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Searched for: treatment
08 Oct 2015 20:02
Life, here is some information from the pharma companies. I am not a doctor so have absolutely no idea about other drug interactions. I don't take any other drugs or supplements so there is no issue for me in that regard. I saw a link somewhere on the forum about interactions but have no idea what forum it was on.

1. If I were you I would very, very seriously consider talking with Dr Freeman or some other healthcare professional. These are powerful drugs and the treatment and possible side effect dangers really depends on your individual situation. A few dollars invested in professional support is an excellent investment.

2. I would also do some in depth research, read and educate myself before starting treating so you are aware of the ramifications of treating yourself with this method. I am far from an expert on the subject but have read tons of reports, studies on the trials, applications for approval to the FDA and their European counterpart, etc,. etc., so feel quite comfortable with self-treatment but I have also found a liver specialist that will support me informally as he cannot support me formally because I am using medicine in a combination that is not yet covered by health insurance in Japan.

Getting information on these forums is/can be a good idea but tends to be information from regular people. Though well-meaning and sometimes quite informative, the "advice" on these types of forums cannot/should not replace that which you can get from a professional, unless you have absolutely no way of accessing professional support.. While reading the posts you have probably noticed that basically everyone has some type of professional support.

There are many good websites with lots of detailed information regarding diet, etc, etc.

www.hcvguidelines.org/full-report-view

www.catie.ca/en/hepatitis-c

hepc.liverfoundation.org/treatment/while...naging-side-effects/

Hope this helps. Good luck. Gary
Category: Compounding
08 Oct 2015 20:11
Hi Klhilde

I'm hoping your api's came in the latest batch this week? When it comes to commitment and dedication you win the trophy. If you need to extend and wish to have a look about, we have 4 spare bedrooms in Orange NSW. Maybe not as antiquated as Hobart but spectacular countryside and rivers. So happy for you. Em
Category: Patient Stories
08 Oct 2015 20:13
Clarification now antiquated is positive people meaning old world charm, I love Hobart, the history is so well preserved and the people are amazing. Em
Category: Patient Stories
08 Oct 2015 21:30

gary wrote: Life, you do not need any other ingredients. Just put the medicine in the capsules and take them as is. Here are some links for the paper, capsules, tweezers, etc. I bought my goods from Amazon Japan so the links below are some examples only in English for ease of use. The tweezer link is to amazon japan as I could not find tweezers on amazon USA but you can see the picture to get an idea of the tweezers.

www.amazon.com/Capsule-Connection-Empty-...tical+empty+capsules

You don't need 1000 capsules so search for a box/bag of 100 for each medicine - total 200, though you only need 2 x 84 = 168 for 12 weeks treatment. I bought two different types of capsules, one for for each medicine, just to keep things a bit easier to track.

www.amazon.co.jp/%E6%9D%BE%E5%B1%8B-%E3%...+1%E6%9C%AC%E5%85%A5

The glassine weighing paper may not be necessary but it was cheap and easy to get in Japan so I bought it.

www.apothecaryproducts.com/pharmacy-supp...-weighing-paper.html

This is just a link to a spatula/spoon. You will need to decide which size you want to buy.

www.amazon.com/gp/product/B0061OT1A4?key...2&ref_=sr_1_4&sr=8-4

You probably do not need anything other than the capsules but my wife requested the other goods for ease of use. I also have a very small funnel in case filling the capsules directly from the paper proves difficult. You will need to decide for yourself how you want to proceed with the encapsulating and buy the necessary tools. Best of luck. Regards, Gary


I think I've posted this capsule chart before, but it's worth putting it up again:

capsuleusa.com/chart

And, because our medicine is 'immediate release', don't get the enteric coated (delayed release) ones.
Category: Compounding
08 Oct 2015 21:48

LondonGirl wrote: I believe there are many in the medical profession who believe they need to be 'cruel to be kind' thinking that we may 'learn our lesson' if they are cruel to us. It is shocking. Some maybe think we will not 'endanger' ourselves again if they make our experience as difficult as possible. Some think it's our own fault and we are wasting medical resources. Seems to me, many of us are over 50, this has been my experience since diagnosis, they would prefer to have us labelled junkies out of a 'life-style choice' I think. It keeps public opinion on the side of no funds for treatment. They also seem to overstate the cost of treatments in the press. Well, English Health Authority do anyway. It's handy for them to blame NICE.
Johnboy - The blood test thing is interesting ....sorry you had to experience that.
I believe HepC patients all over, are discriminated against.
My personal experience of the medical profession in England regarding this illness has been, in a word, bad.
LG


It's one of the first questions they always ask. I always tell them it's probably from sharing a toothbrush/razor with my brother, who's been registered as a heroin addict since he was 21, and who had a hepC-related liver transplant last year. Their attitude always noticably improves. But my interactions with the NHS on this have still been mostly sh1t, my GP practice notwithstanding.
Category: DAA Side Effects
09 Oct 2015 07:50
Hi Gary

Yeah, the forum sort of took of so fast that I'm sure the IT's didn't have time to categorise things. Having been in and about many other forums I recognised this early in the piece and set up my own place to talk about my own tx experience 'emilio's place' I notice others are doing this as well. We probably need to arrange things into: introductions, treatment, research, new supplies etc. Some of the really good info is way back in the postings, like the tool I forwarded you. Em
Category: Compounding
09 Oct 2015 10:16
Hi folks,

I bought 12 weeks supply of Sofisbuvir + Ledipasvir from Mesochem about 6 weeks ago. Since I need 24 weeks of treatment, I have to buy a further 12 weeks. When I saw in Greg's blog that Mesochem are no longer selling to individuals, I wrote to them and asked for a price for the next 12 week supply. This is the reply I got:



On 30/09/15 16:46, rachel wrote:
> Dear xxxx,
>
> The price is the same as before.
>
> But can you let me know are you buying it eat directly, in that case we don't sell it.
>
> As usually we only sell our product for lab quality research use, if patient buy it, at least he should have a chemist or doctor who make capusle for him.
>
> Best wishes!
> rachel


That sounds to me like Mesochem's problem is they are worried that people will encapsulate it themselves, get the quantities wrong, then blame Mesochem when it doesn't work.

I find this reassuring. I don't have a lot of money, and I can't afford to get the product tested, but this indicates that Mesochem are actually selling the right stuff, and are still selling it.
Category: Patient Stories
09 Oct 2015 11:08
Jolie, as London Girl wrote, most people on the forum are going through the Buyers Club but some of us do not live in Aus or a country that is open to import of these medicines by people for personal use and/or do not have a prescription so we have gotten our meds from other sources (generally Mesochem in the past but it seems other countries are also possibilities now), and are just accessing the forum to gather information so we can treat ourselves, with or without professional support. Also, in the beginning of this I don't think there was a Buyers Club so everyone was ordering the meds themselves as powder. However, the Aus government and the supplier seem to have gotten somewhat stricter about encapsulating/selling to individuals so the Buyers Club was formed as a way to facilitate treatment. Don't quote me on that but I think that is what has happened. As for myself, I live in Tokyo and it is basically impossible to get a prescription from anyone here to source the meds by oneself so I dealt directly with the Chinese company. In that situation, the Buyers Club/Dr Freeman cannot assist with the testing/encapsulating as there must be a prescription connected with the meds. I am not sure about all of the details regarding who can or can't import to which country so you would need to ask someone else if you are interested. Regards, Gary
Category: Compounding
09 Oct 2015 14:53
My mother in law is living in Beijing China, 78 years old. She was infected with HCV genotype 1b from blood transfusion due to a surgery at hospital in early 80s. Her situation is pretty bad right now, decompensated cirrhosis, CTP-C, also has oesophageal varices which causing internal bleeding in Feb 2015. Is it safe for her to take new DAAs to treat Hcv at this stage? Any successful cases like her? Which combo - SOF/DAC or SOF/LED is best in her situation?
Thanks
Category: Patient Stories
09 Oct 2015 18:14
Hi all,

I'm 2 1/2 weeks into Sof/Dac 12week treatment. So far so good. :)

I'm wondering about times to take the Sof/Dac?
Right now I'm taking both the Sof and Dac together in the morning with a light healthy breakfast.
I saw mention that Dr. Freeman had published a page on this site about foods to avoid when you take your cure.
I can't seem to find it
I have thoroughly read the "Consumer Medication" directions and they don't mention diet.
Category: Q & A
09 Oct 2015 18:42
Hope Chester is ok ?
Category: Patient Stories
09 Oct 2015 19:14
Hello Vicky, this is Life!!! :)

So you take both at the same time in the morning, is that correct?

Thanks for replying!!!

Ohw, I see that you asked the same question...i'm also looking for the foodlist, I'm starting on monday!!

Thanks
Category: Q & A
09 Oct 2015 21:47
Hi Vicki,

The big NO NO with Dac is Grapefruit juice which inhibits the enzyme CYP3A4 which breaks down the Dac. As a result of this inhibition the Dac levels build up, as do the sides.

You may find this page helpful

www.ganfyd.org/index.php?title=Inhibitors_of_CYP3A4

Here's Wikipedia's overview of it en.wikipedia.org/wiki/CYP3A4
Category: Q & A
09 Oct 2015 21:56
24 weeks of Sof/Dac or Sof/Led would help. No Riba.

My impression is that Sof/Led might have a slight side effect edge so may be more gentle. Both are gentle treatments.

The typical treatment experience is feeling better than for years within a week of starting.

It is hard to say how many years of life it might add, but those years may well be better.

It would certainly be worth giving 12 weeks to start and then next 12 if that goes well.

If you need help with sourcing Buyers Club can help and price is less for delivery in China because that is source country. You could probably have delivered on Monday.
Category: Patient Stories
09 Oct 2015 23:38
Thank you Dr Freeman for the advice.

Dr Freeman, do you happen in contact with any Chinese doctor in Beijing are familiar with those new treatments and willing to write prescription for generic and follow up monitoring? Apprantly, same as many other places, we have not found any doctor is willing to do so. One of the doctor she was seeing suggested Sof/Riba combination for 12 weeks which is not recommended to my understanding.

I was think about API when I learned it here and Greg's blog, however, we could not find anyone in Beijing willing to compound. DIY is not possible considering their age and conditions, we are living in Canada and could not help much with that. For the moment, I am trying to source twinvir, if not successful, then we will fail back to APIs.

Thanks again!
Category: Patient Stories
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