Hep C Discussion Forum

wmlj1960 · Moderator

RE: Approaching SVR-24-Junction very soon

Bills · Guru

You've been around the block Mike, Your a real high ranking warrior in this dragon-slaying army

These are concerns and the reason I haven't taken the lexapro yet. I definitely have clinical depression. Wellbutirn / bupropion has been my go to for about 7 years. I pretty sure it's keeping me awake and I do take it in the morning around 7am. I tried messing around with doses myself taking 300mgs one day 150mgs the next to minimize the intake It became a pain to track and wondered whether that was helping or hurting. I haven't taken anything else yet till I discuss in person with my liver docs. Psyc doc thinks I a need serotonin boost combined with an anti-anxiety med. I don't disagree. We talked Cymbalta / Zoloft and some others. I am very forward about expressing how does this interact with mixing and metabolizing by liver. With the lovinox my hands are tied till we fully discuss all this Nov 4th. The Xifaxin is a concern i was noticing my AST / ALT where climbing as I finnished havoni and I was pretty concerned the numbers werent coming down. That's another reason I stopped taking it. I had some other blood drawn last week now AST 36 and ALT 31 are back in range so your right on that one Tig Bilirubin still up 1.2 is within normal I'm at 2.2. My liver doc actually suggested Xifaxin / lactose also over a year ago but I never went for the Xifaxin A Gastro doc in NJ Who also does liver. He had a lot to say about HE and convinced me. My NY doc reminded me he prescribed it a year before so I didn't see any red flags. But Now I don't know. I'll see in NOV It's always amazing how much we learn here. Thank you gentlemen

BillS

bubble · Senior Member

Maybe a trip to SanFran-Psycho for something to cure the Riba Rage. It's raining this time of year in Seattle. Lol.

biggrin

Tig · Admin

TOOT TONE?? All we need now is for Brownie to get started on her Funny of the Day thread!

I would definitely check on that contraindication Bill. Good find Mike. I had a doc try to load me up on high dose Venlafaxine during/after treatment. I refused because it is so hard on the liver. Some of these people simply don't look for these interactions. A good pharmacist should catch it, but you can't count on them to either.

wmlj1960 · Moderator

Bills wrote:
I'll be adding Lexapro to welbutiren I cant spell to save my life. But to many things at once is not a good idea for me.

Is this suggested by your doctor? Co-administration of Lexapro (escitalopram) with Wellbutrin (bupropion) raises a major drug interaction concern that both your doctor and pharmacist should be aware of. More information here:

Interactions between your selected drugs, bupropion escitalopram

I Have taken both Welbutrin and Lexapro in the past for depression but never co-administered. More recently, last year while also taking Sov/Ribavirin, I was taking another SSRI, Zoloft (sertraline), but that was discontinued in November and I did not replace it with any other antidepressant due to other physical health concerns including liver cirrhosis. My psychiatrist monitored my mental health afterwards and eventually approved me not taking any antidepressant. I'm still doing well with only occasional moderate depression but nothing considered serious enough to jeopardize my liver health by taking antidepressant medications again. But that's just me. Every case is different.

Your Toot - Tone is just too funny Bill. I gotta get me one of those!

Bills · Guru

HaHa That's good Tig

But You might get just as much from a air freshener in the slot. this is the real deal.

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

I'm almost 58 but F--ts make me laugh I guess i'll never grow up My son bought me a f--t machine for Christmas one year. It beats the hell out Ties Shirts Socks a wallet? We used it at work for like 2 weeks what a riot. just Google f__t machine. Youll never be the same. We may need a new thread to continue this.

Ok Seriously I'm hearing I have to walk a lot and drink water a lot I've used the Apple Cider Vinegar ( the pure one BARRS aka the mother of ACV) Just an ounce or so diluted in water they have all kinds of healthy drinks you can make with it. Once / twice a day. For now I'll keep it simple. Make changes in what I'll eat healthier stuff avoid sugar, salt, cookies cake processed meat. I have to the meds orders and make sure I get strait with that first. to be sure doing the hard stuff will be OK The Lovinox, i want to go back on Xifaxin, I'll be adding Lexapro to welbutiren I cant spell to save my life. But to many things at once is not a good idea for me. But it's time to go to men's room and shoot up. I'm at work sometimes I need to stay late so I won't be home for it and then try to get in that walk. The green mile.

BS out

bubble · Senior Member

Hi Bill, Long time. This is what I am at a crossroads with also. Our life styles have changed with age. The dust has settled. Those Echo's. Determining your health with your age and it's toll is hard to figure. Is this due to the Dragon or old age? I am glad you are up and up on the front line with your concerns.

I would look into natural liver detox food/stuff if you can. Sounds like your liver is pushing alot out, and your circulatory system has problems. The clots can come from alot of factors. Give the shots time. Hereditary varicose veins run in my family. Your portal vein could be reacting to a new liver. This could be an adjustment stage. I no longer have elevated BP. You have a good Medical center. I know you will use it wisely and effectivley. Stay practiced at your new life style and BE healthy in every way now. Glad to here from you my friend. Please dont make yourself scarce. Your not whinning in any way on here.

(I upped the font size so I can see again) Old Age!!! biggrin

Scruffy · Guru

Gracie wrote:
I may need one of those too.... Eating a lot of cabbage soup trying to lose the Harvoni 15 ...

Howard Stern had a "contest" on his show some years ago. This petite little lady won much to every ones amazement. They asked her what her formula was, she answered "I ate half a head of boiled cabbage just before the show". Just thought I'd share that here. biggrin

Gracie · Guru

I may need one of those too.... Eating a lot of cabbage soup trying to lose the Harvoni 15 ... biggrin

wmlj1960 · Moderator

Tig56 wrote:
Flatulence Mitigation Device

That's perfect. Now I can throw away the sugar container and sweeten everything with lactulose from now on without getting caught. lol biggrin

Tig · Admin

Okay, I hope you both take this with the humor it's intended!! Thought you might get a laugh. I found the answer and you can take it with you! biggrin biggrin biggrin

Flatulence Mitigation Device

(No endorsement intended)

wmlj1960 · Moderator

Hi Bill.

It does take time and some days are better than others. Today is a good example and pretty much a non-productive waist for me, but I'm okay with that because I'm staying compliant with my meds, staying adequately hydrated, not eating junk or drinking alcohol. That's all I can manage today and it's good enough and much better than many days in my past.

Lactulose does give me gas, but not so bad that it causes embarrassment. Maybe that's because I don't work in an office and because I am more interested in my health than I am in not offending others sense of smell. It will cause me abdominal discomfort if I try to hold it back from passing so I rarely do.

My higher power is always late, IMO, too Bill. I get a lesson in patience on a daily basis and I'm actually getting a little better at having some of it lately. Enjoy your walk. My new leg had to go back to the leg repair shop so I'm sidelined from walking until next week. blankstare

Bills · Guru

Hi Tig

You just jogged my brain fogged Memory about the Ammonia levels they did mention that. I'm gonna call doctor and ask about going back on the Xifaxin while on Lovinox. I think what I'm saying I know and knew deep down these things will not just go away. I just got really pissed off and down on myself. As I do look at a lot of us here we are compromised. And don't bounce back so easy anymore. I was just hoping I could get back up and move on. like thinking to myself when I get cured I'll do that or want to go there etc. I know I'm not alone in this dilemma but I am in good company. And a lot sharp people like you. All of you are right I just gotta keep up the fight. My higher power has always been late and experience tells me He's always right on time. I'm going to get in my car and do a mile. Duh I mean drive the place I'll walk. Thanks Everyone

BillS

Tig · Admin

Hi Bill,

Have you had your Ammonia levels checked lately? It is usually elevated when HE comes into play. I'm happy to say that with SVR, liver function does improve and it's the cirrhotic liver that is responsible for the HE. Improve liver function and so will many other things. As you've already realized, it took decades for this to affect us like it has, it will take a long time in many cases to see the improvements we all wish would happen overnight. The positive is that improvement can now be part of the equation, where before SVR it wasn't. We have to be happy for each victory, be it small or large. They all count towards the success we are all striving to achieve.

Here's a Medscape article on HE. Very technical, but one of the best descriptions I've found.

Hepatic Encephalopathy

Bills · Guru

Wow

Such nice things and encouragement. Al though that's all true about whats going on. I was in a bad place in my head, but I'm taking a turn. You guys are the best and do lift my spirits. Over all I Get it and knew it deep down there are many of us who will still be paying the price for careless youth or even just bad luck, and too many decades of having Hep C. I've been so luck I thought maybe I'd miss this bullet too.

Seeing boxes of needles as you say Gracie I cried too. These needles are twice the size of Interferon at least. It's not the size it's that this could be a long term commitment. I'm coming to realize I gotta just fight again. Any you guys are right here. Thinking about your battles and continued conditions I'm a little ashamed to be whining like this. Being clear of the Hep C makes a huge difference in my ability to combat any of this stuff. BTW I still need the EOT 24 blood test in Nov to be undetected to uncross my fingers. But I'm pretty sure I'm done.

The blood clots are the number 1 And being more active is a must. I walked 2 miles yesterday and going to aim for at lest a mile a day, get up to 2 daily. No drinking for 7 years, As you say Mike I'm seeing I got to get moving circulate my blood.

The annual ultra sound did pick up the blood clot , Then an MRI to really see it , then precaution check for varices potential danger with that , then ban the varices, (I've had them done three times now) then the follow up endoscope. Over all I know my NY doctor's have had my best interest and ALWAYS been there to help. When was young and care free I never thought how important having good health care would be. I think I'm about over a million in cost ( to my insurance ) since I started this 7 years ago.

I'm not to sure i have (H E) but know for sure I have a real problem concentrating. How do you get diagnosed? I took Xifaxin for a few months and couldn't really be sure if it was helping. I didn't do the lactulose and Xifaxin together When I tried lactuose the gasy side affect was too much (not so much from me but everyone else didn't like it.) At home I could blame the Dog or my Wife. LOL I work in an office and could never see my self just making believe it wasn't me. But seriously How can I be sure ( as in diagnosed I have it? ) The doc who suggested it just said it works or it don't. If it works then you have it, then use it maybe a lifetime drug? I don't want a life time commitment to such a strong antibiotic, I've heard that some infections become immune to the antibiotic's? And they have to keep switching. Does that apply to this HE bacteria? / Germ? / infection? and yeah it is expensive. I Got a coupon = No copay till 2016 I didn't ask what happens then cause I stopped. It's just so much crap to deal with different doc's and tracing who prescribed what. We are in a night mare with all this insurance stuff.

I'd like to get more info from you Mike on your experience with HE if that's OK I nights well do it all while I still have insurance LOL.

Thank you all This all really helps.

Bill S

dharmabum · Senior Member

Thanks Tig; cute little mice cuddled in for their nightly sleep study.

Hilarious, except when you catch those little germ-ridden rodents pooping all over your basement and chewing the wiring up in your new Subaru...

Tig · Admin

Hey Bill,

You're one of our Warrior commanders around here, reach around a grab a dragon or two and stomp the stuff out of them. It does wonders for that warrior spirit and drive! You have prevailed through a lot of adversity brother, and you're going to get past this too. It's easy to get down and discouraged, when you're feeling like that, you need to check in here and get your daily dose of encouragement! We're just "full of it", you know that!

I know from days past, that you won't let this slow you down. You're a smart man and I know as we speak, you're educating yourself. It won't be long and you'll know more than the rest. Armed with that knowledge, I know you're going prevail over any of these issues standing in your way. Stay on top of it and don't let your confidence wane...

I enjoyed the article on sleep Joann, thanks for the link. After reading it though, I can't get the picture out of my mind of a bunch of sleepy mice laying around, with all those EEG wires stuck to their little heads! ZZZZzzzzz...... smile

dharmabum · Senior Member

Hi Bill,

I have missed you and as great as it is to hear from you, I'm sorry that you are back with this unfortunate news. I am giving myself a year withinin which to feel better. It took many decades of infection for me to get this sick; and at least I am pretty sure now that the virus is gone. That's something to hold on to, right?

Hepatic encephalopathy was something that I touched upon and stopped to consider, but ruled it out. I don't read this stuff anymore...

So, I have very bad days, not so bad days, and good days - one day at a time is my motto. I find that on the days I feel pretty good, I have always had a great (long) night's sleep. I do not know if anyone has posted this NPR article on sleep and the human brain, but it rings true for me.

http://www.npr.org/sections/health-shots/2013/10/18/236211811/brains-sweep-themselves-clean-of-toxins-during-sleep

Give yourself time, my friend,

J

mallani · Guru

Hi Bill,

After all you went through, I guess you expected life after SVR to improve. Buddy, it just means we have cleared the virus.

Your risk of HCC has decreased dramatically, but remember you still should have 6 monthly screening.

Your portal hypertension will resolve, but you obviously have varices so that may take some time.

Your risk of liver failure has been reduced and hopefully the thrombosis is just an incidental finding.

Stay positive mate. Imagine what life would be like if you hadn't achieved SVR, and had gone through 2 years of horrible treatment for nothing.

Keep us posted. We're hear to listen. Cheers.

disappointed · Member

Bill, with you help I am beginning to realize that I am not alone in this struggle. Hang in there friend, I need you. Doug

Penelope PePod · Senior Member

Bill,

I'm sad to hear you're still facing challenges. But you're a fighter, a first rank dragon slayer, and you'll tackle each challenge, one by one, and beat it into submission! smile Seriously, my thoughts and prayers are with you as you work through these issues.

Penny

coolheat · Senior Member

Bill, I was wondering about you. When I first came to the train you were kind and helpful. Also sorry you are having a more difficult time with all your hep c and related health issues. I am sending you the best I can. They say our good thoughts, like prayers, can help others as well as ourselves. The Best to all of us, one and all. Tiny Tim knew what he was saying. I read the Fri. night darts thread about a month ago. Never would have dreamed that's what it was about. But if I end up a non-responder, I will consider anything. I don't want to go back where I was when I found this site and the year and a half before that. My life is better. Again, my Best to you, Marsha

wmlj1960 · Moderator

No excuse needed. We are always glad to see you here Bill.

You may be expecting a little too much too quick from your body. Look at the record. You and I are lucky to be alive after all our bodies have been through. After so many years of Hep C beating on us and especially your history of failed treatments with very powerful, not so body friendly medications, we are going to have to be very patient. Even after all is said and done, getting old hasn't taken a moments break through all of the turmoil either.

I was given Lovenox after surgery I had on my feet last November in order to enhance blood flow to those extremities to promote healing / reduce clotting chances. I was still on it when I had my leg amputation in Jan. and they kept me on it until... In March my left foot was mostly healed and my right foot was gone so I quit the shots. I could see no reason to stay on it but then I didn't have a blood clotting issue in my portal vein. Blood clots have the potential to cause a big problem. If I would have had to stay on it I would have. I had no Sx's from the shots to speak of and the shots into fatty areas didn't bother me either.

When I was diagnosed with HE 1-2014 I was started on lactulose and Xifaxan, quit alcohol, and started taking care of my body. Other than a temporary span of diarrhea last year while I was on Sov/Riba treatment, I haven't had any Sx's to speak of with either medication and my HE symptoms have improved. HE does get better when treated and when the cause is addressed. I'll keep taking both medications as long as needed as long as my insurance keeps paying the outrageous cost of Xifaxin.

The way I see it, we're no spring chickens anymore. Our bodies have been through a lot of crap. But we could be much worse off like a whole bunch of other people with our same health problems. I'm very lucky to have access to healthcare that I could never afford on my own. I feel like crap some days but at least I feel and I want to keep feeling for as long as I can. The medicine is there to help me make it a while longer on this planet and it's up to me to trudge through the tough spots. For me, a lot of it is in my attitude. I can't afford to let reasonable pain and discomfort take me out.

Be sure to remember the basics Bill. A little thing like staying adequately hydrated makes a lot of difference. No table salt or high sodium foods or sugary crap. Stay away from the fast food joints and fried foods. Don't over exercise but get some. These guidelines are good to follow any day, not just during treatment. Take it a day at a time, be patient, and watch that you don't set expectations too high.

As Gracie said, "You have fought a great fight and won a major battle". Give yourself a break.

I hope this helps a little. Just trying to help you with what helps me. smile

-- Edited by wmlj1960 on Saturday 24th of October 2015 03:02:39 AM

Gracie · Guru

Oh Bill... Sounds like you are having a time. It must have been awful to have to start shots again. I HATED shots and remember one night bursting out in tears because I just didn't want to give myself another one. I have, in the past three years, been a major volunteer and fundraiser for the Diabetes Association for that very reason. My empathy for the thousands of needles and the disease that just keeps on giving.

You are a relatively early SVR person. The liver, especially a cirrhotic one will take years to heal, not weeks. Look at how many years it's been doing the damage. At least some of your liver will regenerate over time, and hopefully the varices will stop being a problem soon too.

I really hope each month brings more improvements and that eventually you start to feel better as you heal. You have fought a great fight and won a major battle. The battle continues for you, and it will for us as well. We're a tough lot though, and my money's on us!

Bills · Guru

Maybe this is not a good excuse for not checking in but it is what is

I guess my journey continues

The Harvoni train was very exciting and seeing so many of usmaking it to End Of Treatment and feel the freedom. I and began to think about what to do now.

For me I now look at this journey as a stop I did to get to SVR 12 and need to reach SVR 24. I have no reason to think I relapsed passed SVR 12 or that I will at SVR24 My gut tells me that is over. After all this I figured this is nothing Ill sit back and look out the window.

My problem is why dont I feel better? So I gave it time. Had some follow up testing and discussions. But I was getting very depressed and somewhat angry that I should be better or getting better. So as I start looking to improve my quality of life. He checks the variscies and bands 3 and an ultra sound finds a blood clot in the hepatic portal vein and another somewhere else nearby.

So this means Injection blood thinners

LOVENOX 2 nice big shots a-day in my fat. It feels like the Trial and the Incivek all over again. It doesnt talk about horrible side effects. But I start on 4-5 months to clear blood clots. Maybe longer How long? Maybe forever. Its just the fact that as I try to get free theres always something.

Before that I wanted an answer to my soft stools dilemma . Which led to a possibility of combined condition causing Brain Fog I didnt mention it before because I didnt want to start any hysteria here I dont think I have it The condition that affects people with advanced cirrhosis Hepatic Encephalopathy https://en.wikipedia.org/wiki/Hepatic_encephalopathy

So ( Im sort of warning everyone not to run to the doc and say you have this ) You may not and unless to you cant write a sentence ( or remember you even have car never mind where you parked it ) you probably dont have it.

It seems to me the brain fog they speak about is much worse than what we may be experiencing so Please dont panic. ( this is the Bill S laymens definition and opinion ) Its a bacteria or something in your digestive system that the cirrhotic liver doesnt clear it causes soft stools and it floats in the blood and affects the brain under the sever condition you would be way off the Brain fog chart For example I couldnt write this if I had it bad. So again dont panic. They offer 2 things one is a liquid that clears the bacteria ( But you will fart like a slow leaking tire all day) the other is an antibiotic Xifaxin? = Zi Fax in ? 1500$ 60 pills my co-pay was $250.00 but there was a NO COPAY coupon Dont know how long it was for 2 pills a-day I wasnt sure if it was working and decided to stop no real change for me. My conclusion is I dont have it or Its not that bad. I was told if it works it would only improve a little and MAYBE stop it from getting worse. You will have to take it the rest of life? Im not ready for lifetime drugs like that so I quit and No big change so I have brain fog. Why? I cant think of any other paths to go down.

I guess Ill just see what kind of reaction this gets and what else is going on with all you guys I apologize for backing out without notice.

BillS

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