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Post Info TOPIC: Started Epclusa 1 May 2018


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RE: Started Epclusa 1 May 2018
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STL good call getting the 400 MGs. Take them on an empty stomach and give them a chance to build up in your system, it takes about a week. See if you notice a difference, I sure did. I was taking 800 mg per day. They go on sale for buy one get one free at the pharmacy near my house several times per year and I take that opportunity to stock up. They used to say that SAM-e was good for the liver which is why I started taking it in the first place a while ago. But I really noticed a big improvement in my hand pain from typing all day at work so that became my primary reason for taking it. Hope it helps you

5, thanks for the tip on the zinc orotate. Will look into that at SVR12. 



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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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STL, i'm sure it's UND but yes it's good to know; i did have to wait 13 weeks to get my lab tests so that was an extra week i had to wait too. good luck with hearing sooner rather than later tho

i started taking the zinc orotate {sp} , supposed to be good for liver health.

also take d3 and b12. will add the milk thistle back in soon.

i also got some magnesium citrate; that has the added bonus of moving things along too. not sure how i'll do on that, will start that next days off 

i may order the glycinate if the citrate is too much for my GI tract.

eventually i want to add in the luetien for the eyes.

 



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Hi Hoodie, funny you mention SAM-e the first I saw mention of that one was on here. I now have a box of 400mg ones. Didn't know if I should get the 200s or the 400s but thought more is best and maybe I can break them in half if I need to and it will be cheaper than 2 months supply of 200s, I now see they cant be broken anyway so heres hoping. I found them very hard to source here but I found but as usual Mr Ebay helped lol. I was waiting for SVR12 to try them. Hope I will know quickly if they help so I can order more if required. As you say they are very expensive, particularly on top of my other sups. Prescription meds are subsidised here but alas for supplements we are on our own. I am only a pensioner so don't want to be wasting my money on supplements that do nothing of course.



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Cheddy, lovely to hear from you also. I have been taking Calcium and Vit D for some 25 years since I learnt I was not absorbing calcium and had the bones of a 70 year old. (unaware of the hep then of course) I didn't think magnesium was much help a few years ago when I tried it but am now trying it again and my leg cramps have stopped and the neuropathy has eased in my feet so will keep that up. I have not tried a powder form, still trying to find one that works. Observer recommended Clycinate which I have a hard time locating. I did get a good Chelate from my local pharmacy, which I think is the same thing. I eventually ordered clycinate online 400m but when it arrived I found that was a dose which is 4 caps so an expensive bottle. I think the chelate may be better and only two of those needed. I seem to have so many bone, joint, mussel, nerve issues unfortunately. I plan to speak to my GP about them in the near future, one issue at a time and my major focus has been to first rid myself of this plague I have carried for way too many years .



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Thank you all for your kind thoughts its lovely to have you following my journey.

5, I know how quick you got yours. That was amazing. My nurse is watching for the results. She knows I am keen to know if it has worked. She will ring me as soon as she hears. She only works Wed Thurs Fri so if they don't come through by tomorrow, I will be waiting till at least next wed. I hope she was wrong with the up to two weeks thing but will have to wait and see. I did sign on for 6 months of not knowing so by my reckoning they have under two weeks to go ROFL. I don't have an office I can call. I will have to wait on her call. She is my contact through my treatment provider. My local GP will get the results also. If she gets them I will get a phone call inviting me to come in for them, but she wont give out results over the phone and I am 160km from her (100 miles)

I do try not to worry about failure but it is hard at times when I really don't feel any different than before treatment. Wont be long now. Sometimes it is hard not to think that even with the high success rate, with my luck, I will be the rare failure. At least I am busy here at the mo, so I'm not home alone dwelling. Small mercies.

 

 



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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hye stl, call the dr's office before the weekend for sure, they might have it. i let my dr know i was anxious to know the results after all the time on tx.

i was surprised how quick it came back.... not sure why sometimes the test comes sooner and sometimes laterblankstare



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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STL

Yep, we'll be celebrating.  There's nothing quite like the actual SVR12 report, for sure (big time).  At last you will be starting your HepC Free life. 

What does your doctor have to say about your neuropathy?  Did you have it before treatment? If not, it may resolve as you recover from treatment. If so, continue to pursue help whether it be medical or through supplements.  Keep massaging for increased circulation.

Sleep and muscle issues can both be helped by taking calcium magnesium.  There are powdered mixes that taste just fine in your continued water consumption, especially before bedtime.  Also, electrolytes can get depleted with massive water intake.  Since you are finished with treatment, you can start adding stuff until you find the right combo.

After all, you have to be ready for a happy dance when those tests come back!

I hope you will be doing something to celebrate. Whether it's big or small, do something meaningful to mark the distinction between past illness and future outlook.  You're on a whole new leg of your journey.

I can't wait!



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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

 



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I'm here with the rest of the crowd waiting to cheer for you.

blessings, Iris



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

59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naďve....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 STL,

I already know, we’ll be celebrating your SVR this week!

The magnesium helps my neuropathy, as does the gabapentin I’ve been taking for years. I have a lot of cervical and lumbar spine damage, so I’m never sure what’s going to hurt next, lol! It’s amazing how some of these mineral supplements work. Often better than all of these prescriptions combined. I hope you find the right combination soon. I believe with time, SVR will help to reduce a lot of these problems. Even with my self destructing spine, I have noticed improvements. We all have reason to expect improvements. I like believing that is possible for everyone!



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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 1-4 years!

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Yay STL!! Please be sure to check back so we can congratulate you on your SVR12!!

Hey, what's your doggies name? Such a sweet little friend

I found the supplement SAM-e to be sooo helpful for my joints and mood. Had to stop taking on treatment but after SVR12 (Approximately 12 weeks from now for me) I will resume this miracle supplement which sadly is quite expensive but easily accessible over the counter. 

Wonder if that could help you too? I know that neuropathy is different from actual joint pain but it did wonders for my hands and feet, and the depression too!

Great to hear your update please check back soon

 



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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 Harry,

Lovely top see a fellow Aussie on board. From what I understand the Epclusa should not effect your immune system as it only targets the Hep. As you can see I am a fellow Aussie. 66 years old. I had my flu shot early in treatment - guessing with emphysema you would have too. I reached EOT+12 weeks yesterday and had my SVR12 test done. I was not tested during treatment, as we don't do that here, makes sense to me, since earlier testing has no bearing on the end result (but not for others here )

Hoping I will hear that I am finally free of this thing soon. If it hasn't worked we will try something different so its not the end of the road. I am geno 3a.  I do not have Emphysema Harry, but constipation did plague me even after EOT. It was different as with my diet I do not normally suffer. Seemed my colon was drying out even with all the water I was drinking. At times I found the need for ememas. Things seem to be getting back to normal in that department finally thankfully.

Anyway Mate, your on the home straight so all the best, on your journey.



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Hey yay, it's STL! So good to hear from you. Well, this business with the moving, all we can hope for is that you get so tuckered out you will just naturally sleep more/deeper/longer/better. Glad to hear your news/update (well ... except for the hard to take bits - neurop/sleep etc), but the rest sounds grand, good you are trying the mag again - exciting times of transition coming right up  (these moves and milestones) to say the least - people on the move and an imminent long-awaited celebration is about to occur! Yes, we want labs and pics of pups. 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)



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Hi All, It is currently 6.00PM Wed here. I had my SVR12 8.00AM yesterday so am waiting for my result as we speak. I notified my nurse and she is watching out for my results. I was initially told these tests would take longer - up to two weeks so we shall see. Trying to keep busy with my son moving house. I'm flat out cleaning and sorting.

My Neuropathy has worsened of late, even affecting my hands (just numbness not pain, but over and over again at night. Since my sleep was already terrible its not helping - according to my fitbit I regularly only get 2-4 hours sleep with the odd 6. I have started magnesium again and it seems to be helping, particularly with my feet so that is good. I'm too busy to worry about it at the moment.

I will try to organise a pic of my baby Canuck, she is a little sweetie. Haven't even taken her for a walk the last few days, poor love, I'm so busy.

Lovely to know your thoughts are with me peeps. I will let you know when I hear.



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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hi harry.

i was looking for your thread but did not see one. do you want to start a thread of your own? it's easier for us to answer questions and follow your journey.

go to this link and click on the "start new topic" and name it what ever you like

https://hepcfriends.activeboard.com/f388110/on-treatment/

 

i got sick after eot :( , but got well. my liver clinic wasn't very hands on, but my family dr helped me thru what ever i had going on.

i am feeling much better since treatment. it's a beautiful thing. 

i'm so happy to hear you are hanging in there and with only 26pills to go



-- Edited by 5-1-18 on Wednesday 17th of October 2018 01:44:36 AM

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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Anybody suffer from copd or emphasemia while taking epclusa tx im 65yrs old breathing not the best get breathless easy new med seems to make me more exhausted i reall.dony want to catch flu or cold on top of epclusa tx ,also consipation seems to effect me on epclusa im also on pain med. Any way just thought somebody else may be suffering from this .thanks good luck everybody i have 26 pills to go keeping fingers crossed.

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Hi 5-1-18 hope you are feeling better ,i am in Australia i have26 pills to go epclusa i think you said you had hearing ptoblems as well as swelling ?2nd week i had extreme ringing in ears ended up deaf in right ear my general dr prescribed predeston (steroid) for 10 days now i am ok,nausea at times plus depresion but not too bad,im65 with emphasemia so im hopeing i dont catch any colds or flu as i get short of breath already more so with epclusa ,itried to get my VL checked to see if medication is working but was told i have to wait till 12 week after tx ,i hope you are starting to feel bit better and swelling going down.Did you recieve much support or backup from your liver clinc ?i didnt thought they might prescibe anti anxiety or nausea meds no nothing.anyway good luck to you.its all such new medication hard to find out much.thanks

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Harry wrote:

Hi,does anybody else suffer from constipation with epclusa ?also had hearing problems 2week seem ok now my dr gave me steroids for 10 days hearing ok now ,maybe becourse im older im 65 geno 3 still f2 fibroscan was ok lucky since probley got viris back in the 70s !!im starting 3rd mth today,i thought they wud check my blood but said i have to wait till after tx finished i feel so tired sometimes guess iv no choice but keep taking pills 28 to go ,just hope its working an not hurting mi immune system .thanks everyone good luck.


 yep, keep taking your pills at the same time and drink a gallon of water..this is a cure, a real good medicine so you are doing good to take it and get cured.

hang in there; it will be over before you know it



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Hi,does anybody else suffer from constipation with epclusa ?also had hearing problems 2week seem ok now my dr gave me steroids for 10 days hearing ok now ,maybe becourse im older im 65 geno 3 still f2 fibroscan was ok lucky since probley got viris back in the 70s !!im starting 3rd mth today,i thought they wud check my blood but said i have to wait till after tx finished i feel so tired sometimes guess iv no choice but keep taking pills 28 to go ,just hope its working an not hurting mi immune system .thanks everyone good luck.

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Thinking of you STL  

Still wishing hoping praying all good things for you!

Love, hoodie



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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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STL,  confuse Is it Monday in Australia? Does that mean you go for your SVR12 blood draw on Tuesday, Oct 16?? (I hope!) 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)



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Hey STL,

Was just countin days with our other Epclusa lady Hoodie, your EOT+12 week blood draw is coming up next week isn't it? And her EOT is happening in about 10 days i think. Good news for the both of you is just around the corner!

I was wondering how Hoodie was doing, and I was wondering about the same for you too.

I certainly hope something is easier, or even slightly improved, in some way (as compared to your first 4 weeks after EOT). You were not feeling much relief (at all) in being finished with treatment (as far a relief of some of your physical discomforts) - I sure hope something feels a little better or at least not getting worse! I remember 5 mentioned the things that she experienced after EOT, and I experienced some things too, it was disappointing I must admit, but still i hung onto knowing everything should work out and would improve - it took a while, but it did.

I hope the same for you, that if you are not feeling better yet, that it WILL come. I am convinced, that being without this virus, that this will help you that way. Wait and see. In the meantime did you end up exploring with any doc, any of the things you were being distressed with, did you try the mag again, maybe ask to see a neuropathy specialist guy?

In the meanwhile, wondering what you have been up to. How you and your sweet doggy pal are making out from day to day. How is your weather? Do you have any pics for us - I have never been to your continent, pics or weather descriptions are always so interesting to us who are trapped at this lat and long! Maybe you got some pics of your pup? I enjoyed that one you sent of the bird in your yard! smile

Later, 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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Hoodietree wrote:
5-1-18 wrote:

i too hope that in time my feet stop hurting like they do. my hands and wrists don't seem as bad right now , but i am def careful with them and my feet.


 Hey 5, I didnt realize you had these problems too. Im adding you to my daily prayers and sending you all my good vibes & luv. 


 thank you hoodie ,  i too pray for you and our other forum friends

every day i feel better, so i know the prayers we pray are working



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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5-1-18 wrote:

i too hope that in time my feet stop hurting like they do. my hands and wrists don't seem as bad right now , but i am def careful with them and my feet.


 Hey 5, I didnt realize you had these problems too. Im adding you to my daily prayers and sending you all my good vibes & luv. 



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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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Welcome home Tig.

Ya, i just scrolled down to where Ob's wrote it - it WAS glycinate that Ob's was remarking on. The "th"  (threonate) was the one my mind switched to, and it too is also highly absorbable and touted as good for "neuro" issues. 

The one i happen to be taking of late just comes pre-combined with some other things, but it has multiple forms  of magnesium (hydroxide/carbonate/stearate/oxide/malate/glycerophosphate) in it - some potpourri smattering of magnesium types I guess to cover multiple bases? Regardless, overall/combined it is a fairly low dose of magnesium (both in mgs and what I likely end up absorbing).

There seems to be a TON of stuff on the internet to describe what they think each kind of magnesium might do fer ya. Here's one describing the highly absorbable threonate as being especially good for for neuro issues (ignore the sales pop-up stuff).

https://www.mamanatural.com/best-magnesium-supplement/ . Good grief, it seems the more you read the more stuff you have to buy and take!

Maybe reading this will help remind STL which were the types of mag she had tried for a while in the past, and see which she might opt to try again in future.

Some people on PPI's for instance may not easily absorb mag, thus citrate might be better for them?, I read. Then, there are those of us who may have loose stool issues, they too might need to take certain forms of mag (perhaps glycerophosphate) so as not to upset the cart, BUT, then ... you also have to be careful with people who may also have renal problems! Juggling, judging and reading is required. The more absorbable (in aprox order) are 1-citrate, 2-glycinate, 3-malate, 4 carbonate - but that list is not exhaustive of all the mag types!

I'm exhausted now, so I'll shut-up now. wink 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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hi tig, so glad you made it home safely. and yea, traveling is not something i like to do



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND

Tig


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Hello,

Just checking in and unpacking from a day of fighting the airport hordes. Geez, what a mess those places are. They need traffic control inside the terminal as well as outside... eye roll 

Obs recommended form of magnesium was the magnesium glycinate formula, if my recall is correct.



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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 1-4 years!

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now days the rhumatologists want to put us on some kind of medicine, but i will keep away from that tx mainly cos it can cause other probs.

i too hope that in time my feet stop hurting like they do. my hands and wrists don't seem as bad right now , but i am def careful with them and my feet.

and now i can take some allergy meds without side effects.... i take a few grains or dust of claritin and it's just enough to help me breathe and feel better. i never take a full dose of anything .[except the harvoni of course, and if needed a cpl times a year ,antibiotics] 

i'm so thankful for UND.



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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STL (and 5),

Stay fast in the goal of gtting better in ALL ways - I am SURE some of these things WILL start to improve for you (both of you) these horrid things which may have been plaguing us prior to treatment.

We each all have dif stuff happening to us before, during and after treatment - our poor bodies have been long working under the extra constant unforgiving stress of carrying this virus, and if we feel it or not (having the virus or being freed of it) your body certainly knows you have been freed of this huge viral burden. But, for you two, it is STILL early days. Be patient, wait, hard to do when your body is still feeling in distress, it will just have to suffice (for now) to know that you have done every good thing possible for yourslef to be freed of this virus, and this cure is going to pay enormous dividends to you in future. I just know it. We are not built right to carry this virus, without it you will be improved, in what ways, we shall see.

I too did not feel "better" on treatment, nor did i note big improvements for quite a while after cure, but over time I surely have and I am so grateful for each one - whether big or small.

Now mind you, I did not have that kind of pedal neuropathy to have to deal with.

I feel strongly that you must get some attention to this part STL, ask to see a specialist of some sort for this - this much neuropathy/pain and disability is just TOO much. What were the tests they did on you again (for cryoglobulins, C-reactive protein, rheumy tests, autoimmuny tests, etc.??) What did the doc(s) come up with in regard to your pedal comlaints?, what did they say about it?? Had you already been assessed by a specialist or a rheumy guy or a neurologist guy for this pedal neuropathy? I can't recall if you had said before. If nothing else (in the interim), you just simply must give the magnesium Ob's mentioned another try, a modest daily dosing of this cannot possibly harm you and "may" over a period of days or weeks might help some (you never know), maybe you have already tried going back to trying to use some mag?, you mentioned trying it once in the past with lac-lustre results, i would try again, with the specific type Obs mentioned. I think it worth a try. I forget the name of Ob's one (starts with "th") there are formulas out there that hold "a blend of dif magnesiums" in them, to suit everyone's current beliefs on what each one might be able to do best for you, but I have heard that the "th" one may well be quite an important type of magneisium for neuropathic issues. 

I was kinda disappointed too after cure, especially in the area of energy/fatigue/weakness and other things, but the small things that happened first bouyed me, getting rid of a mysterious numb/dead, itchy painful spot on my back that I had hosted for-e-ver - just .... disappeared one day, much to my amazement! And a decades-long-standing intractable (I thought) back pain that just vanished - that one blew me away! I can tell you those two things alone were huge for me, the fatigue took a long time, i too was plagued with post-cure infections of dif sorts, abcesses and such but the face, ear, skin infection things DID stop!

I was glad to know more about the orthopedic stuff in your wrist, I had got part of it down, the "you're too old and not working" justification BS from your first posts about it!, but now that you explain it more fully, that has been quite the journey to get where you are with that! Soooo, you think it is going to work/suffice?? 

Gotta go, more later.

Certainly hope your feet have gven you a repreive of late. Fingers crossed. 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.

 

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Oh Hoodie, shucks....you sweetie, Thanks



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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See The Light, please hang in there. I will pray for you every day, please know that you are loved. 



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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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Thanks Tig and 5. Feet didn't seem quite as bad this morning so I just braved walking the dog. Poor little bugger is going stir crazy. Felt so sorry for her when I was on electric blanket on full and rotating from one side to other.....Slow roasting...... sometimes when I moved the pain was so intense I moaned or cried out ahhh or something she was so upset she jumps on my chest crying too and trying to lick me better.

This pain which most peeps think is in my head, has always eased when active so thought I need to do this, for both of us. So walk we did. apart from one ankle wasn't too bad really but when I got home and sat they were not great. Feeling so ****ty I have been feeling very down as well, so needed to do something normal. I was really hoping my feet would improve after treatment and am so upset they are worse than ever. I can only hope that in time they do improve. The pain is easing again now wish the head would too.

As I said I can't really blame the treatment as I had these things before.... Yep 5 I have had some mouth infection too. It just seems one thing after another or as well as another this week. Hope next week will be better. I have town this weekend and again next.

Sorry to hear about Canuck. I do hope she is coping OK - such a lovely helpful Lady. I felt bad when I came online to see her extensive post 6 days ago which I had not replied to.



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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i had a first ever migraine with aura, stomach flu, sinus infection , no energy, and i'm sure other things too cry, oh yea, canker sores on gums and sore gums...



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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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STL, my first month post was awful. now i'm here to say that my second month is going great; so hang in there and baby yourself



-- Edited by 5-1-18 on Monday 20th of August 2018 09:04:59 PM

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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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND

Tig


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Hi STL,

Goodness, you just sound exhausted, mentally and physically. I’m so sorry you’re feeling this way. Good to know you finally made some progress with your wrist, but geezus, what a nightmare you went through to get where you are. A victory, but I wish you had more comfort and were able to rest at night. I know you’re tough and will persevere, but... Keep your proverbial chin up and do your best to muscle through it.

I also have some severe trouble with my spine and have heard that same story about age and do I want to go through all of the surgery and recovery again. It gets tiring and of course with the opioid crisis everywhere, the people that could use some relief, can’t get it. 

I have heard similar complaints about joint pain post treatment with some of these DAA’s, but the good news is, it improves with time. I have to wonder if, like Interferon, these anti virals cause some inflammation around the joint surfaces and hurts like hell until that swelling reduces. Let’s hope.

FYI, Canuck had a death in the family and has been gone a day or two tending to that. I know she’ll be anxious to talk with you as soon as she’s back in touch. Stay well Sister!



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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 1-4 years!

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Well now my post treatment month I would say has not been great. But again with my other issues it is probably not due to treatment, so no I have not noticed anything good re other problems. My sleep is still awful. My Aches and pains worse than ever. The last few days I could barely move re my feet. Again this has always come in waves and this wave has been a doozy. Its my ankles as well as tops of my feet this time and its been unbearable. Hasn't helped with my sleep I can tell you. As I said I've had this for years but since this wave is the worst Ive ever had I am sorry to say my treatment certainly hasn't improved it.

I am getting a lot of headaches too. Still try to keep drinking plenty. Possibly partly due to my eyes. I have had appointments with a specialist re my cataracts this past week too. My sight has deteriorated substantially since the optician who referred me in October. I wonder if that is the reason for headaches as everything is blurry and reading computer etc is not real good. Now I am on the waiting list for that so thats progress- within 12 months, so heres hoping it will come up sooner than later. At least I'm on the list now measurements taken etc so that is progress.

Also been suffering the dreaded constipation this week too which broke lose with diarrhea when I could hardly move my feet....That was fun ....I'm now 4 weeks post Epclusa so I can only hope my general health improves soon and the next two months fly so I can know if I have beaten this thing or not.

 



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Hi Canuck,

Sorry for the delay. It has been a full on week shall we say. I visited Hand Clinic Wednesday and have now been cleared. I don't know just how much I said about my hand situation at the time but it was a result of a Radius which healed crooked. It took weeks to get into the clinic. They were going to fix it going by the Xray provided at the time.... till they saw the new current Xrays that day. By then it had completely healed so it was then left three months to see how it went. In three months it was not good at all I was suffering terrible numbness/pins and needles etc as well as constant pain, so worse than it was last visit. The lovely Indian registrar was wanting to perform a big op on it which would involve bone grafts from my hip as with my chalky bones the length of the bone had shrunk as well as being crooked. He went off to talk to the head man and after some time he came back to tell me he feels that due to my age and no longer working (My translation - you are too old and useless) he did not want to do it and they would instead perform a carpal tunnel procedure -( treat the symptoms was the philosophy and the main thing I was complaining about was the numbness and pain, so performing this procedure and removing a little nerve would be a simple procedure which they felt would help me. I went along with that and although it did help a little it was still pretty bad, so again after three months physio and another visit ....more talk about really fixing it but again after a talk with the head man ....this time I met the man. I was still quite grumpy about the age and work thing but had to admit he was good. He explained that to fix this would involve and extremely major operation which given the state of my bones and joints ....all the arthritic finger joints etc he felt the outcome may not be good. In not being able to move it for months I will likely lose a lot of the movement I now have. My main symptom then was the knuckly thing on outside of wrist was now more under the hand and preventing movement to that side and down. This time the answer was to remove that knuckle. Apparently the procedure is used quite often in India to improve movement, but rarely used here. It would improve movement they both felt and be more likely to succeed than anything else. They did not feel the real fix was the right way to go in my case, and talked me round. I knew this was my last ditch effort and this failed I was doomed. The procedure was called Darrach's Release, - exercise of the distal joint from the Ulna. It was done in March just before I began my appointments for Hep C. It caused me problems something chronic, because the ulna was now floating slight movement caused extreme pain. I remember in the shower I went to use it to wash my armpit  and the pain nearly caused me to pass out vomit. You cannot get back into clinic easily. I had an appointment for three months so all I could do was go A & E. I felt something wasnt stable and they would have to go back in. After wasting all day there all I end up with was an Xray...(Gorr to see this bone connected to nothing was so weird) a script for panadene forte and a referral to fracture clinic within 2 weeks....Well I thought that was ridiculous ...I didn't have a fracture but their point was at least I was back in orthopedics before the three months my appointment was scheduled for. Well that appointment didn't come for 6 weeks and by then I was seeing my man again in 5 weeks so I cancelled that one...I knew it would be another wasted trip and actually by then my hand was well on the mend. My lovely registrar was very pleased and apologized for not telling me more about the initial instability while it was healing. Well now as of Wed I'm cleared and its the best its been since I broke it some 18 odd months ago so I guess alls good. LOL There are no further options so it has to be. It works I can perform my normal duties, as well as I can expect to. It gets stronger all the time but will seized joints in my fingers .....he....it wasn't good to start with.

This essay is going way to long so will post again re my post Epclusa month



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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You are right, and you are answering your own questions! smile And Tig is right too ... you commented on what Tig said ...  " Hope it is just  as Tig said these results fluctuate. " 

The key items (that should reassure you that your labs are normal, quell your fear of failure and indicate your cure) - are within all of these comments:

... your ALT and AST's have been within normal limits, twice now.

... "my provider says they are fine I guess they are".

... "was very nice and said All looks good".

Some people having lower numbers than you has no bearing on your cure whatsoever, it is not a comparison that counts - your ALT and AST are within normal limits period, had you had the luxury of being abe to draw your bloods frequently, before, during and after your cure you would have seen fluctuations I am sure, after cure you might get some generally even lower LFT's (but really, who cares) as long as they are within normal limits. Within normal limits is good enough for the kinda gals I go with! Within normal limits is, well ... NORMAL! Ya kint ask fer much more than that! When we are operating within the realm of normal limits, a rise or lowering of a few points either way are meaningless, as long as they are within normal limits, that is what counts.

There are some here on this site who were lucky to have frequent bloods done and could follow the ups and downs in thier ALTs. Some cured people have been lucky enough to keep having frequent follow-up bloods done and some have been lucky enough to see that their LFT's have continued to decrease some! Everybody is dif. What is important is that you are GLORIOUSLY within normal limits.

I would be happily wallowing in pride over your now-lovely normal ALT/AST's and celebrating them, over your old LFT'S - and that's fer sure. wink biggrin C.

I enjoyed hearing your locums comments, nice that he points out what he considers are the important bloods to you, and, his comments on how DDA's are working out there in his world/our world!

Have you noticed anything dif now, now that you been off epclusa for a little while? Are you still having the exact same sleep/eat patterns, bodily maladies as always. Other than an initial relief of finishing my vosevi, and noticing some of the on-treatment feelings dissipating quite quickly after finishing the course, it took me quite some time to start detecting some changes for the good, especially in fog/fatigue/strength - slowly things got better, sometimes weird unexpected improvements occured, I am still improving. I thank Gilead and my doc every day. In little ways or large ways I hope you start to soon reap the benefits of your cure - it is already obvious (according to your ALTs) that (since at least week four) your liver has finally been relieved of the duress it has been operating under for quite some time. More good things to follow. 

Later, after you are further along, I would still like to ask you about that very unsatisfactory event of those doc assessing your badly fixed hand - and how all THAT went down with those guys! That's not right - maybe someday, you should re-group, bump heads with newer/kinder, more reasonable heads and be offered the choice of having that hand fixed. That whole story they told you rubs me the wrong way - thats not right - you deserve to have things fixed if you think it will help you, and if the surgery would help you! 



__________________

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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Those are all excellent numbers, STL! The Lymphocytes are part of the white blood cell group. Overall, as is stated, your WBC’s are completely normal. So having the lymphocytes elevated only means, as your doctor said, they’re there to combat anything that might try and spoil your party. Your body is having none of that! It’s all good...



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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 1-4 years!

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I don't miss those little pills a bit.  Time for new habits.  Think of a habit  you've been wanting to take up and set the alarm for that! 

I understand though.  Getting diagnosed, approved, and treated is a long and indelible process. I thought it would never end.

 

It does



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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

 



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Thanks folks. Does seem a little concerning that my numbers went up rather than down 8 weeks later, but since my provider says they are fine I guess they are. I see a lot of people here posting much lower numbers. Hope it is just  as Tig said these results fluctuate.

Yes Canuck .......all my results were very normal cepting the same three as last time. When I have a particularly odd one it is only a one of....it doesn't usually resurface [touch wood}

RDW 11.9 Low (May 11.4) [range 12-15]

Mean Platelet Volume 8.8 Low (May 9.3) [range 9.5-13]

Lymphocytes 4.2 High (May 4.39) [range 1.5-3.5]

I saw a locum yesterday and he said he wouldnt even look at those as by bloods are fine ....he circled the ones at the top of the sheet and said these are the ones I take notice of and they are all good.

Haemoglobin 123 [115-155]

White Cell Count 7.58 [4-11]

Platelet Count 257 [150-450]

He said the Lymphocytes fight infection and disease and having a few extra was good in my case LOL

He was very nice and said All looks good. He has heard only good things re people being cured very quickly and easily with the new drugs, and how amazing they are.

 

 



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Nice STL. Boringly normal ALTs and AST's, twice no less! The second repeat round of ALT/AST at your EOT only re-inforces the momentus importance of your first "foregone conclusion" of what your 4 week crash meant, you have hit bottom (in the nicest and best possible ways), that hitchhiking varmit died long ago, poof, and you can mark your ALT by that! (Epclusa police ... "Nothing to see here folks, all cleaned up long ago, move along! everybody, straight to EOT+12 week SVR")! heehee wink C.

PS - did they do any other bloods at all, like iron or ferritin levels, you said once you had a high iron level show up didn't you - maybe they will check your ferritin level, and/or maybe re-check just some of your other chemistries again. How is the insomnia dept BTW?, you haven't mentioned it in a while. 



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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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Excellent numbers STL! They will fluctuate as things normalize and you adjust back to yourself again. As long as they don’t jump off the chart and continue to stay a lovely shade of normal, you have nuttin’ to worry about... 

October will be here before you know it!



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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 1-4 years!

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Not bad at all! Best wishes for great news in Oct!



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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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Got the printout of my EOT Bloods. ALT 23 AST 30....... MMM I note up a bit from last time. After 4 weeks they were 16 and 23. They tell me that's fine so guess I shouldn't be concerned......Here's hoping Oct will bring good news!



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Thanks Canuck, you have become a dear friend on this journey I've travelled. Its been a bit strange this week without my magic beans. Different, as you say my life had been so focused on taking them. I have missed them being a part of my life. Now I sit and wait out the next 12 weeks to see if the magic was mine. I feel good. Spoke to my nurse yesterday who says my bloods were all good, much the same as last time. I will go to my GP next week and see if I can get a copy/more information.

Off to the big smoke dreckly' Time for a night of fun and laughter. Probs stay a few days....till they get sick of me, I get sick of them. If the pup doesn't be good it mightn't be too many nights. shh.gif

 



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Hey STL,

You said ... The alarm wont be ringing...". EOT is a weird time/milestone, us, so geared up, getting psyched up and ready for treatment, slogging through/complying with treatment and then .... nothing. We finally kinda get used to the routine, the concepts that were formally new to us, believe and accept the fact that we ARE indeed getting cured and will now be bettter, when, all of a sudden the pills run out - now what! The pills became (for me anyway) a little savior I swallowed each day and was dependant on for great feelings of security and hope, when they were gone there was this weird little emptyness. At the same time I was as gleeful and excited as a child marvelling at the sound of those last few pills rattling around in my bottle, getting near to the end, then there were only 2, then one, until there were none. It was a relief just in itself to NOT have to take them, but I had fleeting thoughts of missing their security and company as well, in a way. I think for most folk having hepc undermines our basic security, we are at a distinct disadvanage to say the least, hepc is NOT a confidence builder disease, when they say it is a systemic disease, boy they mean it - it affects everypart of us, mind and body. The docs, our freinds here and supports along the way of our journey, help us get through it all, but the piils come to represent the epitomy of the very best help we have ever recieved. Thank you science and Gilead. No wonder I felt funny with no more pills left. I had called them my biggest-bestest-strongest-bro (or buddy) EV-ER in a bottle, my army, saviour. It's a journey alright. Keep on doing what you are doing, walking, treating yourslef good, restings as you need it. Revel in the good work you have just done. I loved your little symbol when you said aaaah, what shall I do tomorrow!  relax.gif   C. biggrin



__________________

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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 Thanks Iris, I'm not going anyplace soon.....I will certainly update my news and of course I shall be hanging about keeping an eye on how all you "Works in Progress" peeps are doing.
Iris Dragonfly wrote:
they grew you some strong stalk.  Iris

 Love it Iris heart.gif



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30



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Congratulations See the Light!!! good news biggrin indeed, What Will you do? The nasty little worry in the back of the mind can at last take it's leave. I'm really glad for you. I will be nice to hear how you feel over time, do check in and let us know eh?

Many blessings and bu-bye beans! they grew you some strong stalk.  Iris



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59 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naďve....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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LOL You both made me laugh.....Its nearly 7.30.....The alarm wont be ringing with my silly little message set that made me smile each morning when I had to turn it off.....

Even had to take a pic of it for the memory before deletion....

Day one of the rest of my life 7.29 AM....MMM what shall I do relax.gif



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment

Gen 3a Fibroscan 8.6 Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30

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WOW! Look who just reached EOTville! Time to disembark the Epclusa Train and get onboard the train to SVR. All aboarddddd....

Congrats

 



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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 1-4 years!

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