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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12772

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Wow, LG sounds like you've been through a lot recently. I've been sick and not on here much so trying to catch up.Feel so relieved for you having the MRI and getting such good results. The stress you were going through felt palpable, I really am happy for you.
Hope you sort the malabsorption/B12 issue out. Don't forget that the high MCV reading can indicate not just low B12 but low Folate - because they need each other.

You said awhile back you have a 'Scientific Naturopath' friend, why don't you get her to prescribe probiotics/prebiotics - because malabsorption involves the stomach and intestines - and a pre-metabolised form of B12 - because
"But many people with deficiencies have defects in digestion, absorption or metabolism, and they need the pre-metabolised form of B12, which is methyl-cobalamin." For e.g. there are sub-lingual forms and even nasal sprays. As DT mentioned the Betaine HCL is a good method to help rectify the low hydrochloric acid levels BUT it is something to be taken under supervision and NOT with corticosteroids, anti-inflammatories or NSAID's.

I take Nexium which unfortunately is to lower stomach acid levels, meaning I'm also probably suffering malabsorption and/or B12 deficiency.
Dr F has run a heap of blood tests so I'll find out in next few days.

Like you, I have been very unwell for several weeks now, I'm in Week 9. Have discussed with Dr James about continuing on for 16 weeks, or longer if necessary, to be close to that 100% chance of killing off the stubborn mutants.

Thinking of you and wishing you well :) #love #love #flower
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12779

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Ho Chejai just jumping on LGs thread cos I asked about your extending on mine and now read the answer
Sounds like you are sorted for a safe outcome xxx
A few people extend
Wishing you all the best and LG too
The two extenders! Xxx
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12784

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Thank-you Chejai for your message, interesting re B12, Dr Debasis recommended a course of Probiotics & digestive enzimes post anti-biotic course, will write more when I get on ither comp. Sorry to hear you've also been unwell, sending warm wishes to you, back later #flower

Hey Zhuk, hope you're swiftly on the mend #flower

Hey, BIG #love to you all from me xxxx
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12832

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Hi again Chejai - Thanks again for your very helpful message.

I am so very sorry to read (in other threads too) the symptoms you have been having to put up with and I do hope they ease for you soon ! It sounds like you have alot on your plate right now re moving etc Phew - Try not to overdo it and go at your own pace I say.

Do you know which week you went UND? I don't blame you for extending if it improves your chances more for clearing. It's a good idea to do this without a break from what I can gather, before those pesky mutants rear their ugly little heads and come back stronger. I am sure you have a very fine chance of SVR now, but we are all different and if it ups the % then go for it.

I am a strange one (!) in that I am going in the right direction but at a snails pace. There are concerns re Low absorption (digestive issues?) / Genetic RAVS and / or I am simply a slow responder! The problem is, how can we know which one? Pretty impossible really as not tested for resistance pre-tx , absorption has always been an issue with me, pre tx too, but we have never got to the bottom of it (pardon any pun!) and so, I find myself extending treatment after much consideration and advise from those who help me. Pretty fed up re length of treatment getting longer, it's not so much that, but add on the 12 weeks EOT and summer will be over and autumn will be approaching, so a much longer ride on the roller-coaster !

This B12 /Absorption thing seems complex, I am considering and reading up on all advise, Yes dt has excellent advise there too and has really researched well.

the high MCV reading can indicate not just low B12 but low Folate"

It is not 'that' high, just a little raised, but what is interesting, is that it never was before and the last two bloods it has been.

It sounds to me, your face , eye, pain etc could be affecting a nerve? Nerve pain is just horrible - Poor you. You know Dan had nerve pain problems and tingling hands and feet and hasn't yet got to the bottom of it.

I am also thinking of you and wishing you well from across the seas Chejai #flower #love #flower
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

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Last edit: by LondonGirl. Reason: lg's spectacular typos as usual

'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12905

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LondonGirl wrote: Hi Ariel, "For whatever reason I am a slow responder".
VL 32 at mid week 9.
Feeling alot better, but have to extend.
All other bloods good.
Got MonkMed Dr Debasis & Dr F on it.


Good news with the impressive MRI! Only mild F1-F2 is reassuring.
You are in good hands and extending the tx is the best choice.
And your viral load is decreasing sloow but constantly !

Wish you all the best and UND soon!
#duck #love #flower
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12912

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Thanks for your kind wishes isaing #love

Actually, I think I'm F1(5.6) - down from F2 in 2014 (8.7) (told you I'm a strange one !)

Feeling better in many ways over the last few days, I'll just 'keep on keeping on'
Thankful I can extend as necessary. :+1:

How are you doing? Hope you're keeping well xx
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12916

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Oops! Yes, you are F1. I am so pleased for that. :)

Thank you LG for asking. I am well and all good till now.
The old game of waiting. Waiting the medication to be affordable, waiting to start tx, waiting the first UND, waiting EOT, waiting SVR...
I try to enjoy life between those expectations!

I wish you all the best and UND soon!
#duck #love #flower
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12918

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Hi LG
Re fibroscan
Since the botched peginf I have had several for various reasons
I'm measured around 5.6 Kpa
That converts to an F0 score
I had one more elevated reading at 6.0 which was F0-1
My median reading is around 5.6 giving a F0
Here are the measure conversion charts
I wouldn't call myself an F1 neither does either of my specialists. Maybe you're F0 at 5.6 because I am called that and am not changing it. My worst reading was at 6.0 as I said but I am back in the 5s and an F0.
I hope I am even better than that after a while postDAAs
My doc said people without hepC have worse liver health just from lifestyle factors
Chrck out this chart anyway you may agree with my F score conversion given by my docs for your own F score, if you mean 5.6 Kpa
Xxx
The reason I have had several is that I was NOT tested prior to peginf so it's been for reasons associated with query over that mad decision made by a certain specialist on my behalf!!!
Love from Ariel

hepatitiscnewdrugresearch.com/fibroscan-...he-scoring-card.html
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12923

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Thank-you ladies, I can feel the #love #flower #flower :+1:
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12925

Good to hear you have a clearer picture now of your liver health, and congrats on keeping it in such good shape!
I too was impressed by my Fibroscan results...4.7kpa and a FIB-4 Score of 1.01.
I am doing twelve weeks, and the GP who prescribed for me (who had done a course on the meds) advised me to not bother with any bloods till 12wks after tx. Reading your story makes me wonder if this is a good idea however, and as I have a several blood requests lying about I could use, I am thinking of doing an 8wk bloods. However if they are not undetected I'm not sure what I'll do, as I have heard people do still clear even if they aren't UND early on. But who knows...you seem to have had a bit of a rough ride with tx and I don't blame you for wanting to extend, rather than have to do it again, which is something none of us want to do.. I guess I will just wait and see how I feel at 8wks.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12948

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I am doing twelve weeks, and the GP who prescribed for me (who had done a course on the meds) advised me to not bother with any bloods till 12wks after tx. Reading your story makes me wonder if this is a good idea however,


Hi F.F. - The jury's out from my own point of view re this, I have read so many conflicting reports. Having said that, I do think later into treatment, VL should definitely be checked. My UK consultant checks at 9 weeks as standard. We are lucky that we can extend without a break if Drs advise it's necessary.

I have heard people do still clear even if they aren't UND early on. But who knows...


Me too, but I am particularly slow for some reason, so for me it's necessary. There may be a chance it's not necessary, but do I want to take that chance? - I have decided not to.

A friend was still detected EOT and then VL rose to 51 post tx, they told him he had failed. 12 weeks post tx he was clear. That was the Abbvie treatment though.

Seems to me there's no re telling with it and little official data as yet, just patient experience , I guess we just have to take professional advise and go forward as best we can. It's still all so new.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Last edit: by LondonGirl.

'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12962

Hello everyone my name is Tom. I live in St. Louis, Missouri.
The more I read the more confusing this all becomes. My hope is there is someone here that can simplify this for me.
If my post is out of place and wrong I apologize. I just found this site and I can't wait to get some answers.

I have been Hep C positive for 29 years (initial diagnosis in 1987 was non A non b). I am genotype 1a.

Stage 2 fibrosis. Not sure on current viral load but past results were high.

Non responder to Interferon and Ribavirin in early 90's. Looking to get hooked up with the success many are having here.

My questions:
Can I enroll in this study (Redemption) being from the US.
Can I obtain these prescriptions without traveling out of the country?
Can I use the online doctors such as GP2U being in the US?

Is this doable??? I don't have insurance but I do have some savings I can use for a doctor and hopefully some affordable medications.

Please help...I really appreciate it.

Thank you, Tom

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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12966

Thanks LG..its all a bit worrisome, especially as I stupidly cancelled my specialist appointment once I had a script (on my GPs advice).
When next I see my GP I will demand 8 wks bloods and try not to overthink it till then. I am stunned at my difficulty with asserting myself with medical professionals generally....I can do it just fine with everyone else.
Hopefully practise will make perfect.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #12970

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Hi Tom (Tlondon),

The answers to your questions are Yes, yes, yes and yes. Send an email to This email address is being protected from spambots. You need JavaScript enabled to view it. expressing your interest and askIng for further information to suit your situation.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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'In which LG seeks Redemption & makes new friends' 6 years 8 months ago #13036

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Hi FFox, My feeling would be to test early week 9. This will give you a good idea of how it's going and enough time to order more meds should you need to extend (unlikely, but hey, nothing wrong with having a plan B )

When you have been at the mercy of NHS England for some years, you gradually learn to assert yourself ! However, when feeling low and unwell or anxious, , we can be forgiven for not being 'on the ball' but anyway, you can't control how the conversation goes as it involves two people ;) but you can be prepared with your questions ready and learn a bit of 'Dr speak' - I have learned they like measured reasoned requests with some Dr lingo and phrases included, I mean, they are using them all day after all?

An earlyi test is good, just to see if you are responding to the meds. Then, whereas most get a <15 at 4 weeks, not everyone does. There is still an excellent chance for SVR even if not UND at 4 weeks into tx, these are powerful medicines, but if not UND at 9 weeks, you have time to consult Drs and decide on your tx options for the foreseeable future.

NHS England may have only offered me 8 weeks which would not have been enough for me, even 12 , so you need a plan B just in case, that's my way of thinking and thankfully easily doable thanks to MonkMed fast tracked FedEx, Dr F & FixHepC so I wouldn't worry yourself too much #love

Link on the subject : mobile.aidsmap.com/HCV-viral-load-levels...therapy/page/2962856
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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