Author Topic: Here we go,and I'm ready (Read 90246 times)

BillT · « **on:** October 16, 2015, 09:50:12 am »

I start on the Viekira tomorrow for 12 weeks.I'm being told with my genotype it's a 100% cure and won't try to kill me like the Pegintron I was on 11 years ago.I'm taking it through the VA and was told they only add the Ribavirin if you have cirrhosis.They did a FibroScan on me and it was a 10,my viral load is 440k,my genotype is 1b.I never thought we'd see this in my lifetime and I'm ready to get this started.

BillT · « **Reply #1 on:** October 16, 2015, 10:21:35 am »

Just to lighten it up a bit.I told a lady friend some of the side effects were insomnia and making me irritable.She looked at me and asked how we were going to know if I was having side affects.I didn't know what to say.

gnatcatcher · « **Reply #2 on:** October 16, 2015, 10:32:32 am »

Welcome, Bill -- thanks for the chuckle. Amazing how low your numbers are 11 years past prior treatment. You're in great shape. Best wishes for an easy time on treatment.

Gnatty

BillT · « **Reply #3 on:** October 16, 2015, 10:49:35 am »

Thank you Gnat.I wish I didn't need to be here but I am.Like a lot of others got this when I was in the Army.I was diagnosed in 1980 when they were still calling it non-A non-B and found out when I went to donate blood.This will be nothing compared to the last treatment.I refuse to let this beat me,and I refuse to lose my sense of humor.

Philadelphia · « **Reply #4 on:** October 16, 2015, 04:43:04 pm »

Here is a great place to be. 12 weeks, no riba, 1b - you my friend are in the box seat.

BillT · « **Reply #5 on:** October 16, 2015, 04:50:58 pm »

I got better seats since the interferon treatment Philadelphia.My VL at that time was 800+k.I'm very grateful to be where I am right now.I can live with 12 weeks of this and what I will consider minor side affects.I'm 5'8" and dropped to 126 lbs on that one and swore one of the last 3 shots was going to kill me.I was told it only worked on 30% that took it so this one is a blessing.Say hello to Upper Darby and West Chester for me.

Philadelphia · « **Reply #6 on:** October 16, 2015, 05:05:42 pm »

I live in country Australia. I can say hello to Tintinhull and Timbumburi if you like.

Philadelphia Story is the name of my good horse.

Philadelphia · « **Reply #7 on:** October 16, 2015, 05:06:39 pm »

I did go through Philadelphia on a train in January though!

Else · « **Reply #8 on:** October 16, 2015, 05:08:50 pm »

Quote from: Philadelphia on October 16, 2015, 05:05:42 pm

Philadelphia Story is the name of my good horse.

I've always wondered about your handle, Philly.

Welcome BillT. Congratulations on starting treatment! It sounds like you're going to do fine.

Cheers!

BillT · « **Reply #9 on:** October 16, 2015, 05:19:01 pm »

Thank you Else.I know this time the stars are with me.I'm very confident about this and so is my doctor.I've had the meds since Tuesday but because I need my apps on Fridays I was told not to start until tomorrow.I'm so ready for this.To Philadelphia al I can say it AUSSIE,AUSSIE,AUSSIE,OI,OI,OI.lol Keep your sense of humor people it makes the bad times better,and they will get better.

Cal · « **Reply #10 on:** October 16, 2015, 06:46:19 pm »

Hi Bill,
Welcome to the forum.
You'rve ticked all the right boxes. Geno 1B no ribas, low damage. You'll SVR no problems. So you're 12 weeks? Yes I did ifn, a lot of us here have. I never got over it. Lost a few body organs and lots if health to it. It like drinking rat poison. You'll hardly know you're txing without the ribas. If you were re on ribas it would be a different tx altogether. Good luck. Cal

BillT · « **Reply #11 on:** October 16, 2015, 07:03:48 pm »

Hi Cal,
I'm still mentally in that last treatment even though it was 11 years ago,and I'm still a bit goosed about this one because of that.I realize this is nothing like the INF but it's still there.I can't wait until tomorrow to get started.I can't believe after this many years my numbers are so good but I'm grateful for that.I'm also grateful that those of us with it have a chance to get rid of it.I wish everybody all the best in their treatments.It sounds very positive to me after reading the other posts.Thanks

Cal · « **Reply #12 on:** October 17, 2015, 12:28:42 am »

Hi Bill,
I hear ya. It's a shaky road psychologically if you've txed before, the thought of what happened before is always there, but you find a way to deal with it. Put it in a little box in your head and tell it to stay in it's box. Let it out when you SVR! That's what I try to do. I am not always successful, but the forum helps me a lot to stay positive. It's the program we have now and it deserves our full attention, you give it all you've got and I know you'll svr. But yes get started already, half the anxiety is waiting. We become very good at waiting don't we? Cal

lporterrn · « **Reply #13 on:** October 22, 2015, 06:30:13 pm »

The FDA just posted a warning about Viekira Pak and Technivie: http://www.fda.gov/Drugs/DrugSafety/ucm468634.htm

BillT · « **Reply #14 on:** October 22, 2015, 09:22:25 pm »

Thanks again for posting that Lucinda.Considering the small number of cases as opposed to the number of total treatments with success I think it's worth the chance to be rid of this.We'll just have to keep a close eye on things as we go.Most of the drugs on the market have higher instances of major problems and doctors prescribing this when it not recommended could be a large part of the problem.I for one will continue.Thank you again.

Philadelphia · « **Reply #15 on:** October 23, 2015, 09:28:17 am »

After reading the notification I rang my treating hospital and spoke to one of the nurse specialists I dealt with. He said that he'd pass it further up the food chain.

His comments were that VPak was never recommended for Child-Pugh B or C and the insert said not recommended. In relation to any concern of mine, he said they monitored all clients very carefully with regular blood tests - true, Week 2, Week 4 and then monthly until EOT and for me because of raised bilirubin levels extra testing in Weeks 6 and 10. He said he'd expect to see things go downhill while on treatment and continue that way. As my last blood test 2 weeks post EOT had shown bili back to 1 point outside normal and ALT and AST in normal range (as they had since week 4) I should attempt not to panic.

lporterrn · « **Reply #16 on:** October 23, 2015, 09:54:04 am »

Yes, not panicking is the best advice. I think it best to know that this warning exists, and heed this, "Patients taking these medicines should contact their health care professional immediately if they develop fatigue, weakness, loss of appetite, nausea and vomiting, yellow eyes or skin, or light-colored stools, as these may be signs of liver injury."

Sounds unlikely to happen to most, especially those in the early stages of liver disease. Also sounds like most of the occurrences were in the first month. Also, medication interactions seemed to increase the risk.

If you are on these drugs, panic will make your treatment very uncomfortable. Just watch for these signs, and let your doc know ASAP rather than hope things will improve. You can talk to your doc or pharmacist about potential drug interactions. Here is a good tool: http://www.hep-druginteractions.org/

BillT · « **Reply #17 on:** October 23, 2015, 03:02:27 pm »

Well today I feel like I just want to jump out of my skin.I'm tired,irritable,and stressed to hell.I'm just going to suck it up and go on(like there's anything else I can do).I hope this isn't a indication of what the next 11 weeks are going to be like.

lporterrn · « **Reply #18 on:** October 23, 2015, 03:11:55 pm »

Bill,
Please remind me - are you taking ribavirin? If so, this may be what the next 11 weeks are like, but there is help for that. If not, then I'll leave it to those who only took Viekira Pak w/o rib to weigh in. Also, sometimes we just have jittery days - meds or no meds.

BillT · « **Reply #19 on:** October 23, 2015, 03:23:18 pm »

Hi Lucinda.I'm only taking to Viekira thank God.I've been doing great so maybe it is just a bad day for me.I'm just completely exhausted right now so that probably has a lot to do with it also.I think someone mentioned that weeks 2 and 3 were the worst also.I guess part of the stress is also the unknown part of,is it working.I get the 2 weeks labs done on Wednesday so maybe that will calm me some.If it wasn't for this forum and all of you I'd be completely lost.Thank you.

BillT · « **Reply #20 on:** October 26, 2015, 04:18:25 pm »

I'm excited.I'm on day 10 and will find out Friday the results for my 2 week labs.All those side effects that crushed me on day 7 are gone and I'm feeling great.I actually slept better the last 2 nights than I have in forever and I feel like I have more engery.I wish I could move time a little faster.

Whatever doesn't kill you,doesn't kill you.

Cal · « **Reply #21 on:** October 27, 2015, 05:54:18 pm »

Bill,
You're nit are ribas either. Just try some deep breathing and there are loads if deep relaxations online you can lie down and do. It'll pass friend. Cal

BillT · « **Reply #22 on:** October 27, 2015, 06:09:20 pm »

No I'm not on the ribas Cal (Thank God) and I've never known how to relax.That's just part of me.I did go on a 5 mile bike ride today and really felt the fatigue right after but I'm fine again now.Tomorrow I go get my labs done and will get the results on Friday,and tomorrow night I'm going to see Mark Knopfler as a treat to myself.I don't know what the turn around time is for them to do the labs but I may call triage on Thursday and see if they have the results.I'll post them as soon as I find out.Wish me luck.

Cal · « **Reply #23 on:** October 27, 2015, 10:11:39 pm »

Oh Bill,
You're first 2 weeks bloods. Good luck and have a great time at Mark Knopfler you lucky guy! Cal

BillT · « **Reply #24 on:** October 29, 2015, 05:25:11 pm »

Well I had my lab work done yesterday and will find out tomorrow.I'm really irritated because I found out they didn't do a VL on me and that is what this is all about so I'm going to request they do one when I see my doctor.I have a question for everyone.I noticed when I over extend myself physically from what I normally do the side effects seem to show up more or worsen.Has anyone else noticed this?

Cal · « **Reply #25 on:** October 29, 2015, 06:50:36 pm »

Hi ?Bill,
Re the sxs. Yes! That's why I am resting today. TV and the couch. We can't do to much, we have to be gentle on ourselves, but you only learn from over doing it! Good luck with bloods. The LFTS will tell a lot. Bugger they didn't do the V/L. Cal

BillT · « **Reply #26 on:** October 30, 2015, 06:26:32 am »

Good morning Cal,
I noticed that the only time I have any side effects is when I exert myself.It's like they wait in the shadows for me.The last few days I've had things to do so I know I pushed the envelope but I'm learning what sets it off.One of the odd things is that a few hours later they die down and then I sleep better than I have for years and feel great.I go see the doc later today so I'll ask about having the VL done and let you know.You need to get some bon-bons to go with that TV and couch.

BillT · « **Reply #27 on:** October 30, 2015, 04:40:17 pm »

I'm thrilled.I have to wait until week 4 for the VL but everything is pointing towards it being undetectable.I also discussed another Fibroscan at the 12 week post EOT.He told me that they've been wondering about that themselves so that's a go.My new numbers have all come down dramatically.Thank God.

AST 14 ALT 17

Cal · « **Reply #28 on:** October 30, 2015, 04:42:49 pm »

Hi Bill,
No! No Bon bond, (we call them lollies in Oz!) I lost 3 Ks st the beginning of tx and then got a voracious appetite around week Six and put it back on, I am trying to avert a weight watchers crisis!

Yeah I'm the same with pushing it too hard. Which I have to say isn't a lot! I am going to have to do some serious exercise when I am well enough. Cal

Cal · « **Reply #29 on:** October 30, 2015, 04:44:17 pm »

Oh Bill,
What brilliant numbers, better than most really healthy people! Good on you. Cal

BillT · « **Reply #30 on:** October 30, 2015, 04:54:18 pm »

Thank you Cali,
I'm so happy with that.My platelets dropped a bit but all else is great.My blood pressure really dropped but I was told to expect that and I'm waiting for them to call back and let me know what they want me to do.I feel wonderful so I'm not worried and will just continue onward.I've been eating a lot and I've still dropped 5 lbs.Look at it this way,now is not the time to diet,quit smoking,or exercise.

The Dragon has flatlined

Philadelphia · « **Reply #31 on:** October 30, 2015, 05:28:22 pm »

Look at your pretty numbers Bill! They are impressive.

JAF · « **Reply #32 on:** October 30, 2015, 05:50:59 pm »

Bill I'm so happy your numbers look so good. And you're right about knowing your limits. I did a lot of resting the first week because I didn't know what to expect. Little by little I push myself further. This past Monday my daughter took me to lunch and to run some errands. I felt fine so when she mentioned clothes shopping I was all in. Later that night I literally fell on my bed and didn't do a thing. I slept so good that night. I find a few extra steps each day works best. The bad days (which luckily have been few) I do nothing at all. My doctor is doing my labs in 2 weeks. I have faith they'll show improvement. All the best on your VL. Keep killing this beast!

BillT · « **Reply #33 on:** October 30, 2015, 05:59:46 pm »

Thank you Philadelphia and Jaf,
I'm floored.I expected a little change but nothing like that.I wish they had done a viral load but I couldn't be happier right now.I'm happy for all of us.Can I lead the Conga Line tonight?

Cal · « **Reply #34 on:** October 30, 2015, 09:48:29 pm »

Bill,
I'm right behind you on that conga line. Kicking and screaming wahoo! Cal

Cal · « **Reply #35 on:** October 30, 2015, 09:50:01 pm »

Hi Jaf,
I haven't met you yet, so welcome to the forums. You're looking really good too! Good luck with those bloods. What week are you on? Cal

Else · « **Reply #36 on:** October 30, 2015, 10:17:20 pm »

https://www.youtube.com/watch?v=cKg8IKfZ4cE

Cal · « **Reply #37 on:** October 30, 2015, 10:24:48 pm »

Brilliant Else,
That's us exactly and in Australia too! Cal

Else · « **Reply #38 on:** October 30, 2015, 10:27:52 pm »

Yeah, I was thinking of you and Philly when I saw Adelaide.

slats1056 · « **Reply #39 on:** October 30, 2015, 11:29:33 pm »

Else, THAT is what I'm talking about!!!!

Exactly what I had in mind

Just think if it were all Heppers, I bet we could make it all the way around the world at least once

Way cool.

Bill , You take the lead & let's see just how many international Happy Dancers we can get in line. I'll bring up the rear working the whip!

Cal and Marianne, We will carry You guys if we have to !!!

NO ONE LEFT BEHIND, EVERYBODY NOW, KICK UP YOUR FEET AND DANCE!

BillT · « **Reply #40 on:** October 31, 2015, 02:01:58 am »

Hey Cal,You've got rhythm girl.And of course we have to give Else credit for the music.Tommy,if they were all Heppers they would be much happier and having a better time.

Cal · « **Reply #41 on:** October 31, 2015, 04:40:15 am »

You'd have to stop for rest breaks a lot! Then there's my RIBA cough attacks, other than that I'm in the conga line, starting in Adelaide! It's such fun! Cal

ps thanks Bill, I've got an imitation of rhythm will that do.

BillT · « **Reply #42 on:** October 31, 2015, 09:18:21 am »

I'm so glad I found this forum and you people.It's hard for my family and friends to understand what this does to us and you all make it easier.I didn't get much sleep last night and my irritability is off the charts this morning.I hope none of the fish pee in the tank or they're in real trouble.What a way to start week 3.

slats1056 · « **Reply #43 on:** October 31, 2015, 10:08:31 am »

Cal, No problem

. You got the rhythm and I got the blues, all rock n roll in between,LOL

. Now all we have to do is get Marianne back on board

. BTW, ain't got nothing but time My Dear.
Bill, I can relate to all of Your points. after 12 weeks Tx. and 3 weeks EOT the sleep has finally come to Me.Irritability bordering on rage is an issue! Also, You find out who Your real friends are quickly. Unfortunately it also causes casualties on the home front Too!

!

BillT · « **Reply #44 on:** October 31, 2015, 10:30:47 am »

Good morning Tommy,
I'm pretty much raging on right now.I have to say I've been blessed so far as side effects go.The first week was a bit dodgy but I know that was my system getting use to the meds.Day 7 I got hammered and there was really nothing but exhaustion the last week but only when I overexerted myself physically.My friends are true friends and my family doesn't have a choice in the matter so they tolerate me.I live alone except for 2 kittens so I don't have anyone to snap at unless I go looking for them.I'm usually irritable when I'm not on the meds so they're kind of use to it.Today I'm not even going to lock the doors or worry about answering the phone.They will do it just out of the instinct to survive.

Dragons don't live forever

slats1056 · « **Reply #45 on:** October 31, 2015, 11:01:54 am »

Hey Bill, Let's just leave at Morning then! We'll save the Good for later!! Yea I had a pretty rough time during most of Tx. and continuing post EOT to some degree, But that is to be expected in My case. Boy do I have some stories!!!! The things I put Myself through are pretty crazy. BTW, not trying to diminish all the good these Meds. are doing. I have to keep reminding Myself and others that this is just My experience and not everyones!!!! There are many out there who have had little to no Sxs. while on Tx. or post Tx. Boy do I envy them.
Btw, the forums are a good place for venting & clearing Your Mind. Just be watchful not to accidentally or otherwise aim it at an individual. Keep it ambiguous and let it out. I personally struggle with that as I have no filter between My Brain and My mouth or fingers!!LMFAO.!

BillT · « **Reply #46 on:** October 31, 2015, 11:27:29 am »

I know what you mean.There's a huge disconnect between my brain and everything else right now and I know it.I think the thing with venting here is that we actually think about we're going to say instead of just going off,so we play nice.As I think about it the other reason we play nice here is that somebody is probably more irritable than we are.LOL

HEY YOU KIDS,GET OFF MY LAWN!!!

BillT · « **Reply #47 on:** October 31, 2015, 04:32:10 pm »

BTW Happy Halloween everyone.A friend just invited me to a party.I wish I could figure out how to make a costume and go as my least favorite side effect,or a dead virus.I wonder what a cure looks like?

JAF · « **Reply #48 on:** October 31, 2015, 09:37:42 pm »

Hey Cal. We haven't officially held a conversation but I have read a lot of your comments. I want to thank all of you for putting your experiences on this forum. It's already taught me so much. I'm mid way through week 3 and I thank god every day that so far there's been no major sides. My biggest concern is anemia. But I'll cross that bridge if and when I come to it. Can't wait to get my 4 week labs done! Again thanks to everyone for the info, moral support and laughs.

Cal · « **Reply #49 on:** November 01, 2015, 12:42:28 am »

Hi Jaf,
Yes lets have a chat now then! The only sxs for you sound like the riba ones, the anaemia leaves you quite unwell, but not everyone goes there. Having recently increased ribas and in aneamiasville now, I can say don't over do it. Listen to your body. Low HB knocks you around so look after yourself. You are doing well though to be nearly 4 weeks! Good on you!

Cal

Cal · « **Reply #50 on:** November 01, 2015, 12:48:25 am »

Tommy,
I hope that virtual conga line is growing! You're in charge of music. It sucks that you had a rough time so far, but things will get better. Time passing and all that......
Just clear that virus and life will be worth a few post tx sxs. You'll sort them all eventually.
I saw on the news last night that Texas is flooding real bad. Hope you're ok where you are. I was reading on another thread about your cabin. It sounds just like on the movies.

Cal

Cal · « **Reply #51 on:** November 01, 2015, 12:49:39 am »

Bill,
I'm in permanent state of riba rage. Everyone tip toes around me. That or I'm bursting into tears. Cal

slats1056 · « **Reply #52 on:** November 01, 2015, 01:19:09 am »

Cal, CABIN?

? I wish , Got an old slide in camper I took off & put on blocks a long time ago. It serves the purpose though. It gets Me out of the elements when needed. Spend most of the time outside anyway, unless it's raining or freezing. The wind blows big time in the winter!! It reminds Me of parts of Your country with different critters

. It's God country for sure, but it's two steps from Hell in the summer time. I love it though. Plus, it belongs to Me & My little brother. It's almost 200 acres with little to no improvements. Pretty much the same as it has been for 100 plus Years. With the exception of being surrounded by much larger ranches that are being high fenced for commercial hunting. If it were up to Me, I would tear them all down

.

THE STARS AT NIGHT SHINE BIG AND BRIGHT!!!DEEP IN THE HEART OF TEXAS!!!!!!!

:

Cal · « **Reply #53 on:** November 01, 2015, 02:54:14 am »

Tommy,
You can't spoil my delusion! It's a log cabin on a lake on 200 acres. No hunting allowed. Beautiful country, no snakes or creepies. Crisp clean air and hammocks! Yes I've got it all stored in my tiny little mind.
Sounds like a Heppers Ranch to me! Cal hehe

(You're very lucky)

BillT · « **Reply #54 on:** November 01, 2015, 07:48:13 am »

Good morning all,
Maybe it's me but because I haven't seen anyone post about it.Has anyone had any trouble with their vision since taking the meds?I noticed since I've started that sometimes I can't focus.It's not bad just a bit annoying so I'm curious if anyone else has had it happen.Thanks.

JAF · « **Reply #55 on:** November 01, 2015, 10:08:55 am »

Cal thanks for the info. Even though I know every person's experience is different, in my opinion, there's nothing like hearing it from someone who's walked that road. I'm thrilled with how it's going 4 days into week 3. Very optimistic but I'm ready to fight through anything that may come. I realize now that for the past year or so I was experiencing symptoms of the virus (shaking, mood swings, brain fog, etc) so I already learned to cope with a lot of it. Since tx I find myself wanting to go off on people for the littlest thing. Growing up I had a temper but learned how to control it as an adult. It would take something major to set me off, where now I find myself wanting to go off on someone for holding up a line. I have to take a minute to breathe and turn away. I was joking with my daughter yesterday and said if I do lose it I can at least blame it on the meds. Safest thing to do is stay home when I have those days. It does mess with your head at times

JAF · « **Reply #56 on:** November 01, 2015, 10:18:15 am »

Bill I've noticed my vision getting worse even before treatment. I just figured it was age related. Since tx it's gotten worse. I've been meaning to make an eye doctor appointment but now I'm wondering if they prescribe glasses now what will happen if some of it clears EOT? Insurance won't pay for new glasses. Another good question for my doctor. Thanks

BillT · « **Reply #57 on:** November 01, 2015, 11:36:38 am »

I completely understand the temper thing Jaf.The vision thing was just something I noticed.I wear reading glasses but it seems to be worse right now for my distance.Interesting.

https://www.youtube.com/watch?v=u4ZgVRJ-H8U

Else · « **Reply #58 on:** November 01, 2015, 11:44:22 am »

Good one, Bill. I see that Moe is dealing well with his Riba side-effects.

Cal · « **Reply #59 on:** November 01, 2015, 05:06:04 pm »

Hi Bill,
Yes my vision was blurred on and off in the early part if tx but has returned to normal. It was very frustrating, I had to use a magnifying glass to read labels and things. Cal

Cal · « **Reply #60 on:** November 01, 2015, 05:08:09 pm »

Hi Jaf,
Yes that's RIBA rage for you! Best stay away from people. I hurt my hand punching the kitchen bench. Just keep sharp objects hidden! Cal $:-\$

Cal · « **Reply #61 on:** November 01, 2015, 05:09:50 pm »

Good one bill,
Moe on ribas ! He he. Cal

BillT · « **Reply #62 on:** November 01, 2015, 06:01:55 pm »

I wonder how many have gotten the vision thing and never connected it to the meds,or even if it is connected.I was trying to watch a movie and it was like I was wearing 3D glasses.

Get away from me.Don't make me go Moe on you.

Cindy1955 · « **Reply #63 on:** November 01, 2015, 07:12:48 pm »

Interesting about the vision. I had a cataract repaired in my left eye about 1 1/2 year ago..now my right eye has gotten really bad. It does seem worse since I started treatment 6 weeks in. Have appointment with eye doctor tomorrow, will see what he says. Think I can blame a cataract on HepC? Other eye doctor told me it was too much time in the sun with no sunglasses. Who knows. Will hopefully find out tomorrow.

JAF · « **Reply #64 on:** November 01, 2015, 07:35:25 pm »

Cal - If I get myself in trouble I'll say "sorry officer, it's riba rage". Think they'll even know what I'm talking about? I'm glad you said your eye sight got a little better. Hey, I'm going to be 57 this month so a lot of things like brain fog and poor vision come with getting older, but this seemed to come on faster than normal age progression.

Else - wow 3 denials. I'm so happy you didn't give up and finally got approved. What is wrong in this world when they have meds to help people but make them go through so much BS before treating them. I don't know anyone who would go through this treatment on a whim. It really makes me wonder how many people never get the chance to be treated. It makes me sad but I feel so blessed at the same time.

Bill - I can always count on you for a laugh! Trust me, there are days when I want to do just like Moe and go slap happy on people. I live with my daughter and she's the one who keeps me sane because she's always laughing. I warned both my kids before starting treatment that I might lose my shit for no reason at times. They looked at me like "seriously mom?" My son said "I've been watching you do that for 30 years!" They love to laugh WITH me and AT me. My son is getting married in July so I definitely have to kill this and be SVR12 by mid April.

I overdid it today. I was feeling fine the past 2 days so I tackled a lot of what I put off. Glad it's almost done. But for now I'm just going to chill and catch up on shows.

Peaceful night to all

BillT · « **Reply #65 on:** November 01, 2015, 07:55:16 pm »

Cindy,
Let us know what the eye doctor says.I'm going to talk to mine in 2 weeks and see what they say to.

Else,Cali,and Jaf,
There's instructional videos everywhere,you just need to know where to look for them.

Philadelphia · « **Reply #66 on:** November 02, 2015, 06:39:01 am »

I think my vision was a little blurrier than normal. And I think it's better now.

JAF · « **Reply #67 on:** November 02, 2015, 09:21:58 am »

Has anyone experienced or heard of irritation of the mouth while on Ribas or Sovaldi? I have no sores anywhere in my mouth but the past two mornings, the slightest bit of mouth wash made my inner cheeks sting so much. I had to rinse with water to ease it. I did read that some people get a metallic taste in their mouth or food can begin to taste different. That hasn't been a problem so far but I'm wondering if that's where I'm heading. I'm finally eating well again and I'm hoping just switching to a milder mouth wash will fix it. Any ideas?

gnatcatcher · « **Reply #68 on:** November 02, 2015, 09:46:33 am »

JAF, no stinging inner cheeks (except when I accidentally included some cheek when I chomped down on a bite of sandwich), but I did experience the metallic taste -- just during days 50-53 of Harvoni (which includes Sovaldi) Tx. As others mentioned, the metallic taste was only near the throat. That meant I could still enjoy the taste of food where it entered my mouth, before it acquired the metallic taste. After day 53, no more metallic taste!
I don't know what mouth wash you use, but when I tried the heavy-duty Listerine (the one with strong plaque-prevention claims), my lips and tongue would start to go numb 28 seconds into the 30 seconds I was supposed to have the stuff in my mouth. That didn't happen with a Crest mouth wash or with Listerine Zero.
Speaking of plaque, the last 4-5 years before Harvoni Tx, my mouth was producing copious amounts of quickly-hardening plaque, despite conscientious dental hygiene. Post-Tx, I seem to be making a lot less plaque, and it seems easier to remove. I'll know for sure in mid-January when my dentist does my next cleaning.

gnatcatcher · « **Reply #69 on:** November 02, 2015, 09:56:18 am »

Quote from: Cal on October 16, 2015, 06:46:19 pm

. . . It like drinking rat poison. . . .

Cal, I just read that old post of yours with your description of interferon. Ironically, I've been ingesting rat poison daily for nearly 16 years! Warfarin (brand name Coumadin) was invented to poison rats by preventing their blood from clotting, so that they would bleed to death. It was only later that they realized those of us whose blood has the bad habit of clotting much too easily could benefit from a low dose of rat poison. Maybe I should change my moniker from Gnatty to Ratty.

KimInTheForest · « **Reply #70 on:** November 02, 2015, 02:32:47 pm »

Quote from: JAF on November 02, 2015, 09:21:58 am

Has anyone experienced or heard of irritation of the mouth while on Ribas or Sovaldi? I have no sores anywhere in my mouth but the past two mornings, the slightest bit of mouth wash made my inner cheeks sting so much. I had to rinse with water to ease it. I did read that some people get a metallic taste in their mouth or food can begin to taste different. That hasn't been a problem so far but I'm wondering if that's where I'm heading. I'm finally eating well again and I'm hoping just switching to a milder mouth wash will fix it. Any ideas?

You might want to google oral lichen planus. It seems to be associated with ribavirin. Can involve mouth sores or soreness or burning or I think metallic taste. I experienced a mild case of something that fit that bill while on tx (harvoni+riba). I had a burning tip of tongue and metallic taste. Best remedy is to double down on oral hygiene with frequent brushing/flossing. And rinse your mouth with warm salt water. Swoosh it in your mouth for as long as you can. Oral lichen planus requires an acid environment.

good luck!
kim

Else · « **Reply #71 on:** November 02, 2015, 02:55:49 pm »

I was diagnosed with oral lichen planus by an oral surgeon before I ever went to see my hepatologist. Well-documented link between this condition and HCV infection. In a very general way, it's the result of a stressed immune system and is expected to resolve post-treatment.

In fact, it was one of the things that my independent medical review doctor singled out as being a compelling reason for overturning the "not medically necessary" decision by my insurance.

Interesting you should mention "tip of tongue" soreness during treatment. Me too. Definitely different than the lichen planus lesions. Hyper-taste sensitivity as well. For example, a stick of bland string cheese was inexplicably almost too salty to eat. Weird.

Good idea on the strict adherence to excellent oral hygiene. Just make sure your warm saltwater rinse isn't too strong (1/2 tsp per cup of warm water) or than can cause irritation in and of itself.

KimInTheForest · « **Reply #72 on:** November 02, 2015, 03:02:43 pm »

Quote from: Else on November 02, 2015, 02:55:49 pm

Interesting you should mention "tip of tongue" soreness during treatment. Me too. Definitely different than the lichen planus lesions. Hyper-taste sensitivity as well. For example, a stick of bland string cheese was inexplicably almost too salty to eat. Weird.

Me too, Else! I became hyper-sensitive to sweet and salty on tx. Could not eat apples or bananas or most other fruit while on tx because they tasted grotesquely sweet. Could not eat cheese because it tasted too salty. Fruit and cheese are two of my staple foods, so that contributed to my malnutrition & weight loss during tx.

Yes, oral lichen planus does seem to be associated with HCV itself. I had never experienced it before, tho. But like you say, it's the result of a stressed immune system. So probably the added stress of the drugs (I think the ribavirin in particular) tipped me over the brink while on tx.

best,
kim

JAF · « **Reply #73 on:** November 02, 2015, 03:40:18 pm »

Gnatty thanks for the reply. I thought it might be the Listerine because when I changed from Crest cinnamon flavor I did notice it was stronger. I haven't truest Listerine Zero. The burning only happened the last 2 days and daughter brought up a good point too. I've mentioned before I just got my appetite back around 3 days into treatment. It could be the fact that I went from eating fruits, salads, soups and everything light to wolfing down heavier foods like bagels, hard rolls, pizza, etc. I may have irritated my mouth because I'm back to eating rougher foods.

Kim and Else - I have noticed more stubborn plaque when flossing even pre-tx. Never even considered it might be virus or treatment related. The other day I was trying to remove it and I made my gums bleed. Luckily I have to go for a cleaning soon too. Half my bottom teeth are fake and I want to keep as many of my real ones healthy and strong. I have to look up this oral health side effect. Might have to do the salt and warm water rinses throughout the day, but I do love the fresh feeling of mouthwash before I leave the house.
And yes although sweets don't bother me I have noticed salty things that I once loved have a less appealing taste now. Food changes are nothing compared to dealing with the more serious side effects.

Thanks for the feedback.

JAF · « **Reply #74 on:** November 02, 2015, 04:23:07 pm »

Thank you again everyone. Just googled lichen planus. It is also one of the skin rashes we are prone to. Back in the late 80s/ early 90s I developed a shiny, scaly rash on both ankles and part of my shin. The dermatologist thought it was psoriasis. It flared up a few times then disappeared. I thought the cream the doctor gave me worked. Till this day I still have a small patch on my outer left ankle but it never turned red or itched since. But it is exactly as described in the article.

Just goes to show how many symptoms we might have had that we never related to the virus. And back then, most doctors weren't aware either.

A breakfast of protein, whole or multi grains and probiotics is suggested. I don't eat eggs, yogurt or oatmeal which were all suggested so it looks like I'll be eating a lot of Cheerios with blueberries, strawberries and bananas. I'm also going to buy some protein powder and make smoothies in the morning.

This forum is a wealth of information!! Thanks again

Cal · « **Reply #75 on:** November 02, 2015, 04:51:00 pm »

Hi Jaf,

I have lichen planus too! This virus has a lot to up answer for? Smoothies are a great idea, especially if you do lose your appetite.

I think you'll find your brain fog gets better too. I don think it's age related. The Doctors who know nothing about HCV like to attribute our plethora of symptoms to getting older!

cal

Else · « **Reply #76 on:** November 02, 2015, 04:53:05 pm »

Hey Jaf,

HCV causes systemic damage, that is almost without question. Almost. The problem is sussing out correlation from causation. Insurance companies want to see direct causation because it greatly reduces what they are on the hook for.

Even some specialists (my hepatologist for one) are reluctant to go on record that extrahepatic manifestation are relevant. One on hand, I understand. They want to adhere to sound science and causation and correlation are not the same thing. Their professional credibility is on the line.

On the other hand, I cannot wait for the day when HCV is no longer considered solely a "liver disease". It does a disservice to too many people.

Else · « **Reply #77 on:** November 02, 2015, 04:56:06 pm »

Quote from: Cal on November 02, 2015, 04:51:00 pm

The Doctors who know nothing about HCV like to attribute our plethora of symptoms to getting older! cal

Oy!!! Sick of that. It's such a cop out when a doc can't bring themselves to say "I don't know."

gnatcatcher · « **Reply #78 on:** November 02, 2015, 07:29:50 pm »

Or maybe it's human nature. A lot of us attributed our fatigue to getting older. History shows that humans nearly always try to explain things in terms of what they already understand.

Cal · « **Reply #79 on:** November 02, 2015, 08:13:51 pm »

Hi Gnatty,
My brother died of one of the co morbidities. Now I have the same thing he died from. At the Q and A I spoke very vehemently about HCV being an all body illness and people are dying and disabled by the co morbidities before their livers can catch up. That is you can be F0 and be unable to function.
There are lots of publications about the co morbidities. I never once put any of my illnesses down to aging. The Doctors did, I was 40 when I got my first auto immune problem.
I am lucky to have trained my Medicos giving them publications on it. I worked in Medical Research so I had access to lots of information. I am a natural born researcher like a dog with a bone when it comes to this subject. So sorry if I come of a bit riba ragey!
But yes people do have the need to explain and justify and if your Doctors aren't picking up on your suffering then of course you'll find a away to validate it.
It's a crying shame. Though your Mayo Clinic is pretty hot shot with the research. Cal

gnatcatcher · « **Reply #80 on:** November 02, 2015, 08:45:23 pm »

Cal, I agree that we need to educate doctors whenever necessary, and you and I have to do that to avoid catastrophe. (I'm very sorry you lost your brother and find yourself in the same boat.) But I sympathize with the reality that doctors seeing patients all day and putting in overtime for emergencies can't keep up with the huge amount of new medical research results on every possible ailment they may see in their practice. We humans (doctors included) often don't realize that we don't know something -- we assume we know based on past experience unless our hypothesis becomes untenable. My reaction was to Else's post (calling it a cop out), not yours.
I definitely have my own bias. If a doctor has a huge ego, then I tend to regard a misdiagnosis as malfeasance. But if the doctor is a genuinely caring human being, then I tend to regard a misdiagnosis as a typical human failing.
No, you didn't come across as riba ragey. Thanks for your post. -Gnatty

Else · « **Reply #81 on:** November 02, 2015, 11:19:12 pm »

Gnatty, my reaction came from the all too recent experience (July) of having a neurologist not be willing to look at or even take the article I had brought with me regarding peripheral neuropathy and HCV. "I'm not familiar with that journal". It was the same one Marianne has recently posted links to.

Instead I was given a nerve conductivity test which confirmed my PN. His conclusion? Age. I am 53. Three appointments: consultation, test and follow-up totaling over $1500.00. To what end?

And the reason I went to him was that my hepatologist deferred diagnosis of a CNS disorder to a neurologist. He in turn deferred the diagnosis of HCV related symptoms to my hepatologist.

Hence my touchiness about doctors offhandedly assigning things to age. This summer was insane. No, I don't expect doctors to be super-human or omniscient. But I do expect them to try. Otherwise what's the point in going to a specialist? I can shrug things off to old age myself.

Cal · « **Reply #82 on:** November 03, 2015, 02:33:22 am »

Quote from: gnatcatcher on November 02, 2015, 08:45:23 pm

Cal, I agree that we need to educate doctors whenever necessary, and you and I have to do that to avoid catastrophe. (I'm very sorry you lost your brother and find yourself in the same boat.) But I sympathize with the reality that doctors seeing patients all day and putting in overtime for emergencies can't keep up with the huge amount of new medical research results on every possible ailment they may see in their practice. We humans (doctors included) often don't realize that we don't know something -- we assume we know based on past experience unless our hypothesis becomes untenable. My reaction was to Else's post (calling it a cop out), not yours.
I definitely have my own bias. If a doctor has a huge ego, then I tend to regard a misdiagnosis as malfeasance. But if the doctor is a genuinely caring human being, then I tend to regard a misdiagnosis as a typical human failing.
No, you didn't come across as riba ragey. Thanks for your post. -Gnatty

Gnatty,
I am riba ragery. I just scared my husband and two sons. They are well aware of riba rage and understand but I hate being a Jackal and Hyde person. It makes me feel out of control. I hate hurting those I love.

I actually don't expect GP's to be in the know but I expect the Professors and Specialists I see to know EVERYTHING NEW. That's what their paid for. In any Profession there is continuing ongoing professional development. I have to in my profession. My patients and peers expect it.

The humble GP I agree has so little time and are so overworked, they have to know a little about a lot and refer to specialists when out of their knowledge sphere. Cal

Cal · « **Reply #83 on:** November 03, 2015, 02:34:11 am »

Gnatty,
Thank you for your kind words about my dearest brother. Cal

BillT · « **Reply #84 on:** November 03, 2015, 02:38:16 am »

I had a great discussion with my doctor this past Friday.The reason being was the information all of us pass around on this forum.I can't really fault the doctors(of course some think they're God but that's besides the point).The HCV manifests itself in as many different ways as we have individual reactions to these meds.The thing every one of us have over our doctors is that we're the one's with the disease.Let's face it,over and over again as we talk here we realize that things we never thought of as being virus related seem to be.Many times we thought that it was something only we had or were going through until we realize a lot of us are having the same problems.We're just scratching the surface of understanding all of this and the meds and we have a long way to go yet.

BillT · « **Reply #85 on:** November 03, 2015, 02:41:24 am »

Cali,
You strike me as a more Jack the Ripper type.

Cal · « **Reply #86 on:** November 03, 2015, 02:42:47 am »

Hi Else,
I had the Nerve Conductivity test for PN too. My Neuro said you have to tx for your HCV, because this is HCV related. He also said that my Organic Brain Damage may be reversible if I txed. He wrote to my Gastro. I was lucky I didn't have to wave my HCV flag at all with him.
He knew me though from when I had a slight stroke (TIA) which he also believed was HCV related. There are publications on this as well.

Sorry you had a hard time. That Publication from Journal of Immunology was eaten up by my Doctors here. My GP scanned it onto my file. That dude sounds like a right royal pratt. Cal

Cal · « **Reply #87 on:** November 03, 2015, 02:45:29 am »

Bill,
You've got me pegged. I told my family I would kill them all, but I'm too sick to! That's Jack the Riba Ripper! Snatched from the jaws of death once again because I'm too tired! hehe. Cal

BillT · « **Reply #88 on:** November 03, 2015, 02:50:50 am »

I'm having one of those nights that sleep isn't in the cards.I can't really call it insomnia because I have so much energy and I'm not tired.

Cal · « **Reply #89 on:** November 03, 2015, 02:54:52 am »

Bill,
A bit over revved perhaps? I get like that too. Sleep is impossible. Have you got anything to take? Cal

BillT · « **Reply #90 on:** November 03, 2015, 02:59:30 am »

I do Cal.I just hate taking any more drugs than I have to.I'm retired so it really doesn't matter when I sleep or wake,or eat.Being up for my meds is the only thing that matters.I wonder if any of my lady friends are up?

Cal · « **Reply #91 on:** November 03, 2015, 03:02:25 am »

Bill,
If you are thinking of lady friends then you are doing really well my friend! Hehe Cal

BillT · « **Reply #92 on:** November 03, 2015, 03:04:54 am »

Cali,
I'd rather deal with you and the Riba rage than waking one of them at 3 am.lol

gnatcatcher · « **Reply #93 on:** November 03, 2015, 03:07:27 am »

Else, thank you for your explanation. Yes, if I had had your experience, I would have been disinclined to cut the doc any slack.
Cal, alas, I have been a professor (fortunately in music, so it was hard to hurt anyone physically except perhaps in the eardrums if I performed badly). The everyday needs of hundreds of students would leave me totally wiped out by week's end. Often the only chance I had to learn anything new in my field was when we faculty were interviewing candidates for an opening.
BillT, your "The thing every one of us have over our doctors is that we're the one's with the disease" is well put. I went to enough duds over the years that now unless I'm in an emergency situation I "fire" any doctor who doesn't understand the concept of doctor-patient partnership: his/her medical knowledge coupled with my knowledge of this one unique body.
Thanks, everybody. Great discussion. -Gnatty
P.S. This is the golden hour: Aussies awake, North American Westerners not yet asleep, BillT with insomnia, and me having gotten up to pee in the middle of the night.

BillT · « **Reply #94 on:** November 03, 2015, 03:18:29 am »

Gnatty and Cali,
I think because we're the one's on the inside looking out we have more perspective on what's going on.They can read all they want but unless they've been there it's hard for them to truly understand our situation.Lucinda is a great example of someone who can relate to both sides of the coin.I do agree with you in that I won't be dictated to by a doctor and it has to be a 2 way working relationship.If not it doesn't work.I was thinking about the vision problem today and it got me wondering if maybe it could be the meds working on the virus that are in the eyes.Any thoughts?

gnatcatcher · « **Reply #95 on:** November 03, 2015, 03:36:41 am »

Hmm, interesting hypothesis, Bill. Hep C bugs in my eyes -- just like real gnats, except on the inside. I dunno why I had always pictured those viral varmints circulating only from the neck down.

BillT · « **Reply #96 on:** November 03, 2015, 03:55:10 am »

Gnatty,
The virus is going to be anywhere there's blood and the meds will kill it anywhere they find it.I'm also curious about something else and I'd like to hear for those that went through it.I was on the interferon and riba in 2004 and I don't remember the riba rage at all.I'm beginning to think it's these new drugs and the riba combination causing it and the interactions between them.Any thought's?

gnatcatcher · « **Reply #97 on:** November 03, 2015, 07:47:06 am »

Bill, i was saying you made me realize how silly and incomplete my picture had been. Although I don't have personal experience pre-Harvoni, I did read one of Lucinda Porter's books written to help Hep C'ers through the old treatments -- even back then, riba caused a lot of people to experience extreme emotions.

BillT · « **Reply #98 on:** November 03, 2015, 08:11:24 am »

Hi Gnatty,
I remember a lot of terrible things about that treatment but for the life of me I can't remember that.The VA actually set us up with mental health before we started the treatments because they knew what was about to happen to us.How odd.

Philadelphia · « **Reply #99 on:** November 03, 2015, 08:14:12 am »

Aren't WE your lady friends Bill? Lol

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