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TOPIC: Treatment journal a Hep 1b story

Treatment journal a Hep 1b story 3 years 9 months ago #8712

Hello all

Super to hear the stories of your amazing journeys and results. An absolutely huge thank you to those involved in getting all this up and running. We, as a collective, cannot thank you enough. You should be sainted, knighted, awarded medals and much more! (:

My story is the following:

I live in Australia. I contracted 1b in around 1981 and it began to rear its ugly head in 1992 right in the middle of stressful first year Law exams. I have had two very serious episodes with it in the intervening years (in 1992 and 2007). Since 2007 my health has been deteriorating to the point that I cannot work full-time, or study.

I began treatment on 12/1/16. This is day 8 for me. I have kept a daily diary for the past 8 days. Here it is for your input and feedback. Unfortunately I do not seem to be doing as well on treatment as some of you but it is early days yet.

Day 1: Very excited. Here we go. My life awaits. Didn't sleep well. Woke up tired but happy. No nausea at all. Mild headache. Otherwise all the usual symptoms eg foggy, dizzy, tired etc. Nothing to complain about.

Day 2: Not too bad at all. Tired, foggy, mild headache but better energy levels than I have had in a while.

Day 3: Very tired today and dizzy when I stand up. Very foggy also. Headache as well but mainly just tired. Happy though. I am going to win this war! Yippppppeeeeee!

Day 4: Not too bad. Tired, foggy, weak, headache. Sleeping a lot every day at the mo. There is no way I could work or study like this. I can't even be bothered looking at my emails or making dinner.

Day 5: Tired, foggy, weak, dizzy, mild headache. not sleeping well but in bed a lot. Not so great today but still happy.

Day 6: Tired, foggy, weak, dizzy, off with the pixies, headache, can't drive, sleeping a lot. restless sleep though but still happy and feeling very positive. So what to a few symptoms. You cant win a war without a few casualties. This is nothing considering the outcome.

Day 7: Very weak, very foggy, very tired, lethargic, feel heavy, can't drive as too off with the little pixies. Restless night again. All else fabulous though. Feeling upbeat and pleased I have awesome friends to help me out. Worst day so far re symptoms. Virus must be reallllllly unhappy with me. He, he!!!!

Day 8: Very tired, very foggy, quite weak, lethargic, heavy, feel like crying at times and at other times I feel very elated as I know I will win this. Probably worst day so far re symptoms. Not sleeping very well but in bed quite a lot which is not like me at all. Still happy though.

Well, that is my journey so far. I would just love to hear your feedback please.

All the very best to you all. Especially those fighting battles.
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Treatment journal a Hep 1b story 3 years 9 months ago #8720

  • Gaj
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Hi Tiana,

Welcome and congratulations on making the decision to take control of your health by commencing treatment. :)

Sorry to hear that the start of your Tx has been dampened by side effects. This virus and its Tx seem to effect us all differently with many not being aware we have it for decades and others like yourself having episodes thoughout. The same seems to be the case with the sides too, although not necessarily the same people. Most do find that the initial few weeks of Tx are the worst though and that is understandable with our bodies being host to a lot of slaughtered viruses that need to be cleaned out during that period. But for most, our livers start to return to normal functioning in a matter of weeks and the differences become very noticeable. Most find drinking lots of water helps.
I also have no doubts that the first few weeks, at least, are a very emotional time for most with long periods of greater hope than we have felt for a long time but also little moments of doubt too. But rest assured, the meds do work and once you get some initial blood tests all the doubts seem to fade away. :cheer:

If you can give us some idea of your genotype and fibrosis levels and prior treatments if any that will help people answer any questions you have, and please ask away if there is anything you want to know. Many of us put our details in our signatures and should you wish to do that, you will find it in one of the tabs near where you added your avatar. You need to scroll right down to find the sig panel.

Anyway, we look forward to hearing of your journey as it progresses. :+1:
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:
Last Edit: 3 years 9 months ago by Gaj.
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Treatment journal a Hep 1b story 3 years 9 months ago #8874

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Hi Tiania,
I am also Geno1b and are now in my 10th week with only 12 days to go. I have had the same side effects from the start but found the 2 -3 weeks worse. I can tell you that drinking plenty of water(up to 2litre a day) helps a lot particually with the headacre's as every time I had one start I would dring water and it improved greatly. You can find plenty of others that have found the same result from drinking water.
I still have periods of weakness at times and a very foggy Brain but it is not as bad as it was at the start.
A common comment I see from others is NO SIDES accept from headacre and brainfogg so what they must mean is acceptable Side effects. T
Goodluck with the rest of your TX and I hope you will find water helps. :+1:
Genotype1b probably since 1978.
On prior TX. Started TX 11nov15
Sofosburvir + Daclatasvir FixHepC
VL Undetected 4weeks thanks to
Dr Freeman and FixHepC
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Treatment journal a Hep 1b story 3 years 9 months ago #8876

  • LondonGirl
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Hi Tiania, Thank-you for your post.
Enthusiastically agree with PKHow - Drink plenty of good quality water.
Hoping you are feeling better soon and wishing you the very best result.
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
Last Edit: 3 years 9 months ago by LondonGirl. Reason: typo
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Treatment journal a Hep 1b story 3 years 9 months ago #9028

Thank you so much. I will try and drink lots of water. Good tip from you all. Day 10/11 today and at my lowest ebb yet but still so happy to be fighting this war. Many thanks again. Its just fab to know others are in the same boat.
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Treatment journal a Hep 1b story 3 years 9 months ago #9029

Thank you. Off to drink water. 2 litres per day!!!! (: Ekkkk!
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Treatment journal a Hep 1b story 3 years 9 months ago #9030

A very big thank you for your reply. Greatly appreciated. T
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Treatment journal a Hep 1b story 3 years 9 months ago #9037

Hi Tiana

I also have genotype 1b. I only have two weeks left of treatment Sof/Led (12 week treatment). I have suffered from insomnia all the way through but energy levels just keep getting better every day. It's so nice to to feel like I want to fall asleep at work :) A few headaches but nothing a Neurofen didn't cure, and yes, lots of water is the key. Sounds like you have had a bit of a rough trot to start with but I'm sure it will only get better and better as you go along.

Keep on keeping on. :)

Cheers
Lynne
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
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Treatment journal a Hep 1b story 3 years 9 months ago #9043

  • Wayne
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Hi 1b also 24 weeks Sof, Dac, and Riba Meds from Kingswood Pharmacy from information gained from Greg and the FixHepC Forum .
First Bloods at 8 weeks undetected. :+1:
Genotype 1b 42 years.
2007 48 Weeks Interferon + Ribavirin Relapsed.
2015 6 Weeks same as above + Sempivir Too many sides stopped.
7/11/15 started Sof / Dac + Riba 24 Weeks. Kingswood Pharmacy.
VL Before tx 3 million.
1st bloods 8 weeks undetected
.
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Treatment journal a Hep 1b story 3 years 9 months ago #9138

  • Chejai
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Hi Tiana, welcome and congrats on startingTx. I'm,Geno 3a, Sof/Dac for 16 weeks, Day 11 today. You sound like you've started out a bit rough with the sides but we are all individuals and will react differently but certainly relate to others' journeys. I'm use to drinking water constantly 2+ litres p/d including through the night. If you don't usually drink much water then it could be why you're feeling so dizzy (?). I started out with intense sweats my 1st week, making me very dehydrated, that's eased thankfully. Some of us have experienced 'hyper' energy followed by extreme tiredness, I certainly relate to the 'emotional' roller coaster, joyful one minute and teary the next :lol:

Everyone here is very supportive and plenty of info at hand, don't be afraid to ask questions. Good Luck and look forward to following your journey. :)
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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