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Author Topic: My situation  (Read 6125 times)

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Offline Carola2

  • Member
  • Posts: 4
My situation
« on: April 03, 2016, 05:27:36 pm »
Hi all!

I am 32 and I think I am in a quite special situation facing hep c and I don't know what I should do now...

Everything started 1 year and a half ago when I did the test after having a relationship with a person infected with HVC. I know it is unlikely being transmited in that way but yeah....I was positive (Nov 2014). I went to the specialist and in the next test my viral load was >25 ( Feb 2015) so he sais I was suppose to be clearing the virus. After 4 months ( Jun 2014) I did the test again and I was negative. Doctors said I finally could clear the virus by my own ... Of course I celebrated it enjoying last Christmas as never before!!  Apparently the reason why they left my case opened is because my transaminases were slighty high and they had to find what was the reason of it.  I did a checkup on January and the results were a big shock for me: HVC positive again (with very low levels, vl 4000) and additionally I am also celiac!!!!

Now doctors think I should start the old treatment interferon+rivavirin asap as the chance of success is very high being in the acute stage but, on the other hand, I know it has very strong side effects and there are those new treatments I'm the market. My concern now is whether I should wait of not for the new treatment, or else, I've read it is even possible to bring or from India or China. I don't have much information about this..

I'd really love to hear from all of you and sincerely share your opinions about my situation. I am a bit scared.... They want to star the treatment propably next Friday! Awaiting for the results of the endoscopy to confirm my coeliac disease to finally start treatment   :'(

A hug for everyone!! 


Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: My situation
« Reply #1 on: April 03, 2016, 08:41:23 pm »
Carola, welcome to the forums. Although I am not a doctor or a nurse, I searched the internet and found this article from the National Institutes of Health, which is a highly reputable source in the U.S.A.:
http://www.ncbi.nlm.nih.gov/pubmed/15492610
Excerpts relevant to your situation:
"Hepatitis C is associated with autoimmunity, which can be exacerbated [made worse] by interferon treatment. Cases of celiac disease activation during interferon treatment have been reported." . . . "Eighty-six percent of patients with anti-transglutaminase antibodies showed activation of celiac disease while on interferon. Symptoms ranged from mild to severe, and interferon had to be discontinued in 2 of 7 (29%) patients. Symptoms disappeared in 6 of 7 patients after interferon withdrawal" [which means symptoms did NOT disappear in 1 of 7].

The above study was published in 2004, long before the much better treatments of today became available. In 2004, it was decided that I should NOT be treated with interferon-ribavirin because I had an autoimmune disease (lupus nephritis). At that time, treatment recommendations in one of the top U.S. Medical journals recommended against interferon for people with an autoimmune disease, even though it meant waiting for a better treatment.

Did your doctors say why they are recommending the old treatment instead of one of the new ones? You deserve to know their reasoning.

Other people on these forums know about getting generics from a country such as India or China. I hope one of those people will answer that part of your question.

A hug for you.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline KimInTheForest

  • Member
  • Posts: 1,952
  • Believe in yourself
Re: My situation
« Reply #2 on: April 03, 2016, 10:07:51 pm »
Hi Carola, and welcome to the forums! :) I can see no reason why anyone should be starting treatment with interferon+ribavirin now that new, better, safer, more effective, less toxic (or non-toxic) treatments are available. I would insist on being treated with the new DAAs (direct-acting antivirals), not interferon. I would buy it overseas if I had to. (Here is one way to do that: http://fixhepc.com/home/redemption-etrials.html.) But I would first make every effort to get insurance to cover me at home for one of the new treatments. I would only buy overseas if I could not find any way to get covered for the treatment where I live.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Carola2

  • Member
  • Posts: 4
Re: My situation
« Reply #3 on: April 04, 2016, 09:51:35 am »
Many thanks Gnatty, Kim for your answers! I really appreciate it...

Gnatty, the doctor who has suggested the old treatment is the same who has found the coeliac disease.. in that way I assume it is something she has already in mind... I hope so! I have also hypothyroidism and what she said is that during the treatment this disease may arise but as long as I am already taking medication to regulate my thyrods it should be fine. The same with the coeliac disease... If I am already diagnosed and hence in case I decide to start interferon I'll avoid gluten completely so I hope it should be ok as well. Thanks a lot! I'll investigate further about autoimmune diseases with interferon.

The reason why they want to give me the old treatment is because I am in the acute stage, with very low levels. The old treatment is now available for free and they think i can clear it in few weeks. On the other hand, if I wait longer the virus will spread and will become chronic during the period I'd probably have to wait for the new medication, which might be years - or at least that's what they said as lot of people are nowadays facing health problems and hence before me in the queue... -. It is being a very complex decision to make  :-[.

Kim, that link you sent me is very inspiring! Hopefully some people in the forum can share their experiences having decided to go for this option. I feel a bit lost now...

I was wondering that propably I can go to some private specialist who can give his opinion. Do you know any good one in London area?

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: My situation
« Reply #4 on: April 04, 2016, 05:34:22 pm »
Hi Carola, I can provide some comment on Kim's link as I received my medications from the same place. I finish week 20 of a 24 week Tx today (you will likely only need 12 weeks) and you can see some of my stats in my signature. I became undetected for the virus at somewhere between the 4th and 12th week of Tx and while not cured yet, I am feeling very confident of that occurring and can honestly say I haven't felt this well in 10-15 years.
The FixHepC group's Redemption trials are worldwide trials supplying licensed generic forms of the medications at a far more affordable price. As an Australian I can't really help with advice about your particular situation but the linked site also has a forum where you can read a number of active UK posters who often blog about their experiences dealing with and getting the support of the NHS system to receive treatment/monitoring with these modern DAAs.
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Carola2

  • Member
  • Posts: 4
Re: My situation
« Reply #5 on: April 09, 2016, 04:18:47 am »
Many thanks for your comments Jag!
I've been talking with some hep c Org and they have told that there are few cases where people have got fake drugs so... I presume fixhepc is not the case but you know.... I'd need to be very carefully regarding this doing the proper research. On the other hand, I asked one of the nurses in the hepatology dep and apparently by policy they stop monitoring people who bring "Unknown drugs" from abroad.... In that case I feel I don't have much options now a part from int+rev :'( I've also asked how could cost a private specialist to do this monitoring while I take imported treatment and the amount was absolutely unaffordable!!

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: My situation
« Reply #6 on: April 09, 2016, 01:54:00 pm »
Hi Carola,

I understand your concerns. You need to be confident that the source of and quality of your medication is beyond reproach. I shared the same concerns when I started down this path and did considerable research before I proceeded.

What I found was that FixHepC is a reputable group who rather than selling drugs themselves, coordinate the supply of affordable, tested and proven generic HCV medications from trusted suppliers. They have had considerable favourable media exposure in Australia, New Zealand and also the UK on BBC Newsnight. https://m.youtube.com/watch?v=lgjJNTx3vvY&ebc=ANyPxKr34ndfRbJNIM6A9IGSPCFjBjW8EUcMAxDN1N-D4R1lfg3X-x0WrE1apB6IT9qk1HgdmgG16lZKVuFSaTPBwQJb3Gjz5A

Something that may help to add further to your confidence is that their founder Dr James Freeman will be presenting the initial results of the Redemption clinical trials at the EASL 2016 conference in Barcelona next Sat 16th April. http://ilc-congress.eu (16:30pm in the Latebreaker session for those interested)

As far as the (less that complete) information provided by your hepatology nurse goes, all I can do is restate that the Redemption trials are using fully licensed generics from brands that are well known and supply many of the other various generics drugs that UK hospitals and GPs commonly prescribe. And also restate that there are a number of UK patients on these trials using these drugs who are being openly monitored by the NHS. Some of these patients post on the FixHepC forum and would be able to provide specific advice to other UK residents like yourself.

But please do your own research and make sure you are comfortable with whatever decision you make.
« Last Edit: April 09, 2016, 02:05:47 pm by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Carola2

  • Member
  • Posts: 4
Re: My situation
« Reply #7 on: April 13, 2016, 05:45:27 pm »
Hi Gaj,

Thank you so much for this information! I am in the process of digesting it and of course very existed about hearing this reputable and affordable option exists and it is available.

 I've had a quick chat by phone with my doctor today and the same...she has told me the same that the nurse: imported drugs involves to stop monitoring my case. I have an appointment with her and she has told me she will give as much information as she can to support my decision. That's good but not enough as I need a doctor for my monitoring... I'd like to know to hear from these people who have received monitoring from uk. I am with the approach now! :) :)


Offline Mugwump

  • Member
  • Posts: 761
  • My number of posts means nothing, piscor ergo sum!
Re: My situation
« Reply #8 on: April 15, 2016, 12:56:10 am »
From what you first posted I would make certain which genotype before proceeding any further. 


I am surprised that the doctor that you saw did not inform you better as to how the sequence of information goes when determining which treatment to use.


Interferon treatment will be gone from the books very soon IMO. Until you are certain of the genotype it is impossible to determine the best course of action. Viral load means very little when it comes down to how the disease is progressing. It can vary from week to week depending on how well your immune system is coping with the infection at the time.


Over the years as you get older and your immune system naturally decreases in function the viral load can increase on a median level as mine did over the twenty plus years post diagnosis.


I am shocked that the doctor even suggested interferon treatments.


 
All the best in getting the best treatment possible and ridding yourself of this disease.
Eric
« Last Edit: April 15, 2016, 01:03:54 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline HazelAustralia

  • Member
  • Posts: 178
Re: My situation
« Reply #9 on: April 15, 2016, 08:19:19 am »
Hi Carola2,

Do you need to go to a private specialist? Can you use a clinic such as one of these Operational Delivery Networks? See more at: http://www.hcvaction.org.uk/resource/hepatitis-c-odns-and-clinical-leads#sthash.wU9quL8S.dpuf?
http://www.hcvaction.org.uk/resource/hepatitis-c-odns-and-clinical-leads
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: My situation
« Reply #10 on: April 15, 2016, 09:55:43 am »
If using the NHS system rather than private then from what I've heard from people over there the NHS isn't consistent in support across the country. Some GPs, some Consultants (specialists) and some ODNs (clinics) are supportive and will monitor self funded patients while others are not and will only support strict guidelines which apparently often still means interferon.  >:(

So it helps to know someone who has found supportive staff which is why I suggested Carola ask for advice on http://fixhepc.com/forum/new-to-forum.html explaining she is from the UK as there are quite a few patients from the UK who are being monitored currently who could share first hand advice of how to find out who to see in different areas of the country.

Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

 


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