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Going to India 7 years 4 months ago #22612

  • Rikke
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Very new to this forum, but of course wanting to tell our story (so sorry for my bad english since this is not my native language)

We got diagnosed a year ago and in Dk as so many other places, you don't get treatment.
But a few months ago we found out that India was our chance, so we started quite a project with finding a contact we could trust, finding hotel and buying tickets to the plane, getting the right visa and the right vaccines and everything.

So we went to India.....
...we got the right medications and went home after 10 days in Delhi.

Back home now, and with our doctors to monitor us during the treatment.

Been taking the medications for about 6 days now and only being a bit more tired than usual, maybe feeling like having a cold on the way as side effects.

Hoping this will be a succes.
Praying for it!!
Diagnosed august 2015
Genotype 3a
Viruscount 350.000
Fibroscan 5,5

December 2015 virus 190 !! Thought I was going to clear this myself

March 2016 virus 23.000

June 2016 virus 5900 going down
Fibroscan 7,7 and rising

October - going to India to get medication Sofosbuvir and Daclatasvir
October 31. starting the treatment
Virus 69.000

Friday 11. november the first bloodtest after starting the treatment
The following user(s) said Thank You: DrJames, Chapel, LondonGirl, coral, Gaj, beaches, Hieupham, Donna

Going to India 7 years 4 months ago #22614

  • rightsaidfred
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Hello Rikke and welcome to the forum,
I suppose Dk is Denmark and that there are problems importing medication to your country. Well done for being enterprising and going to India for treatment.
What is the position for hepc patients in Denmark? I take it that treatment is not available locally. Do please let us know what the situation is there - people here would be interested.
The very best of luck with your treatment.
RSF

PS You might like to post details of your condition in your profile. It is helpful to other users
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
The following user(s) said Thank You: LondonGirl, Gaj, Donna, Rikke

Going to India 7 years 4 months ago #22615

Good Luck to you, what did the meds cost and which one did they prescribe.

I have completed another Sof/Dac brew for 10 months and had a 12 week booster med from Doc Freeman.

Will get my bloods done end of next week and if it has come back will go again.

I sourced mine in Benglaru/ Bangalore from a Live Liver Surgeon who was young but knew his shit, very helpful.

Best of Luck
First diagnosed Nov 2012 with Hep C 1a End Liver disease
Failed peg and Sof/dac
Given 18 mths to live Aug 2014
Failed sof/dac July 2015
Sep 2015 given till March 2016 to live as nothing they can do
Sourced a supply of sof/dac from India told I was a fool by staff at SCGH
Been in a coma twice 2016 6 stays in Hospital
Last 4 weeks have been unreal back into life again
Hope No One else is treated like Shit by Med Specialists as the Nurse are UNREAL The Good Doc Freeman is genuine Barry Ashton

Barry Ashton
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Going to India 7 years 4 months ago #22618

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Thanks for the nice welcome to this forum. I am still trying to find my ways around here, but can you guide me to where I write details on the condition?
I would be happy to give details and be helpful to others, I am so happy to find the help I needed when I got the diagnosis.

For HepC patient in Denmark you don't get treatment unless you are very sick. Your liver has to be extremely damaged, so you can have this condition in 20-30-40 years before they will treat you.

If we want to buy the meds outside Denmark, you can have it send to England and then go to pick it up, but it is not very secure to do it this way.
But it is legal to go to India (or where ever you can get the meds) and bring back supply for three months for yourself. So we did this, but it was difficult to figure out where to get it, who to trust, finding someone here in Dk who took the same journey we did.
But we succeeded and if I can help other patient with this, I sure would do so.

The meds cost us around 2000 US dollars pr person and we got from Delhi
Diagnosed august 2015
Genotype 3a
Viruscount 350.000
Fibroscan 5,5

December 2015 virus 190 !! Thought I was going to clear this myself

March 2016 virus 23.000

June 2016 virus 5900 going down
Fibroscan 7,7 and rising

October - going to India to get medication Sofosbuvir and Daclatasvir
October 31. starting the treatment
Virus 69.000

Friday 11. november the first bloodtest after starting the treatment
The following user(s) said Thank You: DrJames, LondonGirl, Fara

Going to India 7 years 4 months ago #22621

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Welcome Rikke, :)

Thankyou for adding your story here which will help others to know more about the situation in Denmark.

Here is a link to how you can add details to your signature fixhepc.com/forum/technical-support/977-...to-your-profile.html
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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Going to India 7 years 4 months ago #22624

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You are in the right place,100% for sure. If you have or need anything please just ask and people here will help you. This is the most thorough web site with doctor on board you could ever imagine, I have ordered and completed treatment here and it is incredible.
You may want to start your own blog and document you TX. When your done you can look back and follow your journey.
Good luck and in good health to you.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
The following user(s) said Thank You: DrJames, LondonGirl, Gaj, Rikke

Going to India 7 years 4 months ago #22627

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Hi Rikke,

Welcome and thanks for posting your story as well as an overview of the HepC treatment situation in Denmark. This is the type of information that really can help others. Well done for taking control and working through all of those hurdles.

Intermittent tiredness seems to be one of the side effects for some once treatment starts but you really will feel the difference once the medication starts to work its' magic. :) #flower #flower
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24
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Going to India 7 years 4 months ago #22635

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I tried to follow the link to write in my diagnosis and all the numbers, but for some reason my computer won't accept it.
So maybe later on I can.

But I am so happy to find this place, this site. Feeling like I am part of a community.
I am not hiding the disease for anyone, everybody around me knows this has happened. I think it is important to be open about it if it is possible.
I am aware that it is not possible to be open for everyone, but for me it is, and I am telling poeple what's going on. But they don't really understand what it is like, just as I wouldn't really understand how it is to have fx a heartcondition since I never tried it myself.

I am actually proud of myself for taking control. When I was diagnosed, my world fell apart and I felt like I couldn't do anything about it, but then a wonderful nurse pointed me in the direction to India and the possibilities in bringing home my meds.

In fact, I came in contact with another patient in this process and he asked if I could bring medications home for him too, so I did, and I would do it again if someone came along and asking.
I want to help if I can, and I can totally understand if other people think it is too much to go to India to pick up their meds.

And it is perfectly legal for me to do so

But for now I just feel happy to have found this site
Diagnosed august 2015
Genotype 3a
Viruscount 350.000
Fibroscan 5,5

December 2015 virus 190 !! Thought I was going to clear this myself

March 2016 virus 23.000

June 2016 virus 5900 going down
Fibroscan 7,7 and rising

October - going to India to get medication Sofosbuvir and Daclatasvir
October 31. starting the treatment
Virus 69.000

Friday 11. november the first bloodtest after starting the treatment
The following user(s) said Thank You: DrJames, LondonGirl, coral, Gaj, beaches, Tommy, Fara, Donna

Going to India 7 years 4 months ago #22636

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Hi Rikke, glad you took control and handled everything. Your english is great. I been on Twinvir for 15 days now and have zero side effects. Good luck with everything.
Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
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Going to India 7 years 4 months ago #22649

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Hi Tommy

Crossing my fingers for you too, hope everything work out just fine for you

And thanks for the compliment (not sure this is spelled right) nice to know you understand what I am writing.

Going to the first bloodtest this friday after sterting the treatment, hoping things have gotten better.
My virus isn't that high in the last test so I hope to clear this in the three month treatment
Diagnosed august 2015
Genotype 3a
Viruscount 350.000
Fibroscan 5,5

December 2015 virus 190 !! Thought I was going to clear this myself

March 2016 virus 23.000

June 2016 virus 5900 going down
Fibroscan 7,7 and rising

October - going to India to get medication Sofosbuvir and Daclatasvir
October 31. starting the treatment
Virus 69.000

Friday 11. november the first bloodtest after starting the treatment

Going to India 7 years 4 months ago #22650

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Hope all goes well on Friday Rikke :+1: #flower #flower #flower
Keep us posted xx
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Going to India 7 years 4 months ago #22652

Welcome Rikke!
Glad you found us.
m
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Going to India 7 years 4 months ago #22653

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Thank you all for being concerned for others, this is amazing #flower
Yes Donna, I will post my results when I get them...

Blood on friday, results on wednesday
Diagnosed august 2015
Genotype 3a
Viruscount 350.000
Fibroscan 5,5

December 2015 virus 190 !! Thought I was going to clear this myself

March 2016 virus 23.000

June 2016 virus 5900 going down
Fibroscan 7,7 and rising

October - going to India to get medication Sofosbuvir and Daclatasvir
October 31. starting the treatment
Virus 69.000

Friday 11. november the first bloodtest after starting the treatment
The following user(s) said Thank You: Gaj, Donna

Going to India 7 years 4 months ago #22782

  • Rikke
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Being very extatic and happy now!!!!!
Got my blood taken on tuesday - there was a technical problem at the hospital so I couldn't get it taken friday as planned.

But today I got the result!!
In just 3 weeks I beat this !! My testresult is negativ...

Of course I have to finish the cure, so I'll stay on the meds for three months as planned. My doctot said I had to so I will. But she expected this to be a finished chapter for me

I couldn't be more happy now #love #love #love

There is a positive twist to the story now.
My BF and I was contacted by some other patients, asking if it was possible to get them medications for this.
So we are going to India again in a few days.
Our wish is to help others, not making money on this. We just want to help - the healthcare system in Dk can't do anything, but we can.. and it is perfectly legal.

I will of course keep on with writing
Diagnosed august 2015
Genotype 3a
Viruscount 350.000
Fibroscan 5,5

December 2015 virus 190 !! Thought I was going to clear this myself

March 2016 virus 23.000

June 2016 virus 5900 going down
Fibroscan 7,7 and rising

October - going to India to get medication Sofosbuvir and Daclatasvir
October 31. starting the treatment
Virus 69.000

Friday 11. november the first bloodtest after starting the treatment
The following user(s) said Thank You: DrJames, coral, mgalbrai, Gaj, beaches, Donna

Going to India 7 years 3 months ago #22795

Hi Rikke,

Great so see you taking the efforts to buy medicine for your fellow countrymen.

A commandable job and i see how people are standing up for their countries to help each other hand in hand.



Thanks

Nirav Sangoi

Hi Nirav, I have removed the last part of you post because you are not currently verified by this site and so it is not appropriate for you to offer your services to our members and guests. Should you wish your services and contact information to be included in our Distributors Market area please refer to the following link for information about how to proceed.

Thank you,
Gaj


fixhepc.com/forum/distributor-s-market/9...-rules-warnings.html
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