The journey begins today

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LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 10/25/2014 1:46 PM (GMT -6)   
I am beginning treatment today. Honestly, scared to death at the moment. I have read a few blogs, it is helping, I applaud your courage for doing this.
I am 55yo/male/210lbs.
I found about hcv in the early 90s while giving blood at Red Cross. I have had a liver biopsy recently (and 15 years ago) with only nominal inflammation, and an ultrasound last week, which the attendant said my liver looked normal. (But typical VA, the attendant said "you don't look like you need a transplant", that's what was on the paperwork).
I never wanted to do the previous cocktail, and only recently started reading about solvaldi. I went to VA a couple of weeks ago and I am surprised that I am beginning treatment so quickly.
I am receiving drugs (riba/solvaldi) via the VA, so virtually free.
I don't have baseline info now, but will ask for all numbers Monday.
I also am type 2 diabetic, so it will be intersting to see how this treatment affects that.
I am thinking of going to medical marijuana place and get a card so I can get the oil that iplaycarver mentions, although, I could stand to lose 15-20 pounds .

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 10/25/2014 2:14 PM (GMT -6)   
Good luck, and drink enough water to help with the side's. I doubt you will be too afraid once you get started :) If you read the postings from the dragon slayers, you know all of the tricks. Check in and keep us posted. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD.
Eradicated Hep C GT3a SVR July 2012-TIPS w/HE January 2013-Transplant list Mayo AZ-July 11 2013 MELD14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 10/27/2014 1:28 AM (GMT -6)   
I read a lot about the anemia on these posts, and am wondering,if I start taking iron supplements, will this help counteract this?
I am trying to plan ahead for these side effects.

I have to admit i panicked yesterday, and did not start. I need to talk to my boss and let him know I may need some extra sick days (and let him know that my temperment may change over the next 3'months)., and may be have a friend stay over in case of whatever.
Thanks for being out there

Gift from God
Regular Member


Date Joined Oct 2014
Total Posts : 24
   Posted 10/27/2014 7:53 AM (GMT -6)   
Hello LAsurvivor,
That is great you're starting treatment, and at no cost! Amazing!
I too was concerned about starting treatment, but I am stage 2-3 my driving force was I did not want my liver to get worse, so I took the plunge.
I am on 4th week of the Sovaldi 400mg a day 1 pill, and Pegetron once a week injection 120mg. and Ribavirin 600mg -3 pills in morning and 400mg 2 pills in evening.
The worst part for me is the fatigue, after I take my clear click dose once a week, flu like symptoms and achey bones. I am experiencing Insomnia, my Dr. prescribed sleeping pills, I used a couple of times, but do not want to be dependent on them.Loss of appetite which is good for me since I weighed in at 203 :-) a little bit of nausea. Effects are different for everyone. I have taken STD for 12 wk treatment because of my job type, I have to travel across Canada and facilitate Seminars so way too demanding for me. My company told me to take time to get well.
Overall it is not as bad as I thought it would be, and it is for me only 12 wks for a cure is amazing, the gratitude keeps me positive. Feeling much better in the 4th week, so it does get better.
Good luck with your treatment! Hang in there, you can do it! :-)

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 10/27/2014 8:27 AM (GMT -6)   
Ok...being worried is fine.

But think of it like this....Hep C in the advanced stages will do you in!!!

Think of it like a chemo....would you skip a cancer treatment that was 97% effective because you were going to go bald for 3 months? Of course not. So this program may give you some flu like symptoms, or a tummy ache, or maybe make you feel tired. But you wont even go bald!!!

Tired or terminal....choose? It seems logical to me to gut it out for a few months and BE BETTER.

My Mike would have walked through fire to get on this treatment!

And now he is clear.

Woo Hoo.

Join us on the I SURVIVED HEP C side!!!

Hugs, Mama Lama

PS: I get emotional sometimes....sorry..
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 10/27/2014 5:59 PM (GMT -6)   
I appreciate the support.
I will begin this, but I have to coordinate a little bit. (get a friend to stay over, consult with boss, etc. ).
I received my numbers -
My Viral load was 2.14M; there is another RNA number which is 6.33 ( I am sure I will learn what all these numbers are soon enough)

My AST over the last 2 years has been 21.3/19/23.7/23.7
MY ALT over the last two years has been 36/27/41/40
(with sept 14 being the 1st numbers and 4/12 the last)
Hemocrits and globin was in normal range; and platelets normally low at about 135.

Just as a footnote - I had never been sick from this, to me it was just a reading on a blood test (I am lucky for sure). I am not a big drinker; only occassionlly and socially.
I voluntarilly had gone to the VA and asked about new drugs, and within 2 weeks they were prescribing them to me.
I want to do this, and rid myself of this, just need a little prep time.
I will let you all know when I start and keep you updated on my progress.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 10/27/2014 6:25 PM (GMT -6)   
The first thing you need to do is stop drinking any alcohol, period.
nullum beneficium impunitum...

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/5/2015 9:36 PM (GMT -6)   
HNY
When I first wrote in October, I psyched myself out, and failed to begin the treatment. I was going out of town for Thanksgiving, and wanted to start on Dec 1. that took me out the "group" I was in at the VA. So, my new start date is this Thursday. I have talked to my employer, and told him that I may have some lost time, and that if I have negative mood swings; that is a side effect, and that they should let me know as soon as possible, if I am not noticing it myself.

I am going to have water bottles lined up everyday.

Can you give me some suggestions as to how to combat side effects?
I think I have read that you can take antacids in the AM, to avoid upset stomachs
Obv, during the water to avoid headaches.
eat something fatty in the AM before taking meds.

Is it OK to take meds (Sol/RIBA) together at noontime with lunch (I am not a big breakfast eater); and then take the night time pill at 8 or 9 pm? (don't usually go to sleep until 12-1a) Or does the RIBA have to be at 12 hour intervals.
I will keep my eyes open for all your responses, and will try to keep a daily, or weekly diary.
This way I WONT be Down and Out in Beverly Hills.

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/5/2015 9:47 PM (GMT -6)   
Also, my provider said I should not drink soda (Coke Zero); do you think this is because of the caffeine or is there something else about soda?
If Caffeine, does that mean nothing with caffeine, like Ice Tea or Coffee (although, I rarely, if ever, drink coffee).

getcured
Regular Member


Date Joined Jan 2015
Total Posts : 64
   Posted 1/5/2015 10:15 PM (GMT -6)   
Hi LA Survivor- You need to just pick a date and begin. The anticipation is truly worse then the reality of any side effects or the potential destruction of your liver. I too put off treatment with various excuses. TODAY I began 12 weeks of sovaldi/riba. for Geno 2. I felt fine all day and even took an exercise class. I suffer from migraines so I checked to make sure I can take the drugs that I take for those (as you need to do for your diabetes) but otherwise I will use Drs advise and the experience of the generous people on this blog should I have other side effects. Its amazing how far the drugs have come and we are so blessed to be able to have the opportunity to get rid of this disease.
Two pieces of advice
-- I am also not a breakfast eater but will now eat breakfast and take the riba (for me 3 pills in am) and solvaldi in the morning and the remainder of the riba (for me 2 pills) during an EARLY dinner. Otherwise, people say that you will not be able to sleep.
-- Agree with David that you need to stop drinking completely-- at least until you are totally cleared of the disease for a time and Drs can confirm that you do not have liver damage.
Looking forward to you joining me in this journey!!

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/5/2015 10:26 PM (GMT -6)   
Thanks GC.

I will begin on Thursday, I have Appt with VA on Wednesday. (I was ready to go on Dec 1, but I was outside the rest of the group, so I had to wait for a new group). The last time, I went in, and they wanted me to start within 2 weeks, and I hadn't done any research or talked to employer about what was forthcoming.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/5/2015 10:42 PM (GMT -6)   
Hi LA....you can do this! I have never heard of restriction on Coke or soda with your treatment so this is new to me. Perhaps some of the treating group can chime in here.

What were your instructions on timing with Riba? Follow them ;) ;) ;)

You really want to rid your body of this virus, LA. I am watching what happens when a virus is not cured in time. If you had any idea what end stage liver disease is like, you would never have waited one day longer than needed to begin treatment. Seriously, just take your first dose and post here for support. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD.
Eradicated Hep C, GT3a SVR July 2012 TIPS w/HE Jan 2013 Transplant list Mayo AZ-July 11 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/6/2015 4:17 PM (GMT -6)   
Thanks TM
I will take it. I see the Nurse tomorrow. I will ask her what the timeline is for pills; and why I can drink soda. I think I was a 2 on my biopsy's (one in 2000 and another in 2012). Everything else pretty normal. I was never a heavy drinker, other than college years. So, its a non-issue to not drink really.

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/8/2015 2:03 PM (GMT -6)   
Dose 1 down. 89 days to go.
Doc said I could take pills at noon with lunch and the other riba at 8 or so with dinner.
Since I already take Unisom or Ambien to sleep, I hope there wont be any further insomnia issues.

They said my Viral Load had increased from 2.5M in October to 5M last week. So I guess its time.
The soda issue was related to carbination issues rather than caffeine. She actually said a little caffeine/coffee is good for your liver. so I will start doing that.
I have a gallon of water at my desk, and will drink a glass every hour. I will drink enough water to become a fish by the end of this.

report back soon.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/8/2015 4:21 PM (GMT -6)   
Way to go!

Thanks for the clearing up the cola drink comment. This will be over before you know it.

The water will help with sides, and you are going to do great! Starting is often the hardest part of treatment. Keep us updated as you move along. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD.
Eradicated Hep C, GT3a SVR July 2012 TIPS w/HE Jan 2013 Transplant list Mayo AZ-July 11 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

schimbare
Regular Member


Date Joined Mar 2012
Total Posts : 462
   Posted 1/8/2015 7:25 PM (GMT -6)   
Woooo Hooo! I have been reading here thinking "He's never going to start taking those pills!" LOL Like, in a funny way, not a mean way.

I don't even have C and in my mind, I'm thinking, "You'll be fine! Take the cure! The sides are not that bad!"

I am really happy for you that you started, and I am so glad the Hep C people are starting to get cured!!

Schimbare

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/8/2015 10:01 PM (GMT -6)   
Just took the second round of Riba today.
Nothing to really speak of today so far. Maybe a slight feeling that I had headache coming, but nothing ever really materialized. I have been drinking a cup of water every hour. My goal is to drink a gallon a day.
I can only hope and pray that every day will be like this (HAHA).
Thanks for your comments above, all appreciated.

I remember reading someones blog and he had a Med Marijuana card, and used it, often.
While I don't really do "that" medicine; it sounded like a good idea. Maybe this weekend I will find a "provider" and get a card. Might as well have SOME fun.

getcured
Regular Member


Date Joined Jan 2015
Total Posts : 64
   Posted 1/8/2015 10:53 PM (GMT -6)   
Congrats on starting LA survivor!!!
You and I are on same path (Although if you are in LA it is lots warmer then here on the east coast!!)
Both Geno 2/VL 5 mil., started treatment this week and headache only real side effect so far (some unusual fatigue today after overdoing it).
Be well treatment -mate.

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/9/2015 7:02 PM (GMT -6)   
Thanks GC
So far so good.
I did make an error though. I though I was supposed to take 2 ribas twice a day; rather than 3.
I am going to take 3 on my second dose today; and going forward. Hopefully that doesnt mess anything up. At least I have the weekend to see if any more intense sides kick in.
I am going to continue the glass a water every hour and hopefully that keeps me hydrated enough.
I have read enough blogs to know it will get a little harder a month or so down the road, but; I wont quit.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/10/2015 5:26 PM (GMT -6)   
Good going, LA. Water really does help with riba sides. Some don't have many sides at all...Perhaps you will be a lucky one! They are tolerable on these short treatment's. Go for the cure....worth it! Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD.
Eradicated Hep C, GT3a SVR July 2012 TIPS w/HE Jan 2013 Transplant list Mayo AZ-July 11 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/11/2015 7:07 PM (GMT -6)   
Day 5- honestly, I have not noticed any issues so far. I am wondering if the pills lost their potency sitting on shelf for 2'months.
I drink at least 8-10 ounces of water every hour, while awake, and eat meal before taking the pills. I can only hope this continues for the remainder of treatment. fingers crossed and knocking on wood.

getcured
Regular Member


Date Joined Jan 2015
Total Posts : 64
   Posted 1/11/2015 9:00 PM (GMT -6)   
So glad that you are doing so well, especially in light of your reluctance to start treatment. Go LA Survivor! Just finished day 7. On one of my first days I felt so good that I thought that I kept doubting that I actually took my morning pills!! I also have no major complaints. I have gotten really tired in the late afternoon a few days and have had a few headaches (one really bad and I should have taken headache medicine before it got so bad but trying not to take any other medicine). Hoping you never have any side effects.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/11/2015 9:58 PM (GMT -6)   
Don't worry, you're going to be fine. The riba will be all right.
nullum beneficium impunitum...

LAsurvivor
Regular Member


Date Joined Oct 2014
Total Posts : 58
   Posted 1/12/2015 4:11 PM (GMT -6)   
Thanks guys.
thankful that these side effects are a NON issue so far.

Dave, I think your latin should read "No Good Medicine goes unpunished" (haha)

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/12/2015 8:48 PM (GMT -6)   
Go get your card and it will all make sense...
nullum beneficium impunitum...
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