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Maggie's Treatment Diary

I have been chosen, by the flip of a coin or something similar, to be in Group C, 12 weeks of drugs, 4 drugs in a combination of

ABT-450 100mg 2 tablets in the morning.
Ritonavir 100mg 1 capsule in the morning, and yes it is a capsule so big I must look like a snake that has swallowed a cow or a water melon for those veggies amongst you!
ABT-267 25mg 1 tablet in the morning
Ribavirin 1000mg 2 tablets in the morning and 3 in the evening

This drug combination must be taken at precisely the same time every day as past trials show irregular dosing does not have the same effect as timed dosing. Live yoghurt is recommended to take on any combination of hep c treatment as it lines the tummy and allows slow absorption of medication and lessens the side effects.

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Update 26th June
11 July 2013
My very sincere apologies for the late update, for anyone who has read my diary from the start will know that my partner also has Hep C and has been having his own battle, he did not respond to 72 weeks of pegylated interferon and now we have a cancer battle and he has to have a liver transplant so my focus has been with him for the past 4 months or so.
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6 month follow up!
26 November 2012
I had my 6 month follow up appointment on 06.11.12 and I remain ‘Undetected’. I can’t begin to tell you how happy I am, still reserved a little as I won’t have the final blood test until 23rd April 2013, but I have allowed myself to to get excited but I mustn't be complacent, I know this horrible virus can hide. I am realising though as the days roll by that ‘Hep C’ isn’t on my mind 24/7, even after this short time of being rid of the virus it is beginning to take a back seat which is a lovely feeling. My next diary entry will be in the Spring.
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I remain ‘Hep C Not Detected’
22 August 2012
Diary Update Tuesday 21 August 2012
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Post Treatment Update
21 August 2012
Diary Update 19/08/2012
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Not Detected!
17 May 2012
Diary Update Monday 2nd April 2012. Trial Day 35.
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Week 4
2 April 2012
Tuesday 27th March 2012. Day 29 of Trials.

Results from Tuesday 20th. Trail Day 22. Viral Load <25.

Yes, very disappointed that it was still detectable. Yes my suspicious mind was working overtime re: Placebo in my last entry. The headaches have gone, I get a bit ‘ratty’ about tea time. I have noticed that I bruise easily and they go black/blue my skin is suffering not itching but I just look a bit run down, sort of ‘winter skin’. My haemoglobin levels have dropped with would explain the breathlessness and general fatigue but nothing I can’t live with and I know its only for a few months, I have had a sore throat and a bit of a dry mouth with a slight bitter taste still I never have needed an excuse to have ‘another cup of tea’.

They gave me a new batch of meds yesterday, they changed them two weeks ago so it will be interesting to see if any of the side effects rear their ugly heads again, no it won’t be in my mind as I never read contraindications on meds bottles of any kind I just take them and let my body decide if it likes it or not!

My appointments are now every 2 weeks, I will update my results as I get them but my next diary entry will be on or around 10th April. Till then I wish everyone well and keep positive thoughts and enjoy the sunshine. Nick, Sophie and Elizabeth, I wish you well on your trials and enjoy reading your diary’s, good luck.
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Week 3
22 March 2012
Tuesday 20th March 2012. Day 22 of Trials.

Since my last visit to Kings my side effects have subsided in to a ‘hint’ of a headache, still mid to late afternoon and early evening, no more nausea or vacant feelings, no stomach or liver pains but I still get tired. I began to wonder if, when they took the drugs away to take the readings from the mems caps on my last visit they had swapped them with a placebo, one of the tablets is a crude shape with no ‘easy swallow’ coating or writing on it, I guess that is the one that isn’t licensed yet. I talked myself out of thinking like that as I checked before I started the trials that no placebos would be used, I still had to ask today though, just to be sure. The answer was a definite ‘No’ phew. My consultant was right, all of those side effects last week was the medication kicking the virus out.

So really the last week has just been playing the waiting game, my emotions have been very strange, my feelings about the possibility of not having Hep C anymore are quite bizarre, like ‘Oh what do I do now then?’, what do I do without Hep C?. You may think that sounds really weird, I was not expecting it either, you would think I’d be dancing on the ceiling but I’m quite calm, maybe I am still in shock that it is all happening so quickly or happening at all, or perhaps its another side effect I didn’t know about, who knows? Let’s hope I hurry up and turn those thoughts into positive thoughts and start getting excited about life again. Yep, there’s a big wide world out there that’s been missing me for the last 4 years or so, let’s get back out there!

Viral Load Results from Tuesday 13th. Trial Day 15. <25 (which means its less than 25 but more than 1, under 25 they cannot count the exact number).

The results are AMAZING from 3110000 to under 25 in 15 days!. They think it should be zero from my blood tests today, as before, as soon as I know, you’ll know....

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Week 2
15 March 2012
Friday 9th March 2012. Day 11 of Drug Trials.

The initial excitement of being on the trials had worn off and the side effects had started to show, i felt weird all day, a bit vacant a little bit sick and a bit of a headache but more of a stinging pain rather than a thumping headache and pressure behind the eyes and loss of appetite. I had real trouble trying to take the tablets in the morning I just couldn’t swallow the without reaching. I did manage to get them down. I have been checking my emails every few hours to see if my blood tests had come back from my visit to kings on Tue 6th but nothing yet.

Sat/Sun & Monday 10th/11th & 12th March 2012. Days 12/13 & 14 of Drug Trials.

I seem to have got over the pill taking problem and have felt ok in the mornings it seems to be mid to late afternoon the nausea and head pain start, but that could be down to my eating habits.
Note to self....remember to eat lunch!! After my evening tablets I haven’t noticed any headache.

On Sunday I got up had breakfast and tablets sat down with a coffee to watch the news and the familiar tiredness swept over me, I hadn’t felt that since I started the trials I guess the adrenalin and excitement had kept it at bay, I put my head down and no matter how hard you try to pull yourself out of it you just can’t wake up, I don’t fight it anymore I just go with it so Sunday was a sleeping day.

Monday I had stomach and liver pains I hadn’t experienced those before I felt vacant again and since my last hospital visit I had slowly felt myself sliding downhill emotionally that's when my diet suffers when you can’t be bothered to cook or just to tired to do anything.

Tuesday 13th March 2012. Day 15 of Drug Trials.

Hospital day today, just the boost I needed. I told the consultant of the side effects and the liver pains and she said from past experience the pains were the Hep C virus ‘physically’ being pushed out of the liver, wow I’ll put up with that then!

Viral Load Results from Tuesday 6th Trial day 8. 105

My diary does not come across as very personal when I read it back, it scares me a bit to go to deep into it as Hep C has had such a profound effect on my life and I am quite an emotional person its not that I don’t want to tell you more its just that if I start I’m not sure I’ll know when to stop. Next hospital visit Tue 20th I’ll keep you all posted if I hear anything before then. I still haven’t had to take any pain killers and I have not actually been sick so I will again say how lucky I am to be chosen to be a part of these trials and compared with what my partner has been through, this is going to be a walk in the park.
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Week 1
8 March 2012
February 28th 2012 Day 1.

I had to fast for at least 6 hours so they could take blood and urine samples before the first dosing. I took the first dose of tablets and they gave me a coffee I only have decaff at home
this had caffeine so I was a bit wobbly and hyper on top of my fasting, anticipation and excitement so was not sure which way was up or if it was a side effect. On day one you have to have further blood tests at 2 and 4 hour intervals to see what effect the medication has. These are the results:

Viral Load at 0 HR 3110000

at 2 HR 1880000

at 4 HR 165000

After eating and driving home I just felt emotionally numb I had taken all this strong medication and felt no side effects amazing, day 2 I felt great still no side effects oh just ever so slightly dry eyes but in my mind that’s not a side effect that’s just a small inconvenience.

March 1st 2012 Day 3.

Back to Kings for more routine checks, blood, eyes, heart rate, blood pressure etc. I still felt great I had felt a slight headache but as soon as it was there it was gone I had no need for pain killers, they tell me that the side effects may start to show in week 2, I’ll keep you posted.

Viral Load on Day 3 546

YES 546, OMG how excited am I and how lucky to have been chosen, I know you shouldn’t count your chickens and all that but the power of positive thinking has done wonders for my outlook on life and I haven’t felt so fatigued my adrenaline has kept all those nasty bits away and long may it stay.

March 6th 2012 Week 1

Off to Kings for routine checks. Waiting for blood test results to be emailed, still no side effects. As soon as I know you’ll know.....
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