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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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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.



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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 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 8.7

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 .....Oct 16 2018 SVR12 UND



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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! 



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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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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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



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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.

 

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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 8.7

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 .....Oct 16 2018 SVR12 UND



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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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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)



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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 8.7

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 .....Oct 16 2018 SVR12 UND

Tig


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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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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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Image result for woohoo gif



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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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CONGRATS STL!!



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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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Well that's Bean Number 84 down the hatch. My dear friend Epclusa Bottle number three is empty. The Pillbox is no longer required. 7.30AM "Magic Bean Call" alarm removed from the phone. EOT Bloods have been drawn. Now I sit back relax as I move closer and closer to the light.

EOT is Here....EOT is Here.....EOT is Here



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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Nite Nite......Sleep tight Canuck

 

11 1/2 hours but who's counting. ROFL

 

Yes 5 I will go down for the blood draw in the morning......will have some have some insight into my liver health by the end of the week. Then ill join you on the big 3 month wait to see if the treatment was successful nod.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 8.7

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 .....Oct 16 2018 SVR12 UND



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I hardly ever pay attention to the clock, I just know I've been (oops) up too late, for sure, when I start to see sunrise! I never know what time it is on your side of the pond (or the correct day, for that matter), nor do i get it right even over here! Don't wear a watch and generally just dunt care to, I'm usually late for eveything and I prefer to make my buddy wear all the watches and be the minder - so easy for me. Stress boy, personality A type so he's constantly watching the clock anyway, what for I dunno!

So I waaaaaas gunna say "one more sleep" eh? But that is problematic, me with no timesense and our time warp. Suffice to say, it surely IS going to be mighty fine to see you take that one last lovely bean, in what ... 12 hours and 25 mins (but who's counting). 

Oh dear, I see 5, you are incorrigible, bad influenece on me girl, goading me on to stay up another 3 hours!

I HAVE to go to bed - got to get up early tomorrow for some stupid home plumbing disaster we are going to try to take care, on a Sunday no less, right - will be brushing my teeth with cold water from a bottle in the AM, no more tea for me tonight, it will only make me pee and with no water for flushing the toilet ...

I hope you are feeling a little better 5 and that you have an absolutely grand EOT celebration tomorrow STL even if the venue has to be in a lab for a while. You can do a EOT happy dance anywhere, and who cares who's looking. wink C.

https://www.youtube.com/watch?v=4wt824D1Bqg

   



-- Edited by Canuck on Sunday 22nd of July 2018 06:07:23 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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are you getting EOT labwork done this week? oh yea, the joy of not having to focus on "is it time for my pill?" .... it was like the baby that needed to be feed and bathed and changed.



-- Edited by 5-1-18 on Sunday 22nd of July 2018 05:47:38 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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Thanks 5 its yes hard to believe that in 12 1/2 hours my last magic bean will be down the hatch, and within a couple of hours I will have had my EOT blood test. I will be so weird to not have to focus on 7.30 am any more. party.gifsun.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 8.7

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 .....Oct 16 2018 SVR12 UND



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SeeTheLight wrote:

clap.gifYes Iris it sure is. I have a new pic ready for Monday when I swallow my last lovely  little Magic Bean toolmao.gif


 , i'm so excited for your upcoming EOT



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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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clap.gifYes Iris it sure is. I have a new pic ready for Monday when I swallow my last lovely  little Magic Bean toolmao.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 8.7

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 .....Oct 16 2018 SVR12 UND



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Wooo Hooo!! the light at the end of the tunnel must be getting brighter

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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)



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Yes it certainly gets me that so many of us seem to suffer with the same type of thing, and it is only us realising to late that it connects, to this blasted dragon. My foot thing has been so bad at times I could not even bear the Doc, Physio or Ciro to touch them without screaming and yet they see nothing wrong. As Observer said, even a sheet at times can be excruciating. Who would believe that a virus running rampant in out blood and damaging our liver could have this effect on our feet/nerves. The things this darn virus does besides killing our liver. angered.gif I wonder in this day and age if the Medical Profession will realise it is not in our head - the pain we suffer is real and extreme. We are not bunging it on for drugs. Certainly not one of my problems that I would have ever put down to the Hep, and clearly the medical profession do not associate it either.

5 more beans to go!



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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 8.7

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 .....Oct 16 2018 SVR12 UND

Tig


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Hey Ya’ll,  wink

If I didn’t know we were all getting better and just read our histories, I’d be the first to wonder how we made it this far! Good grief, we’ve all had quite a journey, haven’t we? It is encouraging to see that we’re not alone with so many of these issues. Even more so when we read of the improvements. The pizzer is it took so many years to figure it out... 

I’ve got the added joy of a serious spinal injury and it has taken front seat to many of the lingering hepatic manifestions related to long term HCV. Arthritis and nerve damage seems to be getting worse, but as STL mentioned, you learn to live with it. Doctors all think we’re seeking pain meds, so the standard answer is physical therapy, OTC anti inflammatory drugs and repeat visits that accomplish absolutely nothing. Oh well, they say “bite the bullet”, so I‘m looking for a flavored bullet to bite on. That seems to be working as well as anything.

6 Beans, STL? Wow! You’ll be done and that Dragon will be a thing of the past, in no time. I must agree, Year of the Dragon, is a good sign. 

FA66D93F-9DC1-4DE9-8681-4A157D3CF325.jpeg 



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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 1-4 years!

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the tops of my feet hurt too :( . so do the bottoms and sides a lot too... i too am hoping a lot of this stuff eases off when we recover as time goes by. i use a topical gel with ibuprophen in it that i order from the UK. i only use a little but it seems to help.... have you tried various aspirin lotions and other potions?

and neck pain- and i hear ya about the doctors; it is almost like they are just shooting darts at a dart board.

i'm so thankful the magic beans came our way

i get to go to the dentist and eye doctor on the 25th...... oh lucky mebiggrin

maybe even sinus doctor tomorrow if my ears are still all messed up. , i always wonder if they can really see anything by shining the light up my nose and in my ears.hahaha

have a good sleep stl, and a good magic bean morning as the count down continues 5



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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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Wow Observer and Canuck,

It just amazes me how many people who's stories I have read who suffer similar things to me. All these years I just thought I was a weirdo. I have had the medical profession look on me as either crazy or a druggie trying to get my hands on some good meds. I think they realised pretty quick I was not chasing drugs when after they initially insisted on prescribing stronger and stronger drugs patches etc and they were doing absolutely nothing for my pain so I said no thanks and left them to it and and learnt to ignore the pain. My cross to bar and all that. Pain is only a state of mind. Guess I just learnt to ignore it. The downside is I have been known to ignore the pain of broken bones also which has caused another set of problems as in things like bones knitting wrong...ohoh. I just gave up on doctors in general, since there was never anything real wrong with me. I didn't want any antidepressants etc. All the years of funny blood results yet noone ever thought I may have this virus. It was only discovered when I asked to be checked after a call from my old friend telling me she had learned she was positive and felt given our hep story of 20 years previously I should be checked. then another 16/18 years of knowing the truth yet noone cared. You have it but it wont kill you, easy on the booze and protect others from your blood rarara. It took a locum to suggest treatment last year when he saw my odd blood results and I told him I had Hep C. Guess it is never anywhere visible in our notes since I have always had to point it out. I tell you what when I got referred for treatment last year and got the standard - you are on a waiting list, dont call us, we will call you thing I really never thought it would happen. My most recent journeys into the system had not been very fruitful in treatment to get wrongly aligned bones fixed. I even had a lovely Indian Registrar who was going to do a bone graft go off to speak with the head honcho and came back saying ...he feels because of your age and you no longer work it will be best to leave it - my interpretation - you are too old and useless for us to worry about - left me feeling this hep referral would go the same way...My name would never come up so when it did I couldn't believe it. Then everything went so quickly and I was actually going to get treatment. Only then did I really start reading up on the treatment and others experiences etc on and after treatment here and realised I was not alone. I was so pleased to have found you lot. So many others have suffered the same things as me. I was just gobsmacked when I found this forum and starting reading your stories. I was notalone - I was not  just a weirdo.

Now Observer as to the magnesium. I did try that some years ago. I think initially I bought the wrong one, then I bought three or four lots of what I thought was a good magnesium. Cant actually remember which one glycinte I don't think sounds like it - maybe chelate or similar. I know I studied up on it at the time. Its getting late here, Ill have to think about it in the morning but I didn't find any benefit from it and it wasn't cheap so I stopped buying it. I kept up the calcium and vit D for the osteoporosis and mega b for the nerve problem in my hand the hand surgeon had recommended but left it at that. I have been really hoping the feet thing would improve with treatment but seeing yours is still pretty bad and mine particularly in my left foot is getting worse the last few weeks, maybe my cure wont help, the damage is already done. Who could have known that this virus I was led to believe wouldnt kill me, was probably causing so many other issues in my body which never ever entered my mind were likely connected. Having these nerve things so many years guess I can't dare to hope my magic beans will really bring about that much magic.

Don't think I will be seeing the nurse either. She will ring me re bloods. I already have the paperwork. Had it since my treatment began. Next weeks bloods are CBE and MBA20.....SVR12 are for HCV, RNA PCR (qualitative) Anything else will be back with my GP for future normal bloods. As I said apart from the LFT's none of the other odd results have been ongoing, just something different each time, so yes I will be curious to see any future abnormalities for sure.

Clearly we have different names for drugs here. I read you talking about different meds, I have no idea what they are, so don't comment. You always mention Tylenol for one...Never heard of it - no idea, but clearly it was common. thought it is clearly common mild pain med. Here we have as our common over the counter headache pill type things are Panadol/Panamax. Thought in my mind it must be something like that. The packet only lists 500 m paracetamol , where when I looked up tylenol it lists a different ingredient but following on told me that this ingredient(Too late to google again but you know what I mean)  is paracetamol so bingo...penny drops....finally got that one sorted... laughing.gif

I do have confidence that I will be cured come SVR12. I was even born in the year of the dragon....lol - hope its a good omen. I look forward to getting those liver function numbers from next weeks test and as my nurse has said many times if those numbers look good she is confident a cure will be mine, but we can't be sure until October. I certainly will be asking if I will be having any further fibroscans in the future. We shall see.



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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Ah, I see, just the clinic nurse handles you versus the doc having to handle you - works.

That's right, (I forgot) you DID previously clarify that (that of course) they will be giving you all the other routine bloods (except VL) at EOT. I hope that they repeat the tests (as before) which included the CBC and MBA20. I would ask for a ferritin (as they had mentioned at one time that they had found a high serum iron?). Good she will arrange U/S following for you, you could also ask for repeat ongoing periodic fibroscans. Any of your labs, that have ever been out of wack in the past, should be done again at some point, just to prove that they are indeed still funny or remain normal. 

When you do go back to see the nurse, and to get your labs done at EOT, do list all your bodily complaints to her that have been chronic, ongoing (just so that they are foremost in her mind), give her a written list even, hopefully she keeps good notes and will keep inquiring of you, as you progress, as to what SHE believes is of interest to follow - you can also impress apon her which of your items of distress, dysfunction YOU find most important and wish to be followed, in the hope that somehow/someday we are going to get this stuff to disappear. Just make sure she knows where you are at (as far as complaints).

I had different feet things going on than you. In the recent years before treatment I got more and more pedal edema, not appeased with any control measure i could create, seemingly it would come, go, reappear, or just stay ... all of a mind of it's own! with no real causative association with diet, salt, water intake, exercise, elevating feet or having them dependant, it was a mystery to me (of course not knowing I had hep c!). I would get foot cramps too, out of a dead sleep in the middle of the night was bad enough, but those that happened during the middle of exercise class, while in the dentists chair, or while driving on the freeway were very inconvenient! I'm not much of any kind of swimmer, but in the pool I had to have the edge of the pool always safely within grasp or I could embarrassingly drown with my leg cramps! Never in a million years did I ever think anything like my foot and leg cramps/pedal edema was being caused by anything more than ... an unlucky out of shape mysteriously aging unhealthy bod, old kidneys, maybe a little dehydration, electrolyte imbalance, just needed a tad of magnesium etc., blah, blah, blah. It has stopped!, no more pedal edema, only occasion foot cramps, rarely leg cramps - much MUCH better than I used to be, and I did NOTHING dif (except for that my hepc was found and cured!) I am very pleased with this change for the good since my cure. The edema stopped fairly quickly after cure, and I am still, just now, noticing how much less frequent the cramping is now, as compared to the past ... biggrin. I express this example hoping you too will see changes like these. I lost a long time pain too, it simply just up and vanished!, and some other mystery items disappeared too, but that's another story.

Now, with all this talk about being "in the dark" until SVR12. Nonsense - I am of the FIRM belief you were (like almost 100% of us) set up/positioned/destined to be cured from the second that first pill past your lips, and that you WERE already UND at the time your LFT's crashed at week 4! When your LFT's crashed like that at 4 weeks, that is when (or, probably VERY close to when) you went undetected! The rest is just simply sustaining it. It's as rare as hens teeth that people don't get cured nowadays. You are exhibiting the very evidence of an early crashed und at 4 weeks.

I do a lot of reading for fun, scads of studies, i wish I could find the one for you I was re-reading just the other day, but I can't seem to scurry it up again - it was just highlighting what has come to be well-known, with the likes of these new DAA's ... how VERY profoundly, how VERY importantly these early LFT "crashes" ARE - they are VERY significant, VERY telling . I consider you a done deal girl.

You'll get a glimpse of your lovely crashed LFT's, again, at EOT, nice milestones, but that early crashing week 4 one should be cherished. 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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Omg StL ...

that pain on the top of your feet is probably/ possibly peripheral neuropathy. furious I had it a bit very randomly from the HCV but the Drs always thought I was crazy when I *complained* ....then during treatment it got so bad I couldnt even let the sheets or blankets touch the top of my foot. It comes and goes now but is still pretty bad, its worse on days that my tinnitus is worse and thats nervous system caused too.... Ive heard apparently some people get it from chemo, so it doesnt surprise me that our powerful treatments might just be amplifying the damage that the HCV did to our nervous systems.

 

oh and about the leg cramps/restless legs at night thingy... I suffered with both those for years and years...and now I take magnesium glycinate (not citrate) every night before bed and I do not get them at all anymore, unless I forget for a few nights in a row. 

Hopefully the proper bed was the answer for you, but if they start again I recommend the magnesium 

6 beans yay. Thats exciting 

 



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Hi 5, Lovely to see you. Yes I have been reading but I really haven't had anything of interest to report. Basically things have been going a bit too smoothly. OhOh shh.gif 6 beans left in the beanbag..... shoutbox.gifNext week I will velieve I am moving into the light....Had a great nights sleep last night even.... rofl.gifWhats the world coming to!!!! LOL Most of my things I don't feel are medication issues ....just me issues..... as Marvin said in hitchhikers guide.... LIFE - loathe it or ignore it - you can't possible like it.....

Windy as today, I think the roof is going to blow away......walking in one direction would be great but the other way Whoops.... lmao.gif Typical.....Feel good this morning



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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 8.7

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 .....Oct 16 2018 SVR12 UND



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Hey Canuck,

LOL No no Dr appointment. I don't even know if I see her again. (Prob not if I am cured) That appointment was just to organise some tests to get the treatment prescribed. We have liver health nurses who deal with the ongoing treatment, blood tests, ultrasounds etc. I believe from what she said I will have ongoing ultrasounds for a few years, I think that will be six monthly initially so guess there will be one of those invites come my way perhaps a little before SVR 12. I do have a blood test scheduled for next weeks EOT. But its not VL as I have been told again and again it is irrelevant  as we wont know for sure if I am cured until October. Any results prior to that my be false negative so we dont test. I realise things are different in your part of the world but ehh thats how it is here and I will go with the flow. Thats fine with me. I do get where shes at. It would be worse to think I am cured for three months and then find out I'm not. I will get my LFT results so they should tell the story adequately.

Don't think I can blame all my aches and pains on my magic beans. I live with these things all the time. The only time my foot thing disturbs me at night is when I am overtired and get the restless leg thing where I may have to get up and walk for a while and then hope I fall asleep quickly before it starts again. They used to cramp a lot at night but touch wood haven't had any of that for ages. I changed my bed to a normal bed bout a year ago (from a water bed I had had for 30 years) I was sorry to see it go but being so low and moving it was getting too hard for an old girl to get out in a hurry (perish the thought at mo with all the extra toilet breaks...lol.)lmao.gif  and I actually think as much as I hate to admit it that a normal bed does appear to have improved that. My left foot was very painful on my walk yesterday. I only did 3 K. Its the top of my feet that are the problem and nothing works for the pain. Over the years I have been given stronger and stronger meds but they don't even touch the pain all they do is get me flying so high I no longer care about the pain, so I won't take em. I think most of them think its in my head as they do with fibromialgia - unexplained pain - no swelling etc. With my feet I find as much as they hurt something chronic when i first start a walk but ehh I can walk it off.

As to the excessive phlegm thing thing we will see next week if it goes, normally that is something that only happens when I am getting a cold/flu, though I am a very allergic person.

Thanks for caring smile.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 8.7

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 .....Oct 16 2018 SVR12 UND



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woohoo! we are starting the 7 day countdown with STL , i was wondering where you were at on your thread, i do see you around the board posting to others so that was cool.

i feel for you and all the pains, seriously i do know how that goes. i'm so glad you didn't have to go off to daily work during that last month. after 2 months i was done in.

i hope you have a good heating pad for your body; i live by mine.

i think the whole sinus was designed for another creature and added onto us humans at the last minute , cos i know too many ppl [and me] who suffer so much with this model.

i hope you get to take it easy and rest as much as possible on this last week

5



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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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There you are STL! Been wondering how you were. 

Wow, only one week to go, I am glad - I will be so glad to see you finished this work - and it has been work, you deserved a smoother ride, but ... you did it and are doing it VERY well. I always wish there was a magic sleep wand handy around here, if we could fix nothing else, it would be nice if folk could get a few extra winks of sleep when they wished for it. Now snot gets in the way of zzzz's! Too cruel. Ya, please do not let the pup in his well-intentioned ways try to fix your sinus thing for you - eww. 

I was always mostly a cat person growing up, eventually when we got our dog, I had formerly been grossed out to think of slobby dogs licking the leftovers off the same plates as their humans and then it all going into the sink for a quick washup - horrors, I thought - hmph, didn't seem to take me long at all before I was sharing dog saliva, dog kisses, wearing 11 years worth of dog hair. 

I had an allergist tell me I should try an experiment for a month, snorting some steroid in saline wash up my nose into my sinuses and back out again - ho-li crud yuck, i failed miserably at it - the doc then let me try a much more poilte nasal "spray" much closer to my skill level, maybe it helped, maybe it didn't, I don't know, i just kinda gave up on all of the spraying and mucking about. I never had "post-nasal drip" before (as far as I know) and yes, it did bother me at night, and generally I sleep like a rock, man, this would be too much if you are already of the light to non-existant variety of sleeper. Always clearing my throat during day. I do try to gargle with hot, hot salt water when it is bad - normally that does work pretty good for me anyway for things like sore throats.  

Ya, you have your fair share of discomforts alright - hard to say what's up with your bad neck and all this post-nasal drip thing added to your other things that might "normally" plague you - your feet bothering you too - does that keep you awake the most? - I sure do hope these things let up as soon as possible for you after cure. We'll just let this drug crud (sorry Gilead and epclusa- I really DO love you!) get outta your system, clear you out, clean you out and wait for "the good" to start to show, in it's delightful fits and starts. Won't be long now, EOT is a VERY good milestone. wink C. 

PS - I know you said are not getting VL labs until SVR12, but do you get a doctors appointment at the end of treatment? If you do, you should list and tally all the things you have been experiencing, just to see if he is motivated to do some kinds of blood work on you before your SVR12.



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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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Well here I sit with one week to go. Put the last 7 magic beans in the pillbox this morn. Really thankful for the magic beans and the friendship and help received here. Thankful to have managed so well, with few nasty side effects, especially considering I live a pretty isolated life here, the majority of the time, with just my pup for help. She does give lots of love but can't make me a cuppa tea or get my din-din. She does say oh mumma you don't feel good ill kiss it better a tad too much for me....yuk

Still having this mucous thing going on - definitely not a cold so will see if it goes away when I finish treatment. Like Iris my neck has been killing me but I suspect that and most of my other aches and pains are likely Arthritis/fibromialgia/neuropathy type issues rather than my treatment. My feet have been killing me I know that. I think most of them are my age and these other issues. Was hoping some of these issues would improve after treatment. Guess I shall see. I really haven't had much to report. Have a bit of the lingering headache type thing a lot of the time but its only mild. I would say no fatigue at all. I do feel a bit dohey still at times, and can be a tad lazy no-b- bo'd, but actual fatigue I would say I haven't suffered.

All the best to my on-treatment friends and recovering from treatment friends along with my long time cured friends. Its been a joy to know you are here for me. Thank You. worship.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 8.7

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 .....Oct 16 2018 SVR12 UND



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ohh Canuck, how sweet - we are on par. My town is small, so most things we have to travel for. There is a larger town 40K (25M away) which has most things but for a bit of variety we do need to hit the big smoke. My kids are down there so I go down fairly often. The country here is quite dry. The hills are only now getting a little green tinge to them. Its been getting cold, but not much rain as yet. We had a few days of rain a couple of weeks ago which has just started to tinge the dry ground. Rain is predicted for the next few days so I washed the linen yesterday. Just did a load of dark clothes and have put it out but will keep an eye out. Its windy as so shouldn't take long, if the rain holds off. Nowhere near as cold this morning so water flows freely. I'm pretty lucky I rarely can't get anything out the pipes whereas my friends regularly cant till about 9.30AM. Doesn't usually cause damage, we just have to be patient. We just make sure to fill the kettle and make sure we have a few bottles in store just in case. It always cracked me up when I worked in pubs, when the tourists from Canada and UK would mention how cold it is. I'd always say but you get it a lot colder than we do. They tell me it feels colder here. We don't get snow, just frigid heavy frosts. They tell me its to cold to snow. LOL.

I agree water is an amazing thing. We could not survive without it! Even most of out motor cars can't run without it so its not just living being who rely on it.

I didn't drink much early yesterday and I think I paid the price with pain in both sides most of the day. I'm on it this morn. Just gone nine and I have a litre down and two cuppas.



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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 8.7

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 .....Oct 16 2018 SVR12 UND

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