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Canuck


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RE: Hello
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You post is NOT too long!, but rather ... it's informative and thorough! Thanks for your willingness to share. Good to know these things, we all learn something from another persons experiences, from one another, and if it better helps us to help you in any way, the better all round for everyone! 

An interesting history you have had. Some of the not so fond memories, left over from that Moroccan visit, and of the interferon days, that you did not deserve to experience. To be exceedingly charitable, I can only say they (of the past medical establishment, foreign or homeland) must have been convinced they were trying to do well by you. Man!

- What year was your unsuccessful few months of int/riba?

It will be interesting info to know some of your other labs like ALT/AST/BILI/AFP, or other assessments, when you do get the copies of what you have asked them for.

Great results tho!, your VL being dessimated from 1/2 mil to 19, in such short order, THAT IS the very stellar good nature of the epclusa triple you are on and this is a very telling early response! Epclusa is such a wonderfully effective drug. Us 3's are so lucky it has come to us. Sounds par for the course tho, not unexpected, the response of your platelets your added riba. Good they dropped the riba dosing down from 1000 to 600, once you got to 106. Indeed, they will will keep monitering that. Even of you get no further VL's done until EOT, know you cannot not have a better VL lab picture to count on! You are going to do well. 

- You mentioned you were aware of an undetermined level of "fibrosis", but have you had any liver biopsies in the past, or a recent biposy, to determine levels of fibrosis or cirrhosis?  Have you had a recent "fibroscan" to help determine your current Fscore? What Fscores (F0, F1, F2, F3, F4) have ever been "assigned" to you, past or current?

- Have you had abd. ultrasounds orCAT scans to help determine your past/current liver status?  

- Good to know you are GT3, it would be interesting to know your sub-type,  if you a "3a" or "3b".

The lowering of your hemoglobin, you might possibly be feeling, or perhaps, might feel at some point, but I'm glad otherwise, that you do not seem to be having too many "sides" from the treatment. If it is any consolation, we have had others here with lowered (and lower) hemoglobins due to treatment, and they ALL ended up doing very well in the end.

Yes, we will all be interested to know some more of the labs and tests, when you are able to get them, in the interim, let us know how you are feeling. I am celebrating your really telling good early response. Another "X" GT3, in the making! Yay!  biggrin C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Snowy White


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Hello, Tig, Canuck, Observer, Wendy and any other forum members looking in, thank you so much for the warm welcome, good wishes and advice. I do apologise for replying a little later than planned, I had a family issue, thankfully sorted now.

I am happy to share anything with you nice people, I have found others sharing history and treatments very helpful so if my own can help in any way that is great.

OK, I forgot my medical notes to be precise but I just had cause to speak to my nurse and have arranged to get a new copy. I'll come to the details I have memorised in a moment and I have the results of two blood tests, one I mentioned I would get the results of yesterday and one I have just received from another test yesterday that I'd like to discuss, but just by way of answering Tig I'll briefly explain how I contracted the virus then mention my gen, fibrosis. 

My wife and I had been spending a few months in the Sahara in the winter of '98/'99 when I became quite ill with what we thought was food poisoning, when it hadn't cleared after 5 days we headed to a little clinic near Tiznit in the south. On arrival, my wife who spoke French explained my condition to the nurse and as we had not been in touch for a while she went off to find a telephone to call family. While she was gone I was taken into a room and we played a game of trying to make ourselves understood, the staff using Arabic/French and myself using English and Italian which wasn't great at the time. I lost the game it seems and the forfeit was to have a filthy tube inserted into my nose which wasn't actually possible due to a break as a young boy. The staff were brilliant, they didn't let any barrier or screaming deter them as they repeatedly attempted each nostril in turn and with increasing force.

After 10 minutes of this torture and wondering what on earth they were doing? I figured they must have been trying to collect my stomach contents so I took the tube and motioned to swallow it while trying to show them the nose wasn't going to work. By the time my wife returned she was horrified to see I was heaving into the tube which was attached to a bag to collect the vomit and my face and chest totally covered in blood.   

After they cleaned me up I was attached given glucose and saline by drip and eventually told I had a type of bug and it would be fine in a matter of days. I was kept in for 3 nights and on release, we headed home. My GP was concerned about hygiene at the clinic, he warned against unprotected sex etc and I began having monthly blood tests, by the 3rd month I was told I had contracted Hep C and advised to stop drinking and smoking and generally take good care. Thankfully due to our GP's advice my wife didn't contract the virus though sadly we lost her to cancer 4 years ago.

Right, let's bring things up to date. 

I will pop my full details into my sig as you all have, what I know from memory is I am Gen 3 and some fibrosis but cannot be exact at the moment.

Re' my blood tests at 2 weeks treatment of 1 x Epclusa, 2 x 200mg Ribavirin AM and 3 x 200mg Ribavirin PM, my count before treatment was 500,000, after 2 weeks it dropped to 19 (to be clear, pre-treatment 500,000 and 2 weeks in 000,019)

This surprised but delighted me that Epclusa could be seemingly this effective so quickly though I won't count chickens until some months after treatment finishes. However! The first blood tests showed my haemoglobin, which was 140 pre-treatment, had dropped to 129 at 2 weeks in which meant I had an unscheduled blood test yesterday - my nurse had said they won't do any more bloods to measure the virus until the end of treatment - I had the results of yesterday's test earlier today which showed another drop to 106.  Due to these results, my nurse has dropped my Ribavirin from 400mg AM and 600mg PM to 200mg AM and 400mg PM starting this evening. I have an appointment for next week to have another blood test to check my haemoglobin hasn't dropped again, with luck decreasing the Ribavirin will help stop the rot. We will see!

So this is where I am up to as of today, sorry if it is a little long. As soon as I get another copy of my details I'll add them to answer any other queries. Thanks again to everyone, I look forward to any comments, questions, advice etc and I'll wish you all the very best health, Snowy. 

 



-- Edited by Snowy White on Thursday 6th of April 2017 11:51:40 AM

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wendyo


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Hi SW - good description of the old treatment. Glad you are on your way with the new one and remember to HYDRATE!



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Observer


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Hello Snowy White

Welcome to the forum.

I also appreciate your story telling and sense of humour. I *almost* got pushed into the interferon ribiviron route but the universe interfered *thankfully* so my first attempt at dragon slaying was with the new meds (plus ribiviron because of cirrhosis).

I am HCV free and it is awesome!

Please let us know your blood test results.

                       

A 

 



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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Hi Snowy,

Welcome from me too.

Thank you for sharing your story with us. You wrote it well. Succinct (something i am never good at), informative, using your lightheartedness and humour in belying the hardships. The way you wrote it I can tell how hard the past treatment attempt was for you (mercury and LSD lol). I am sorry for the loss of your partner, and your long journey to get to this good treatment, nice you got the good stuff this time around tho! An additional worry I wish you did not have, the recent COPD thing, I too think I am working on that!

I am so glad to hear you say you have not had "too" much trouble on this regime, save for the hard encounters fixed by a couple "meltdown meetings" (in a ball, self-preservation/reprieve naps) with a soft sofa. So glad the riba has not taken you for an unwanted ride. As Tig highlights, being aware of potential sides (in any regime) helps to see them coming and deal with any that pop up. Sounds like you will not have to "knock on wood", being 4 weeks in is telling in itself (as to the worst you have experienced thus far) promising, that you wll sail through the rest. Heed Tig's skin and sun advice, I hope you ARE drinking TONS of water, and be assurred they will be monitoring your bloods to keep all things in view.

Now I'm not really a gamblin' kinda gal (have been known to cheat, sometimes I get lucky with just plain guessing), but I think Tig is quite right, given the stellar triple you are on ... your next bloods may prove VERY pleasing. Be prepared for good news! I was on an epclusa triple too, not riba but vox (by trial). 8 weeks cured this GT3a!

Like Tig, I too wonder what your GT is. Hm, Morroco ... 2, 3, 4??

So glad you wrote here, hang in there, and please do keep us posted. smile C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


Admin

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Hi Snowy,

Welcome to the forum! Your story, aside from Morroco, sounds familiar. Some sort of exposure to tainted blood in a location that had poor infection control. We have others that tell similar stories. I'd be interested to hear more if you care to share that.

You're on a very effective treatment. If you can tell us more about the specifics of genotype, fibrosis stage, blood work, etc., will help us understand your case more clearly. You mentioned the addition of Ribavirin. Was that due to fibrosis or the history of Interferon treatment? Ribavirin is well known for the side effects it causes, particularly nausea, fatigue, and anemia, among other things. Epclusa doesn't present much of a side effect profile, but we have another new member that is experiencing some issues. 

The thing to remember is to stay compliant, maintain a healthy diet, exercise (stay active) and stay hydrated. These new DAA treatments demand water. You have to assure a daily intake of at least one gallon (3-4L), without fail. Following that simple rule will help greatly. Ribavirin has it's own set of side effects that may take additional steps to ward off. Stay out of the sun and don't scratch if you start itching. An oral antihistamine and lotions will calm much of that. We can offer some tips if you need them.

When you get your blood test results, let us know. You should see a big difference from the pretreatment values. Good luck!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Snowy White


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Hello, everybody,   I don't have my notes to hand to tell you my precise details with me so I'll sort them. In a nutshell: Hep C and COPD sufferer, The COPD is a pretty recent thing but the Hep C I contracted around 20 years ago in a Moroccan clinic. 

I went through a few months of Peg-Interferon & Ribavirin but had to stop due to 15kg weight loss and thinking it was quite normal to want to visit my late wife, seriously! At that time, I had no idea why my GP and nurse were concerned and discussing sectioning me. Luckily, I had a few things to sort out getting my affairs in order before I had planned to throw a seven and during that time, without the meds, I returned to normal.                           Goodness knows how that stuff was ever licenced, I would rather prescribe a huge glass of Mercury and LSD than Interferon, it couldn't do more harm. 

I am now on Epclusa and Ribavirin and will finish week four in 3 days, touch wood things are going well, I had 2 x 30-minute side-effects, or rather that I assume were side effects as I have never experienced this before, feeling fine, both occasions getting ready to pop out and had an overwhelming sick, dizzy feeling that forced me to curl up on my sofa and drop off to sleep but 30 mins later it was like it never happened. I am due to get the results of my first blood tests since treatment began on Wednesday. 

I am sure you'll agree that is quite enough from me for now, Snowy.

 

 



-- Edited by Snowy White on Sunday 2nd of April 2017 07:57:55 AM

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