weeks.

You may like to try reducing the dose of Daclatasvir to 30 mg for 1-2 days. If you find your side effects seem to moderate that would suggest that for your small size the 60 mg dose is just a bit too big. Increase it back to 60 daily and if the side effects come back you could call that a smoking gun.

You are, by weight, getting twice the mg/kg dose somebody of 100 kg gets, so such an experiment is unlikely to cause any harm.

Thanks again Dr. J, I'll do as you suggest starting tonight and let you know how I get on.

Hi 2bornot2b,

You've been getting medical advice from the best so this is just to say welcome. It makes me sad and mad to hear about the way you were treated at the hospital by the consultant. They continue to ignore the life saving and evidence based success of the generic medications.
Well done for finding your way to this life affirming site and your treatment.

Sorry to hear you're having a rough time with the side effects and hopefully Dr F's advice will help to ease that a little. Like you I had the virus for a very long time and it is such a relief to not be carrying that burden anymore. Hang in there - all fingers and toes are crossed for you but really the medication works. It's just a matter of time.
Coral

Thanks Coral, I can't tell you how lovely it was to read your mail when I switched on my computer earlier. I totally agree with you that I'm getting the best medical advice, for which I am so grateful. It occurred to me that even if I was getting treated by the NHS with the same drugs, any concerns or questions that I might have, would have to wait for an appointment at the clinic, and then I would be keeping my fingers crossed that I got to see the one doctor there who doesn't upset me or piss me off. From the very outset they have tried to scare/manipulate me into having interferon which I made very clear I would not participate in. What also annoyed me was that when they first took my bloods my ALT was 150, which went down to a consistent 49 after taking prescribed Chinese herbal medicine, instead of showing an interest in this they would lecture me about the dangers and possible side effects when there were non. Anyway enough of that, I could go on and on, but best to move on and not focus on the negatives in life.

As far as the side effects, well they do seem to be easing off a bit. I can handle them all, it's just when my tummy kicks off it really gets me down and it's not been as bad recently. I do feel flat emotionally and detached from things around me, then the next minute I'm over emotional and very weepy. Last night I tried to cut the daclastavir in half at Dr. J's suggestion, but it's a small hard tablet and it was having none of it. It was turning into a cartoon type situation as I tried various things to split it, so I'm waiting for a friend to come over to have a go. If it does prove impossible then it's just to bat on as I'm over half way through my treatment now, and I'll take the side effects all day long if it means that I will finally be free of this horrible disease.

Having read your treatment info it looks like you had to take another course of Sof/Dac due to slow response. Am I right in thinking you had to do this for another 12 weeks? Anyway it looks like you're clear now which is just the best thing ever!

Warmest wishes,

Carol (2bornot2b)

Hi Carol,

2 words: Pill Cutter!

It is a triangular holder, with a small blade on a pivot bar. Kind of like a miniature guillotine for pills. About 2 quid in Boots or Superdrug

www.superdrug.com/Pillmate/Pillmate-Pillcutter/p/244155

James-Freeman-facebook wrote: Hi Carol,

2 words: Pill Cutter!

It is a triangular holder, with a small blade on a pivot bar. Kind of like a miniature guillotine for pills. About 2 quid in Boots or Superdrug

www.superdrug.com/Pillmate/Pillmate-Pillcutter/p/244155

I'm sure Dr F's recommendation is solid....spend the $$$ for the best
available. It will save you money in the long run.