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Allen's Sovaldi + Ribavirin Treatment Log

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Posted 4/3/2014 7:10 PM (GMT -8)
Dragon Slayers ahead as Round 3 begins!
Posted 4/4/2014 10:47 AM (GMT -8)
I started on a 12 week treatment also but just found out yesterday I'm being carried into a 4th month. I go to see my doctor in a few days and another blood test so hopefully the 12 weeks was enough.
I can't say it enough. Those of us first rounders are being watched by everyone to see how well we progress. It's up to us to do all we can to make sure it's a success so the people coming in behind us will have the known info we're finding out about.
Posted 4/7/2014 1:32 AM (GMT -8)
I found out late Friday my ALT is at 22 and Hemoglobin is at 125 as of blood taken April 3rd. I went for all you can eat sushi on Saturday afternoon and though I didn't feel I ate much I became sick and vomited about an hour after and came home and slept for about another 4 hours.

I then slept another 8 hours Saturday night and awoke on Sunday and I was awake another 5 hours and felt incredibly tired and had to go to bed again for about another 4-5 hours and woke up feeling very exhausted and just beat down.

I have noticed alot lately I am very tired, I get winded even more when walking up stairs it seems I nod off alot watching TV and can easily sleep 12-14 hours everyday. I do not feel sick like I did all the time last month but I sure do feel tired.

I've been trying to do some other programming work done that I had to sorta drop the last few months but it's impossible to concentrate on for more than a couple of hours if that.

A nurse at this hepatitis support clinic told me I will be fine and 125 is ok but if I drop below 120 they may need to put me on some medication that would help bring my HGB back up, they were worried though about the cost as its very expensive and usually they say your hemoglobin will return but if they notice it doesn't right away after treatment I may have to take these meds she said.

Apparently its normal to feel this way at 125 HGB but I have to be aware each time I stand now to try to take my time because I am usually off balance and dizzy each time I stand and have sort of lost my footing more than once.

Other than that everything is going okay and looking forward to the end of this month :-) Have a great day everybody!

Post Edited (AllenM) : 4/7/2014 3:35:54 AM (GMT-6)

Posted 4/7/2014 2:46 AM (GMT -8)
Hope you feel better soon. Sorry to hear you got that sick.
My labs from the 31st put me at 12.7 (127 the way yours are recorded), and I'm not running any marathons for sure :)
At the very least, we're in the home stretch!
As far as a good day, not sure if I can pull that one off today. I'm up still (3:45am) stuck on a tech problem, hoping to get it straightened out before people start coming in and the emails start pouring in along with them. And so far it's not looking too good :(
Posted 4/7/2014 2:57 AM (GMT -8)
Hi Allen, curious re your hemoglobin results as they compare to those of u.s. You might consider asking your Dr if it is ok for you to add some foods high in iron to your diet to possibly help out your rbc status...such as dark green leafy veggies, esp kale etc. The dizziness, fatigue, and some intermittent shortness of breath can be results of your lower hemo, etc. I know you know to stay well hydrated. Look forward to your continued posts. You are rounding third base and headed for home!


music
Posted 4/7/2014 4:14 AM (GMT -8)
I do eat vegetable and fruits daily, not so much Kale but I eat salads at least a few times a week. I will be calling the nurse sometime today I hope and will she what she has to say.
Posted 4/8/2014 8:46 PM (GMT -8)
Hey, Allen. Hope you're feeling better
Posted 4/9/2014 1:22 AM (GMT -8)
Thank you Steve, feeling a bit bitter just been so fricken tired! Called my nurse and she said its normal and to hack it out for the 3 more weeks which I have no doubts I can do I just get winded very easily now.

Another thing I just realized last night and as stupid as it sounds I have to admit if others have this problem :-)

So for the last few months I have been feeling sick I have noticed many times I have really bad gas, nothing like I have ever had before and I thought what the hell is going on! Its gotta be the new meds!

Actually I thought the other night of what I have changed in my diet since all this begin and because many breakfasts I would always eat oatmeal instead I began supplementing "Fibre1" breakfast bars as they were easy to eat and helped me get calories and went down fast so I asked the wife to grab them from Costco in bulk.

Well last night when searching for the cause of my gas all the time I actually thought it could be honey, I started using pure honey from Kirkland(Costco) instead of artificial sweetners when all this happened and I suspected it could be the problem with the gas but honey actually does the opposite.

As luck would have it I came across some women discussing Kashi cereal giving them gas and then and then all of a sudden one of them mentions Fibre1 bars and then it was like they all did!

Apparently Fibre1 bars and Kashi Lean cereal contain "Chicory root" something I don't think I ever noticed on the packaging but regardless, apparently it can cause very bad flatulence in some people :-)

I'm hoping I have found the source of my gas as funny as this story sounds, I'm sure my wife will be happier! I mean it was so bad it was like I was eating broccoli every day and at times it may have been causing some of my upset stomach and while the natural honey possibly may have helped that having a Fibre1 bar almost every single day and sometimes two bars a day was probably not helping so they are banned from my diet for now.

I thought I better mention this for people that worried why I was always sick, possibly the Fibre1 bars are part of the cause and the chicory root contained in them and also Kashi Lean or LT cereal may do the same and people bad gas and possible cramps and indigestion and if you already feel like crap from the medication this may seem like a side effect of the meds when it really isn't.

Perhaps this info will help someone else but I plan to stop eating them as of this morning and should know by the weekend if they are the source of the gas problems...I never mentioned the gas problem before because it was somewhat embarrassed and thought it was crazy nobody else mentioned this side effect but all along its probably been the Fibre1 bars.

Btw, I normal do not eat this crap this often and I started eating them out of convenience which was a bad idea and I typically eat oatmeal and brown sugar for breakfast and before all this I constantly ate oatmeal with a scoop of Costco chocolate protein with a half cup of milk mixed in and generally try to eat as healthy as I can.

I'm not perfect but do my best to eat healthily as possible and my wife always incorporates vegetables into every meal and I am usually always at my healthy weight I should be for my height and age and I should have never been eating this "instant food" in the first place...all these bars in my opinion are no different that junk food and even though they might say they are 120 calories if they have almost 30 grams of carbs thats essentially sugar and will convert to fat if my body doesn't burn it off and with less exercise that means I have gained about 6 pounds more than I should have :-)

So the long and short of it, if your feeling like I was for parts of my treatment its possible it has something to do with what your eating and though I am eating healthy in all other aspects and consuming lots of water in this case I am sure the Fibre1 bars and the chicory root in it are causing me gas and possibly stomach problems.

I initially thought it could be the coffee I was drinking, but then again why didn't coffee do this before? so then I thought its got to be the medication or the honey I put in coffee as a sweetner and while reading about honey I magically ran across the Fibre1 mention.

As I tell so many others "Google is your friend"....these days its amazing the info we can find instantly.
Posted 4/10/2014 10:10 AM (GMT -8)
Things are going good, I am down to 21 days worth of meds and the end is getting close! I think I am feeling better day by day just knowing this will all be over soon.

I still remain very tired some days and find after I wake up within about 5 hours I usually need to go have another two hour nap and my appetite at times especially around dinner seems to be half of what it used to be but regardless I am making sure to get my daily calories and keeping myself hydrated!

Drinking water and eating are so important during this treatment, your body needs food and water to keep running and even more so with these medications so make sure you drink enough water.
Posted 4/10/2014 10:30 AM (GMT -8)
Hi Allen, only three more weeks for you...that is incredible! I too fight fatigue, but the naps do help. Glad you are better.

music
Posted 4/10/2014 11:18 AM (GMT -8)
Thanks music, slowly I am feeling better and I am looking forward to being able to workout again and going on some long hikes in the Canadian Rockies this summer I hope.
Posted 4/12/2014 4:55 AM (GMT -8)
Happy for you Allen. When your body realizes it no longer has to fight in a few weeks ... you'll be so able to hike I'm sure!!!!!! Glad you're feeling a bit better.
Posted 4/12/2014 5:31 AM (GMT -8)
My breakfast:
In a blender, about a cup of water, 3 frozen strawberries, palm full of blueberries, small handful of baby spinach.
Start blender on medium speed, then remove lid.
Add two tablespoons of ground flaxseed, then a small dallop of peanut butter.
The next two steps are done quickly to keep finished product from becoming too thick. Experiment for what works for you.
Add a half banana, a heaping scoop of protein powder (14-20 grams of protein), and 1/2 cup almond milk.
Enjoy. Very filling, won't be hungry for a while.
Change ingredients to your pleasure.

Post Edited (Dog LeDon) : 4/12/2014 7:38:13 AM (GMT-6)

Posted 4/12/2014 6:00 AM (GMT -8)
Thanks Dog, will have to try that soon!
Posted 4/12/2014 6:35 AM (GMT -8)
Btw I wanted to mention I am not sure whats going on this week but I am feeling way more energetic that I have the past 2 months and the last 4 days have been really strange and I am starting to do more things and have more energy,its odd to say the least but *maybe* my body is finally getting used to these medications...too bad its at the end of my treatment.

Yesterday I had so much energy I moved all the deck furniture from storage onto the deck, took a whole bunch of old goods to the ECO centre for recycling and then I actually cleaned my whole garage floor with a pressure washer, and then my driveway and then the front of my house and eventually ran out of time but I worked non-stop except for lunch from 7:30 until 5 p.m and felt good and got so much done, my wife was blown away when she seen how well I cleaned our garage and said "Good work honey" and it made me feel so good because the last few months I have felt so sick and lazy and sorta felt like a drain on her emotionally but to have her say that and smile felt great.

If your not from Canada or have never lived in a cold climate, our winters here require alot of gravel to be used on the roads because of all the ice and we can't usually park outside so when we pull our vehicle into the garage all the ice and snow and gravel embedded in the snow all melts of onto our floor and their is no drain in the floor so it makes a real mess over the winter and we have no choice but to power spray the floor every spring and blast it all off the floor and get it all outside and keep power spraying the whole driveway right to the street and very soon the street sweepers will come and collect all the gravel...if you have never lived in a climate like this you would be freaked out at the quality of our roads after a winter of freezing and thawing and no word of a lie we have thousands of pot holes in the road that need to be patched each year.

My garage also has been converted into a gym on one half so having it cleaned up now will also inspire me to get back to training again as soon as possible and though the biggest recreation centre in my city is right out my back door I would rather work in the comfort of my own home and not pay anything.

My little gym ;-)



VIEW IMAGE
VIEW IMAGE



My wife keeps taunting me to get rid of my gym equipment so she can buy a new Dodge Challenger that she loves so she has somewhere to park it :-)
Posted 4/12/2014 11:33 AM (GMT -8)
That sounds awesome! You've seen me saying stuff like this- I've been an energy monster quite a bit myself :)
I believe that is a good sign!
Posted 4/18/2014 2:42 AM (GMT -8)
Hello everyone, as of yesterday April 17th I was down to 14 days left of treatment and I also had my blood taken. Late in the day they had the results and told me everything was going but my hemoglobin has dropped again and is now at 121.

My hemoglobin was last at 124 on April 4th and now its dropped another 4 points but I should be fine until treatment ends. I do feel tired alot of the time but other than that things are going well and I'll be done the treatment in less than two weeks.

This week I felt well enough to do all sorts of yard work and cleaning and had more energy than the previous weeks, I'm not sure why the sudden change in how I feel but I've been feeling great, except for being tired.
Posted 4/18/2014 5:02 AM (GMT -8)
Hi Allen, you have had a remarkable treatment journey that you are continuing to share. So happy for you that you are almost "done"😃 Hope the site is able to keep your posts available for future treatment hopefuls and participants! Have a great day!
music
Posted 4/18/2014 6:07 AM (GMT -8)
Thanks music, I had hoped someone would come along in the future and read it start to finish and even if they miss some of it they realize the treatment isn't bad, last October I was truly scared and panicked and I can't even put it into words.

I was already dealing with a sick father and then boom this happens and they scheduled me for Peg-Interferon and Ribavirin and then not only was I scared so was my wife after she searched the treatment on Google, i can't tell you some of the thoughts that went through our heads.

We refused to take good enough for the doctor's answer when she told us we couldn't get Solvaldi for 2-3 years, when we arrived home from being scheduled for Peg-Interferon and Ribavirin my wife found the DIN# and it was right around that time I found these forums and I had to leave town for a week to move my father half way across the country to another care home and during that trip I got the good news that my insurance *might* cover it

After I returned I waited a couple of weeks and began calling Gilead almost daily, they contacted my insurance who the same day said it hadn't been approved and then lo and behold it was approved for my coverage and treatment began.

I still had worries I was taking an experimental drug BUT I knew it was much better than the Peg and the side effects would be less and the cure rate also much higher so my journey began and here we are 10 weeks later.

Their has been some crappy days and I'd be lying if I said their wasn't but my body is fighting a virus that was once incurable and now it is, being sick every single day means nothing if you are cured and then can move on with life and never have to worry too much about this disease just respect your liver, I never realized how delicate it really is to everything until all this happened and I'm thankful Sovaldi had just been approved in Canada shortly after they learned I had it and by a stroke of luck with persistence I was the first in my city to get it....very thankful.

These forums has helped me so much..I was scared to tell anybody, I constantly read others threads and their stories and many times I can't help but get emotional when I think of those waiting for insurance coverage and I truly hope soon this will all be resolved with all insurance providers and made affordable for everybody and if not I hope the alternate treatments that will come up will be cheaper because in the end we all need to be treated and nobody deserves to be left untreated just because of money.
Posted 4/18/2014 3:09 PM (GMT -8)
Allen, too bad you can't write your blog in a booklet and publish it as support for those contemplating or on treatment...for Dr offices, amazon.com, etc. And possibly a newspaper running column with question and answers. Felt really impressed to share this idea with you..you could use a "pen"name...or
..Enjoy your week.

music
Posted 4/20/2014 9:01 AM (GMT -8)
Hi Allen- I just completed my 90 days of meds with same type 2a and discovered this site. I was becoming fearful reading stuff about post medication anemia symptoms, which I have struggled with since 1st month of meds. Did not have time to catch up on your blog, but I know that few have completed the treatment and that we are the only source of reality on how it is to feel the isolation, side effects and frustration- the support paths through medical sources fall far short with that part!
Healingartist
Posted 4/20/2014 10:36 AM (GMT -8)
Hang in there, Allen. You're on the downhill slide to being cured.
Posted 4/24/2014 10:47 AM (GMT -8)
This is it, I've completed 11 weeks of treatment and this is now my FINAL WEEK! Next Thursday at dinner will be my last dose of Sovaldi and Ribavirin.

I also will get may blood levels and my viral load checked earlier that day though I may not get my VL results for a few days and probably not till the next week or later, thats the way it works in Canada.

After that my next VL test will be the beginning of August and on August 13th I will visit my Hepatitis specialist for a followup at which time I expect to probably have tears in my eyes, probably will be an emotional and very happy day!

I've had many up's and down's since last fall, I have alot greater respect for my liver since this all happened and still have no idea how I caught Hepatitis C but I'm thankful more than words can say for this lifesaving treatment and everybody on this forum who kept me positive through my treatment.

Though I totally disagree with the cost of Sovaldi I am thankful to Gilead that I had the option to be one of the first to be treated with Sovaldi and even more so my wife's insurance covered the astronomical price of this treatment.

I pray that everybody else can soon get all this insurance and government coverage bull**** resolved so everybody can one day be cured of Hepatitis C and live a long and healthy life.


============================================================

"Sovaldi - Everybody deserves this treatment option and it should be made affordable for all!"

Sovaldi + Ribavirin Treatment began February 6th 2014 - 12 weeks of treatment. After 4 weeks treatment VL has dropped from 4.7 Million to *79*
Posted 4/24/2014 11:03 AM (GMT -8)
Wow. Great post. Now you got ME crying too.

ML
Posted 4/24/2014 11:03 AM (GMT -8)
Wow. Great post. Now you got ME crying too.

ML
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