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Post Info TOPIC: Hoodies Epclusa journey starts 7/26/18


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Hoodies Epclusa journey starts 7/26/18
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That's GREAT news.SO happy for you.



-- Edited by Tig on Wednesday 19th of September 2018 09:06:53 AM

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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon



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Way to go Hoodie. I never get tired of seeing that word UNDETECTED. Sorry for being harsh 



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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yay

 



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

3 years...post tx... successful dragon slayer 



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Hooooo-ray Hoodie - it's a done deal! Lovely to have that UND isn't it? - the rewards will keep on coming now, you'll see! Rest easier tonight. So happy you got your UND!  biggrin C. 



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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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I knew it was so! I saw that Dragon hauling butt, weeks ago. It was no match for the Hoodie and Epclusa, one-two punch! BOOM!

Congratulations  

BEA06A54-A93E-4AFF-80C9-06E58D2D8878.jpeg



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Tig

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

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, yay hoodie! it sure makes the rest of tx easier to take.



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Hey guess what! I got a call from Kaiser today letting me know that Im 

UNDETECTED!!!

   

 

Edited to add:

Iris yes 2/3 done.  SO VERY GRATEFUL for all the support guidanc and friendship here. Thanks you all so much  

 



-- Edited by Hoodietree on Tuesday 18th of September 2018 11:36:36 PM

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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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Hi Hoodie! you are 2/3 thru? Are you still very tired? I just wanted to say it was right around that time period for me when I started to feel a bit better, course we are different meds but maybe you will be feeling better soon?
Thinking of you.
Iris

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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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I posted this in August of 2016. It is a letter from my liver specialist who has been working on HEPC and others for many years. She used the word "cured" and she was so happy to be saying it these day. What a happy day it was for me.
 
Regarding: Lab tests
6 months post treatment
This letter is document that you have been successfully treated for hepatitis C and have been cured. Congratulations!
   
You no longer have active infection and have no virus in your bloodstream and you cannot transmit infection to others. Of note, anti hepatitis C antibodies will always be positive in your blood stream if they are tested and it may be necessary to document a negative viral load. If any questions or concerns arise with the status of your prior hepatitis C infection, please contact us.
   
Looking forward to seeing you next week
 


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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 

Tig


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There has been a clear hesitation to use the word “cure” when referring to the successful treatment of HCV, for years. That isn’t something we dreamed up, but the medical community. As we all know, when we remain undetected after 12 weeks post treatment, we are considered SVR or as having a sustained viral response. That simply means our own immune system is now capable of sustaining an undetected viral response on its own, without the need for additional treatment.

The rate of relapse can persist, although the rate is less than 1/2 of 1% and some now consider that to be higher than it actually is. That chance kept the medical community from using the word “cure”. They just didn’t know how long we might be able to actually sustain the undetected viral response. The medical community responsible for all of this approximation, has now decided the term “cure”  is more closely accurate than previously believed. Why? Because people achieving SVR aren’t relapsing, even at rates of less than .5%. Even the old SOC’s, that had 20-50% rates of success, have provided sustained, long term undetected viral responses. It often took us two or three times to do it, but once achieved, we are still undetected. 

You will continue to hear people question the use of the word “cured”, but in my humble opinion, it is more accurate than the term “remission” some used to describe SVR. Either way, I believe it’s time to throw out the idea that we are anything but cured. We will always test positive for the Hep C antibody, that’s just the way it is.

SVR is viable and once achieved, consider yourself cured. That’s also the way it is! smile



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Tig

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

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I havent had a drink in 18 years and I dont plan to destroy my sobriety today. I dont think its uncommon to wonder if its possible after Im cured. I didnt know we dont use the word cured. Thanks for the info.

---------------------------------------

cool that you've made it 18yrs, sounds like you made the decision

i learned a lot in AA, like how to live sober.

yep, even i wondered about the drink .hahaha, but knew my liver would be so sad if nothing elsel.

i say cured, for me it means the virus is und and not causing me further damage ...

we got this biggrinbiggrinbiggrin

 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Scruffy wrote:

Others are there because for one reason or another can't drink but wish they could. You can tell right away who's who by there fondness of "war stories".

If Hoddie said that four years ago here (hugs Hoodie) she would have been pounced on. We care. While i'm on my rant we never used to use the word CURED here. I'll leave it to Tig to shine some light on that. After Tig chimes in you'll see why drinking post treat is still a no no.


 1. We try to avoid judgement in my AA community. Yes its hard and people will judge but if you have a desire to be sober and youre struggling weve found that love and service is a good approach. Judgement doesnt really help because it ignores many realities of the disease of alcoholism. One being that its common to have thoughts about drinking and keeping them inside is harmful. Being honest about it helps me and it helps others. 

2. Im glad there is no pouncing on people here. But you can feel free to respecfully explain why we dont use the word cure and why even after treatment drinking is a no no. It would help me and anyone else who is not aware of those nuances. 

3. Thanks and love

4. I appreciate the feedback. I havent had a drink in 18 years and I dont plan to destroy my sobriety today. I dont think its uncommon to wonder if its possible after Im cured. I didnt know that we dont use the word cured. Thanks for the info.

5. Dont worry, 5-1 got it right: being open and honest about my thoughts helps me stay on the right track. Keeping secrets is poison. Im going to be fine and Im going to be sober. Because I WANT to stay sober and I have the tools to accomplish that by the grace of God



-- Edited by Hoodietree on Tuesday 18th of September 2018 10:47:02 AM

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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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Perhaps I was a bit harsh.But it's because I care that I said what I did.I've watched countless people make a split second decision and lose everything.I always ask myself if I had said somthing,would it have changed.Is there something I could have done.One in particular haunts me to this day.I just wanted Hoodie to know that when things look darkest,she can count on me.

(BIG HUG)



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon



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Your right Canuck

The gloves came off. Sorry about knocking AA but I've been through a few programs not AA but have friends that have. Problem is you have some that get there support because they

don't want to drink and its good. Others are there because for one reason or another can't drink but wish they could. You can tell right away who's who by there fondness of "war stories".

If Hoddie said that four years ago here (hugs Hoodie) she would have been pounced on. We care. While i'm on my rant we never used to use the word CURED here. I'll leave it to Tig to

shine some light on that. After Tig chimes in you'll see why drinking post treat is still a no no.

 Had to edit this . Not just AA but most programs



-- Edited by Scruffy on Tuesday 18th of September 2018 08:41:56 AM

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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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i am def all about being open and honest about what i'm thinking and feeling so i can see what my mind is up to .hahahahahaha

that's the only way i can tell it something different



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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heehee Scruffy!! (I love your posts! - every single one of them dear! wink) Fat people! ... outside of McDonald's!! Oh my goodness me - the gloves are off eh? Knocking AA! uh,oh ... oh dear.  And ya couldn't leave oldtimers out of it either eh, well hey I'm old, but I too can make an oldtimer cringe - won't ya still like me later too Scruffy, please! heehee My Mom, my Dad, my Brother, Sister and Brother-in-law and a few other significant others, all had drinking issues, all with varying forms of really well-practised alcoholism and throw in a few other layers of serious addictions on their pile.  I myself tried real hard with alcohol (I gave it a real good go to become an alcoholic) but being that i had some failure issues early in life I did not succeed on that front for some reason confuse, i just never got there, I never got to battle that addiction, but regardless I was quite familiar with many forms of addiction.  

(So weird tonight, me on a dif thread, and you and Shemp here, all quoting AA prayers!)

Ya, me too Hoodie - I have to admit I noticed item #9 too, your use of words "in the foreseeable future" ... that was the bit that got me ... but ... I wasn't gunna say anything (really, honest, I wasn't going to) I was just gunna kinda skip over it as I know you will never be able to go there again anyway - I was tempted to speak about my recent quitting smoking and about how I dare not, cannot, ever, ever, never, go there again, I cannot risk that doom, but i did not say anything (earlier) as smoking is not a very good comparable/analogy ... but ... now that the boys have ganged up on you for your own good it seems, I'm throwing my pack of cigs into the pile.

Oh you poor dear, you must be wondering what they heck is it with all these people, jeeze all I said was ...

Hoodie take us with a grain of salt (not straight up). heehee 

How I love all the openness and sharing, revelations/wisdoms that get shown around here - never could you learn more about people/life, your own life, than right here on this channel!  biggrin 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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First of all, Hoodie, you have nothing to worry about. Geno 3, as you know, can offer up some additional concerns for some that go decades undiagnosed. That can amount to faster fibrosis staging, steatosis (fatty liver), and used to involve longer courses of care. If Shemp had dual genotypes, including geno 3, that could’ve changed the approaches to his treatment. You?re fine and I know from following your progress, things are going ?swimmingly?! These are awesome treatments and they have improved light years, certainly when compared to the Drano I took for 7 months.

Trust ol Tig, you’re golden! wink



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Tig

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

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Hoodie,

There's that strong person I've been reading about.We're not in this world to see through one another,but to see one another through.Stay strong.



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62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon

Tig


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Hi Hoodie,

The family is doing well and they were blessed with the return of power already. She lives on the same power grid as a local hospital, so they were restored first. There are thousands without power and imminent flooding across the state. The wind was bad, but nothing compared to the rain and storm surge. It’s a mess. It’s the price we pay for living on the eastern seaboard. Knowing that doesn’t make it easier, but it helps us prepare as best as one can for a disaster of this scale. Shoot, I’m still repairing damage from Hurricane Irma, last September. I’m waiting on tile to replace my damaged roof, A YEAR LATER! At least I’m not leaking. I don’t care where people live, natural disaster can strike. Sometimes we’re lucky to have some warning, sadly, sometimes we don’t. The one thing I know though, is it’s times like these when we all come together and our differences go away. It’s the way it should always be... 



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Tig

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

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Dear friends,

Thank you so much for listening and hearing me! Im really grateful for the love and support we give each other here. Tig, how are you holding up under that dang hurricane?! Hope all is well, Im praying for you and your family (hugs). 

Canuck youre too kind! I used to be beautiful but Im old now and settling into that new phase of life. Its not bad, but it can be hard to let go of what I used to have. On the plus side now I have experience and hard earned knowledge so that is a gift I will treasure. 

5, scruffy, shemp and those of us in recovery: thanks for the feedback and sorry for making you cringe. Talking about my crazy thoughts openly and honestly helps, so thanks for listeyand then setting me straight. I appreciate it more than you know! Im gonna be ok, that much I know. and you guys are too!! were all in this together and we are here to help and guide each other through lifes ups and downs. Its really beautiful

peace out will post results as soon as I get em!



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

Tig


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Hey Hoodster,

You’re doing great and slaying a formidable beast! You describe quite a complex journey and it has worked for you, keep it up. Whatever it takes to walk the high road, is what you should concentrate on. Sometimes that path is the most difficult, but most rewarding as well. You’re a strong person, with clear goals, follow them and do it without letting the confusing thoughts get in your way. Look how far you’ve come already! Don’t look back, don’t question the goals you’ve set for yourself and the obstacles you’ve cleared already. Obstacles can be painful, don’t return to the hurt they caused you along the way...  We know you will prevail.



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Tig

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

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Hoodie,I know I'm new here but that statement made me cringe as well.Learning to drink like a normal person is whats known in the program as stinkin thinkin.Do you not begin every meeting asking God to grant you the serenity to accept the things you cannot change.The courage to change the things you can.And the wisdom to know the difference?Are you really going through all of this so one day you can bomb your liver with drinks?I havn't picked up a drink in 32 years.Probobly why I'm still on this side of the grass.But I know the wolf is at the door.He always will be.Sometime he knocks,sometimes he don't.When he does,I go out the window.Stay strong.you are I can tell.



__________________

62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon



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Hoodie

 I stop drinking about two years before I knew for sure I had hep c probably why I'm still here. Once I stopped I still went out on my bike with friends to the bars and drank soda.

I noticed how much people changed after just one drink. At the time I lived close to a bar it was the first stop and the last they closed at 5 am. There idea of closing was locking the door

so no new people could come in and all that wanted to leave could do so before they "closed". An alcoholics dream. I haven't had a drink in maybe 20 years and drugs 30 years don't miss it a bit. Theres a big world out there 

that doesn't revolve around drugs or drinks once you discover it. I was never an AA member but what ever works ( no offence on AA but to me its like fat people standing out side Mcdonalds smelling the food)

So the new hep c drugs do have a side effect  "some day maybe I could learn to drink like a normal person" is a side effect of having no side effects. Sorry Hoodie but that statement made some of us old timers cringe.

 

But we still love ya. Find yourself.

Scruffy



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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hoodie you are doing so good

knowing what is going on is such a good relief

and soon knowing your VL will also bring more relief

i'm so glad you are getting the sleep you need as your body is def working hard with your job and the healing going on.

hepC drove me into recovery too , so it saved my life in a way

rock on hoodiebiggrinbiggrin

 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Oh Hoodie, 

Juuuuuuuust about 66.6% done, or in other words ... nearly 2/3's of the way home! Almost 2 out of 3 bottles down ... or just shy of 8/12ths? ...

Anyway you look at it, or say it, you are the epitome of positive progress! I like your found wisdoms, epiphanies and reflections. 

I'm glad you got the missing 4 week VL labwork done now and figured out as to what happened there. So, that will make this VL about an 8 week VL instead of a 4 week one - I bet the results either way were and will be very good news.  

I am betting my bottom dollar that one day you will be pleasantly surprised to start feeling this fatigue recede/improve, we do not know when and by how much, but i am SURE you will have this as one of your improvements post-cure. What on earth will you do with all that extra time!! Until then, I consider your sleep, beauty sleep (gorgeous person). Already being beautiful, you will not be needing those extra winks in future anyway (post-cure). winksmile 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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With 51 days of treatment completed and 33 to go I have the following observations:

1. On the weekends when Im recovering from the work week I end up sleeping in more, and Im not doing my usual routine of drinking about a quart of water upon awakening at 7. That sets me back in terms of my energy for the day. 

2. Turns out I probably do need more than 10 or 11 hours of sleep per day to recover from the stress of commuting and working 8-10 hours a day. So I set my bedtime for 7:30 PM which is the time that I take my pill. And I sleep until around 7 or so in the morning.

4. Sometimes I awake naturally before the alarm around 6-6:30 and thats when I meditate and have quiet time still in bed until the alarm goes off at 7.

5. If I stay up past my bedtime of 730 like I did Friday night when I met my friends  at the movies to go see White Boy Rick, I pay for it for the next couple days. Luckily its the weekend and I have time to recover before its back to the old grind on Monday. 

6. I have a theory about why my periods are so hard both on treatment and for decades that I had Hep C. Estrogen has to be processed in the liver. So depending on hormonal elevations and so forth the liver may need to process more or less estrogen. It might also struggle with that, and that struggle may also contribute to stress intolerance, fatigue, and emotion regulation.

7. Im grateful for this knowledge, and the self awareness that brought me into mindfulness-based stress reduction about 7-8 years ago.

8. Im also grateful for my AA program and the 11th step which suggests to us that we improve our conscious contact with a God of our understanding through prayer and meditation. Ironically it was the Hep C diagnosis that brought me into the program but I stayed for the fellowship and the good advice, and also because Im an alcoholic/drug addict who needs to practice a program in order to live a happy and useful life. So this is what they mean by grateful alcoholic

9. If I ever start thinking that it would be a good idea to start drinking again when Im cured from this disease, please everyone feel free to talk me down off that ledge! Who knows though life is long, and change is possible. I wonder if I could someday learn how to drink like a normal person? Right now I think its too risky so that means a sober life for hoodie for the foreseeable future

And heres a couple updates:

1. I picked up my 3rd and final bottle of Epclusa on Friday (yay).

2. I also got my blood work done, and while I was there I made some inquiries regarding the viral load debacle from the last prescription pick up/blood draw. You may recall that the receptionist did not order the viral load test. Well I found out that the viral load test was ordered on 8/22 but I was cleared to pick up my prescription and get the 4-week blood draw on 8/17. Well 8/17 was only three weeks! And I remember specifically asking the Hep C pharmacist about it. Anyways, turns out it was not the fault of the lab receptionist, and Im glad I did not file a complaint against her. Mystery solved! No harm done. I might go ahead and provide this feedback to the hep C pharmacist, however.

 

 



-- Edited by Hoodietree on Sunday 16th of September 2018 08:15:59 PM

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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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Hiya hoodie

Tig made me chuckle a bit. The new drugs seem to work in the background with little or no side effects. With the old treatments we had no doubt (one foot in the grave) they were doing something.

New treatments ROCK sides have little or nothing to do with the out come now.

 



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Awwww THANKS YOU GUYS. Your support and encouragement truly mean the world to me. 

Love

Hoodie



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Oh Hoodie.  

Even your doubts and anxiety are side affects.  I'm so sorry you are having to suffer them.  It's a state of mind, not a state of science.  Blood tests will confirm how you are doing.  You are pretty close to EOT, aren't you?

I sympathize.  I was so overwhelmed with fatigue, I could hardly crawl up the stairs.  And I was really grumpy.  I could not have done what you are doing - going to work and all.  There were times I just laid there, desperate for the time to pass, and worrying that I was permanently going to feel that way.  

I hope you can give yourself some credit for doing this at all, let alone while working.  I don't know what you will feel like at EOT, but with time, your body will continue to heal, not only from HepC, but from the cure.  You're eating bullets for breakfast!  

But you know what, one day you will find your old self.  I was surprised to find how much stronger I had become.  Now I know I can face what feels like defeat, BUT ISN'T.  Your not getting beat, you're actually getting stronger.  Ironic, yes.

Grit your teeth, don't believe everything you think, and especially what you are guessing. This is not the best time.

For today, accept our strong arms and cyber hugs.  Reach out anytime. My heart goes out to you.

Cheddy

 



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UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

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Tig


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Actually, we used to consider side effects as a representation of the drugs working properly. As we witnessed our body fall apart, the aches, pains, brain fog and plummeting white counts, we knew the beasties were being blasted. Sometimes these drugs exhibit no side effects at all and people have the same concern, are they working? The proof is in the results and that's one reason I like to see periodic blood tests to confirm something is happening. It's mentally liberating, not always necessary as we have mentioned before, but they give you a bit of a morale boost to see some action. For now, I encourage you to trust in the rates of success and the people that have come before you. This stuff works!



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

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Hoodie, you said ..."Hey (bad thought) You dont think theres any correlation between the 10% of people who dont get cured and the severity of their side effects do you?" ...

Well, if ya were ta ask me, I'd say ... a BIG, HUGE, NO! would be the answer. BUT, there does seem to be a VERY strong co-relation between negative thoughts that we see in MANY smart people who are in midst of being cured - it's one of the kinda strangest (but not the hardest to take) side of all! hee hee.

We always have to default to the "everyone is dif rule", it seems that rule is so, so true (I think), from whether we have any sides at all, to what particular might get, to how much of it we get. 

But you should also know ... that the "everyone is dif rule" is actually ALSO dif for everyone, take ME for example! - I am dif but I am also waaaay more dif than you, in fact I am probably waaaay more dif than many people. heehee

I see your math might be as bad as mine (now that is a serious side) - and, you got that upside-down glass thing going on too! That "is the glass is half full or half empty"? thing. You got 10% of people failing?? It might have been more correct to say that 90% of people are getting cured - but regardless, your math is still wrong. Percent-wise (across the board) epclusers are boasting about 98%. So back to your theory that maybe it's 2% or people who are not feeling great who are not getting cured? Answer is still no. 

Oh dear I forgot about the chicken and the egg rule (which came first, the fatigue or the treatment), oh and darn, that math exponents rule ... when you take med X's yuck to the 6th power.

Hang in there hoodie, I think you got things pretty well figured out, you're a smart cookie and quite strong, maybe even stronger than you think, we all waver during these times, you have some options, you have cards you can play, you are figuring it out and will roll with everything to a good end. How ever you decide to handle things, you are doing great and will do great. The yuck will get better in future. smile C.

Image result for glass of water upside down

   



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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.

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No, I dont think side effects would be indicative of treament failure.  I had terrible terrible side effects from hives to worse than normal insomnia to unbearable peripheral neuropathy pain to worse than normal fatigue to riba rage, (I cant even remember all my sides they morphed week to week) and I am cured and crashing fatigue rarely happens to me anymore.  It took me a while to normalize because after treatment I had a tumour, had to get it blasted with microwave (ablation) yadda yadda an extra year slipped by...but now any of my hep related damages and symptoms are so much more manageable and I no longer feel like I am actively dying.  

Youre getting there Hoodie.stay strong



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no hoodie, my hubs had the worst side effects and he is cleared, und. at 7months after tx. and as has been in most cases, that's as good as cured.

 

i only did 8wks on the harvoni and i know i would have taken a medical leave or fmla if i had 4 more weeks added to that.



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Thank you Canuck and 5 for your support and encouragement. 

Will keep you all in the loop on when/if I get my energy back. 

Hey (bad thought) You dont think theres any correlation between the 10% of people who dont get cured and the severity of their side effects do you?

 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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oh my , the monthly

but at least you know the reason behind the extra tiredness and ickyness.

i have been needing a lot of rest for a few years now and am hoping that being cured will cure that as the months roll out . now i have weeks of more energy then weeks of more rest. but it's good to be cured

hang in there hoodie, this is the trip of a lifetime



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Hoodie, 

You remind me of me (except that I am old, not young, nor beautiful or talented or  smart like you!!!!) but ... we seem alike in the battling of fatigue dept. - the amount of sleep i required when I had HCV was absolutely mind-boggling (beyond belief!) in the last years as i approached treatment and never was it more ingrained, pronounced/profound as when i arrived to treatment, I just "did it", (the fatigue) before, and, during treatment with quiet amazement (very quiet - pun wink) that a body and mind could "do", have to do (or require) THAT much down time. I could wake from a sleep wondering how could I possibly still be so tired and roll over and sleep some more!

I couldn't rightly believe it, except for the fact that I was living it! The naps, so overtaking and so irresistably overwhelming, I couldn't possibly have imagined how i could have worked (at least through the treatment period), it was getting increasingly very difficult to operate the last few years especially prior to treatment with such a heavy sleep requirement.

The good news is that (mind you it took me a very good long time after cure) the fatigue did start to lighten, and I am back to waaaay more normal ratios of sleep/wake time now. None of this overwhelming/overtaking crashing naps anymore, well, very rarely anyway, a nap nowadays, if it occurs, is a merely a more "normal" nap affair. The profound fatigue stopped, it WAS due to my health, my illness and treatment, and after cure as i mended, things improved dramatically in the fatigue dept and in many other ways.

I am betting everything that your fatigue will change/improve too in future - that you may well find you will not have as high of a sleep demand in future after your cure. Wait for it, it will come. smile C.



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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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Oh duh. Im due for my period in a few days. 

Epclusa seems to take every existing condition (fatigue, PMS) and just ratchets it up to 11. My fervent hope is that I can outrun it and get to a place of recovery before I get to the age where fatigue sets in in earnest. 

So endeth your monthly melodramatic post by yours truly



-- Edited by Hoodietree on Tuesday 4th of September 2018 11:35:13 PM

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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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Yes, I think I am sleeping enough, Tig thanks for asking. Im averaging 11-12 hours a day. Prolly 10-11 weekdays, but a solid 12 on weekends. 

 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

Tig


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Hi Hoodie,

Are you getting enough sleep? Even if you can’t sleep, try and rest with some white noise in the background. It helped me when nothing else worked. I also use Benadryl when the insomnia is less intense and Trazadone when nothing else does. Don’t push yourself to the point of exhaustion and don’t forget the FMLA time, if you need it. That’s what it’s there for. This is a one time thing, so get through it first and then regroup. Sometimes the thought of taking time off to care for yourself seems foreign, but you’d do it for your bestie or a loved one in a second. Think about taking care of my friend Hoodie right now!



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Tig

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

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Hi Tig, Im super fatigued. I have a theory: weekends suck for me because I isolate a lot. I think I get a little depressed on weekends. Weekdays believe it or not I am still super tired but less depressed so less BLAH. Does that even make sense? Going back to work tomorrow and its a short week. hallelujah. 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

Tig


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Hey Hoodie,

Where are you? Time to check in and tell us how you’re holding up. I hope things are going well and some of that fatigue has let up. Hydrate!!



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Tig

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

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good to hear you are resting as you ride the train to wellness



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Thank you for asking after me my friends. Im super tired. Looong day. Gonna hit the sack now and will write more in the morning when Im fresh

nighty nite



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

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In my opinion, the HAV vaccine is safe. All vaccines can result in a temporary reaction, as it encourages the development of antibodies against the intended disease, but entirely safe. Of course, it's entirely a personal choice, but for people that are afflicted by other diseases, we have to be proactive in preventing them if possible. I recommend everyone visiting our forum or otherwise, be vaccinated against A and B.

HAV Vaccine Safety



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I'm a little concerned about getting the vaccine too Hoodie and personally won't even consider it until after treatment. (Trying not to have too many coctails in the body!)
Did you ever get your viral load test resubmitted? Or perhaps I missed your post on that? Wishing you the best
Bb, Iris



-- Edited by Iris Dragonfly on Wednesday 29th of August 2018 03:13:44 PM

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60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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Hey Hoodie,

I want to know how you’re doing? Are you keeping up with your water intake? I hope the aches are letting up a little and work is going easier for you. How is the smoke from the fires affecting you? Stay in the AC when it gets bad. You don’t need respiratory issues right now. Each day is one day closer to the success you‘re working so hard for, keep it up!



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

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Plenty of time to get your immunizations after you have finished treatment, Hoodie.smile

Youre doing great

 



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Hoodie,

Go by what your doc suggests - as long a both you and he have discussed all of this thoroughly and know what you are immune to or not, let him dictate what immunization you should have had completed prior to your hep c treatment, or during treatment, or after. 

With anyone having hep c, as long as they have it, as long as their livers and health resources are compromized, being overworked, being taxed, are the reasons we want to ensure we are protecting oursleves from ANY other kind of infection or illness, or disease process on top of what we are currently already having to deal with, period. Got hep c?, well then, we hope that that same body does not to have to additionally fight and cope with a cold, flu, pneumonia, infection, any extra stressor period - your liver and body already being very busy/pre-occupied having to use your valuable health resources to deal with the hepc interloper. Catching another hep (or having another form of a liver effecting event) happening on top of already having hepc, is a recipe for disaster. It is a potentially lethal double whammy that should always be avoided if possible (catching another kind of hep on top of your existing hep). A or B on top of C can be very bad, or mono, or drinking, or certain drugs on top of C can be very bad for that matter!

The whole idea behind knowing whether you are immune and/or assuring that you are made immune to other heps when you have C ... is prevention.

Preventing any possibility of contracting another hep on top of your hepc. That is why immunity screening is done pre-treatment, and that is why immunization is done pre-treatment (or sometimes initiated during hepc treatment if immunization needs to be done and is started late), generally you are NOT afforded any extra protection (it is not preventative) if you lack immunity to another hep while having C, but instead opt to wait until after your hepc is gone, before increasing your immunity to A or B. Just doesn't make much sense to wait if your immunity is lacking (as far a prevention goes) to be seeking higher levels of immunity AFTER you no longer have the C. Jes sayin. 

But being immune to hep A/B is good anytime, even if you don't have C - as there are unexpected outbreaks of A here and there and everywhere, and who knows exactly how a person CAN sometimes pick up hep A or B (just like sometimes we never quite figure out HOW we got C in the first place, B can spmetimes be a bit of mystery too!) - ya jes never know! So ... immunization is really your docs call. Some of us might have sustained high levels of liver damage even though we are cured of our hepc, holding good immunity to A and B is a very good thing, if you are a hepcfree but cirrhotic.

While you have hepc is when you are perhaps at the most vulnerable to additional ravaging damage that contracting another another hep could cause to your liver. You and your liver and body, as a whole, is compromized once you have hepc, and considering how much damage has already been sustained to your liver, any additional stress to it would not be good. There have been cases where an additional hep infection on top of C and or on top of an already damged liver, has resulted in fulminating conditions with poor outcomes. Never worth the risks if there is a way to minimize them. Anything a person can do to prevent another disease process from harming us and our livers, even one iota more, is a good thing.

Just discuss your immunities thoroughly with your doc and do as he advises. C.



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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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Canuck wrote:

I forget where you are at, you mentioned (at first) you had no B immunity, then it was decided you only needed to bring your A up to snuff? Whichever it is, you can go ahead and do it while you are being treated for C. Ideal if all that (assessments and vaccinations, as required) had been done prior to your hepc treatment starting, but many have had their immunizations brought up to speed during hepc treatment.


You recalled correctly. Im not sexually active so I have almost no risk for B I think. Right? And I dont know what my risk for A is. I would like to wait on all my vaccinations until my cured status at EOT 12 weeks. It seems prudent to me given the risks but I welcome feedback on that. 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



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Hoodie,

Further to your query about hep B re-activations (after reading those articles in the other thread), it's a rare and unlikely event (B re-activation). The articles are bascially to reinforce that none of us ever want to be put in the position of ever possibly having more than one hep at a time (or at all)! Immunization to hep A and B are important, anyone with hepc or any other kind of liver disease/condition should be assessed for their levels of immunity to A and B, and if not immune they should be vaccinated to achieve immunity.

I forget where you are at, you mentioned (at first) you had no B immunity, then it was decided you only needed to bring your A up to snuff? Whichever it is, you can go ahead and do it while you are being treated for C. Ideal if all that (assessments and vaccinations, as required) had been done prior to your hepc treatment starting, but many have had their immunizations brought up to speed during hepc treatment.

I would just ask your doc if there is any urgency (at all) about how soon your tetanus needs to be done. Aside from my hepa/b immunity, my doc was much more interested in making sure i had some flu and pneumococcal vaccinations, tenanus never came up, at all. 

So, did you ever go in and start the hep a vaccination? And, find out how they think you acheived a sufficient level of immunity to B, maybe you were immunized in the past that you are just not aware of/recalling? C.



-- Edited by Canuck on Sunday 26th of August 2018 03:43:06 AM

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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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