My Hep C Journey

New Topic Post Reply Printable Version
104 posts in this thread.
Viewing Page :
 1  2  3  4  5 
[ << Previous Thread | Next Thread >> ]

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/12/2015 10:18 AM (GMT -6)   
Hello.
While researching what to expect from Hep C treatment. I found this site and Allen's documentation of his treatment journey. It was very helpful. I decided to follow suit and keep a journal of my journey.

I was diagnosed with Hep C on September 17th of this year, 2015. I was immediately angry as I have been working on my health and diet for the past 2 years and my primary care physician had been treating me like a fat alcoholic with no control. I continued to tell him I rarely drank, he seemed not to believe me and scolded me on my weight, never mentioning my weight loss. Ultrasounds for two years showed fatty liver.
I had completely changed my diet and exercise habit, had lost weigh, all of my vitals had improved, yet my liver was not improving by much. When he looked at my past blood tests he saw that my liver had been going downhill for at least the past 5 years and he never ordered a hepatitis test. Really? Isn't that the first thing you do with a compromised liver?
Then of course the referral to a gastroenterologist took over a month before they even made an appointment. I am seeing a nurse practitioner or it would have been two more months before my first visit. So I saw her. Could make an appointment to see her again in another month, because one of the blood tests takes a week and a half to get back. Really?
So labs were taken in early November. A second visit with pressure to have Hep A and Hep B vaccinations before she would request treatment for Hep C. Another really? Further compromise an already compromised system? And make treatment dependent on your agreeing?
So, results were:
Hep C, genotype 2b, viral load= 28,689 (yes, much lower than others I've seen), liver stage 2, no cirrhosis.
Not sure how and when I contracted Hep C. That special circumstance about being born between 1945-1965 fits me best, but Really? What exactly is that as a risk factor?

Treatment has been approved for 12 weeks Sovaldi 400mg and Ribavirin 1200mg. Approval came quickly with no rejection of the claim. Hopefully that is becoming more the norm. I have Anthem Blue Cross insurance and Medico is the provider. Copay is $15 per month for both medications.

I start treatment today, December 12, 2015. I am a 57 year old female and weigh 165 lbs. I take Thyroxine 25 mcg for my thyroid and will continue it during treatment.
I am a full time school teacher and practice yoga. I plan to continue to walk/run, practice yoga, and eat a diet rich in folate to mitigate the probable anemia that may occur while taking ribavirin.
My doctor does not anticipate that I will need to be off work.
I am feeling fearful that this is a bit much to handle on a full schedule. I am very apprehensive of side effects. I am also a redhead, which may have some relation to the amount of pain meds I might need to take.

So here I go! Going to have my first doses with my morning smoothie. Adding 1 Tblsp coconut oil and hoping for no nausea. Wish me luck...

Post Edited (Allison K) : 12/12/2015 9:25:39 AM (GMT-7)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 12/12/2015 2:40 PM (GMT -6)   
Welcome to the hep forum, Allison. We are those with liver disease, and those who love them. My husband is the one with end stage liver disease, caused by Hep C. He likely had the virus for 30 years or longer, before being diagnosed with it during a routine physical. He eradicated the virus, but he needs a transplant.

Most are cured the first time treating with this new treatment, which is the really good news the last year. Some report very mild sides. Some have none. Be sure to drink a lot of water and eat a something a little fatty with the ribavirin. Soon you will be cured! Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

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

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/13/2015 9:33 AM (GMT -6)   
Thank you for your warm welcome themiz. I hope your husband is able to get his transplant soon.

Post Edited (Allison K) : 12/13/2015 8:55:48 AM (GMT-7)


Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/13/2015 9:43 AM (GMT -6)   
Day 1 went well. A bit after my first dose I was just a touch lightheaded. That did not last long.
It was Saturday so quieter than my normal day. Spent the day with friends then a Christmas party. Had some stomach discomfort and burping at the party. Probably related to a couple of cookies I ate, not nausea from the meds.
No great fatigue. A bit tired, but then I often am catching up on the weekend.
On to day 2...

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 12/13/2015 6:36 PM (GMT -6)   
Welcome to the group. You are in the right place. All of us here are either exactly where you are or love someone who is. I love hearing success stories so please keep us posted on your progress.

Rubi
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/14/2015 6:09 AM (GMT -6)   
Thanks Rubi. Will do! This seems like a very nurturing community.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/14/2015 6:19 AM (GMT -6)   
Day 2 went well.
Took meds with my morning smoothie. Added half an avocado and 1 Tblsp coconut oil to this one. Went for a 3.14 mile walk right after and did not notice any lightheadedness this time. The day went by fast as I had slept in. Didn't feel too tired today. Went to yoga early evening. Took meds with dinner. All good!
Stayed up watching Netflix. Not the best idea as I get up early on weekdays.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/15/2015 1:43 PM (GMT -6)   
Day 3 - Uneventful.
Took my meds on time with my smoothie in the morning and dinner at night. I am having pea protein powder, pumpkin purée, coconut milk, coconut oil, green vegetable supplement, sometimes chocolate hemp milk, banana, probiotics and blueberries in the smoothie . No nausea. No dizziness. I may be off a step or a little tired, though not noticeably so. Walked a half mile not long after morning meds. I get up at 4 am so being tired goes with the territory. Put together a gingerbread house with my granddaughter after work(I teach 6th graders), then sat around after dinner. Went up to bed after I had fallen asleep downstairs and it was only 8:15pm. I am pleased so far. I was really worried about side effects.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 12/15/2015 2:46 PM (GMT -6)   
Hi Allison,
Glad you are doing fine in the first days of your treatment. I expect you will be fine. Some get anemia from ribavirin. That can have noticeable symptoms, but many don't have much problem with it. I haven't heard anyone stop treatment

The gingerbread house sounds like a fun project! Take care and keep drinking your water. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

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

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/16/2015 8:18 PM (GMT -6)   
Day 4 and 5 - all fine.
Walked 1/2 mile yesterday and 2 miles today. Getting about 12 cups of water daily. No side effects other than a little tired.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 12/16/2015 10:46 PM (GMT -6)   
It sounds as if the treatment is going well. You'll be fine. Stay well.
nullum beneficium impunitum...

RoseAnn
Regular Member


Date Joined Dec 2015
Total Posts : 38
   Posted 12/19/2015 9:55 AM (GMT -6)   
great to hear almost no side effects. I started treatment about 2 weeks ago. I just have the "hazy" feeling. Yesterday I felt great. Upped my water intake and started walking 2-2.5 miles 2 or 3 times a week.

Respectfully

I am female, 59 years old - living with this disease since 1977 (I stopped drinking in 1981 I believe that had a great effect of the disease not progressing).

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/23/2015 5:45 AM (GMT -6)   
Thank you for the encouragement David and RoseAnn.

11 days complete -
Still drinking lots of water. Doing yoga and walking most days.
I think I have a bit of what you called 'hazy'. Also have some muscle aches from a massage and 3 hours of yoga Monday.
My ankles are itchy. This may something I tend to get in the winter once the heater is on. Could be related to thyroid too. There are bumps though.
There have been a couple times when I'm just on the verge of a headache.
Oh, and I'm writing now because I woke up at 1:53am and couldn't go back to sleep. Glad I'm on vacation and can take a nap if I need to.
That's about it for symptoms. Feeling pretty good.

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 12/23/2015 8:21 AM (GMT -6)   
Allison, I'm so glad your symptoms are mild. This will certainly help you through this journey. Itching can be fom the Ribavirin. I had some rashes and itching with it. i might also ask if it's a hive like reaction. I developed cold urticaria in April. Hep c can trigger this allergy to cold.
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 12/24/2015 12:27 PM (GMT -6)   
Good luck. I just finished 12 weeks same meds as you are taking and lab results came in a couple days ago NOT Detected. Hope you have few side effects. If you eat and don't take the ribavirin all at once it will probably not cause the jitters as much and you won't be so easily agitated. Sounds like you are in good shape so you will probably fair a lot better than most.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/28/2015 8:44 AM (GMT -6)   
Thank you for the information Rubi.

I had never heard of cold urticaria before. Although it is colder now(it's been around 30° lately in the mornings), I am unsure if this is what I have. It might make sense at the ankles as I usually have a bit of skin exposed wearing running sock and leggings coming just short of them. I have found a few bumps at the crook of my left elbow now too. There seems to be more irritation on my right ankle.

I will have to watch this and talk to my doctor.
Thanks again.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 12/28/2015 8:56 AM (GMT -6)   
Thank you for the encouragement tblount.
Congratulations on finishing your 12 weeks and your Not Detected status!!!
I have been reading your comments in RoseAnn's thread and researching the ammonia issue. Thank you so much for sharing this. I will have to look more closely at the protein content of my diet. During the holidays I tend to eat more foods listed as high in ammonia.
Finding conflicting information on gut flora/probiotics in this regard. I do take probiotics so need to become more clear on this aspect.
Thanks again!

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/3/2016 8:58 AM (GMT -6)   
Well, I am 3 weeks in now. I've been on vacation and am going back to work tomorrow. Was glad for the extra chance to rest, but didn't use it that often.

Still about a week before my first blood tests during treatment. I did push to make sure I would be tested for ammonia levels.

Side effects are still mild. On the verge of a headache sometimes, but then it's gone. Very itchy lower legs, with a couple of bumps also showing up on one thigh and the crook of one arm. I am starting to have some lightheadedness.

On Wednesday I ran a 5K. I really walked most of the way. By the first quarter mile I was getting dizzy. Whenever I started running again it would come back. I took a hot bath that evening and while getting out came very close to passing out. I rested for a few minutes and all was fine. I am very concerned that I will not be able to keep up my exercise goals. They were hard won so I am pushing to keep going.
Yin yoga, slow deep stretch, is quite comfortable. I will be doing some ashtanga in a little while. That is a bit more energetic. Lots of ups and downs. Hoping it goes well

Wishing everyone Health and Happiness in the New Year!
<3
Allison

Post Edited (Allison K) : 1/3/2016 8:04:59 AM (GMT-7)


themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/3/2016 12:47 PM (GMT -6)   
Your doctor can prescribe a cream for the itch. Triaminolone Acetonide Cream 0.025% worked well for themister. Good to see you doing so well! This will be over before you know it. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

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

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 1/3/2016 6:39 PM (GMT -6)   
Try to remember your body is working really hard right now. The meds are killing this nasty virus and your body has to filter it all out and get rid of it. Try to have a back up plan for your exercising that will satisfy your desire to stay fit and still allow your body the rest it will desperately need to fight this battle. If you are close to passing out your body is telling you something. I know you can do this and you will be so glad you took this brief amount of time to get rid of the hep c.

hugs...Rubi
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1077
   Posted 1/3/2016 7:18 PM (GMT -6)   
  hi,
I agree with Rubi. ribavirin causes a drop in hemoglobin(red blood cells).
your dr will take a blood count at your 1st blood draw. In the mean time, listen to your body. Ammonia levels rarely increase until the liver decompensates.
barry
 
 

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/8/2016 6:52 AM (GMT -6)   
I really appreciate the advice themiz, Rubi, and ppm guy. I am trying to stay sensitive to my body's needs. It is a wonderful body to have taken me this far in my life and I do have the utmost respect for it. During the run was the first time I really felt a limitation due to the drugs. Then the hot bath and standing up really did it. No hot baths since and only walking.

Being on vacation my second and third weeks to get all the rest I need was wonderful. Though I did sleep in pretty often, I found I only once needed a nap. So hopefully I am on the right track. I've been back to work a week now and am a bit more tired. Going to bed early and not having too much trouble getting up at 4 every morning.

I am finishing week 4 today of treatment (400 mg Sovaldi, 1200 mg ribavirin). My doctor does not take patients off work routinely for this treatment. I did speak to my principal about my hep c and treatment so he would know what was up if I got weak or tired or stayed home a couple days. He was encouraging, so I guess I don't have to worry about an unsympathetic boss.

I will ask about a prescription of Triaminolone Acetonide. The itching is getting quite worse. I have raised bumps going higher up my calves now and I have started getting them on my forearms. I am drinking about 11 cups of water a day so was hoping to be flushing a lot of this medication out of my system quickly. This indicates to me I need a better method or to drink even more. Or maybe both. Most of my worst itching takes place after I have finished my day. That is when I sit or lie down and have finished my last ribavirin dose for the day. I wonder if I split up my pills more throughout the day it would help. I doubt that would hurt as long as the dosage for the day was the same.
I think today I will attempt to raise my water intake some more, taking several glasses after my final dose for the evening.

Blood tests are next week and doctor visit is the week after. They want to give me a hep b booster at that time. I wonder the logic of adding another stressor to my body when it is fighting so hard. When I expressed that to the doctor she didn't get it. I don't have any behaviors that put me at risk for those viruses. If I refused it do you think they'd revoke my treatment plan? She indicated she wouldn't request the plan if I didn't agree to hep a and b vaccinations to begin with.

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 1/9/2016 5:01 PM (GMT -6)   
My treatment and getting rid of this bug was job 1. I looked at it like I was out of work and needed a job... in that situation my job would be to GET a job. My job when I was diagnosed is to get the medication into my system and get the Not Detected lab results. It was pretty tough a few times. The worse was when I had to take antibiotics for a tooth infection that spread to my inner ear. The infection made me so dizzy I was in bed for several days then there was a reaction with the Cipro and I though I was going to die one night... so I tried to stay away from all other meds (except my bp meds). I had mild headaches but most headache meds are pretty tough on the liver so I took naproxen just twice.

I want to get A and B vaccinations but will wait a few months.

It also became very obvious to me that the Riba was much easier to deal with when I only took a pill every hour apart and was sure to eat. I never felt like eating and that was always a worry... what to eat and thinking I must eat. I would have lost a lot of weight but I managed to lose only around 5 pounds.

I doubt you'll flush the riba very much as fast as you are taking it. It will build up and eventually saturate your body. My last few weeks it was causing my heart valves to fail to relax (a well documented side effect) and that pushed up my systolic bp so high that I had to cut back. If I took more bp meds they would bring it down but I had to be careful because they took the diastolic pressure so low that I was dizzy and faint and extremely fatigued. I've read that so many doctors reduced the riba during the last few weeks. It's a powerful drug.

Best wishes... and remember You'll be extremely agitated at times and people around you will surly notice. I just told them I was practicing to be a grumpy old man.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 10-22-15
Thank You Gilead

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/10/2016 9:17 AM (GMT -6)   
Hahaha tblount, grumpy old man practice :)
Seems like you had it pretty rough

I'm a 6th grade teacher so some people already thought I was grumpy. Your input has been very helpful. I will see if my doctor thinks paring down the ribavirin would be alright. My weight is just at the cutoff for 1000 mg instead of 1200 mg.
I need to consider spacing out when I take it too. I've been so careful to take it all on time. Don't want to mess that up.

Congratulations on your Not Detected status.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/10/2016 10:53 AM (GMT -6)   
Allison...I am so happy to hear you are tolerating treatment so well. Soon this will be but a memory.

Regarding dosing and reduced dosing questions.

I strongly suggest you take the ribavirin precisely as prescribed. Twice per day... AM and PM.

Your doctor would determine a dose reduction based on your labs, (hemoglobin). Your bloods, not side effects, tell the story. The standard protocol is to reduce ribavirin if hemoglobin <10 g/dl.

Hope that helps.

As always, run any questions past your doctor. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran
New Topic Post Reply Printable Version
104 posts in this thread.
Viewing Page :
 1  2  3  4  5 
Forum Information
Currently it is Sunday, October 22, 2017 8:12 AM (GMT -6)
There are a total of 2,885,519 posts in 316,612 threads.
View Active Threads


Who's Online
This forum has 157725 registered members. Please welcome our newest member, NanaNell.
348 Guest(s), 8 Registered Member(s) are currently online.  Details
Jerry L., hopenchange, HaleyBugs07, Killjoy123, James799, Pratoman, futhalunka, gfields


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer