Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Allen's Sovaldi + Ribavirin Treatment Log

Support Forums
>
Hepatitis
✚ New Topic locked
1 2 34 5 6 7 8 9
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
music
Regular Member
Joined : Jan 2014
Posts : 273
Posted 2/25/2014 9:34 AM (GMT -8)
Hi Allen, congrats on the perfect alt, ast! Sounds like your liver is getting a rest! Your three labs that are a little low are still much higher than mine, and I am sure your Dr is keeping an eye on them. I have read that on or after the fourth week with ribavirin, they can stabilize...i am certainly no expert. We learn and share as we go. Looks like a tremendous start!

music
profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 2/25/2014 10:34 AM (GMT -8)
Finally!
29 and 29? That's awesome!
I would say that treatment is working a little ;)
You're just a bit lower than me and my doctor said I was tolerating it well. I think if you're going to have a problem, you would drop more and faster.
Low RBC I would assume is what's causing all of our tiredness.
Hopefully, I'm not too far off the mark and you hear something soon.
This waiting and not knowing what something means is a killer.
It made me a bit crazy when I got mine back :)
Look forward to hearing more from you soon.
You're definitely a fighter and I know you'll hang tough!
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 2/25/2014 1:45 PM (GMT -8)
Thanks guys, I was just given info that I will be given a viral load test on March 6th and will hopefully have results days after. Another viral load test is also scheduled for when treatment ends which will be about May 7th.

I was told they do not do them anymore than this here in Canada and most times they give one viral load test, the nurse I spoke with told me this may be changing soon with these new treatments but currently this is the way they do it and they will not do monthly tests at all and never have. I guess I am lucky I am getting two done.

I was also told today that their are a few others besides me that have just started treatment, though I was the first one she is aware of and thats probably because I did all the dealing with insurance and Gilead myself.
profile picture
944s
Regular Member
Joined : Feb 2014
Posts : 45
Posted 2/26/2014 7:53 AM (GMT -8)
Hi Allen,
I started Feb 1 Sol / Rib Geno 2. 100% coverage from Manulife in Ontario.
Sorry to read about your sides. I have zero. Except for that darn itch after showering.
I take a couple of Melatonin ( 10 m ) before bed,sleep like a log.
No headaches but I didn`t get them before I started treatment.
Have you spoke with your Gilead caseworker about it ?
I wont have any viral loads done until I finish the end of April.But, they are drawing blood every two weeks.
Part of a quick and successful recovery is having a positive attitude and not dwelling on the negative.
The reason I write this is I was very ill this time last year. Not HCV related. I was in ICU for two weeks and given a 30 % to live.3 months later 2 in hospital 1 in a Physio Rehab Hospital I rolled myself out.
Had to learn to walk again as I became de-conditioned. All good now.
I was signed up to start Interferon but this became available.
I can do this one standing on my head.Be positive it works, right Mama ?
Good luck


3 months later
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 2/26/2014 8:46 AM (GMT -8)
Thanks for the info 944s, I don't get itchy after a shower but have always been itchy from another pain medication I take so I'm used to it. I did try melatonin in the past but it didn't work very well for me and because I am epileptic they have to be careful with giving me sleeping medications....last time they tried one I had a seizure a couple of days after trying the medication. Right now I am actually sleeping alright, probably a bit too much! Though some nights my hours are all screwed up so its hard to sleep because I slept already for about 6-8 hours throughout the day, my doctor told me just sleep if I need too.

I have not spoken with Gilead since starting treatment though I do have someone I speak to locally from the Hepatitis support centre, the lady is very well educated with all this but unfortunately when I was getting sick last week she was on holidays and my specialist just doesn't have time so I had no choice but to go deal with my family doctor for help getting rid of the headache, since them I only had one other small headache and its not a problem anymore.

I am also getting blood drawn every two weeks and I'm glad thats happening, sorta even wonder if they should be doing weekly due to the low RBC's

I've actually felt really well mentally since this started, few days I was so tired and very sick feeling and while I would hate to have to feel that for 12 weeks I knew if I toughed it out it would go away and it did.

This week I feel tired alot and sick to my stomach and many times have a hard time concentrating on work so I have been just taking time off if I need too.

Al
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 2/27/2014 8:04 AM (GMT -8)
Today is the start of Week 4 , feeling very positive about things though the last couple of days I've noticed I'm more tired than last week and the last two days I only walked my dog for 30 minutes and didn't do my usual 30 minute cardio workout...just don't have the energy :-(

I still feel sick with a tight stomach and it comes and goes, when I feel good I try to eat as much healthy stuff as possible and when dinner rolls around I eat what I can and if I can only eat half...so be it, I will usually have a small snack after that. My weight has actually gone up a few pounds but I am far from overweight, possibly due to me eating comfort foods at night when snacking...ice cream tastes so good at times :-)

No more headaches! This seemed like it was a one off thing when it did happen and the headache lasted for days and I only had one small one after that day, took two Naproxen and it was instantly gone.

Bioscript will be delivering my second batch of medication today for the next four weeks, I have a system to ensure I always take my pills on time and have not once missed taking them though sometimes if I wake up slighly later then I will take my pills about two hours later than usual which is not a big deal from what I was told as long as I don't miss them.

Even if everything I have experienced so far is side effects I have to say they are not that bad, I am not dying and buckled over in pain and screaming and I am doing ok. Some days it sucks when I feel sick and just want to go lay down but oh well, thats the price to pay to be clean of Hepatitis C.

I was mentioning to my wife last night about how thankful I am to be able to take take Sovaldi and Ribavirin for ONLY 3 months instead of the Peg+Ribavirin I was initially told I would be starting around March 1st.

My heart goes out to all those who suffered taking Interferon+Ribavirin for 6-12 months with some pretty horrible side effects, you people are all true heroes in my heart and its people like you that got us to the point we are now with Hepatitis treatments and instead of 6 months of hell with Peg+Ribavirin we are now down to 3 months with minimal side effects and I'm so sorry they did not have this treatment sooner for all of you.

Thanks again to all the wonderful people of this forum and the support you have given me since the first day I dropped into this forum, you've all helped me alot mentally dealing with this and you all keep me positive while I fight this virus.

Thanks

Al
profile picture
music
Regular Member
Joined : Jan 2014
Posts : 273
Posted 2/27/2014 2:59 PM (GMT -8)
Hi Allen, You are so right - so blessed to be at the right place at the right time for treatment - and it is only going to get better. Starting week 4 is awesome - you are moving quickly through your treatment and doing it incredibly well! We all, I know I speak for more than myself, enjoy your posts and look forward to more news as we follow your progress!

music
profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 2/27/2014 4:05 PM (GMT -8)
Stay strong, buddy!
I definitely am on board with being very thankful, too.
Also, I actually got a bit of that hungry feeling yesterday that you described (feel hungry but food doesn't fix it). It was paired with indigestion, so I drank a cap full of pepto and it worked miracles on both!
I am taking as little otc stuff as possible, but that one was worth it :)
I think I've taken that once and Ibuprofen once this entire time on treatment.
Anyway, talk to you soon!
profile picture
ppm guy
Veteran Member
Joined : Apr 2010
Posts : 1261
Posted 2/27/2014 7:58 PM (GMT -8)
your labs from the 20th look great. even your hgb is is fine. i see canada uses different values than the US. when my viral load became undetectable my side effects got better. but i used peg/rib/inc. i think your going to be very happy at your vl draw next week.

everybody who used the older drugs used many otc and rx meds for sides. we had to. and it didnt effect the outcome of the tx.
barry
profile picture
944s
Regular Member
Joined : Feb 2014
Posts : 45
Posted 2/28/2014 5:08 AM (GMT -8)
Hi Al,
My caseworker told me that I could take my Rib 3 times a day instead of 2 if the brain fog was a bit too much. I take 6 / day, 3 x 2. I take the Sovaldi with supper. Might help you a bit. Check with your caseworker.
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 2/28/2014 1:07 PM (GMT -8)
So its the Ribavirin causing brain fog? I find the last few days or maybe the last week something seems off some days when I am thinking. I'm used to working very long hours on computer's and switching back and forth between two monitors but lately it seems I am not always thinking straight or forgetting things I know well related to programming so it screws me up and I waste time or I just don't feel like working.

I also noticed my eyes mostly at night when I am watching TV or looking at my phone my eyes sorta seem like they go buggy and I lose focus? Does this sound normal at all...everything is fine when I put my phone down but it seems lately my phones and monitor maybe are bothering my eyes when they didn't before treatment so just thought to ask if others have this problem at all.
profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 2/28/2014 1:30 PM (GMT -8)
So your first paragraph is how I felt almost every day BEFORE treatment :)
But, the Ribavirin effects can also do this. Don't forget that we're borderline anemic right now, too :)
Also, I have found that I'm wearing my reading glasses since starting treatment way more than I ever did. Things do seem fuzzier than before and I've seen things about Ribivirin and vision. I'm not an expert, so I still hope to hear others input, as well!
Actually, I just looked it up. Ribavirin can cause or worsen eye conditions. They actually recommend an eye exam before treatment with it.

Edit: Here's another fun link (I've also seen this list in several places)! It tells you to contact your doctor for an awful lot. Some are under the "contact your doctor" and are also under the "do not contact your doctor". So who knows?
I definitely recommend bugging your doctor if anything concerns you at all, though. That's why they make the big bucks- and supposedly they got in that field because they love helping people :) At the very least, they can clarify what they would like to be contacted for. I have a feeling most don't explain this part well.
www.drugs.com/sfx/ribavirin-side-effects.html

Post Edited (steve-ca) : 2/28/2014 2:58:37 PM (GMT-7)

profile picture
MamaLama
Veteran Member
Joined : Oct 2010
Posts : 4907
Posted 2/28/2014 3:12 PM (GMT -8)
I think you guys need to remember that you are taking a substance that is killing viruses in your bodies...so like a chemo that is attacking cancer cells, these drugs are very powerful and killing things that have been very busy inside there for a long long time.. WE read all the information and hope that the side effects are mild. But there is likely to be some sensation while you body kills off and expels the evil doers.

With the combo last time Mike was treated, he developed "wooly spots" on his retina which are generally attributed to Interferon. His eye doc started to do the hysterical act, contacting the Hep docs, etc., wanting to reduce the dosages, etc. But the spots resolved on their own. I guess this is not typical, but it happens. It went away. Thank goodness.

Praying you all get cleared in the shortest amount of time possible.

Hoping you are seeing better soon.

Best,
Mama Lama
profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 2/28/2014 3:21 PM (GMT -8)
ML, you're absolutely right! That's why I don't worry about little things, or I would worry all day. I just don't want to concur with someone and then they don't contact their doctor and then they regret it. Some things things you should worry about and others are fine, but I think everyone's kind of in a state where they're not really sure which are which :)
Anyway, hopefully our good, bad , and even psychotic posts (I think I had one or two) will help others when they are wondering the same things at some point :)
Ribavirin is going bye bye soon, anyway, but for the time being...
I will say that this forum and the people here have been the most positive thing out there!
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 2/28/2014 3:32 PM (GMT -8)
My wife says I worry too much :-)

So for anybody reading my log in the future don't let my little side effects worry you, this treatment IS the real deal and it will cure me in less than 9 weeks, already my ALT and AST levels are better and next week will be a viral load test and that should give a good sign things are going well.
profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 2/28/2014 3:55 PM (GMT -8)
Or at the very least, they will see us worrying and then we turned out just fine.
And use that to their advantage :)
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 2/28/2014 3:56 PM (GMT -8)
haha yep!
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 3/3/2014 5:04 AM (GMT -8)
This weekend I felt like crap and alot of the time just had a sick feeling in my stomach and what I guess is maybe the brain fog people mention, have troubles concentrating but getting used to it and trying to not let it bother me too much as this will all be over in a couple of months. I'm still tired but getting used to it and just sleep when I feel like it and have naps when I want and that alone keeps the stress down.

I go today to get another blood level check as my blood requisition changed slightly since my last blood draw, I wanted to get it done today as my next draw should have been Thursday but instead on that day I go for my 1 month viral load testing and I'm looking forward to the results.

I have only had my virus load checked once I think in November/December 2013 and it was 4.7 million so I am thinking it should be down alot seeing how my ALT & AST levels have already changed dramatically after only taking the treatment for two weeks.

I'm staying positive and though I feel like crap alot of time it could be way worse, instead I look forward to the beginning of May and when I will take my last dose of these meds and already imagine that the results will be in my favour...thats what keeps me going each day and somewhat happy when I feel *****y about all of this, things could be so much worse and I am thankful to even be given the chance to be treated.
profile picture
MamaLama
Veteran Member
Joined : Oct 2010
Posts : 4907
Posted 3/3/2014 6:20 AM (GMT -8)
Allen, sorry you are feeling ****y.

I am thinking that means you are killing the bad guys like crazy and they (The Hep C viruses) are hating it! Ha Ha. Too Bad...good bye, good bye.

Anxious to hear about your labs and VL.

You can do this, you ALL can do this.

Day 1 at our house. Nervous.

Hugs,

ML
profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 3/3/2014 9:09 AM (GMT -8)
Sorry you had such a crappy weekend.
It's great to see you stay positive and strong, though!
We only have to this 2 more times- 1 month is basically down!
Have you asked if there's anything you can take to help the stomache?
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 3/3/2014 10:48 AM (GMT -8)
They gave me Zofran but I was told its very strong so I have avoided taking it and have been sipping ginger ale and just dealing with it.

Post Edited By Moderator (MamaLama) : 3/3/2014 11:58:35 AM (GMT-7)

profile picture
steve-ca
Regular Member
Joined : Feb 2014
Posts : 213
Posted 3/3/2014 10:56 AM (GMT -8)
There has to be something simpler that's inbetween.
Something as simple as your naproxen solution for the headaches.
I'll ask tomorrow for the heck of it.
My Dr. is really good and well respected.
I didn't get him on purpose it anything, just got lucky.
Anyway, can't wait to hear your results!
Talk to you soon.
profile picture
**David**
Veteran Member
Joined : Nov 2009
Posts : 3708
Posted 3/3/2014 11:26 AM (GMT -8)
Go to a pharmacy and ask for Coca Cola syrup. It settles down your stomach like nothing else.
profile picture
944s
Regular Member
Joined : Feb 2014
Posts : 45
Posted 3/3/2014 1:14 PM (GMT -8)
My caseworker recommends a couple of old school soda crackers for the upset stomach. Can be non-salted.
profile picture
AllenM
Regular Member
Joined : Dec 2013
Posts : 223
Posted 3/3/2014 1:20 PM (GMT -8)
Steve...I was given Naproxen for headaches when I had that 4-5 day headache and it worked excellent and headache was gone in two hours but next day I had a small one and took another two Naproxen and headaches have not really returned.

What I am noticing now isn't heartburn or anything is just an overall sick feeling, kinda like someone might feel after drinking the night before and they are not hungry and feel food will just make things worse? And my stomach just feels somewhat tight and honestly before the treatment I never had alot of stomach problems ever.

Either way things must be working and I just got my blood taken and will have those results tomorrow I hope and then Thursday will be the viral load test but it could take a week to get those results...yep thats how long it takes in Canada at least where I live and they do them in batches due to high costs they told me.
✚ New Topic locked
123456789


More On Chronic Illness

Expect The Unexpected: Coping With Life's Challenges

Expect The Unexpected: Coping With Life's Challenges

Hypnotherapy In Medicine

Hypnotherapy In Medicine


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.