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Post Info TOPIC: Epcluser's Corner


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RE: Epcluser's Corner
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__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Razor,

In Canada I spell it "duh", but what the heck anywho eh? I dunno Tex, but it doesn't sound good - I'll have to go google that now.

Hey! Waz happening in the epclusian nation? - Phoenix, Ruby, Ivery, miandre, CandaceV ?? Ironworker, how soon do you get to start?? I hope we hear back from MamaT, who was also waiting to get on. Lessee, I am probably forgetting somebody - the roll call will soon be too long! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Razor, 

LFT's (liver function tests) - a collection/series of blood tests, sometimes referred to as "a liver panel". Would include an ALT and AST, much like what you just posted!!) Sometimes a GGT (another kind of a blood test relating to liver) is also done along the way, sometimes just initially, for reference, ordered along with the other LFT's and would only be of interest if it was elevated or became elevated. AFP another blood test that is often done in the beginning for reference, and would not be significant unless it was or became elevated.

So nice you had a kind radiologist!, and good to see you have had most of the standard labs, and that (other than the old ALT 81/AST 93) the rest of the tests you showed were within normal limits. You said, prior, your CURRENT ALT is 31 and the AST is 35 - so your current ALT/AST are super stellar now being within normal limits!! Very good stuff!. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Doh, LFT = Liver function testno

 



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Hi Canuck,

my current radiologist (bless her) after looking at blood and CAT and speaking with her hepatologist friend came up with Child Pugh A.

I can not get access to any old records , accept my criminal one ( Deck of Cards Tex Ritter)

As i said my current Doctor (even though i pay him) is not interested. I think because i bought my own meds from Bangladesh. His reccomend was or only available treatment here was sofosbuvir-daclatasvir-ribavarin for 24 weeks. I am not doing ribavarin again, i would rather be subjected to Tex Ritter,

I dont know what AFP or LFT are.

See attached for latest bloods.

GGT ?

Thanks



Attachments
__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Hey Razor,

Had to scroll waaay down, in your very first post, you DID indicate "cirrhosis", Child-Turcotte-Pugh (CTP) staging "A". So, somebody has assessed you, at some time. Assumption, F4 ... even without the benefit of a fibroscan kPa measurement.

http://hepatitiscnewdrugresearch.com/staging-cirrhosis.html

See all the considerations and lab tests that are grouped to make this CTP determination. Are you being guided by a doc for your current labs?? I would make sure all these lab items are drawn again, and I would also make sure you have had a "within normal limits" AFP test too. If you ARE the only driver of your lab tests, you ARE ordering a "complete" LFT, and not just ALT and AST, right? smile C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Razor,

You are under a large unwanted amount of stress now, (and have been for quite some time) ever since you first discovered you had HCV, getting yourself to treatment (twice!), the ravages of your first treatment, and especially hard is what you are doing right now, and dealing with it all, and virtually, all by yourslef! You have been doing a really wonderful job considering all you have been through. There are special burdens you have had to persevere through. To go through what you have had to, to get your own treatment, many people will never know how hard that is. Your abilities NEED to be brought to your attention, again and again, to help yourself get through all of this.

You can, and will do this! (you ARE doing it!) And it IS going to turn out fine. Keep on doing the right things, no matter how hard they are. You will get through all this, it will get some easier. I understand that NONE of this easy. You know the direction, you know what needs to be done.

What else would I suggest? ...  you NEED to know what F status you are, maybe re-inquire if any of the recent docs "typified you", recently applied a "F score" to you (by any means) - that could have been done by various tests other than a fibroscan - i.e., someone could have done an "acri-test", "fibro-sure" or "fibro-test", an "apri-score" ... even your old biopsy F score or past F score determinations (of any kind) would be good info for you and your doc(s) to know to help you to compare to how hard your liver has been over time, and how hard it may be today. Consistent, ongoing, repeated, over time testings of your levels of fibrosis or cirrhosis is very good feedback to have. 

If you can find out ANY of your prior fibrosis ratings, that would be good, I am pretty sure some exist for you, old and recent, but it may take some effort to find/inquire for them.

I WOULD go and have a "fibroscan" done, and I would contact ANYONE who has assessed you, current or prior, to find out what F score they put you at when and by what method. Tuck your prior info/records away, for comparative purposes, for when you have repeat (future) F scores done. It was really good you got ultrasound/and CAT scan imaging done. Make sure they follow you - after you are SVR, do have future (repeat) imaging and fibroscans done for comparative purposes.

Do you receive copies of your lab tests? How are other things such as billirubins, GGT? 

Keep going! There is a big prize coming! smile C.

 



-- Edited by Canuck on Friday 30th of September 2016 05:37:23 PM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi RB...well as you know, it`s always best to completely avoid alcohol while on any Hep C treatment, and in fact no-one with Hep C should be drinking alcohol at all, but what`s done is done.  Alcohol does put an added strain on your liver but I don`t think one glass of wine will have had a significant effect on your treatment, just try and make sure you stay off it in future.  I`m sure the anxiety you`re feeling about it today will ensure that it was a one off! 

It`s easy to feel tempted to have a drink when under a lot of stress but it`s much better to try and find other ways of dealing with it when you`re in that situation. 

You`re responding very well indeed to this treatment, as shown by the amazing fall in your liver enzymes, so try not to let the side effects get you down!  Make sure you`re getting enough rest when you need it and keep yourself well hydrated at all times, you can do this!  If you`re stressed and feeling tempted again.. count to ten then come here and talk to someone, we`ll help you through it!  smile

 



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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BTW.

I relapsed last night after a stressful day and had a glass of wine, does anyone know if alcohol affects the efficiency of the drug ?



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Hi Canuck,

I never had a fibrosis scan, could have had one in Spain about 18 months ago to see if i qualified for one of the new DAA's, can not remember which one though.

Last biopsy i had was, wow,mmm, about 15/18 yrs ago and i cant remember result.

I recently had ultrasound and then CAT as i had nodules on my liver, the CAT was to get a better view as to if they are carcinomas or not (they think not).

Why do you suggest PCR VL test after 4 weeks and apart from ALT and AST what else would you suggest?

I looked at your stats and OMG they sure did crash quick, also undetected after 4 weeks, amazing !

I was going to do VR at 6 weeks due to cost, 160 USD here. But suppose i could do it early, would be interesting, my Doctor who i pay for his services, appears not to be interested, even though i will be his first and probably the first in Thailand to get Sofosvel.

Oh well, onwards and upwards, at least i am ok to get back to work, need to earn some commision to pay for this lol.

Ciao



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Hi Razor,

It was too bad you felt those symptoms. I am glad some of them have lessened. It IS nice to have our small collection of people here now on epclusa to compare notes with, but as we can see everyone CAN experience treatment differently, and there are still not a lot of us folk on epclusa yet. Mostly, the feedback on "sides", or what people experience, while on sof/vel has been very good. Most of the new DAA's are leaps and bound better tolerated than the old treatments that many on this site have had to do. An easy ride we say.  We, of the new DAA's are lucky indeed. But, none of it is easy to go through, getting ourselves better, via the old or the new drugs.

I must say .... how I admire your toughness and perseverance in doing all the work to get yourself to this new treatment. Very commendable, especially given the scars you mentioned left from the prior treatment which alone are hard obstacles to muster through. ... "Just some fat guy with a beer belly."? .... "Pull yourself together, you're like a pair of curtains."??!!  tee hee, chorkle, I am glad you also have a case of good humour, good attitude and strength to help you through the hard parts.

"tkflex36" and "webtomass" (earlier trial recipients) who did sof/vel (tkflex36 being treatment naive and webtomass a prior relapser) both had great difficulty discerning ANY "side effect" while on treatment.

Even Pablito and I (Pablo having been a prior relapser, U.K., and I from Canada having been treatment naive) were on the exact same (identical) sof/vel/vox triplet trial, and we both had some dif symptoms from one another. I firmly believe the "added" VOX we had though (or at least in my case) makes it hard to directly compare a sof/vel/vox ride to someone who is on sof/vel alone.

I experienced "some" of what you did, and more, with differences, (sleeplessness was not on my list) BUT (without real proof) I DO highly blame the VOX (I think), AND, generally, I think some of my overall pre-existing health conditions also very much contributed to how I felt on treatment, my health had been spiraling exponentially negatively, for quite some time prior to starting treatment. So I am hard example to use as a comparison. But like i say, it is hard to compare yourself to others, period, as everyone's experience can be dif.

Your hang-over feeling I can well relate to (and of fatigue, fog, headaches) but Pablo had a dif experience, and don't forget, Pablo and I were on VOX additionally. Voxilaprevir (a NS3/4A) is a different kettle of fish to sof (a NS5B) and vel (a NS5A). 

Perhaps less subjective, hard lab data maybe be easier to compare tho. Sof/vel and sof/vel/vox (and a lot of the new DAA combo's) are seeming to generate early crashes in loads and ALT's. When the crashes occur, and their speed thereof, also vary though.

Here are some of my Alt's (all of my labs are found in my bio).

... (Just in case anyone is curious to see all my ALT's and their fluctuations, from my initial diagnosis of HCV July 2015, through treatment start of March 10, 2016, to EOT May 5): Normal ref. range should be 10-65:

86, 89, 75, 78, 87, 83, 65, 86, (after SOT) - 29, 20, 21, 20.

You should be VERY pleased with your crashed ALT and AST at this point. If you are the driver of your own lab car, I would elect for a 4 week PCR and labs.

BTW - what was your prior Fibrosis score status via "fibroscan" (kPa measurent) score??, or via biopsy??, if I may ask, I must have missed that. 

Keep on truckin' man - yer doing good! smile C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi Guys n Gals,

Just a quick update, feeling a lot better, worst symptoms, acid and a bit tired still and some headaches. I wake up some mornings and its like i have a hang over ! 

Checked liver functions again today as i was passing the lab and i am curios. Only 6 days since last check, but have improved slightly

AST : 35 ALT : 31, Both down 2 points from 6 days ago.

Reminder pre treatment 22 days ago AST : 93 ALT : 81

Will do VL in a couple of weeks.

I would be interested to know how anyone elses blood tests have gone on Epclusa.

Happy C slaying !

 



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Ok ill go get flu shot. I started my A/B shots have to go back in January for final shot. Thank you everybody for info

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Ironworker and tig,

Good Q&A re: immunization prior to treatment. Soon after my HCV diagnosis (even at some of the earliest initial family doctor visit levels), it was a clear "given" that I (and my partner) should be as fully protected  from A, B and flu's as is possible. My immunization history and current immunity levels were one of the first things to be assessed. They assessed my partner as well. It happens (or should) as standard protocol as far as I know. He was up to date in flu shots, so that was the only immunization he was NOT required to have. We BOTH went through the 6 months of the A/B immunization series, I was actually given some double-strength doses of B in order to ensure I gained a high enough immunity "titre". I also received my first flu shot ever. I was still started on HCV therapy before all the immunization was completed, and I did not have my final A/B immunity titre results back, to know for sure, if i had reached a high enough level of immunity. The immunization worked (after my 3rd B shot) to get me over the minimum immunity recommended, and it did NOT delay my chance to start HCV treatment.

I unfortunately had B at 17 years of age, quite ill with it, but luckily, I also "spontaneously resolved" it, (I did not become a "chronic" carrier of B), so I required no treatment of my B. Just too bad I had not also spontaneously resolved the C (that I and no one knew I had also contracted at 17!) until we finally stumbled over my C by near accident in 2015! Even people like me can loose (over time) the hard won B immunity they gain by having the infection itself (or, immunity may decrease after long ago immunization) - either way, the thinking is that your B titre should be over 10 for best immunity "memory". smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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


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Hey IW,

Absolutely! There are no contraindications at all. They recommend it. You should ask your doctor about vaccinations for that, Hep A and Hep B. They are recommended too.



__________________

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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I have a house hold full of school age children. With flu season coming up should I get a flu shot before starting treatment oct 1 ?

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Hey miandre,

SO glad to see you here! THRilled you too got sof/vel!!

We will all be glad to get to know one another.

Sheesh!,  just look all of us GT's 3's here, and getting epclusa now!! Hey ... this more than just a "Club", maybe we should consider ourselves ... a gang!

OK, OK ... I can't leave out all the other types, 2's, 4's and ALL, we are ALL epclusian brothers, and now, well-armed to kill, KILL, KIIIIIIL!!, well ... I want to consider myself a gang member she said with a swagger!!!

Glad you found us here miandre.

Two folk here now, heralding from New Jersey! Just great, that scripts are rolling out from there. smile C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi Mike - I am glad you found your way here! There quite a few of us now that have started Epclusa. I am a day away from 2 weeks on and feeling great. Good to hear that you are about to start your 2nd bottle. You can talk about anything here. There are so many people here who know so much and can answer any questions. They are good for a much needed laugh as well! biggrin

I would like to hear more about how your first few months went. Keep us posted.



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Hi Mike

Welcome!  Congrats on acquiring Epclusa, we are a blessed group for sure!  There are a few of us that have started around the same day as you and yes it's wonderful to be able to touch base with others that know exactly what we are going through, have gone through and of course what to expect!  UNDETECTED is what we will post and join Club Zero! smile

 



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 

Tig


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Hi Mike,

Welcome to the forum! It pleases us all to hear your comments and praise. We really have a great bunch of people here and look forward to following your progress. These new protocols are amazingly effective. Makes me wonder what the next wonder drug will be. So much research and development going on now it's hard to keep up. We went decades without much in the way of treatment options. Mostly came in flavors of Interferon, Ribavirin and a nasty NS3/4. I'm not ungrateful, maybe a little envious of you all oral DAA warriors! Success and SVR are the best flavors here and I'm glad you got the chance to try. 

If you have any questions, be sure and ask! If you would like to fill in your signature with some treatment info, there's a link in mine that will help explain it. Glad you're here!



__________________

Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

Signature Line Set Up/Abbreviations   Payment Assistance

 



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Cleaner and clearer.  They are the two words I would use to describe the effects of being HCV free.  The body feels cleaner and the mind clearer.  

It's subtle, at times, and, as Canuck points out, hard to pin down and describe...yet she still manages to find a word or two (hundred) our new-found states.



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Hello Mike, I`m very happy you found us too! 

Welcome to the group, and to this little corner in particular, it`s great to see a growing number of members here on treatment with Epclusa. 

Others will be along to welcome you soon, we`ll be looking forward to getting to know you and following your progress... smile

 

 

 



__________________

Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi everyone,

I'm very happy today for having discovered this corner of the internet, as I had been struggling to find much information relating to Epclusa treatment ever since I was prescribed it in August 2016. Tomorrow morning I will take the last pill of my 2nd bottle, so I am certainly on my way. As far as treatment effects go, I haven't noticed much of a difference other than a bit of fatigue. I just think it's awesome how it is possible to come to this forum and communicate with individuals that are going through the exact same thing I am. Looking forward to posting a bit more here, and from the bottom of my heart I wish only the best for each and every one of you, in that your treatment will be ever successful. Thank you all for being here.

Respectfully
-Mike

__________________
Genotype 3a Started Epclusa August 2016


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No Canuck, 

for once my mind didnt leap to farts and such, I was reading carefully and trying to understand. My post treatment feeling didn't come like that physically or at any discernible point of time. 

But I know I am standing in the middle of a miracle just as Phoenix says. I am still easily tired and racked with pain in my muscles and joints but in my head I'm not that sick me I didn't know was sick any more. Not being religious I don't know what it feels like to be blessed but think it must be like this. Maybe I will get HCC in the next six months, maybe I will walk in front of a bus, but I have lived long enough to be cleared of a chronic illness I have had my entire adult life. I can breath deeply and slowly and get so much joy out of just feeling alive. It doesn't mean that I'm not still pretty fragile emotionally but I have never felt genuine pleasure out of just seeing leaves unfolding in spring or listening to my favourite music, or seeing my 25 year old baby boy in a nice suit. The footsteps of that black dog who has panted and padded so close to me all this time have grown less insistent and further away. 

I hope this happens for you too Razor and maybe the upside of being away from home is that you don't expect people to understand? When you are home and nobody close can empathise with the journey Pablo describes so well, it's hard to accept. This forum has been my life line and I will never forget the people who were so tirelessly there for me. 

Syd

 



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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 Hi Canuck - It is so weird, but at the same time very exciting knowing that these medications are doing their thing! It is hard to explain the feelings though. All I can say is that it feels like a miracle is happening. Things getting better in my body and mind when a few months ago I didn't realize what was wrong. 

It sounds like we all have had that feeling of the virus leaving our body. Canuck - Your story is great. I hope everyone who is or will be going through treatment has a experience like this.  

Would love to hear anyone else's story!



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Hey Phoenix,

I meant to get back to you, on a prior post you made .... "One weird thing though, I walked into a room at work last Friday and everything seemed a lot clearer. Kind of like when you get a new prescription for new glasses. I don't feel like my brain fog is lifting, but who knows".

In different threads, Syd was trying to describe something "hard to describe" ... "Something inside you just shifts. It's a strange feeling isn't it? I have no words for the feeling that the virus has left the body." ..., when she and Loopy Lisa were wondering/surmizing in all probability that Lisa had indeed cleared.
 
Pablito too, did well in trying to describe "hard to describe" things - his interpretation of how his body "felt" prior to treatment, and at a time during treatment, when something (the prior discerned feelings) changed. That "something" that he had tried to define before, had left him/had changed, so to speak.
 
Syd, Pablo and quite a few others HAVE conveyed (sort of) similar things. Perhaps many of these accounts were relating to the feeling that the virus had vacated, and perhaps those on riba, conveying feelings of the riba effects ebbing.
 
I too had a "hard to describe event", I believe it occurred a couple weeks AFTER I had finished my sof/vel/vox. Pablo and I were on the exact same trial drugs, both of us on the 8 week vox triplet, but we each had different physical responses from one another while on therapy. I do believe the vox affected me, quite a bit, and in not the most pleasant ways.
 
So bear with me, I'll try to describe my EOT+2 week event ... one night, sitting on the sofa, minding my own business, I had a brief, gentle, subtle, sudden, internal shudder-like thing happen, more like a bubbling, moving, deep in the core of my body, from torso to head, like something trapped was moving/trickling/and had been released!! Now, where it went, ha!, no idea!! But it sort of felt like something left me! (AND NO, IT WAS NOT A BRAIN FART EITHER!, for you guys who are probably laughing at miss ole nutso!), nor was it bowel, gut, gas, palpitations, not fluids, solids or air traveling, nothing like that - there is no way I can describe to you what it was, or exactly how it felt, it was not really "unpleasant" in anyway, just very noticeable, curious and more than a bit odd and surprizing, mildly disconcerting, as I had absolutely NO framework of reference for it, almost like ... a small bolus of stubborn leftover accumulated toxic vox, like a reverse "rush", was on the move and sputtering/fluttering off into non-existence. Sounds weird eh?, well ... it was a bit! That's all I can think it was. My brain "woke up" some at the same time this happened (in a miniscule way), a tiny "clearing" of my former quite-deep debilitating cognitive fog that had strangely frenetic qualities to it, kinda ... vapourized a bit. At least I think that's what it was, a "collection" of a bit of vox, and it's entrenched/leadening effect on me, seemed to be "leaving the room". My fog started to clear a a wee bit, then, and has been slowly clearing since. For what it's worth, that's the mystery tale I'm stickin to! confuse C.


__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Welcome to the forum Razor.  That's quite the journey you've been on.  

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

Tig


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Hey RB,

I posted that original link using an Apple device and the page still opened this morning correctly to the Beacon Pharmaceutical website. When I saw your message about the Google warning, I clicked the link on my Windows PC and got the same warning. That link has been removed and replaced with a HepMag article. My antivirus didn't explode or my Malwarebytes software, so I think it's a warning because of the IP to the Bangladesh servers. IDK. Thanks for letting me know you had a problem. The differences between Apple, Microsoft and Linux, etc. are getting wider all the time. Security is getting frightening and I don't want to add to the problem!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Sydhanrahan wrote:

Nice to meet you Razor and glad you're feeling better in the last couple of days. Canuck and he fellow travellers all speak very highly of your treatment. So hopefully this will be very different ride from your last one. Glad too to see your blood results looking so good. It must seem like a very lonely journey you're on so far from home. This forum is such a good place to take refuge, learn and be understood. 

Great to have you here. 

Syd


 Cheers Sid, yeah its hard to try to talk to anyone who doesn't have it ! Bit like depression, the stock answer is pull yourself together, your like a pair of curtains !



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Nice to meet you Razor and glad you're feeling better in the last couple of days. Canuck and he fellow travellers all speak very highly of your treatment. So hopefully this will be very different ride from your last one. Glad too to see your blood results looking so good. It must seem like a very lonely journey you're on so far from home. This forum is such a good place to take refuge, learn and be understood. 

Great to have you here. 

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



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Tig, can you tell me what it says pls.



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Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Thanks for all the good wishes.... i should point out the Sofosvel comes from Dhaka, Bangladesh not India. Also, i am not connected with the supplier in anyway, so this is not spam...I was supplied by a facebook company not direct from the manufacturer Beacon. I can get details if any one wants.

I am English, moved to Spain where the health service is second to none, (should be, i was paying 250 euro a month social security as self employed) and had the peg inter ribarvarin yuk stuff all free, overseen by an educated brilliant Doctor. As i mentioned i did not get a SVR ! subsequently moved to Thailand about 4 years ago and sort of forgot about the Hep C. It was only when i put on weight and started to worry that i might have acites that i consulted a Hepatologist here. Private medicine / health care is very expensive here, but can be very good. Forget the SS system here, its a joke, i could tell you some stories about it but i wont bore you all now. Anyway, i took the private route, but my Doc is a young guy, hadn't even heard of Epclusa, so i got some bloods done, VR, Ultra sound which led to a CAT scan,(scary) as the Ultra sound showed multiple hyperechoic nodules (about 8mm) scattered on both lobes of liver,enlarged spleen, portal hypertension, well the CAT scan (they think !) showed the nodules where not hepatocellular carcinomas (phew) and no ascites, just a fat bastard with a beer gut lol.

I needed a prescription for the Epclusa which the Doctor reluctantly gave me, it was actually a medical certificate as its illegal to prescribe drugs here that are not available. It was adequate for the supplier, BUT then it got stuck in customs for a week in Bangkok, even though life saving drugs should be made available to anyone (some WHO byelaw) so i ended up paying a 300 USD bribe to a customs official to  get them out....oh, the 3 month course was about 900 USD with postage and packaging.

But i don't really have a Doc over seeing me, he just said come back a week after you finish the course and we will do a VR test ! So i go to a private lab for my bloods and think i will do a VR test 6 weeks. I might do some more liver function tests before then.

But have to say, feeling much better again today, and even done some work.

Tig56, i tried to open the link Gilead versus Beacon, but got a big red google warning saying Malware, i have had enough of infections for one lifetime and don't want to expose my lap top to one, but i would be interested to see what it says!

Going to try to sleep early today as i want to go to BKK tomorrow morning, so wish me bo-peeps !

Razor.



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Hi Razor,

Glad to see you here. Wish you felt better tho.

Nice! - two of our "firsts" right here!

You, the first we know of to get sof/vel by India generics, and Ruby our first Canadian we know of to get it by prescription in Canada!

You are in good company here. Nice you have Phoenix, and Ruby, both only about a week ahead of you to compare notes with. Welcome to the club!

You can also see threads for others currently on vel - CandaceV, Ivery, (MommaT and Ironworker are waiting to start), all USA.  Past vel "trial" folk are me, Pablito, webtomass, oombant, tkflex36 (Canada, UK, USA).

Yes, I think, as you say "something good" HAS happened for you, as evidenced by that marked drop of your AST/ALT!

I too, "was" a GT3, made UND due to sof/vel/vox.

You got a good treatment this time 'round. When do you get some more viral loads drawn??

Tig is always right in his advice, about drinking about a gal of water per day! and also about not drinking alcohol. I hope you will, very soon, start feeling better. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi RB

Sorry to hear of the sides you're experiencing on Epclusa. The generic Epclusa is news to me as I was told that a generic is not on the market and won't or can't be for some years.  My pharmacist gave me that info.

 I'm also on Epclusa, day 11.  smile  I really can't say I have felt different  than I did pre-treatment except for a few headaches and maybe some nausea in the first few days.  My appetite isn't all that great but I'm continually full on water lol.  I am not treatment naive either and have to say, for me, Epclusa vs Peg ....hands down this is nothing to deal with.

I truly hope you feel better soon but your numbers are looking great.  Drink your water!  You've got this!!

RR



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Welcome Razor Blade! Sorry to hear about the yucky side effects. I have been on Epclusa for 11 days now. Only a slight headache every once in awhile. I have not heard of generic Epclusa. Still learning as I was just diagnosed 2 moths ago. I wish you the best with it! This one will do it for you. I am sure you will feel better soon.

Keep us posted on how you are doing! We are all here for each other.

 

 



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Tig


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I found a couple of websites related to these new generics. There is some sales information on this site. I make no recommendations or endorsements regarding these medications. You should always consult your doctor before starting any treatment regimen. You will need monitoring while on these medications. My recommendation anyway. The information is important, therefore I share...

Generic Release of Epclusa

 

Edited link, previous link corrupted

 



-- Edited by Tig56 on Sunday 25th of September 2016 11:34:28 AM

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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Tig


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Hey RB,

Welcome to the forum. You're the first here that is one generic Epclusa (Sofosvel). Lucky you! We're gonna hammer you for information aka "pick yer brain"!

Sorry you're feeling bad, but the first couple of weeks seem to take the most adjustment. Be sure you are drinking a lot of water, at last 3-4 liters per day, faithfully. Very often increasing water intake, along with a good diet, makes all the difference. May I assume you are no longer drinking alcohol? Not a good idea for anyone with a sick liver.

Your lab numbers look much improved. Are you being followed by a local doctor? Keep us in the loop. 

If you would like to add some info in your signature line, there's a link in my signature that can be helpful. You can see what some of us have done. It really helps to have a brief reference when replying to you or commenting on your posts. Up to you!

Glad you're here. If you have any questions, let us know. You can also find a lot with the search function above.



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

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I am day 18 on Epclusa, well actually Sofosvel, Bangladesh copy, 100 times cheaper, as i am paying for myself ! But have had some ****y side effects. 

Day 1 i was all over the place, dizzy, nauseous, stomach ,head aches etc. Day 2 onwards, only the odd headache, but depression, insomnia (5am now) sleep most days till noon or later, no motivation and terrible fatigue. Only yesterday did i feel a lot better. However still chest pains (which worry me as i had a stent 12 years ago) and discomfort/mild pain in the liver region, although that seems to have subsided the last 3 or 4 days.

I don't really understand fellow sufferers who feel the effects of Hep C, probably because i assume i contracted it 40 years ago at 17 years of age and i don't know any better maybe !

Pre treatment my AST was 93 and ALT 81 and VL 1,600,000, compensated Cirrhosis, Child Pugh A . 2 days ago down to AST 37 and ALT 33, so i guess something good is happening.

I had peg Interferon and Ribavarin 6 mths treatment about 6 years ago and cleared it, but reared its ugly head 3 months after EOT. I must admit i went back on the booze after the treatment, so not sure if that was a factor. Either way i hated that treatment and it has left me mentally scarred and effected me terribly e.g. depression etc.

I am Geno 3, which seems to be 'popular' in the UK and i know its hard to treat, but hoping for better luck this time, although i have read some alarming articles about DAA's and the occurance of hepatocellular carcinomas after treatment. 

Good luck to all on treatment, interesting to see others reactions, results to Epclusa.

p.s. Sofosvel 10 USD per tablet !



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Thanks Pabilito and Canuck.  It's a hard thing to go thru, but it will get better. I do feel like he is with me, and will always be.

Drinking lots of water not only has kept the side effects to almost nothing, but I have lost a little weight in the past week. I feel so full from the water that I don't feel the need to snack all the time!

Thanks for all the support. It means a lot.

 

 

 

 



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The only sides I got were in weeks 1 and 2...none after that.

Sorry about your dad.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.

Tig


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Ha, ha! Skipping, scratching, whatever you call it, it's all good. Just keep it up!

Loving it,      DJ Dragon Stomper

 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Phoenix,

You should be feeling really good about that, few sides to speak of, not feeling anything too bad physically, and just knowing you have the very best treatment there is, and that it will work (IS working!).

I am sorry for your loss tho. I think of my Mom everyday! It is hard when you have much on your plate and on your mind. All WILL get some easier with time. It is a double journey for you, you will need to juggle life and grieve and celebrate at the times you need to, freely, and with abandon. I recently lost a good friend, and that too was hard. But I do feel like they are here with me now, and have and will be right along with me through my journey. I carry them, sometimes in my heavy heart and sometimes with just the pleasure of them. My good company certainly couldn't be happier for me!

There's goes tig's scratched record again - "water, water, water"! Tig, if you are going to go on and on, like a broken record, about the importance of this water thing, then the least you could do is perhaps entertain us whilst doing so ... you might consider presenting same in true practiced turnablist DJ form maybe? ...

https://www.youtube.com/watch?v=D_IHOoz3gYQ  

Scratching Using Vinyl Records - YouTube     smile C. 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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


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That's great news, Liz! Epclusa is really sounding like the real deal. Don't forget to keep pounding the water. Very important part of keeping those SFX at bay. You and Ruby are neck and neck, keep charging! smile



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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The first week is done! Feeling great, with hardly any headaches anymore. No sides at all. Very happy about that!



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Thanks everyone for your thoughts and prayers. It is a tough time, but it will get better. Kind of like the diagnoses of hep c and then the cure. It's a shock and scary, then it slowly you begin to feel better with the help of family and friends. 

Feeling pretty good physically. The headaches are not as frequent. No other side effects to report!

Thanks again friends.



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Liz I am sorry to hear this. I know the feeling of losing parents. You and yours are in my prayers.

 

Warm Regards

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Liz,

I'm sorry to hear about your Dad. You have my condolences as well. I will keep you all in my thoughts and prayers.

Glad that the name change stuck! I was hoping it would be an easy fix and it was. Sometimes they can give me fits! I have to agree that it's a nice title and is already a popular thread. I imagine it's going to be well visited due to the effectiveness of this protocol. Good stuff!

Keep the positive reports coming!! 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi Liz,

Oh, I`m so sorry you`ve lost your dad, I really sympathise.  Condolences to you and your family.   Good to hear you`re bearing up well and it sounds like your treatment is going great. 

Wonderful to read all your reports on progress so far, what a nice group of Epclusers we have here!

Have a good day, keep drinking the water...  smile



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Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi Everyone...a great big hello to my fellow Epclusa warriors :)

I've read some of the posts and I must agree the sides on Epclusa are more than manageable.  I'm finding that anything I'm feeling comes in waves and certainly doesn't stay long at all.  Honestly I don't believe I am feeling anything new except for the headaches, I was feeling fatigued pre-treatment and as we all know just feeling yucky some days.  I must say in comparison to prior treatment (peg) this is a cake walk lol  Just knowing that I will join Club Zero very soon is exhilarating!  Whoohoo!  Wednesday I start week 2...it's hard to believe it's been almost a week after all the waiting and gobblely goop ...I'm on my way smile

Phoenix17, my heartfelt condolences, your in my prayers.

There seems to be many of us in the Epclusa Corner, we are a blessed group indeed!

It's another beautiful sunny day here, 26C /79F with the humidex we are looking at temps around 30C. 



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Hi Ivery! Sounds like you are doing great! My only sides are a slight headache that I still get once in a while. It's only been 6 days, so I am sure it will go away. Nothing major though. Have not been feeling tired, although for the last few years I have had quite a bit of fatigue.

One weird thing though, I walked into a room at work last Friday and everything seemed a lot clearer. Kind of like when you get a new prescription for new glasses. I don't feel like my brain fog is lifting, but who knows.

Tig - Thanks for the name change! Sorry I not get back to you sooner, but my dad passed away late Saturday night. Doing OK.

 

Hope all is well for everyone!



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