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Searched for: treatment
01 Oct 2015 08:51
Well, considering that most of the treatments available here in the UK are somewhat akin to cavemen clubbing the virus out of you (interferon/riba), they can talk :P
Category: Patient Stories
01 Oct 2015 10:25

Well, considering that most of the treatments available here in the UK are somewhat akin to cavemen clubbing the virus out of you (interferon/riba), they can talk :P


I can't believe how much they still seem to be prescribing it! And combining it with the new drugs.

Sof with interferon and riba?

Ugh! It's like wearing dirty underwear under an Armani suit.
Category: Patient Stories
01 Oct 2015 18:03
And your old consultant would be wrong Nadia:

hcvsvrpredictor.liverdoc.com/#/

My old consultant also said the same to me. And the average Joe/Joanne Hepper will believe them. If they could find it in themselves to be honest with us, they would tell us that it's the cheapest treatment for G3 using new meds.
Category: Patient Stories
01 Oct 2015 18:03
I live in Queensland. Currently trying to find a doctor here who will prescribe. Thinking about waiting to see what happens with the PBS in November. If PBS won't fund me then, I'll want to go with buyer's club. I need to arrange 3 months long service leave with work very soon, and I'm wondering exactly when to start the leave.

If I have a script by the end of November, will I be able to get the drugs in time to start my leave and treatment at the beginning of January? Or is that leaving it a bit tight? Should I go for mid-January or February?
Category: Patient Stories
01 Oct 2015 18:14
Not sure how accurate this predictor is. The best result for GT3 with cirrosis on Harvoni with riba?
Of course we all know that the NHS budget availability determines the best treatment for us
Category: Patient Stories
01 Oct 2015 19:11

david wrote: i have a friend on an NHS trial in Wales that did 12 weeks sof/dac for gt3,prior non responder and cirrhosis.He relapsed 12 weeks after tx and now has to do 24 weeks sof/dac/riba.unfortunately I think interferon combo with sof/riba is still the best for g3.Not certain about this as things are moving so fast..


Maybe they didn't know back then what they know now (we'd have to find an older EASL report to find out), but the EASL standard for G3 cirrhotics is 24 weeks Sof/Dac/Riba. The treatment using interferon is sub-optimal, and only used because it's cheaper.
Category: Patient Stories
01 Oct 2015 22:07
I think, I'll be starting treatment a few weeks after,Em. We have have similar Geno types and fiber scans will
be very interesting to see the results once treatment starts.

Excited to end this disease.
Category: Patient Stories
01 Oct 2015 23:50
You won't need leave. You will feel better than you have within 7 days of starting treatment, unless you're F4 and need Riba in which case I withdraw that but do say you will feel much better than if you were having PEG, and should still be able to work but won't feel 100%
Category: Patient Stories
02 Oct 2015 04:03
I remember people talking about 'smells' on the old treatments - Possibly the old triple with Boc or Telap or maybe Riba.
Smells and strange tastes. Maybe it's the bodys own reaction to the medicines attacking the virus, your own immune system?
Category: DAA Side Effects
02 Oct 2015 11:17
That is odd as I found the peg interferon and ribavarin a terrible experience
It's not something I want to revisit and so the new treatment side effects make me a little nervous
It almost broke up my marriage I was so difficult to be around - I'm pretty fit and hate being sick

Interesting though - I found my old blood tests as I'm preparing myself for new treatment through Dr freeman and the buyers club
In 2003 my AST was 263 and in 2012 it was 138 (normal is 10-40)
My ALT was 624 in 2003 and 240 in 2012 (normal is 5-40)
My blood count, lymphocytes and neutrophils were all outside of normal in 2003, but normal in 2013
The treatment didn't rid me of the virus, but forced me to focus on my overall health
Prior to 2003 my lifestyle consisted of quite a few things that would hurt my liver compared to 2013

My liver biopsy in 2003 showed significant damage
I am sure it is my improved lifestyle and use of herbs and products like lecithen every day contribute to the better results
but more importantly, would this mean that the side effects from any treatment would not be as debilitating?

I'm going for more bloods next week and so will have a comparison to 3 years ago
Will be interesting to see how it all looks

good luck everyone - to get rid of the virus would be an incredible feeling
I've had hep c for pretty much all of my adult life and I'm 52 in December
i don't know what feeling 'normal' is
I actually feel pretty good, but would i feel really good if i were to be rid of it
Are some of the funny things that i have due to the hep or just me?
I don't know
My previous treatment put me off doctors for 10 years
i feel a real sense of trepidation and excitement - nervicited as my niece says
Category: DAA Side Effects
02 Oct 2015 13:00
Hi everyone,
It's great to read your posts. Just for the record I'm treatment naive with Hep C3. I'm 9 days into the Sof/Dac treatment and yes those pills pong. I take mine during a meal in the morning and so far so good. There is a bit of a sour taste in my mouth occasionally. Also I'm feeling a little manic, but that might just be the excitement of a possible cure. I'm drinking lots of water and herb teas. I've stopped taking any vitamins and am eating really healthy foods. I don't fancy coffee which only happens if I'm sick or when I was pregnant. i will report if anything changes over the nest 10 3/4 weeks. All the Best
Category: DAA Side Effects
03 Oct 2015 08:38
The usual dose of Ribavirin depends on weight

< 75 kg 1000 mg (5 x 200 mg a day)
> 75 kg 1200 mg (6 x 200 mg a day)

The daily dose is split into morning and evening - so 3 tabs twice a day for > 75 kg

You are taking 800 mg which is below the recommended dose, but will still be having a useful impact. We do reduce the Ribavirin dose where side effects are becoming problematic.
Category: Q & A
03 Oct 2015 09:41
How about side effect profiles Ledipasvir vs Daclatasvir? Which one is most likely to have minimum effects so that I can work through the treatment? :whistle:
Category: Q & A
03 Oct 2015 11:19
Most people's experience of treatment is 3 days of 'pre-flu' like illness - not fully well but hard to put your finger on it.

This is followed by feeling better than you have for years with more energy and a clearing of brain fog.

Some patients have headaches, particularly at the start. My first patient had severe headaches the whole time, but has now finished treatment and is VL 0.

Insomnia is also pretty common.

The DAAs are not like interferon - you will almost certainly feel better on treatment than you do now after the first week.
Category: Q & A
03 Oct 2015 11:41
Thanks James. I'm 57 very well and fit and weigh 60kg. My Liver test results this past week were very good surprisingly. I had my bloods a week before I started the Sof/Dac treatment.
The Liver Clinic had a very interesting reaction when I told them I was taking the Generics, but thats another story. They could not, or maybe would not, tell me what dosage of Ribavirin I should be taking. My fibroscan a year ago showed no scarring, though the clinicians suggested I should have a biopsy to make sure. As the only quandary is that my platelettes have been borderline for many years without change. Recent Ultrasound showed I do not have an enlarged spleen.
I stopped taking the Ribovirin that day and am just on Sof/Dac making up my own mind with the results I had at hand. I'm feeling good, a bit manic if anything, maybe it's just Spring fever.
One of the clinicians was very angry and berated me for being so foolish, irrisponsible etc, etc...but her Senior who was flummoxed at the information about the Generics and the Buyers club called the shot and said they would be very interested to keep on monitoring me.
I go back in 3 weeks, four weeks into the Sof/Dac treatment, it will be very interesting to see my results.
I have been corresponding with Greg Jefferys about visiting Hospital Liver Clinics and their sometimes very negative and naive reaction to patients taking matters into their own hands. Which is somewhat understandable. We must remember they are not the enemy, just unawares of a new groundswell. I'd like to start a new topic about Liver Clinics and share our stories and valuable information that could be beneficial for patients and clinicians.
We ants have numbers on our side!
Cheers, Vicki
Category: Q & A
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