Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: Lynnpren on September 22, 2015, 02:03:14 am
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I will be starting treatment tomorrow.This is all new to me. I have been trying to get approved for years. Then got that phone call today, that my 12 week treatment will be delivered tomorrow. I am really excited to start this but, very nervous also. Any words of advice will be appreciated.
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Welcome Lynnpren. :)
Which treatment are you on? It's useful to fill out your profile so it appears below your message like mine. That way people won't pester you with the same questions all the time.
Advice? Drink water! Really, that's the most important one. Be kind to yourself, keep in touch with your doctors. Get plenty of rest. Take your meds, let them do their job.
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Welcome Lynnpren,
Heres to a sides free, happy tx. Look forward to getting to know you. Cal(http://)
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Hello and welcome, Lynnpren --
Chances are, you'll find treatment easy. Philly already gave you the most important advice: drinking enough fluids to help clear out the toxins and prevent headaches.
I'm 76 pills down, 8 pills to go. I keep a log, noting the time I took the pill and each cup (8 ounces) of fluid with a simple "w" for water, "m" for skim milk, "o" for orange juice, etc. I also jot down anything that might or might not be a side effect. By jotting everything down, I free my mind for other things, but when it comes time to see my medical practitioner, I look through the log to formulate the questions I want to ask.
Hepatitis can now take a back seat in your life, because the medicine is taking care of it. This frees you to use your time and energy for other things.
Gnatty
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Welcome Lynnpren. :)
Which treatment are you on? It's useful to fill out your profile so it appears below your message like mine. That way people won't pester you with the same questions all the time.
Advice? Drink water! Really, that's the most important one. Be kind to yourself, keep in touch with your doctors. Get plenty of rest. Take your meds, let them do their job.
Thanks so much for your help. I am here not only to get support from all of you. Since I am new to all of this. And still trying to figure out how to get around and operate this site. I will add my levels and such when I get them from my Dr. tomorrow. I really want to learn and get to know all of you. I need you!! :) Thanks
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Lynnpren, I see you have filled in the "Personal Text" field and chosen an Avatar picture, so you've actually found the right place to add your medical results: From the "Home Forum Help Search Profile My Messages Members Logout" bar, highlight "Profile," then slide down and select "Forum Profile." The field you want to fill in is called "Signature:"
Whoever made the forum software assumed people would be putting name, address, phone numbers, etc. into that field, like they would for email -- that's why it's called a Signature field. We Hep members appropriated the field for lab results, but it's really serving the same purpose: saving us from having to retype useful information each time we post.
Gnatty
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Welcome to the forums and to the Harvoni journey Lynnpren! You will do great. As others have said - drink plenty of water and be kind to yourself. You may start to feel changes in your body within the first week because that is how quickly Harvoni works at eliminating the virus.
good luck!
kim :)
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Lynnpren, WELCOME TO THE HAPPY HEPPER SOCIAL CLUB. What the ladies forgot to tell You is that this is a wonderful place to be when Your are going bat crap crazy trying to figure out answers to all of the questions that start popping into Your head.
Step right up & ask away, no need to take a number. We will all be here a while. Maybe I should stop now before You think I'm crazy. Let me help You out a little. It's been confirmed by friends & family over the Years so don't worry.LOL!!!
Congratulations, you are the latest to win the Harvoni Lotto. And the Grand Prize is--------- SVR. Good luck on Your treatment. Again, Welcome to the funny farm, the happy home.
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Thank you all for making me feel so welcome. And Tommy I see you are going to make this trip a joyful one. Waiting patiently for the Fed Ex truck... BTW what does, SVR mean?? Thanks again for everything, You guys are great. ;)
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Thank you all for making me feel so welcome. And Tommy I see you are going to make this trip a joyful one. Waiting patiently for the Fed Ex truck... BTW what does, SVR mean?? Thanks again for everything, You guys are great. ;)
"SVR" is Sustained Virologic Response. It is the way "cure" is defined. With today's direct-activing antivirals (the drugs you are awaiting), when you reach 12 weeks after end of treatment and are virus free (SVR12), you are considered cured. :)
kim
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Hi everybody! Dr. Just called ..check out viral load ...so excited!
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Ooooh! GO ROSIE!!! Yusssssss! 8) 8) 8) 8) 8)
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Welcome Lynnprenn!
You will definitely find this to be your warm cozy place to land :) Don't worry, there is a big learning curve about test names, shorthand we use, how to do things on the forum. But, those that've traversed before you will be happy to fill you in! Usually very quickly too since we've people from all over the globe on here, yay!
As Tommy/Slats said, ask away! You've lots and lots of company that truly understands everything you're going through.
:D bye
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Hi everybody! Dr. Just called ..check out viral load ...so excited!
Wow! Excellent drop in viral load, Rosie. You got this!
kim :)
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Good on you Rosie,
You're on the way! Cal :)
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Rosie! Way to go! 24! That's less kids than in the Year 3 class at my school!
Lynnpren, that's the sort of viral load response most of us are seeing. Short and sharp.
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Ok, Im on my way. Just took my first dose of Harvoni at 4:00. I am so ready to beat this thing.
That is great news Rosie.. Hope all are doing well.
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:)
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How are you doing Lynnpren? Can't wait to hear from you after a few days...Its been really smooth so far for lots of us but if you feel rough a few days I like to think of those as "big kill" days.. I read everything that was on this forum & was so excited to see so many cured people continue to contribute to the group.I think I'll be on here for lots of inspiration & to make sure we all get UNDETECTED!!!!!!!!! :)
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How about Systematic Virus Removal?LOL. GO TEAM HEP! Seems My little Harpooni Buddies are on the hunt tonite. My liver is just a quiverin away as we speak. A little fever to boot. These 11 hour days are kickin My big ole butt! Be glad when inventory is completed this weekend.
Lynnpren, glad You got Your Christmas present early this Year! Hope Your trip is smooth & easy on You!
Cal, Rest up little Warrior. You need Your power to smite the unbelievers. Hope you are feeling better & the BP issue gets better soon.
Rosie13, I love that handle. A rose by any other name is still a rose. Watch out for those thorns though! LOL. BTW, Love the numbers.
Philly girl, Just noticed the GM added to Your handle. Good job & congrats.Hope the politicians get their heads out of their collective arses so Y'all can get the help needed down under. OZZY, OZZY,OZZY!!!
O.K. HERE IS A GOOD ONE---------------
IF YOU CAN'T AFFORD A DOCTOR, GO TO THE AIRPORT! YOU'LL GET A FREE X-RAY AND BREAST EXAM, AND IF YOU MENTION AL QAEDA, YOU'LL GET A COMPLIMENTARY COLONOSCOPY ON THE HOUSE!!!!
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Tommy, sorry your livers a quiverin'...fever too? Do you think the sides get a little more intense towards end of treatment? I hope it hasn't been like that the whole ride. So close to finish though ...HAPPY HAPPY! Hang in there. ;)
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Hello Rosie, My sides early on were so severe that I had doubts about continuing Tx. But , after a few posts & a couple prop ups & encouraging posts here on the forums I just kept trudging through them. They were so bad for Me that this part is so much easier. Still have some headaches but not at all like the first 4-5 weeks. Fever is low grade not to bad, the quivers although annoying & startling only seem to be a discomfort. Apparently I was part of the 2-3 % that had a rough time, but what the hell!! NO PAIN , NO GAIN. THE END IS NEAR.
Still a little bummed that the lab screwed up My 4 week tests & never provided the VL even though they charged for it. BCBS denied 8 week test because of it. So I just gotta believe like the armadillo on the old Lone Star Beer commercials.
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Tommy, if the lab didn't provide a VL result to your doctor or you, then they owe you a free VL test. They made a costly error; they should swallow the cost to rectify their error.
However, if they are unwilling to do the right thing, it is certainly healthier for you to express the fact that you are bummed, then move on, than it would be to sue them.
Is there another option? If the lab is part of a hospital or other larger organization, there might be some sort of patient ombudsman who, when presented with the facts, might nudge the lab to absorb the cost of redoing the test. If your insurance plans to pay for an EOT test, then it's almost a moot point now, but if you're supposed to wait until 12 weeks post-Tx, then going up channels might be worth it.
Gnatty
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Hey Gnatty, Got with ins. rep. & Doc. They are going through some sort of arbitration or something. Supposed to let Me know the outcome as far as re-test or refund to ins.co.. In the mean time, EOT will be here before hell freezes over! OOPS. I meant to say before they confirmed an error on their part & decide how to rectify the problem. How ya been? I must say it is getting close to the end of the tunnel. So bright I need My dark shades. Maybe that's Breeonthebeach emanating all that brightness!!LOL. Mean while back at the ranch-----still feeling pretty decent I must say. Just a little more tired than unusual!!! HeeHee!
Que paso en el mundo para ti mi amiga?Hope all is well and healthy at the home front.
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Lynnpren, as you can see we are quite the lively group... to quote the song "We get knocked down but we get up again... nothing going to keep us down."
Welcome to the forums and to Harvoni. It's been a smooth ride for me... this and that, this and that... but I try to just let it go. I'm pretty happy even though been awake since 4:30 a.m. (not by choice).
RockinRosie... way to go! Some of my favorite people on this thread.... Kim, Philly, Slats, Gnat, BBC...
I have an event at a place called "Secret Beach" today... can't tell you where or it wouldn't be a secret. lol. Tough job but somebodies got to do it! ha. Breeonthebeach
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Bree on the beach. You obviously live on the coast. Have a great day at the Secret Beach!
Tommy,
You've worked through this haven't you? That's pretty good. Cal :)
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I live on an island in one of our 50 states :)
Because my business comes from the internet and I diss my doc occasionally on the forum (he deserves it), I'm sort of protective so I don't burn a bridge for medical treatment and also so I don't run off clients...if you know what I mean.
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Wow, Rosie. Awesome labs!!!
Welcome Lynnpren. Congratulations on persevering the long and winding road of getting medication. They work! 8)
And like others have said... water. It's the new aspirin. At least it's been working like that for me.
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Bree,
An Island, wow nice. Is it hot where you are? So internet is very important to you and yes I know what you mean. Cal :)
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Well Bree you go girl! I live by the beach too & love it.We are fishing fools & animal lovers.more the merrier.
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Thanks Cal, Rosie, et al. Yes, it's pretty hot here... supposedly moderate tropical climate year round. ha. Kind of rainy too. But whatever, I got Harvoni! Awesome gig at Secret Beach... beautiful although it was 1/2 mile up and down, so got my exercise in. Can't believe I'm doing all this on treatment. #blessed
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Lol Else on the new aspirin! So true!
Keep it up Bree! Get some beach for the rest of us :)
First hard frost last night here :/ smh! #toosoon!
8) 8) 8)
Marianne
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Marianne,
Hard Frost? Have you had the sxs of being cold to the bone? I have. I guess you guys have homes built to accommodate that kind of weather. It's a sub tropical climate here as well. I'm in Sth East Queensland. Were usually warm. Very Hot summers. Too hot. Maybe my temperature issues will go? That would be a bonus! 8) Cal
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Hi everybody! Dr. Just called ..check out viral load ...so excited!
Way to go Rosie!
amazing isn't it?
dm
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I will be starting treatment tomorrow.This is all new to me. I have been trying to get approved for years. Then got that phone call today, that my 12 week treatment will be delivered tomorrow. I am really excited to start this but, very nervous also. Any words of advice will be appreciated.
Welcome Lynnpren!
12 weeks harvoni?? No problem. Very do-able. Just keep drinking that water and rest when you feel tired.
I had to keep reminding myself that I was on tx and rest when I felt tired. That was the hard part. Least thats my opinion..now is not the time to take on new projects it you can avoid it.
again.. good luck!!!!!!!
dm
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Hi drummerman, yes it is pretty amazing ...I kept saying the 2nd week...I think it's gone.Well a few buggers were still lurking but I'm def feeling better.next week another test to see if its undetected.my worries are the 8 wk.tx.don't know what to say on the appeal if I get one undetected because it will be the whole 2nd month with no more labs.Do you know when to send an appeal?
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Hi drummerman, yes it is pretty amazing ...I kept saying the 2nd week...I think it's gone.Well a few buggers were still lurking but I'm def feeling better.next week another test to see if its undetected.my worries are the 8 wk.tx.don't know what to say on the appeal if I get one undetected because it will be the whole 2nd month with no more labs.Do you know when to send an appeal?
Not sure I understand,.... you are currently on harvoni for 8 weeks... so treatment naive , correct"?
And worried you are not on treatment for a longer time? and might not get undetected.
Is your question, how long to wait before starting the re-treatment process??
I'm confused.
dm
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I'm thinking you mean when should your doctor start the appeal process to get approved for the third month? I guess I would start with asking your doctor's team. One of your old posts said they were planning to appeal.
But no more labs during the second month at all? Just EOT?
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Marianne,
Hard Frost? Have you had the sxs of being cold to the bone? I have. I guess you guys have homes built to accommodate that kind of weather. It's a sub tropical climate here as well. I'm in Sth East Queensland. Were usually warm. Very Hot summers. Too hot. Maybe my temperature issues will go? That would be a bonus! 8) Cal
Hey Cal,
I've been chalking it up to menopause (sorry fellas on this thread ;) ),I'm not cold apart from the couple of weeks we get of minus 0 F a year. Plus, once you've spent a Winter here, your blood thickens (like it prolly thins for folks where you live) to accommodate the temp. And, yes, all homes, hehehem, igloos here are particularly insulated and tightly weatherized. Truth though, the midwest and Canada have much colder and more difficult Winter's than Alaskans. Coastal effect plus we get a decent amount of air carried up the streams from Hawaii over the Winter. Don't tell ANYONE! We want everyone to be impressed with how tough, bad and deserving of all that reality tv and movie making :D SHHHH! We've had spectacular Northern Lights going all week!
Cool temps probably haven't helped with the peripheral neuropathy, that I'm 99% convinced is hcv related cryoglobulinemia vasculitis, since it only takes extremities getting below 98 degrees F for it to develop. Many folks living in warm states here in the US have developed this issue.
I'm gonna go with we'll ALL be celebrating our farewells to our hcv ride alongs! Swift kick included at no additional cost :D
8) Marianne
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Hey Bye,
I have peripheral neuropathy too. And a diagnosis of vasculitis. But tested negative twice for cryoglobulinemia. False negatives are common for cryo tests.
Gah! :o I'd rather forget the insanity of the winding road to approval. Had a hepatologist, a rheumatologist and a neurologist all be doggedly noncommittal that my peripheral neuropathy was related to my HCV. :-\ But my GP? She thought it was the likely cause.
So I'm really, really curious if this will clear up or at least abate with treatment.
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Hey Else,
That'll be the "take that!" proof we'd love love love to have right? :D
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True ByebyeC. I was never so cold as when I was in Quebec City (-40C) and Montreal (-20). I stayed away from Saskatchewan because I heard it was colder. I'd like to travel to the Yukon, maybe next trip. This time round I'm seeing my daughter in Vancouver and then we are heading to Cuba.
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Good Morning Everyone.
Thank you all for the warm welcome and for the great words of advise. Today will be day 4 on Harvoni. Not sure if taking it everyday at the same time is important, but I take it at 4pm everyday. Get really tired about 3-4 hrs later. Yesterday morning was the worst of all days. Woke up with a major headache, nausea, muscle aches and freezing. Today much better just freezing. I am so glad I decide to join this group. You guys let me know I'm not alone. (((HUGS))).
And yes, Water is my new aspirin. ;)
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Hi Lynn, I'm not sure with Harvoni as I took Viekira, but I tried to take mine at more or less the same time to form a habit. It helped me to remember to do it! One side effect I had (and in fact still have) is that I am more susceptible to cold. I get chilled pretty quickly and will often be wearing one more layer than everyone else. I honestly don't know if it's the virus, its passing, the drugs or the fact I lost about 16lb while on treatment.
I do remember feeling pretty crappy in the first new weeks, but it passed. We get a whole raft of side effects, they change, ebb, flow and even vanish. Good luck with yours. :)
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Hi, Lynnpren - Sorry you've got some of the common side effects and one other (the freezing). Slats/Tommy has been dealing with most of the same ones, so you're in good company. He's nearing the end of Harvoni treatment, so you can get there, too.
I've taken it at the same time each day (6 AM plus or minus 2 minutes) mainly out of superstition. There are people on these forums who have gradually adjusted their time to minimize the impact of whichever side effects they have. If you want to do that, it's best to tell your medical practitioner why you're asking (so that s/he knows which side effects you're experiencing) and to ask how gradual the adjustments should be.
Here's hoping your side effects are a passing phase (that's been the case for many Harvoni takers).
Gnatty
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Lynnpren, Yep every day 6:30am , Pint of h2o before and one with pill! By the time I get to work at 7:00 am , I already have 2 liters in Me. Never noticed any difference in fatigue/ exhaustion more than the regular unusual. ( read ALL THE TIME!! ) First 5-6 weeks I had problems with severe head aches & joint pain. Nausea was minimal. Boy , I would love to have the cold problem. I seek out cold because I sweat like a little piggy in the Texas heat!!!! Most of the sides were manageable , but a real pain in the ass when You work full time. So keep Your chin up, get help if You feel You need to, and above all don't give up. I had thought about stopping Tx. at first but after joining the wonderful Happy Hepper Country Club I thought better. A few hot showers,some advil, & a lot of support from all the World Wide Hep support group & I persevered. You can do it too! Have faith in the Meds. doing their job , come to the H.H.C.C. for a little support & a kind word whether You need it or not. That is what this place is all about!!!!
Well enough for now. OKAY EVERBODY!!! Happy Hepper SVR Conga line forms on the right!!! Line up now. Try not to step on anybodies toes. Here We GO!!!!!!
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Hi y'all!
Hey Philly,
Yukon is spectacular! Especially in the Summer :D Way too cold in the Winter. And, Cuba! I'll try not to get to jelly, as my kids say :) How FUN! 8) 8) 8)
Hey Lynnprenn,
You've got tons of company with those sides. Good thing, there are as many good days as there are awful, judging by the majority of posts. :) Lots and lots of water, caffeine free tea, juice, milk etc.
Your good day is a' comin'! :)
Tommy... you are ALWAYS good for a laugh! Jumpin' on the H.H.C.C. conga line! Ba ba ba ba bum bum. Ba ba ba ba bum BAH!
Don't worry about stepping on our toes though. We can't feel 'em, lol! 8)
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Good music visual BBC, I was trying to figure it out but had short between My brain & my fingers.LOL. The toes thing was a veiled attempt at the cryo-crap- my- toes are falling-thing.
Dwell on the good for it gives You hope, Don't dwell on the bad for there is no time to mope!
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Hey Else,
That'll be the "take that!" proof we'd love love love to have right? :D
Yeah, I'd like to be right alright. ;) I'd like my GP to be right - and she usually is! But more than either, I'd just like to feel my toes again. I used to be really into yoga.
Then again, I just watched a documentary about a guy who was climbing Mt. Everest with two prosthetic limbs. Made me feel more than a little embarrassed about whinging over my numb toes. ::)
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yes, drummerman & else, there will be no more labs after 2nd month starts till EOT...that means to me, if I understand the Dr., that they are confident with the 2 wk # that the next lab will show undetected & not sure when they plan to appeal. I had to remind her about the appeal for 12wk tx so maybe I am doing the " crazy lady" dance but I don't want to be the conductor here!Wondering if you guys know how long an appeal for longer treatment takes.
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I have not heard about timelines regarding appeals for extending treatment.
If I were you, I'd start a new thread on the topic so the most board members can see your question.
btw - nothing wrong with the 'crazy lady dance'! Sometimes it spurs people to action.
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great idea...never started a thread so I better see to it...I guess when you have to remind the one in charge it can be disheartening. She is busy...she likes my 2 week number . I told her that the people on this forum have been questioning the success rate for 8wk. tx & I am sure I made her yawn!
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Lynnpren,
First welcome...as you may have observed you are well supported and now you know what it is like to have your thread hijacked ;). Gotta love this bunch, right? Believe me, this forum will be your new addiction.
This "chill" thing. I know the feeling, it is like being chilled to the bone, even when it is warm. I will share one insight. There is a condition referred to as Herxheimers reaction. It happens when there is a sudden die off of bacteria or virus in the body. A common symptom of Herx is chills. Viral Die off with this drug is fast. As has been reported by most, the first few weeks is where most sides occur. There are many, like Tommy that have a rough time, and those that barely notice. You are a perfect candidate for cure...will be a piece of cake.
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Lynnpren, think of it like this! I am like the crappy end of the stick. The 2-3% that have it rough. Think of Yourself as part of the other 97-98% the ones that have little or no sides. Like Beto said, PIECE OF CAKE. By the way, ever watch a little kid eating a piece of cake???? You only have to get a little in Your mouth to enjoy it. Wearing it is half the enjoyment. Then You wait for the next piece with anticipation. So the good days far out weigh the bad ones!!! Here is to easy sides , good health , and SVR.
BTW, getting hijacked isn't all bad. Just more good info.& support, with a few chuckles thrown in for good measure.
ROCKIN' TO THE RHYTHM OF THE TRAIN, I JUST WISH I KNEW WHO WAS DRIVING THE DAMN THING!!!!! LMFAO!!!!!!!!!!!!
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Lynnpren,
Yes, very important - same time every day! That's the one thing that was stressed to me. With food or without is fine... but important to set a target of same time very day. If there's a slip up in that, not critical but make that your goal. I set the alarm on my phone timer for 9 p.m. (my time I take it).
And, the symptoms you mentioned - I had chills first night - after that not. I think like someone said, lots going on in the body. The other symptoms - kind of the same - after the first couple of weeks, mostly gone. This drug is AMAZING!!!
I'm at the end of Harvoni (3 days left)! Wait till you get your first labs.... It's a motivator for sure.
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That is so awesome Bree, Congrats ;D
I am trying to get my Hep c, results, so I can find out what my Viral Load is.
I feel pretty good during the day. It is the mornings that are alittle rough. I take my pill at 4.pm. And by 7-8 pm. I am done.
Think I need to jump in Tommys Congo line, tomorrow to get some exercise and keep my mind busy. Trying not to step on anyones toes. Coming to this forum and reading everyones post, helps so much. It is now part of my daily routine. And I love it here, You guys make me feel so much better about this battle. Thanks! You guys Rock!!! 8)
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Be to,
I have the chill to the bone thing a lot. I really appreciate having an explanation for it. Thanks. Cal :)
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Lymphren,
Yes important to get a copy of that V/L test, so you know what the fall us. It makes you feel warm and tingly, metaphorically, not literally like a sxs! :) cal
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Yeah, I'd like to be right alright. ;) I'd like my GP to be right - and she usually is! But more than either, I'd just like to feel my toes again. I used to be really into yoga.
Then again, I just watched a documentary about a guy who was climbing Mt. Everest with two prosthetic limbs. Made me feel more than a little embarrassed about whinging over my numb toes. ::)
"Wiggle your big toe."
I work with a student learning drums who has cancer and undergoes chemo... kinda puts things in perspective.
dm
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Hi Lynn, I'm not sure with Harvoni as I took Viekira, but I tried to take mine at more or less the same time to form a habit. It helped me to remember to do it! One side effect I had (and in fact still have) is that I am more susceptible to cold. I get chilled pretty quickly and will often be wearing one more layer than everyone else. I honestly don't know if it's the virus, its passing, the drugs or the fact I lost about 16lb while on treatment.
I do remember feeling pretty crappy in the first new weeks, but it passed. We get a whole raft of side effects, they change, ebb, flow and even vanish. Good luck with yours. :)
Wow, I totally forget about the cold side effects. I literally wore a hoodie in my house with the hood pulled up...I was freeezzzingg. We keep our house at 70 degrees and it felt like 35 degrees. I looked like an idiot when I went outside with a hoodie on in 95 degree weather. Fortunately it only last a couple of weeks and the it came and went. Its gone now. I also had a few nights of night sweats and shivering during 2nd week.
But motto has always been "no broken bones, no bleeding, no one dead?? You're ok."
dm
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yes, drummerman & else, there will be no more labs after 2nd month starts till EOT...that means to me, if I understand the Dr., that they are confident with the 2 wk # that the next lab will show undetected & not sure when they plan to appeal. I had to remind her about the appeal for 12wk tx so maybe I am doing the " crazy lady" dance but I don't want to be the conductor here!Wondering if you guys know how long an appeal for longer treatment takes.
Sometimes I think my doc knows more than he lets on. Hopefully that is the case in your circumstance.
dm
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I still have the freezing to the bone thing. I am wearing a leather jacket out. That I can slip off when the sweats come! No pain no gain. Cal :)
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Yeah, I'd like to be right alright. ;) I'd like my GP to be right - and she usually is! But more than either, I'd just like to feel my toes again. I used to be really into yoga.
Then again, I just watched a documentary about a guy who was climbing Mt. Everest with two prosthetic limbs. Made me feel more than a little embarrassed about whinging over my numb toes. ::)
Hey Else,
Posted on another thread, lots of medical-ese... Very informative about nerve/vessel issues related to hep c. Giving this to your Dr. might keep her/him from yawning :D...
http://www.hindawi.com/journals/jir/2012/236148/
Good luck and God bless!
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On day 5, Harvoni really hasnt been to terrible. Only 85 pills to go.. I am trying to adjust to the minimal side effects. I am so happy for the ones who are undetected and nearing EOT. Someone posted about loosing weight. Boy, That would be a great thing. Each day have been experiencing different feelings. Not sure if is due to the tx or it is just something in my head. I try not to ponder on it and find things to keep me busy.Cant wait until Monday to call Dr. and get my VL. Have a wonderful night all.
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Hey Lynnpren,
Glad to hear you're doing well on tx!
Your feelings are so very normal.
It's a weird mix of excitement, fear of the unknown, strange and marvelous things happening inside your body, mind and spirit, pent up emotions from the years you've had this over your head, bubbling to the surface suddenly and joy. Some very brainy, brilliant people, off in their labs, created a way out for us!!!
The waiting... oh the waiting. Carly Simon singin' "An-ti-ci-pa-tion! An-ti-ci-pa-ay-tion, it's makin' me wait. It's keepin' me way-yay-yay-yay-yayi-tin'!" :P
Well, so we wait together :)
Marianne
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yes, drummerman & else, there will be no more labs after 2nd month starts till EOT...that means to me, if I understand the Dr., that they are confident with the 2 wk # that the next lab will show undetected & not sure when they plan to appeal. I had to remind her about the appeal for 12wk tx so maybe I am doing the " crazy lady" dance but I don't want to be the conductor here!Wondering if you guys know how long an appeal for longer treatment takes.
I'm still confused...
Harvoni for 8 weeks is for tx naive patients (or was?)
Are you treatment naive?
Has this changed and and gilead is now recommending 12 weeks?
If not , I wouldn't worry about it.
Your vl at 2 weeks was so low... you are responding and should continue to do so.
There are people on here who weren't even und at eot , but went on to und later after eot. It happens.
You must be reading that thread by csolisnfl.
check this link
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4378517/
look at the ion 3 trial , last paragraph.
Not a lot of people in the trial, but it might give you a little peace of mind.
And fairly recent trial (April 2015).
dm
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Drummerman and Cal,
I am happy to say Ive made it through the first week. The chills seem to have vanished, I hope they stay gone. All the side effects are now down to a minimum.
Else Thanks for sharing information link. I will be check it out. ;)
Called Dr. this morning to get my Pre-Harvoni..VL #'s. Which I added to my profile.
Will get first results Oct 6th. Excited to see how the #'s dropped.
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Drummerman and Cal,
I am happy to say Ive made it through the first week. The chills seem to have vanished, I hope they stay gone. All the side effects are now down to a minimum.
Else Thanks for sharing information link. I will be check it out. ;)
Called Dr. this morning to get my Pre-Harvoni..VL #'s. Which I added to my profile.
Will get first results Oct 6th. Excited to see how the #'s dropped.
wow, you sure started with a low viral load! That's good. Treatment naive???
Every day is different when treating. My good days outnumbered the bad , thank goodness! But none of it was too bad....just uncomfortable.
Hang in there!
dm
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Hi everybody! Dr. Just called ..check out viral load ...so excited!
See there! Excellent!
dm
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Wow Lympren,
What a low V/L to start. You'll ace it. Glad sxs are subsiding those chills are yuk. Cal :)
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You are probably already non-detected. This stuff is amazing! Good for you!
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wow, you sure started with a low viral load! That's good. Treatment naive???
Every day is different when treating. My good days outnumbered the bad , thank goodness! But none of it was too bad....just uncomfortable.
Hang in there!
dm
dm
I am on Harvoni. Not sure what Naive is?
So since my viral load is low, Maybe I will be undetected before the 12 week tx. Do you know if there is any possibility of this virus returning????
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Treatment-naive means that you have never taken medication to treat your Hep C infection before. Typically that would mean one of the older interferon, or pegleated interferon with ribavirin treatment regimens.
If you are NOT treatment-naive (have been treated before), your course of treatment with the new direct-acting antivirals would be longer. 24 weeks, instead of 12 weeks.
You stand an excellent chance of responding to treatment. The success rate of Harvoni is spectacular.
Theoretically, anything is possible but I would focus on what is probable. You will do great!
It might be worth mentioning that you can always get reinfected from high-risk behaviors. That would be the most likely way for the virus to return.
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Other factors that dictate length of treatment in addition to what Else mentioned regarding if you are treatment naive (not treated before) if you were treated before they recommend at least 12 weeks, also viral load (over 6 million then suggested 12 weeks) and liver status (if cirrhosis - which is generally F3 or F4), then maybe 24 weeks. There are different variables in that. Did you have a fibrosure test or fibroscan or biopsy for a liver score? Doesn't seem likely that you have cirrhosis with you viral load so small.
The reason I said you are probably already showing non-detected is because often folks with very high viral loads (like me 13.5 Million showed non-detected in 4 weeks)! It still means to finish the treatment but it's good to know Harvoni knocks it out quick. You need to finish to make for certain. I just finished 12 weeks and doing well!
It sounds like your doctor is taking good care of you. Hope that helps and if I got it incorrectly, others please correct me.
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Else,
According to thitable it's still 12 weeks for tx experienced. With viekira oak txer are doing 24 weeks because of cirrohsis, unless I'm wrong. I'm tx experience F0 doing 12 week of VP?
http://smchealth.org/sites/default/files/docs/PHS/STD-HIV/2015_03_04_Report.pdf.
Cal
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Viral loads to wriggle around a bit though. In the space of 5 months - not on treatment, just living - my VL dropped from 700,000 to 360,000. And even with VL so low, I still have cirrhosis.
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Good point re viral load Philly. All I know is if your viral load is over 6 Million with Harvoni they recommend 12 weeks... and viral load doesn't necessarily tell you how much liver damage. I had a high viral load but apparently no cirrhosis. So please disregard my previous statement re viral load. Thanks!
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Else,
According to thitable it's still 12 weeks for tx experienced. With viekira oak txer are doing 24 weeks because of cirrohsis, unless I'm wrong. I'm tx experience F0 doing 12 week of VP?
http://smchealth.org/sites/default/files/docs/PHS/STD-HIV/2015_03_04_Report.pdf.
Cal
Wow, this link has it all! Sorry LynnP. I'm afraid I was as clear as mud. The state of your liver (which isn't reflected by your viral load as Philly said) and what genotype you are determine length of treatment.
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It might be that lower viral loads over many years could result in more liver damage. This is just an observation, however comparing notes over the years and watching many posts, I have seen a lot of indication of this. In my own case, I have enjoyed fairly low loads, highest 800,000 and a low one of under 5,000 (after a rigorous alternative treatment). Of course after posting this I am sure a rash of contrary info will blast this post into dribble, making this observation moot.
Anyway, if that is the case even some of the time, it could be because of a very active immune system. The immune cells (or immune factors) attack the liver cells that have been invaded by HCV, killing them and resulting eventually in fibrosis. or so I am led to believe.
There are so many individual factors that weigh into the differences in fibrosis progression or viral load that perhaps any speculation at this point is useless. Would make a good study though.
Years ago when I was a solid F2 a friend of mine with Hep C, geno 3 was walking around with loads of 13 to 20 million. Her biopsy showed a beautiful pink healthy liver. She did just six months of Peg/ribo and was cured. 1A's had to go 18 months, which is why I declined.
HCV has a mind of it's own.
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Else,
Hi Genotype is everything! Geno 1 has always been notoriously difficult to tx until now. Cal :)
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Beto,
V/L really does move around a lot. I was at my highest 9million before tx. I was stunned, before this, approx. 8 months I was around 650,000. Luckily the drugs are so strong they can make a meal out of the viral load very quickly mine dropped in 2 weeks from 9 mil to 54 (whatever's in my signature!). I don't know if V/L equates to liver damage. I know just about every other organ in my body is hcv diseased and my liver if F0. Go figure.
I'm hoping to prove the theory that once hcv is eradicated the maladies settle down. Well that's what my Professors are banking on anyway.
To tell the truth I haven't followed my V/L that much more the LFT's. It sounds like you have followed yours quite a bit. I am curious, if you don't mind what was the alternative route you took?
And yes I do agree HCV has a mind of it's own. Cal :)
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I'm hoping to prove the theory that once hcv is eradicated the maladies settle down. Well that's what my Professors are banking on anyway.
I'm hoping to prove the same. My money's on your Professors. I think, in the not so distance future, doctor's will be saying, "I can't believe they used to think this was primarily a liver disease."
So much more to learn.
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No kidding; If it is in blood, then it has access to the whole body. Also, if the liver is functioning poorly, them more circulating toxins are cruzin around.
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Else,
You said it succinctly. "I'm hoping to prove the same. My money's on your Professors. I think, in the not so distance future, doctor's will be saying, "I can't believe they used to think this was primarily a liver disease." Thank you. In America you are much more accepting of co morbidities than here in Oz. My Professors are all waiting. But are not willing to hold themselves up to ridicule of their peers. I hope to make them proud and have them educated for the next HCVer who comes through their doors. I have one particular one who looks after my auto immune stuff who has always said, tx and we'll see if this isn't related. I want to make him right. I take any publication out of America or Europe I can to my Doctors. I have been a self advocate for 20 years. Cal :-*
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A couple of weeks ago, when the four hepatologists connected to the hospital system that oversees my care each gave a short talk, it was the youngest of the four who spoke about extrahepatic manifestations (EHMs). And when my HCV was diagnosed it was the very young (as doctors go) nephrologist on my lupus team who saw a connection right away. That bodes well for future understanding. -Gnatty
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Gnatty
Sorry you have Lupus. I won't bore you with my list. I think I mentioned they are taking my thyroid as soon as I am clear of tx. Everything I have under 5 professors is an EHM. I like that phrase, I shall be using it. Thanks. You are a smart person. Cal :-*
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. . . I won't bore you with my list. I think I mentioned they are taking my thyroid as soon as I am clear of tx. . . .
-and I'll spare you my "organ recital." It's amazing how many body parts a person can lack and still walk around looking like a regular human being. Will they give you a few days to celebrate EOT before their scalpels come out?
Wow, I just put the word "thyroid" into the search box on these forums. You have a lot of company in Hepland.
Gnatty
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Hi Gnatty,
Thanks. I saw them I think 2 weeks ago and they said they'd give me 6 months to get over everything and be well for surgery. I can imagine HCV thyroid issues would be a plenty. Mine was worsened by ifn tx. :'( it's gonna be weird without it, I hope they tighten the skin, I don't want my otherwise pristine body to look old......too late for that!!!!!! Cal :P
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I hope they tighten the skin, I don't want my otherwise pristine body to look old......
Well's there's a silver-lining and perfectly reasonable request, as in, "while you're at it". ;) I think that would fall under the category of being tidy in surgery.
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Hehe Thanks Else,
I ope the surgeon sees it that way! Cal 8)
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Hey Cal!
I'm with Else! Have em tuck n tidy since they're already in the neighborhood! :D
<3 (((hugs))) and God blesses,
Marianne
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Haha Marianne,
I am trying to find a silver lining. I'm actually petrified. Do you know anyone who's had their thyroid taken out? I don't. Cal :'(
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Yep. They've been fine.
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Thanks Phily,
I wish I could meet someone and chat about it. Cal
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Cal- Piece o' cake. My nephew had thyroid removed in his early 20's. He's 40's now and a working actor in LA. He had cancer. He has been on thyroid all these years. No scar...no issues. You will be fine.
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Cal, why not post it as a separate question in this forum? That way people will see it.
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Cal, my sister had her thyroid removed 5 years ago. She said she feels much better since having it removed. Luckily they took 1/2 so she doesn't have to take medicine to make up for the thyroid. My cousin had the whole thing taken out, and hasn't had a problem since.
Scout
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Hi Beto,
It's so nice to hear stories with happy endings. So good about your nephew. Thanks. Cal :)
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Phily, I will do that. Good thinking. Cal :)
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Hi Scout,
I think it's quite different if they leave some in. Then you don't have to take thyroxine, or as much something like that. But I appreciate you telling me. Calm my nerves. Cal :)
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Hey Cal,
I didn't mean to sound glib, or in anyway trivialize you surgery (if I did). Surgery is always a big deal and scary. I get freaked out just having a tooth pulled. Never to be taken lightly. Just be assured that everything will be OK. It is easy for me or, anyone else to feed you stories of successes, or to give you a nudge. With all you have been through, here is another obstacle...a bump in the road? yes...but also, one more hill to climb. Just remember you are not alone.
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Hey cal, are they for sure going to take out your thyroid after you finish treatment? Wouldn't it be cool if it kind of reversed itself because of treatment? Haha one can hope anyway....14 days to go for me and I am done!!!!!
Scout
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yo scout,
I had not thought of that. Lots of things can turn around after the burden of hep is gone. This disease is hard on all the organs...thyroid issues have popped up elsewhere. Yeah Cal...maybe your thyroid will re-boot and you can be all like, "you ain't taking my thyroid yo!"
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It's possible...with the hep gone...those white cells can attack stuff they should be...hey, I never thought there would be a cure for hepatitis either at one time.
Scout
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Your numbers are looking good beto
Scout
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Thanks Scout,
Yes totally cool. I believe that my cirrhosis is going to improve down the road too. Looking at ast/alt numbers that low is so weird. Also, I would have never imagined having adult conversations about how good my numbers looked. :)
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Beto,
I didn't find you glib. I wanted to know of success stories and you gave me one. Thanks. Also thank you for saying your with me. I haven't spoken to anyone about it yet. They are really over my HCV adventures and just want me to get over everything. Wish I could, my greatest wish actually. Yes another fork in the road. Cal :)
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Hi Scout,
They are taking it out because the ifn caused 6 large goitres to grow and they have grown over my thyroid. It is still functioning normally but I have difficulty swallowing and it's leaning on my larynx as my voice gets randomly croaky. So no it won't resolves unfortunately. It will however stop me from feeling like the Elephant man :-[ hehe Cal :-\
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Beto,
I don't know if goitres can shrink. I doubt it somehow. But it would be nice to say. Yo you ain't takin no thyroid from me he hear! I love the way you guys say Yo! Beto are you from the city? Cal :)
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Hi Scout,
They are taking it out because the ifn caused 6 large goitres to grow and they have grown over my thyroid. It is still functioning normally but I have difficulty swallowing and it's leaning on my larynx as my voice gets randomly croaky. So no it won't resolves unfortunately. It will however stop me from feeling like the Elephant man :-[ hehe Cal :-\
Hi Cal. Have you asked your doctor about alternatives to thyroid surgery/removal? I am pretty sure there are drugs that shrink thyroid goitres. Maybe they don't work in all situations. Also, I think aspirating the goitre can be done to reduce the size (i.e., a needle that removes fluid). Maybe you have investigated all this. But it seems to me that thyroid surgery and removal should be the final resort after all else has been tried - especially when the thyroid is still functioning normally…
best,
kim
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Hi Kim,
I'm really glad you brought this up. I was in too much shock to ask about alternatives to radical surgery. I have had the 2 giants ones aspirated. That was horrible. But I see my GP tomorrow and I'll ask her about getting a second opinion. The waiting list to get into see endocrinologists is 6 months. I guess I could put my name down now. I think they are worried about choking and permanent damage to my vocal chords. But I am willing to look at shrinking. The 2 big ones are enormous you can see them protruding easily. People ask me what it is. If surgery is the only option then I do have an appointment to see the same specialist again in 5 1/2 months. I could ask him why he has. Recommended surgery ? Thanks I really am not thinking straight. Cal :)