Allen's Sovaldi + Ribavirin Treatment Log

Hello everyone, this thread will be used to document my Sovaldi + Ribavirin treatment over the next 12 weeks and I will do my best to update everyone about *anything* related to my treatment including side effects etc. that I may encounter.

If any of you have ANY questions at all please ask and I will do my best to answer, I am located in Canada so certain things I may mention in this thread may only be applicable to Canada regarding insurance etc.

Patient Details(Some are vague to protect identity)

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Treatment Start Date = February 6 2014

Treatment Length = 12 weeks

Hepatitis Type = Genotype 2

Viral Load = 4.7 Million as of November 2013

Age = 40-45

Weight= 165-170 lbs

Height = 5' 9"

Other medications prescribed = (Epilepsy) + (Pain management)

Health = I walk the dog 30-40 minutes daily as well as do 30 minutes of aerobic activity 5 days a week(Monday - Friday)

Date I learned of infection = Early October 2013 a routine physical revealed a ALT level of 689, after further blood tests it was confirmed in November 2013 I was infected with the Hepatitis C Virus. Alt Levels have been down and up since then and as of 02/04/2014 ALT level was at 329

Support = Wife + Healingwell.com forums

Prescription for treatment = Sovaldi 400Mg(morning only) + Ribavirin 600Mg(morning) & 400Mg (Dinner)

Insurance Plan = SunLife Financial Canada - Public Service Health Care Plan

** 80% Coverage of treatment cost and the extra 20% treatment has been covered by me paying $3000.00 CDN out of pocket


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Here is an image of the one month's supply I was given, in three weeks I will be contacted and the second batch will be sent but I was told this combo of Sovaldi + Ribavirin shown in the photo is valued at about $25,000 because Ribivirin is NOT sold alone my insurance had to also pay for peg interferon and then they separated it for me from the packaging and removed the peg interferon I won't need.

VIEW IMAGE



I took my first dose about 90 minutes ago and so far I feel fine and I am hoping i won't notice many side effects but of course it could take days to notice them and possibly weeks. I was not sure of the amount of blood monitoring that needs to be done with this so I have asked Bioscript who filled the prescription to contact my specialist and ask as the monogram does not give specifics, it mentions weekly. monthly and as well every three months but of course thats my full treatment time so this has to be clarified.

I'm hoping others can also share logs of their treatment also when they begin treatment with Sovaldi so it can help those who have questions about this drug and how it works and affects everybody.

My hope is that Sovaldi and Ribvirin will cure me, I'm not sure *cure* is the word to say but I am hearing the word *cure* more and more each day even though I realize the virus simply goes into remission or becomes undetectable.

I'm also hoping that all drug competitors come on board asap and drive the price of these drugs even lower forcing a pricing war to the point where purchasing Sovaldi or competing drugs might be the same as purchasing antibiotics or at least within the range of everybody's budget.

I look forward to the day of watching TV and instead of seeing a show about the eradication of Polio I will watch a show about Hepatitis and how it has been eradicated!

Stay tuned for updates.....

Post Edited (AllenM) : 2/6/2014 8:22:32 AM (GMT-7)

Ahhhh thanks MamaLama, I just hope I can help anybody here in any way possible and keep them positive until they also have the treatment in hand. I don't want anybody to worry like I did in the beginning and together we can all keep providing support until we ALL have the treatment and are on our way to recovery.

We can and WILL beat the crap out of hepatitis and cure people and this whole money thing will be solved soon I am sure, greedy corporations need to make a bit of money first but lets hope not many more lives are affected while waiting for the prices to drop to affordable levels.

Post Edited (AllenM) : 2/6/2014 8:36:42 AM (GMT-7)

Hello everyone, just to update you all on my first day yesterday and to say everything went fine and really the only thing I noticed right after taking the pills yesterday was I felt a little dizzy about and hour after and then felt tired also a few times during the day.

I should also mention throughout the day my stomach felt a bit tight, sorta like I was always hungry which is not a bad thing so all I did was eat some fruit, banana and some blackberries and then last night I had some pineapple when I was hungry after dinner.

Yesterday I also walked the dog and had a 30 minute aerobic workout that seemed no harder than usual for me to do. I am not sure if any side effects do happen if it takes a bit of time, like maybe after a week a certain amount of Sovaldi and Ribavirin build up and *then* I might see side effects?

If thats not the way things work with these drugs and basically if any side effects should be felt or seen the same day well then I would have to say I am off to a good start and I do not really feel any different.

I also visited my doctor yesterday and asked for a standing requisition for blood to test for all the usual liver stuff as well as testing for platelet count and anything else he thought might be wise and I will take blood tests first every two weeks and then monthly.

e.g.; Yesterday, 2 weeks, 4 weeks, 8 weeks, 12 weeks

Honestly I have to say yesterday was one of my most positive days in a long time! I could feel myself smiling and none of the negative thoughts that used to bother me were happening and just knowing I am taking the meds have sure changed my mindset

I spoke with someone from the Hepatitis support group in my city who seemed totally surprised I had the Sovaldi in hand and started taking it yesterday, my specialist had not contacted them as apparently they do that so the support group can arrange all my blood tests etc. but honestly my wife and I took it upon ourselves to do as much as possible as my own specialist told me int he first week of 2014 while doing a followup for my biopsy that

"You will be prescribed Peginteferon and Ribavirin and will begin treatment in three months, you won't be able to get Sovaldi for 2-3 years I assure you and for now that is your ONLY OPTION"

As mentioned before, the wife and I would not take that as our only option and did our own homework and the DIN# my specialist said was not available we found, the insurance companies she claimed would not claim insurance...well they did!!

Short and sweet, with all due respect to doctors and nurses and specialists as a patient please don't be afraid to do your own homework or get a second opinion because had my wife and I sat back and accepted my specialists words I would have been suffering through the *other* treatment in three months... a small bit of homework and persistence by my wife and I paid off and we did what in my opinion was the stuff my specialist was either too busy to do or too lazy to do and regardless their really is NO excuse.

Like I said the person from the Hepatitis Support Centre that called me last night was blown away I actually had the Sovaldi in hand and had taken my first dose, arranged all my own blood tests etc...I guess they usually do this and were amazed I did everything myself with the wife so again DO NOT trust doctors/specialists to handle or do anything if you are able to do it yourself...my fricken specialist didn't know the DIN, didn't know it was approved in Canada and also never heard of Gilead Momentum program but I did? Doesn't this all sound just a bit odd!

peachesandcream I hope that Great West Insurance can help you in some way, these insurance companies need to all get on board soon otherwise patients will soon move to different insurance providers if they can to get to the coverage.

*This post turned out way longer than I wanted, I just can't stress enough to patients in Canada or the U.S that YOU need to also make phones calls and don't assume your doctors and specialists will be doing it as much as you hope and by you calling Gilead or your insurance and hounding them won't hurt anything...Gilead WILL send all the info to your insurance provider and also be on them to provide coverage once you start the ball rolling!

I want you all to get this drug asap so please make the calls to your insurance and to Gilead, your insurance might say "We don't cover it just yet" at which point you mention that other insurance companies are providing coverage so can they give you an estimate as to when they also plan to cover it....its doesn't hurt people, just keep harassing them to cover it and the tides will turn!

Post Edited (AllenM) : 2/7/2014 8:38:27 AM (GMT-7)

Hey Allen,
Been looking at a lot of forums lately and came across this thread. Felt inclined to join and say hi since we appear to be twins :)
Here's some of my info in the same format as yours ( I didn't have to change much). I also will have to test at the same intervals.

Treatment Start Date = February 4 2014

Treatment Length = 12 weeks

Hepatitis Type = Genotype 2

Viral Load = 4.15 Million as of January 2014

Age = 40-45

Weight= 170-175 lbs

Height = 5' 8"

Insurance = Blue Shield, California. Used the Sovaldi My Support Path coupon and paid $5 through CVS Caremark mail order. Would have been $115 without coupon. In the process, I talked to the My Support Path people and the guy told me that the coupon is good for up to $18k. If you use it up and needed more, they have organizations they can refer you to in order to get additional help.

Prescription for treatment = Sovaldi 400Mg(morning only) + Ribavirin 600Mg(morning) & 400Mg (Dinner)

Day 1-3, felt great. Day 4 (today), somewhat funky, but definitely manageable. Thinking of the goal makes how I have felt today not really matter. I'm sure it will get worse, but I'm not worrying about tomorrow yet :)

Will be following your thread for sure!

Post Edited (steve-ca) : 2/9/2014 2:55:58 AM (GMT-7)

@steve-ca

Welcome to HW.

You would be welcome to start a thread of your own or continue on Allen 's Sovaldi post.

Glad you are getting treatment.

I pray 2014 is the the year we can say Hep C WILLbe curable.

MamaLama

The last two days I have felt somewhat nauseous and tired, I'm not sure if its the meds but I am usually not this tired or sick feeling for hours at a time and yesterday I had to sleep in the afternoon for four hours and then after dinner kept passing out on the couch until my wife told me to just go to bed and sleep it off.

I slept 4 1/2 hours last night and I'm awake now, again my stomach has this tight feeling all the time and I'm tired BUT if this is all it will take to eradicate this Hepatitis C from my body I will still it out for the full three months without a problem.

I am lucky I work as a consultant/contractor and work from home 98% of the time so if it takes me a week or something to get used to it I will.

Let me be clear this comes and goes, one minute I feel totally fine and watching TV laughing and then an hour later I feel sick...like my stomach feels sick and high up in my throat I feel an odd sensation like I am about to get sick and then it passes. As for the sleeping I think I will get used to it and deal with it.

Also, in the past I mentioned I have had night sweats the past couple of years that came out of nowhere, I am not sure if they are related to the Hepatitis C and my doctor has no idea what is causing them but regardless the last few days I am sweating a fair amount...this also happened on and off without the meds so by the end of treatment we will see if this is something that maybe disappears or happens less.

Mentally I am feeling great and I am very positive, I know the three months will pass very quickly and I don't even worry about it at all I just need to be vigilant about taking my pills on time, keeping myself as healthy as possible and eating as healthy as possible and of course keeping myself mentally happy because really this is so much better than the other option of Peg-interferon+Ribavirin I was offered on January 8th as my only option and had my wife and I not done the homework thats what we would have been taking.


Thanks again Steve for sharing your info and *please* make sure to start another thread with your info just like I have because I really want to follow your treatment also as you are about the same size and age as me and your treatment is the same so its *possible* any symptoms either of us has the other may have OR it will go to show that though people may physically be almost the same in size and age one may suffer symptoms another one doesn't.

**Note I track my sleep and exercise with a $99 device called a FitBit www.fitbit.com, before bed I press and hold a button on the device and it start a timer and when I wake up I press and hold and it stops it and all this gets logged to an online account. The FitBit also tracks the amount of steps I take in the day and I clip it on the corner of my pants pocket and my wife clips her's on her bra and we both wear them daily.

I also have a scale from Withings to track my body weight www.withings.com/en/bodyanalyzer I find it much easier when I hop on each morning and it syncs the info to a website or my phone and i have a chart showing everything over the years. Cost about $130

And of course last year for Christmas I bought myself the blood pressure monitor for about $140 and once a week I use it to record my vitals www.withings.com/en/bloodpressuremonitor I figure that in between all the times I go see the doctor if I use this at home its a good way for me to track everything and again it keeps historical records of all my readings I do.

They are a excellent devices if you want to go back and see how active you *really* are each day and how much you really are sleeping etc, I bought us each a FitBit on Valentines last year and we both think they are great! Personally I think its great we can track all this stuff this easy and have it all sync with our phones or a website that we can see and it makes it simple to forward all the info to our doctor via email should they ask.

Post Edited (AllenM) : 2/9/2014 3:16:38 AM (GMT-7)

Thank you for that info Steve and perhaps I will go gets some Ginger Ale this morning as I want to avoid taking any sort of medications if possible. The sick feeling comes and goes and I will feel fine for hours and then all of a sudden it comes on, even though I work from home it makes it hard to feel like doing anything if you feel sickness coming on.

I felt the same sort of sickness with pain medications years ago when I broke a hip and eventually my body got used to it so I'm hoping the same...regardless I will tough it out and try some ginger ale and see if that helps.

Allen, Hang in there. You are doing well. I forgot what day this day is for you. I have only had nausea on the same treatment as you twice - first time when I tried to swallow all three ribavirin at the same time - not a good thing..lol, - and another with my lactulose which I don't believe you take - learned to take it after eating by about an hr instead of before eating.... My doctor has given me a great prn - dissolves instantly on your tongue and it is so quick I couldn't believe it. less than 2 min. action. Don't believe either med otherwise for treatment has caused that for me. I know you said you weren't interested in another meds -if you want to ask your dr about it, this one has been a blessing for me with its instant action. Just let me know. For me, I have to concentrate on taking meds on time and I do have to set many alarm times - including my he meds, eating something before am and pm meds - I know they say it doesn't matter, but it works for me and many others in case it may help you. After I do that, I have to get my mind off myself or I will drive myself nuts looking up info, se possible, etc. I welcome any suggestions you have for me. Ending second week - ribavirin and sovaldi - also continuing xifaxin and lactulose...no se r or s...no more labs till 17th or 18th. music

Glad to hear you're feeling better! Let's hope it continues...
One think you said cracks me up, though. We've already discussed how oddly similar we are, right? Well, I've got 3 bunches of bananas and a box of yogurt that has been my main staple for pill time. I'm not a big morning eater, either.
about the stomach thing- do the "cramps" go away briefly after eating? I had an identical thing (it sounds like) a few years ago, if so. Felt like I was hungry. Ate and felt better, but it came back a short time later. It came back sooner and sooner each time I ate until it was pretty unbearable.
If so, when that happened I was out of town at a training. Did some online research and found some info that made me go buy some Zantac and Pepto. And it totally worked after suffering for 2 or 3 days.
I know you don't want to take anything if possible. But maybe just try some Pepto if it comes back? I'm definitely not trying to replace a doctor, but that's an easy thing to try.
It might be like a stress/ulcer/not related to the meds at all thing. I don't really know what it was, but I haven't had it since.

Allen, I haven't heard of this snacking thing with the new treatments. Is your weight changing? Hoping the stomach aches ease up soon. Did you ask your doc yet? Or the nurse practitioner in their office? We get lots of help there. Still cheering you on! Carol

Day 5 today and I am feeling much better, I didn't have the sick feeling I've had the last few days when I woke up so I have no idea if that all was a temporary thing while the meds got into my system but I feel 100% normal today just like I did before beginning treatment.

EDIT: I also just called my doctor asking if they had my blood test results from February 6th the day I began treatment and again my ALT level has dropped to 291 since I had blood taken January 27th and on that day my readings were 329 for my ALT. When diagnosed in October my ALT was at 689.

The *only* thing that possibly changed in that time frame was I have a bit less stress and since October when I was diagnosed I changed from the Splenda sugar packets and Coffee Mate to using Stevia and Costco Honey for a sweetener and real half and half cream.

Changing to Honey for a sweetener has not caused any weight gain and each large coffee I have I use two tablespoons of Kirkland/Costco honey and one packet of Stevia along with a bit of half and half creamer.

I typically have 2-3 of these coffees a day, I have one with caffeine and any others are caffeine free. I have no idea if the honey is somehow helping with my ALT level but its probably worth mentioning as my diet and everything else is virtually the same.

Post Edited (AllenM) : 2/11/2014 10:54:36 AM (GMT-7)

It's great to hear you feeling well and in great spirits, AllenM- thanks for the updates!

I woke up today and again I feel ok and do not feel sick or tired but last night after doing my workout at around 5:30 p.m I had a bad headache that was annoying me and I just dealt with it and won't take Advil or anything like that and went to bed at 9:10 p.m

I woke up this morning around 4:15 a.m and still have this darn headache, not sure if this has anything to do with the medication but otherwise I am feeling good and positive.

It was last Thursday morning February 6th I began the treatment and other than the few days of being tired and having stomach cramps and a sick feeling I feel fine now.

If anything I feel GREAT knowing Week 1 is over and it wasn't so bad and hopefully all the rest of the weeks will be similar. Yesterday was odd because I seemed more alert and feeling good than I have for months! I can't say for sure if this is the medication working or if possibly mentally I am becoming very positive about all of this...maybe its a little of both. I feel really good and can feel myself smiling throughout the day ;-)

For anybody reading this log in the future, don't let my few crappy days I've talked about worry you, this treatments side effects are entirely tolerable and myself and others that started treatment around the same time are not really having side effects at all(Nothing serious anyways) and if anything we all feel pretty good but want to log things in case someone else in the future has similar side effects they will have comfort knowing someone else had them also and it wasn't so bad...in fact the guy kept working out, smiling and walking his dog