Welcome, Guest. Please login or register.
October 15, 2024, 02:36:00 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 55133
  • Total Topics: 4851
  • Online Today: 224
  • Online Ever: 3061
  • (September 25, 2024, 11:40:40 pm)
Users Online
Users: 0
Guests: 157
Total: 157

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin  (Read 95019 times)

0 Members and 1 Guest are viewing this topic.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #100 on: September 28, 2014, 10:05:12 pm »
I have read everywhere and also been told by numerous doctors that viral load is not a predictor of severity in hepc only one means of monitoring treatment.

Offline feralhorse

  • Member
  • Posts: 8
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #101 on: September 28, 2014, 10:12:04 pm »
Oh. Thanks. Idk any of this...so is the ribvarin why I feel so badly or did some other opportunistic disease creep in? Im unaccustomed to being ill. I havent even had a cold in probably 15 years. I feel like im in trouble now, but then again last time I had a cold I just knew it was bubonic plague or something ya know. Im not accustomed to feeling ill.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #102 on: September 28, 2014, 10:22:31 pm »
Give it time………like the pharm info said it takes up to 120 days for your body to clear all the meds.  I wouldn't drink any alcohol during that time either.  Give your body a chance to get back to normal as it has been messed with big time.  Try to be good to it to help the process along is my advice.

Offline feralhorse

  • Member
  • Posts: 8
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #103 on: September 28, 2014, 10:31:14 pm »
Yes. Thanks. No alcohol for certain. That was a weekend of wine with a woman I met who came and went in 72 hours...I do not like the feeling generally. It was a moment. Im going to doctor tomorrow.  Maybe they can do something to ease me. Definitely not right. Again I did not begin feeling ill at all until 4 weeks after treatment.  Thanks for the input. I have had about two hours sleep since I woke saturday morning. Im going to find a boring movie and try to drift off. I work on a horse ranch and am going to be there at sunup. Blessings all, gn.

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #104 on: September 29, 2014, 01:11:14 am »
HEY FERALHORSE! [I think I bet on you at the race track awhile back,  50.00 to win,,,   I LOST  FERAL,, what the hell?]  oh and yes SOUTHERNERS are idiots[[[  I am laughing good now] one of my marriages I married a girl from Jacksonville Arkansas, she had 3 teeth [I had her remove them,,, much beeter and she could hardly fit in my whheelbarrel so that's why I bought a payloader[big ass scoop on that] and then we truly became in love ,until one day I went out to check the horses[she rode a retired klidesdale,budwiser horse,, payloader came in handy there I must say, saddeling up etc.] and we lived on this big mt. in the Ozarks and I mean big!  well we had an outhouse and I was just getting around to making it bigger due to all the fresh bacon she ate and I noticed it was GONE!! yup,,, over the mountain she went, all I could see was toilet paper and weightloss magazines [and three Russell stover order forms] hanging from various trees,, I gave it my best shot after I took a whiz in that direction[wind was right] and then I saddled up and headed down the canyon about 150 yards,,, ooo that smell ,kinda surrounds you,, you know that song from those idiots called lynard skinerd?   but nope,, no where to be seen so I and my stallion [black of course] joyfully headed back to the ranch and I went to bed,,, I had never slept so well and I even got to sleep in the queen size bed. woke up ,giddy uped my ass to the bank with the title,, got good money for the ranch,grabbed a few things ,jumped on my Harley[it was in storage for years because she liked to ride but after two incidents of her and my saddle bags getting wrapped up around my frame I gave that up for awhile,, I even put a special shock system on it from an old chevy I had]  and headed for NY and I haven't seen her since,,dam idiot.. I did get a call from the metro game forest wanting for me to pay for many trees taken out and 3 bears and a moose were trampled on her way down I guess, plus the cost of the outhouse removal,, and there trying to get us [well just me I hope] for killing game out of season. friggin rednecks ain't got no cents of humor.  they think now she may have been one of those bears she killed cause theres no meat left and they say one bear didn't have any teeth,so there you have it, I never met a southerner that wasn't a redneck idiot!!!  ''just'' Willie g   PS    of coursethat was a made up story except the ranch and the outhouse[it did go for a ride once with a friend in it,, with a little push,, good moonshine we made  lots of laughs and she is a beautiful girl [all my wives have been  and great people but when a woman says GET OUT , that use to be a plus for me as well as them, and im the type of guy that doesn't look back especially when on my iron horse[54 panhead back then,suicide clutch with a pbr tap handle as a shifter and I had a bull horn on each side of my helmet[[now that's TRUE]  IM from the country originally ,, upstate and I mean upstate new York but I left when I was 17, ended up south for years [and they had the nerve to say I talked funny] and years and I have the same hat as Stevie ray Vaughn and the old gentleman that made that one made one for one of the good old boys from LYNARD SKINARD and I roadied for Leon Russel [he was here a few months back, played with him [guitar vocals] on the side plus I hung out with Greg [my daughter LITTLEMOON was named after the song SWEET MELISSA,, even met cher that crazy woman[cant imagine anyone not liking heroine back then,,of course that's not funny and my friend I could go on and on,,,, sounds like you need to see a horse dr, [[you know im right]  shhhh theres Michigan fans looking in your windows right now! I sent em ,,yup   I do get around,,  now GIDDY UP 

Offline feralhorse

  • Member
  • Posts: 8
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #105 on: September 29, 2014, 01:40:50 am »
All I can say is id really like to meetcha.. no sense lookin in the winders. Cmon in and sit a spell. I gotta rabbit ear 12 beside me id sure like to aquaint ya with. Yup. Curious tho. How does your fat ass hold that blubber up to piss?..hadnt seen yor pecker in what, 30 years.
 how, cmon in and meet tj. That my rabbit ear 12. We been all over arkansas. Alwayz a faithful gal but she gets riled by the likes of youins' and spits lead. Heck she can flat cut a feller in half. But maybe yuins' uhl get along whilst I make some sweet tea...always hospitable I am. Tj yull hafta deal with.
God willin bless ya.
PS. I aint puttin in a good word for ya. She done scene yor post and looks a mite anxious. Better go tend her. A coat a ohl always perks her up. And when I tellher shes a gonna meetcha soon I know shell wanna b shiny. Always likes the look in a fellers eye when they figer might outa have done different.

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #106 on: September 29, 2014, 02:16:29 am »
Hi feralhorse,
169,000 viral load is actually a very low number. The thing about hepc is the viral load does not matter, it is the damage to the liver and other complications that matter. Damage can happen if a load is way high or way low. No damage can happen if a load is High or low. Hepc is unpredictable and it is capable of changing to defend itself. It transforms to a different variant on its own, it morfs to survive. Attacking it quick and powerful is the best way, but some forms of the variants are unknown and survive. I hate hepc, lived with it 44 years and just getting treatment. You had it less time, with a lower load and have substancial damage. I had 3 million load and it took 43 years to obtain stage 3 liver damage. So all are different, but we need to get rid of the dam thing asap.

Offline DesertGuy

  • Member
  • Posts: 134
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #107 on: September 29, 2014, 09:40:37 am »
Hello------havn't replied in a while----had to find the bottom of that hole.
Reading feralhorse's post made me once again feel the need to bitch about the medical profession. I'm in week 13--I see my Dr this week. Saw him at week 8 and my blood work results were totally screwed up. He gave me results from week 4 at week 8--blamed the hosp where it was drawn. They posted same results twice??
He couldn't tell the diff??
took 2 n1/2 weeks of calling the office to get my viral load---he  said undetectable--I'll believe it when I see it on paper.  Also at last visit was he was aware of my attitude and sent me to a shrink to see if I am stable enough to continue.
The shrink was a piece of shit. I tell the truth and mentioned my drug experiences in the military 40 years ago. He centered on this and started calling me an abuser.
Told him he should be smart enough to tell the difference in experimentation and abuse. Also told him I still play with guns--so am I an abuser. Told me he was giving me a new antidepressant that also helped men with ED. Spoke more about my  ejaculations than what the pill would do for my attitude.
So-----if shrinks are like this --driving home I told myself to pull my head out of my ass---and cure my attitude myself. Not even worried about the virus anymore.
So pissed off at this point with the lack of communication from my doctor that I realize I'm on my own. 11 more weeks of pills--drug companies send them to me --they don't even communicate with dr.---3 more visits with him(he doesn't even call me by name)--and then I'm out the door
Cured then??--probably won't know--I'll be 60 then--unemployed and broke--other things to worry about--so spending another six months in dr's offices won't be on my list. See you in a month or so.

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #108 on: September 29, 2014, 11:00:40 am »
Desertguy,
Glad your talking again, you and Willie G have company now with feralhorse.
You country guys crack me up with your poetry in your thoughts, sounds like a country music song. Well you seem to be undetected after all, good news and prayer does work. The Dr made a mistake , for once in your favor. My Dr. does not communicate at all, he does not remember my situation until he looks in the computer.
He tells me not to take too much time with questions cause he has other patients, like I'm not a patient or something. Hell, I saw the bill, he gets around $600.00 dollars to "talk" to me for 15 minutes. Guess what, you have to take charge of your health.
I learned this years ago. I am doing things during my 24 week treatment that I won't post about, cause it stirs controversy, and while on this ribavirin I don't feel like debating. I'm undetected and going to finish the ride, I have a planned trip to Disneyland on the final week of treatment, I may stop the ribavirin by then so I can enjoy myself.
Hey Willie,
I had a 45cc knucklehead 1951 Three wheeler in the 60's. It was a meter maid bike, with suicide clutch, distributor spark control on the left, a big knob shifter on the right. What a gas to drive. Your the only person I have heard that drove a suicide clutch Harley, so you and I know what a real bike is. When I get healed and feeling the oats, I may get a new fangled DynaGlide, the golden years are coming.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #109 on: September 29, 2014, 12:42:09 pm »
Hi Feralhorse and everyone on this forum,
I thought about splitting this topic, because Feralhorse's situation is so unique that I didn't want it to get lost. However, it looks like you are getting great feedback and people are weighing in from all sides. My 2-cents:
1) As was stated by another forum member, viral load doesn't mean anything other than either you have hep C or you don't. Viral load almost always spikes when it comes back
2) Viral load of <15  is as low as the test goes - it is as close to zero as the lab can get. When the virus returned, it spiked your ALT/AST, as mentioned by Rainbowray
3) No judgement here - but the wine, regardless of the amount - not a good idea. Romance, on the other hand - a great idea.
4) You are showing signs of serious liver disease. You need medical help, and I see you have an upcoming appt. Looks like you and your doc are working on trust issues - try to get these worked out or get a new doc ASAP - you will be in a long term relationship with your doc, and best to work with someone you fee is on your side.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #110 on: September 29, 2014, 06:27:40 pm »
You guys definitely tell it like it is - too funny.  So Willieg did you roadie for Leon Russell at any of the Willie Nelson Picnics?  If so, I may have seen you there. ha!

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #111 on: September 30, 2014, 11:00:13 am »
Been catching up on some of the recent posts. I am getting close to the end S/R after today 16 left!  It'll be a miricle if I don't get fired in the next few days. My sales production is almost nil. I have been taking a half dose of some generic antidepressant, still tears trickled down my cheek last night as I lay in the dark hating the feel of being in my own skin. I'm tired if saying anything to my husband, he just gives me a blank look anyway so I font know why I try. I am worried about post treatment too.  And I'm bummed that gourmet wine dinners and a stiff drink with a girlfriend or two are likely not going to be part of my lifestyle anymore.  But more than anything I don't want to be known as a sick old lady.  My daughter will be 14 soon, I adopted her when I was 40 and she has been the most rewarding part of my journey so far. She's never been easy but I want to be there for her as long as I can and I need to be a source of strength and inspiration for all my kids, I have 2 step sons who are in their 20's that I was blessed with when they were 2 & 4. Well, thanks for letting me pour my heart out. I still have hair although my scalp constantly itches. I'm back to being confused to the point of embarrassment and if I had the money I'd go get a massage or something indulgent but as it is I feel guilty for the money and bills that have started to pile up due to ll these labs, meds an co-pays.
Blessings to all your health thanks again for being here.
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #112 on: September 30, 2014, 11:13:26 am »
HepC53,
Please post after you are done about a month. I want to know how quickly the issues with the ribavirin leave. I have 11 weeks left, it is not an easy ride.

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #113 on: September 30, 2014, 03:22:01 pm »
HEY RAY, hell ya, pick up a GLIDER, dam good comfortable machine,, get a used one, much cheaper as you know already,, heck tons of people get BIKES today and find out they like their cars better or take one slip that scares the hell out of them[and partner on back, shes the one that makes the decisions lol,,] lotta good deals, hope hep thing is still going well,, later brother  ps  those were the days, those were the days, ''just'' willie g

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #114 on: September 30, 2014, 03:27:59 pm »
hey FERLINEhorse, shine that nobber right on up,,  now giddy up little doggie ,,, hope everything is going well  as far as treatment goes, and trust me, you don't want to meet me,, waste of time and energy,,  hang in there kid,,, ''just'' willie g lol 

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #115 on: September 30, 2014, 03:51:56 pm »
Love the banter, Ray, Willie, FeralHorse. Thank you!  It's beautiful here in Indy and I'm sitting in this basement office and you all have me giggling and remembering that life is too short and it's time to go stir it up. Peace!
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #116 on: September 30, 2014, 05:23:17 pm »
Oh and Desert Guy, glad to hear from you too!  Were neck in neck for treatment so I'm real curious to hear your progress. My kid just came in from fishing all summer in Alaska and hooked me up with some healthy tasty eats and treats. Nothing like a freezer full of fresh AK fish.
Now RainbowRay you've got me ready to go get some bloodwork elsewhere. I've never met with anyone but my nurse practitioner who is awesome snd so is her nurse but...  Yea right, I wsnt print outs of my labs. What if this dies come back snd bite me. Further more if you can do Disney, well I deserve to go home to Seattle & see my family, I might just Mickey Mouse around while I'm there too.
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #117 on: September 30, 2014, 05:56:05 pm »
I love the city of Seattle.

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #118 on: September 30, 2014, 06:06:09 pm »
HEY HEP C, we are definitely stirring it up lol good to hear from you and DESRTGUY has returned with a vengeance and together with all our twists and turns we are going to ''GET ER DONE''    ''Just'' Willie g

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #119 on: October 11, 2014, 10:04:25 pm »
Just got back the half way blood work and all is good.  LFTs all in normal range, hemoglob, platlets are only a .5 below normal and the oddest thing, my kidney function is better than ever at  >90 which is normal kidney function and for the last two years I was at 77 which is mildly decreased kidney function.  Has anyone ever heard of this?  Maybe treating the virus is actually helping my kidneys, did not know if hepc did affect kidneys or not. However, my Bun/Crea was high at 35.0 and normal rations should be 6-25,not shure what that means, but, will look it up. Just finished week 7 today and start week 8 tomorrow.  Will have blood work again nov 5 then a final one with viral load Dec 12 which will be one month after treatment, then again 6 months later.  I am getting nervous now. ha.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #120 on: October 12, 2014, 11:33:57 pm »
Fantastic Tess - yes, that does happen, albeit not often - congratulations!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #121 on: October 18, 2014, 12:03:40 pm »
Day one without S/R. Have my first post treatment appointment Tuesday. Had labs Thursday, waiting on results. Are there withdrawal symptoms I can anticipate? 
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #122 on: October 18, 2014, 12:32:42 pm »
Keep us posted as I am starting week 9 of 12 now and getting very anxious.

Offline bepper

  • Member
  • Posts: 30
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #123 on: October 20, 2014, 11:05:49 am »
Hello,
My name is Ray, seems there are knowledgeable people here so I am posting for some support. I have been with Hepc for over forty years, and the symptoms are finally getting to me. Perhiphial Neuropathy, fatigue, some liver pain. 3 fibrosis bridging. I was always reluctant for Medical treatment, and took every recommended herb for liver and hepc thru the years. The virus is finally doing its thing. Now I am confident to try Solvadi/ribavirin even though I would rather have the Olysio/solvaldi.
Maybe some people with experience can comment when I start treatment starting Monday July 7. got the ok today, with the assistance I will pay $60.00 for 24 weeks treatment. I have BlueShield california coverage.  I am Gen 1B 2,700.000 viral count. I will post status as I go. My Dr. says I do not need to take any tests until 4 weeks out.
Well, thanks for reading.
Hello Ray,
Your post has me very interested. I've been diagnosed/disabled since 1998 with Idiopathic Peripheral Neuropathy, (unknown cause) by two of the best neurologists in my area. I was also told in the 90's by the best liver Dr that I never had to worry about HepC again, that is was gone, and here I sit, all these years later, on treatment. My pain management Dr also scratches his head on my chronic pain cause. I have severe burning in my sciatic nerve, non stop for 17+ years. Can you tell me where you found this info? I am more than interested, as you can imagine. Any info would be so appreciated!

Thanks for your post!
Hope you're having a pain (less) day,
bepper
Dx: 1985 non a-non b Hep
Dx: over next 20 yrs "your body has cleared the virus on it's own, never worry again"

July 2014 Dx: Hep C GT3
ALANINE AMINOTRANSFE   0 - 33 U/L   72   H
ASPARTATE AMINOTRANS   0 - 32 U/L   88   H
HCV QUANTITATIVE viral load   5678036

Started Sol/Rib Oct 9, 2014
UD @ week 4 of TX
Completed tx 3/20/15

Hubby: Successfully tx in 2005
June 2014 Re-dx GT3
Cirrhosis of liver without mention of alcohol
Hepatocellular carcinoma

Liver transplant 3/2015

New life for both!?

Offline bwelsh

  • Member
  • Posts: 27
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #124 on: October 20, 2014, 11:14:14 am »
Hi ya'll. I just completed sovaldi ribvarin, 12 weeks, geno 2. I did not really notice any side effect the first 4 weeks. As a matter of fact blood test at week 4 showed viral load below 15. I guess my point here will be caution. My white cells, red cells, plateletts all dropped and I became anemic.  Gradually I had an anemic cough. All this was explained away as ribvarin side effects. Now for the meat. I have been done with treat ment 4 weeks. Wbc is still dropping, ast alt are higher than before treatment, hepc viral load is double from before treatment. I have developed skin infection and ulcers in my mouth. Low grade fever, insomnia, muscle spasms, and doctors are not able to explain this. I called a pharmacist where the meds were provided and they too are at a loss. I have an appointment october 8, this being sept. 28. I my doctor did order another round of blood tests which included a pathology report. The facility I go to posts results on a website which I just got this morning. Pancytopenia, which means all three counts described in blood count were decreased. Ok. I get that, but after a month? Doc said alcohol use, but that is not true. I do not drink. A new word was in report: neutropenia. I looked this one up and it is scary. Along with pathologist recomendation for bone marrow testing. Other words were normochromatic anemia, pancytopenia,  thrombocytopenia.  As best I can understand these, except neutropenia are more or less explained by ribvarin. But after a month today I feel more ill everyday. I am 54 and otherwise in very good shape. I work on a horse ranch much the same as I did 30 years ago. Now I feel like hammered crap. I am positive this has to do with the treatment. My hep c was aquired in the mid 70's from blood transfusion. My viral load was only 89,000 give or take when I began treatment, was only 69,000 when diagnosed in 1999. After 12 weeks of treatment it is 162,000.
Any ideas?
Good luck to everyone, just thought maybe this is something to be aware of and maybe someone else has not responded well to treatment?

My Mom did not respond well to treatment, in fact, she has died.  She has the same issues you did... platelets dropping, insomnia, it was horrible.  They blew her off and said it wasn't the medicine.  She never got better.  She was bleeding from her mouth and nose at times and needed platelet transfusions and plasma.  She had a stroke two weeks ago and died one week from today.

What can we do to alert the public this drug is not safe?  We must do something.
« Last Edit: October 20, 2014, 01:48:09 pm by iana5252 »

Offline bepper

  • Member
  • Posts: 30
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #125 on: October 20, 2014, 11:15:20 am »
Ray, I just found the info myself on the Mayo clinic website. I am so shocked right now I am speechless. I must investigate more.
These boards are a Godsend. I would've gone to my grave waiting on a Dr to connect the two diagnoses and all I had to do was read a post from a fellow sufferer. In all my research over the years, I never came across this info, so maybe it is newish to the medical community as well.
Oh, that's right, I didn't know I had HepC.

Thanks again Ray.
bepper

Is it ironic that spell check don't even know peripheral neuropathy?
Dx: 1985 non a-non b Hep
Dx: over next 20 yrs "your body has cleared the virus on it's own, never worry again"

July 2014 Dx: Hep C GT3
ALANINE AMINOTRANSFE   0 - 33 U/L   72   H
ASPARTATE AMINOTRANS   0 - 32 U/L   88   H
HCV QUANTITATIVE viral load   5678036

Started Sol/Rib Oct 9, 2014
UD @ week 4 of TX
Completed tx 3/20/15

Hubby: Successfully tx in 2005
June 2014 Re-dx GT3
Cirrhosis of liver without mention of alcohol
Hepatocellular carcinoma

Liver transplant 3/2015

New life for both!?

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #126 on: October 20, 2014, 11:35:47 am »
Hi bepper,
Just saw your posts,
In my case the Rheumatoid Factor lab tests showed a high number, so my neurologist suggested to see a Rheumatoid Arthritis Dr. I have not gone yet because I found out
that my Cryocrit count was also High from my Hepatologist labs. I discovered this leads to  Cryoglobulinemia which is a clotting issue caused by the cryocrits gathering in the blood due to clashes with the immune system. I have a autoimmune response on my nerves in the feet from it, hence the neuropothy. You may also have a pinched nerve that is getting more damaged by not getting treatment. Have you seen a chiropractor, it helps me cause my back nerve is slightly pinched and adds to the nerve issues in the feet.
Getting rid of the hepc virus is suppose to rid the neuropothy, per my wife's Arthritis Dr.  The cryrocrit count should drop when the hepc is gone.
There are different types of Cryoglobulinemia if this is what you have. I don't have the websites, but just Google "Cryocrit in Cryoglobulinemia"
In short, you can find the info, get the correct labs ordered to get to the bottom of this. I do most my research, cause the Drs. don't know everything, and don't have time to tell you.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #127 on: October 20, 2014, 11:36:38 am »
Bepper (and Ray) -
My dear friend and fellow hep C advocate Alan Franciscus has suffered (and I mean suffered) from peripheral neuropathy (PN) for years. He went through 3 hep C treatments, and the last one cured him. The PN is permanent, but not worsening since treatment. He wrote this: http://hcvadvocate.org/hepatitis/factsheets_pdf/pn.pdf
Here is something more scholarly: http://jnnp.bmj.com/content/74/9/1267.full
Note: be sure you are checked for cryoglobulinemia. The cryo gives you a highh treatment priority - PN should too. Anyone with PN who wants treatment should fight any denial of treatment.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #128 on: October 20, 2014, 12:09:22 pm »
Hepper and Lucinda,
I don't have diabetes, and the  Cryoglobulinemia issue itself is not bad as I have no blood flow problems. The stupid Cryocrits themselves and my immune system have teamed up to get to my nerves, literally.   Hepc is the cause, because the cryocrits go into the blood from the livers reaction to damage from the hepc.
In conclusion, Hepc sucks. I have 8 weeks left of treatment. A food medicine called metanx can help with the symptoms, it is mostly concentrated B-12 which can help in restoring nerve damage.

Offline bepper

  • Member
  • Posts: 30
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #129 on: October 20, 2014, 12:15:07 pm »
The pinched nerve was ruled out very early when I was ref. to the neurosurgeon as the first step. He was insistent that even though the MRI didn't show a pinched nerve, he was certain I needed a discectomy. Even the second opinion Dr agreed. My HMO approved, so under the knife I went 10/98 only to have the surgeon come out and tell my husband there was in fact no pinched nerve so he sewed me back up. 6 weeks later, my incision swelled to golf ball size. Same surgeon was about to fill out the form to return me to work (ignoring my complaints of severe sciatic burning)when I asked him to at least check the incision. He asked if I wanted it drained. I don't know, I'm not the Dr. So as he drains it, a horrific headache, like hit in the head with a hammer headache follows. He gave a disgusted sigh and said I was leaking spinal fluid from a dura puncture, I would need surgery to repair it. Off to wait for the OR to be free. I waited in that bed till midnight, seeing the surgeon in the corner of my eye holding his head pissed cuz he wanted to go home.

Somewhere along the line I remember getting blood patches that never took.
The following spring I got out of the HMO, went PPO to see the neurologist I wanted to see from the get go. He said that was no puncture, he knicked you. A puncture doesn't require glue and stitches to repair.
That neuro also did tons of blood work that were sent out East that left me a several thousand dollar balance. I don't remember what happened with that bill, but as far as the results, the neuro didn't find anything there. I was diagnosed with a ..can't think of the test, emg? nerve conduction test. Through that test, I was approved for SSDI without a hearing, so I had confirmation that I did in fact, have something serious, I wasn't crazy as that surgeon suggested.

Thanks for the reply Ray, I figured you were (somehow) slaving away at work.
bep
Dx: 1985 non a-non b Hep
Dx: over next 20 yrs "your body has cleared the virus on it's own, never worry again"

July 2014 Dx: Hep C GT3
ALANINE AMINOTRANSFE   0 - 33 U/L   72   H
ASPARTATE AMINOTRANS   0 - 32 U/L   88   H
HCV QUANTITATIVE viral load   5678036

Started Sol/Rib Oct 9, 2014
UD @ week 4 of TX
Completed tx 3/20/15

Hubby: Successfully tx in 2005
June 2014 Re-dx GT3
Cirrhosis of liver without mention of alcohol
Hepatocellular carcinoma

Liver transplant 3/2015

New life for both!?

Offline bepper

  • Member
  • Posts: 30
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #130 on: October 20, 2014, 12:54:12 pm »
Lucinda,

Thank you so much for your informative links. It's very technical for a lay person like me, although before I became disabled with PN, I worked in health insurance claims processing for over ten years and had never heard of PN or saw it on a bill until I was diagnosed. Diagnosing alone took almost two years.

I can't imagine the PN getting better at this point. I was ref. to pain management years ago, when pain clinics where new to the world and have been treating the pain for 15 years with opiates. My pain Dr has suggested I get a morphine pump, but I just can't imagine having an implant with possible severe complications being that I can't control it.
The only thing I've been denied were the extensive labs my neurologist ran years ago. Apparently, the lab he used was not part of any network (unknown to me) I also refused a nerve biopsy as I just wasn't up for having any more cutting on something that wouldn't matter in the end, plus having a possible numb spot on my ankle. God bless the patients that did get biopsied.

I'm sorry about your friend, but always have a distant compassion for anyone when I hear they suffer PN. Darn, even spell check doesn't know Peripheral Neuropathy! I can hardly believe my eyes this morning, my brain is on overload with all this new info.I have bookmarked the links you send for further reading, later.
 
Thank you to your apparent dedication to this board, these board are so important and necessary for patients.

bepper
Dx: 1985 non a-non b Hep
Dx: over next 20 yrs "your body has cleared the virus on it's own, never worry again"

July 2014 Dx: Hep C GT3
ALANINE AMINOTRANSFE   0 - 33 U/L   72   H
ASPARTATE AMINOTRANS   0 - 32 U/L   88   H
HCV QUANTITATIVE viral load   5678036

Started Sol/Rib Oct 9, 2014
UD @ week 4 of TX
Completed tx 3/20/15

Hubby: Successfully tx in 2005
June 2014 Re-dx GT3
Cirrhosis of liver without mention of alcohol
Hepatocellular carcinoma

Liver transplant 3/2015

New life for both!?

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #131 on: October 20, 2014, 01:03:05 pm »
Bepper - I will add 2 things:
1) He was also diagnosed with type 2 diabetes, and keeping that in control is critical for PN.
2) He is dedicated to a very intense fitness routine that has kept him strong and active. He walks 12K-15K steps a day and works out at the gym.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #132 on: October 20, 2014, 01:04:50 pm »
Post treatment-Day 3 off S/R. So far no real side effects, less itching, my face is a little flaky but may not be related, appetite is back with a vengeance dammit!  I still woke every few hours but slept until 9am Saturday so that was awesome. I see the Nurse Practitioner tomorrow for post treatment whatever - another co-pay I guess. Anyway if you can all be so generous to suggest questions I should ask I'd really appreciate it. Thank you :D
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #133 on: October 26, 2014, 10:14:22 pm »
End of week 1 post S/R. Still waking every couple hours, seems my arthritis pain has lessened but I am having a few cramps at night and achy legs. My Nurse Practitioner said my energy would come back it's been average. I'm really focusing on my nutrition because my hemoglobin was so messed up and my fatigue was intense so with regular vitamins added protein smoothies including kale and banana hoping to kill a few challenges with one drink so to speak. Still pounding the water, regular
Exercise etc. The real discomfort has been nose soars and tonight the itching especially on my face has almost made me insane. My mind wasuch clearer for weeks but now my ability to communicate has been flailing,  loosing my thoughts again. Can't complete all my sentences. I'm hoping this is nutrition based and will remedy itself as my blood normalizes. Alas I am pleased to say that I kicked butt at a black light Zumbathon Saturday night, two hours with just a few quick water breaks and I deadheaded some mums and got a little fall planting done. I've yet to scrub my house back to it's former state but it was 70 and sunny this weekend, priorities!  Has anyone heard how Rainbow Ray & Dessert Guy are doing?  If I recall correctly they should be a few weeks post treatment.  Peace
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #134 on: October 27, 2014, 12:20:22 am »
Hi,
I still have 7 weeks, I am on the 24 week treatment, it is an experience to say the least. I won't see the Dr. till all pills are gone. Still working, don't know how I'm doing it but I do pray everyday, so it must not be me on my own.

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #135 on: October 27, 2014, 08:34:58 am »
You're right Ray!  I need to talk to the Man upstairs more frequently.   I know I'm not alone but need to talk and listen more. I get labs again Thursday. I'll post any changes. I had a miserable night last night do I may as well be heading to work too. Can't sleep anyway. Blessings.
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline zeena

  • Member
  • Posts: 114
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #136 on: October 27, 2014, 10:53:09 am »
hep c 53 we are having a very similar ride on these meds.i also had a nose infection my doc had me put mucipron or something like that in it, and the infection left. never had anything like that before.my physical body is the only thing which seems to work, and  best when the task is running or walking on the beach. mindless tasks are my comfort zone now. have to keep reminding family, 1 more month, do not expect the best from me now. i agitate easily, but i think thats more from me not being comfortable with my limited cognitive abilities. my doc wants me to come in for extra fluids iv style. under stress , which is almost always now, i dont drink enough fluids. excercise has made all the difference. without it i would be unable to work or care.Socially i feel wierd because the me people know is not awake. i just keep on putting off engagements until january. but like, FINISHING ALL THE FOOD ON YOUR PLATE and belonging to the clean plate club can be a challenge, i want to be in the I AM CURED CLUB!!!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #137 on: October 27, 2014, 11:09:05 am »
Feralhorse - Hope I can restore your non-crybaby status - viral load doesn't mean anything - there is no correlation between viral load and symptoms or disease progression. You can be sicker with 169,000 than 32 million. Just saying...

32 million? Did you feel ill? That really concerns me because I never felt ill until after treatment. 32,000,000? Mine is now only 169,000. I feel like a crybaby now compared to that.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline HepC53

  • Member
  • Posts: 58
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #138 on: October 27, 2014, 12:19:15 pm »
Thanks Zeena, a walk on the beach sounds amazing. I'm originally from Washington State and miss the sea air, it does feel so healing. Take care.
New Year for a Cure
Diagnosed May 2014
Rib/Sol 12wk July 2014
Cured January 2015
HCV Geno 2B

Offline zeena

  • Member
  • Posts: 114
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #139 on: October 27, 2014, 02:55:50 pm »
keep us posted fresh starter.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: New to Forum/Not to Hepc/Getting Solvaldi+Ribavirin
« Reply #140 on: October 27, 2014, 03:34:23 pm »
Hi Everyone,
True confessions: When a topic which was started in July gets to the end of its second page, I feel too lazy to scroll to a 3rd page. So, I decided to end this topic since Zeena posted the perfect note to end on.

If I cut anyone off, please start a new topic and we'll see you there.
Thanks.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.