TOPIC: Any help and advice very welcome please!

So I am into my 9th week of meds and have started to enjoy days when I feel so good. A bounce in my step good! I know you all know that feeling and those just starting tx it may even have happened already. It took a while in my case but then I have AF going on and that too leaves me feeling drained and breathless when I walk any distance. It is a bummer and sadly some thing I have trouble ignoring much as I try!!

Have had trouble getting on here to even read others news as J (my son) was put on antibiotics and developed the most horrendous runs to the point he was literally shitting nothing but blood and what looked like his insides.Probably TMI sorry!!!! It is hard trying to hide the look of horror on your face from someone who is totally aware of what is going on!!! Still not sure if it was antibiotics or by coincedence he had some stomach bug but all seems to be settling down. Because he has cerebral pasly of the kind that creates involuntary spasms when he gets sick the spasms get worse and he cannot even stay in bed at night so him and I have had a few exhausting nights but hey life goes on Sure I have missed lots of news from people but will try and take some time out to have a read.

I really should get to the point of my question. I started off tx with an ALT and AST that did not appear to be particularly high and I had expected it to drop considerably more than it has. Lab results are showing VL as 'not detected' which is bloody fantastic (hopefully) but I am still fretting about the ALT and AST. I appreciate everyone is different so I should not go by other people's results but it is hard not to ask the question. Am feeling very tentative about it all!

I am due to have an ablation for the Atrial Fibrillation which scares me shitless excuse my language I do have a tendency to swear a lot so apologize to those who may find it offensive! My meds end the very same day. I have discussed my situation with Dr Debasis who has advised taking a further 12 weeks which would increase my chances of 95% to 99%, although he has said my results so far have been very good. Everyone who has had any dealings with DR Debasis, will be in total agreement with me I am sure, when I say he is a gem of a doctor and human being and gives such a feeling of warmth and confidence in what he is saying that I am certain to go along with this and will continue for another 12 weeks.I want to express my gratitude to everyone I have spoken to so far be it here, at MonkMed and a GP2U you have all excuded mega warmth and are clearly very knowlegeable and experienced. I still need to discuss a few things with the consultant doing the ablation but am hoping this will not get in my way of carrying on tx another 3 months.

Dr Freeman what is your take on my AST and ALT results please? The AST still slightly out of normal range. Should they not come down lower than they have, given they were never that high to start with? The VL test is a Quantative test rather than Qualitative. Have asked my GP who tells me this is the test the hospital does and should be very accurate. She has been able to ask for a PCR test for my partner would this be a better test to ask for at week 12. Would it be more accurate? Guess I am feeling a little unsure about my results so far and feel very good but at the same time there is much uncertainty for me how I should be reading all these results. Could you give me your opinion along with the one i have had from Dr Debasis whose opinion I totally trust and value it's just it would be doubly good to hear someone else's. That goes for anyone else too who may read this post. Thank you to all in advance for your help and support .Loads of love to you all
Nadia

Hi nads,

Hopefully Dr Freeman will comment further about your ALT/AST although they can be affected by other things than liver function so your AF and stress of son's health probably play a part.

But regarding your VL testing, I looked up the test you were given: www.hologic.com/products/clinical-diagno...a-hcv-quant-dx-assay

if you read through all the detail you will find the below information about its accuracy levels.

.....it gives accurate quantity readings down to 10iu/mL

.......and detects down to ~4iu/mL

So it appears to be one of the more accurate VL tests. I doubt you will do much better outside of a research lab at this point in time and the Aptima qualitative test is only accurate down to 5.3iu/mL which is very slightly less (but so close it could go either way at those levels).


www.hologic.com/products/clinical-diagno...na-qualitative-assay

Hi Gaj,
thank you so much for your helpful words and info. I did look up the test I had but had trouble understanding its accuracy you have so helped clarify this for me. I did wonder if stress and other health factors might affect certain results. Think maybe I need to take some time out to read a little more
You are amazing Gaj the help you give on here and the ease with which you put things into words that all of us can understand whilst at the same time experiencing all the challenges you are going through yourself. Thank you from me is not enough really. I am so happy to see you are preparing for another attack on this monster. Wishing you everything positive for your next attempt. I hope I am around the day you kick this bastard!!!
Much love and enormous hugs to you
Nadia

Hi Nads, Alot on your plate - Well done you!

Not sure I'm qualified to comment, but I do know Dr Debasis doesn't recommend extra meds without alot of consideration.

As you know, I did the 24 weeks, actually it turned into 26.5 one way or another, and I have had the desired outcome after an initial slow response.

Drs D and F are the ones to offer the best advise, without doubt. Hopefully Dr F will see this post and come back to you soon .

Sending BIG to you, I hope you have some practical support going on there with all that's going on?

LG xo

ThanKS LG you are always so supportive so very much appreciated. My OH is a real help but I worry he is doing too much doesn't know how to relax always on the move and then takes everything upon himself. Its lovely he wants to but I worry about his health!!!

J does have a couple of wonderful PA's who take some of the pressure off but you know what mothers can be like thinking only they can do the job properly unable to let go and allow others to take over! Some lessons hard to learn!!!!

Totally agree about the advice given by Dr Debasis so looks like I will follow in your footsteps and stay on tx a little longer. Happy to if the end result is to kick the wee fuckers out!!! haha!

Thanks LG and so thrilled about your news,WHAHOOOOOOOO!!!!! Makes all the crap you have been through worthwhile right?!
much much love and hope for the future.
Nadia

to you too Nads, to you too

Dear Nads
I'm feeling emotional reading your heavy extra load of worries and I thank you for writing so candidly. Letting it out to be shared is really strong and there are a few single mums here to feel that extra pressure with you xxx Also I remember feeling extremely anxious around week 10 and you're about at that stage of tx. Extra surgery also is always scary yes, I have a fear of GA myself and turn to a wet mess unless I'm treated like a two year old prior to any surgery; so I think you have lots of empathy from quite a lot of people here so many have had to have procedures too you will be supported here, and the serious nature of your issues will never be diminished here, people really do get it. It's exhausting just wading through the paperwork for a household, let alone having to compile path reports, your sons health files, do the interface job of having a child with special needs between specialists, GP, educational systems, transport and all the extras attached to same.
I will be thinking of you today and hope you get some time out for yourself xxx
Sending hugs and a high five for being so strong Nads that's pretty awesome what you've achieved so far keep going girl xxx
Love from Ariel

I'm no expert by any means, unless I am reading this completely wrong your liver function are in the normal ranges.
Usually, when you have elevated results you'll see a difference while on treatment, if the starting point is great in the
first place I don't know they can get any lower.

I guess, you may be worrying about nothing in the case I am wildly wrong( Not the first time) am sure James will
pop to explain it properly.

I would be happy with your ALT and AST. The reason we need a normal range is that normal people vary. Some are normally in the middle, some at the upper end, some at the lower end. The drop from pretreatment levels is the significant thing.

GT1b is the easiest GT to cure. This is in your favour. Low fibrosis and low viral load are both good but past treatment failure means your predicted SVR is 94% with 12 weeks and 99% at 24 weeks. This is from Gilead's trials and in the real world this is a little optimistic ie treatment naive GT1 patients got 97% in the trials (about 300 patients) but the VA in the US found it to be 91.3% (in 4200+ veterans)

So good odds with 12 weeks, 5% (ish) better with 24 but at double the price. I would be happy with you doing 12, 16, 20 or 24 weeks. The extra bit from 12->16 has more value than the 20->24 block.

Well, once we are free of HCV, our ALT, AST numbers are (sort of) completely up to us.

We can live like monks, or debauch like Romans. Completely our choice.......

The point is - we're free!

Thanks Dr. James! Yee Haw!

Hey Fitz you sound really good like you are having a right great time. Briliiant!
Yee Haw indeedy!!!!!!!
love Nadia

Not quite assured of being cured yet, but ever hopeful, Nadia

One thing is quite certain, and that is without FixHepC, I would still be hopeless, and helpless, cast adrift and dying. Literally - dying.

We don't quite appreciate how sick we are until we get here, breathe a sight of relief, and compare notes. Perhaps that is a good thing.

We are blessed to find our way here.

Fitz I am so delighted you made it here in time. It is bloody horrendous that anyone finds themselves in such dire straights but from the super negative has emerged something beautiful and positive, a new life a rebirth is what I see many of us going through! we are so lucky Fitz and life would have been the poorer without you. Take care of yourself
much love and a huge hug (I am into hugs i know not everyone is just don't get it anyway hope you are haha)
Nadia xxx
…

Hi all you lovely people its been a few weeks now since i popped in after asking for some advice which was as always right there thank you so much you really helped. Have decided to take a further 6-8 weeks tx just to be real sure of doing the best I can,

I was about to go and have quite an invasive procedure for Atrial Fibrillation called an Ablation. Just a week before, I started to wonder why I was putting myself though it whilst still taking meds. Thought it was crazy to put myself through all the stress and end up not doing justice to the hep C meds or to the procedure! So put the Ablation on hold till mid January. Feel much more relaxed about it all now was getting too wound up about it all.

Feel great emotionally, better than I have for years, what a high!!!!!!! Just one little wish my bloody stupid heart would behave and stop acting up!!!! Don't like talking about myself so much when I know everyone has been through their own crap and some still going through it. so will stop there!

I am trying to catch up with all the news and hope that everyone, those who have just arrived and those who have been here for some time are doing good. You too Doc. You are all amazing thank you for making this world a better place.
Nadia xxx

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