Author Topic: Viekira Pak with Riba started February 17th (Read 28497 times)

sapphire101 · « **on:** February 17, 2015, 10:53:49 pm »

Received my med box via Fed Ex yesterday and be aware that the Fed Ex drop off time is very loose. Luckily I stayed home all day in anticipation because they came 3 hours earlier than scheduled.
There was other silliness that makes you wonder how these meds ever get to us at all such as having the wrong instructions included (harvoni instructions for my viekira pak) and today I received a letter from Express scripts stating that they were sorry but I would not be receiving ribavirin because it is not approved for sovaldi. (?) Interesting because I received a large bottle of ribavirin the day prior along with the viekira pak.
None of this stopped me from starting my treatment today and the med packs are actually color coded and very self explanatory.
I also reached out to my nurse navigator through the ProCeed call line. We will talk again tomorrow night for a more detailed discussion.
At one point today my head felt a bit stuffy almost like how it feels right before the common cold sets in and I realized this might be the meds. I also feel a tiny bit itchy right now. Just started feeling this in the last hour or so. I hope this is the medicine working and not my over active imagination!
I plan on posting here once a week to maybe help a bit with some of the others who are starting with this alternate route. We are only 10% of the Class of 2015 (per recent news article) and we have some different struggles.
We do all however have the same outcomes of high rates of cure and this is to be celebrated!
kindest regards to you all.

Red Hen · « **Reply #1 on:** February 19, 2015, 07:05:56 pm »

Sapphire, I came by to visit you! and other Viekira Pak with ribavirin users. Express Scripts sounds as disorganized as ever. I'm glad you found a nurse navigator to help you. I had weekly phone calls with a drug study nurse, now every other week. She is just a lovely person and very knowledgable. I hope you have a nurse that you feel comfortable with. You just started the meds and are already itchy? Sounds like me. Ask the nurse or your doctor if you can take benadryl. It saved me from going nuts! There are other drugs that stop itching, too, that you might be able to take. Take whatever anti-itch meds they approve. I was worried about taking so, so many pills but just do it. It seems like forever when you start but the 12 weeks does end. I experienced the itching for two more weeks after finishing the drugs. It takes time to leave your system. I'll be checking in with you. Wishing the best to us all!

sapphire101 · « **Reply #2 on:** February 19, 2015, 10:33:26 pm »

Welcome Red Hen.
Today (day three) my itchiness is really just background noise. Not at the level to cause me loss of sleep or other such misery. If it escalates at all I will follow up. I am also a bit more tired than usual and I am doing my darndest to keep my boundaries and not stress the small stuff or overdo it.

Red Hen · « **Reply #3 on:** February 20, 2015, 10:57:14 am »

Sounds good!

sapphire101 · « **Reply #4 on:** February 22, 2015, 06:26:01 pm »

Insomnia has kicked in a bit which is hard to rate because I had this preexisting, but it is at a different level. Hard to fall asleep and hard to stay asleep. My mind is buzzing all night. Hope it means this stuff is working.

Red Hen in traveling around this forum I have found a core group of us in all stages of the viekira pak journey.

Club V members:
Red Hen completed and due for final in April.
hepctreatnow, RandoArcher, skycatcher all considering.
Dog Dave approved and will start soon.
me, ekaraena, and aveinc all currently on treatment.

I am sure there are many more reading and following and I know our words and experiences are helping.

llory86 · « **Reply #5 on:** February 23, 2015, 09:44:37 am »

Hello everybody
I''m sharing my father's jouney on Viekira in the post "Anyone on Viekira Pak or completed Viekira Pak? "
I choose the wrong post sorry and I can't delete this.

Red Hen · « **Reply #6 on:** February 23, 2015, 04:51:19 pm »

Hi, all. My 12 week blood work is due mid-April. Then, I will have 24 week after that. Sigh. Takes a long time. But, I've probably had HCV for 40 years. $:-\$

sapphire101 · « **Reply #7 on:** February 23, 2015, 10:27:18 pm »

No worries llory86 about any faux pas, everyone is very nice on this forum and if needed the moderators will jump in to help anyone new.
I read your dad's journey on the other post with great interest and I am happy to hear that he has no side effects. When the package insert tells me that 30% of people will experience a certain side effect I never stop to think about the positive spin on this is that it also means 70% of people will not.
I will add llory86 to our growing Club V list.

Red Hen clarification request -you were undetectable at end of treatment correct? Then you will have a 12 week follow up lab in April and now also another in 24 weeks. Do I have this right? I have no idea yet my lab schedule will be yet.

Red Hen · « **Reply #8 on:** February 24, 2015, 10:42:15 am »

Yes, that's right, Sapphire. Also undetectable at 4 weeks post treatment. Will be tested again on April 9th, actually. Also supposed to be scheduled for a liver scan the same day. I'd better check on time, come to think of it. That will be 12 week. Then, they test me again 12 weeks after that. I'm on a 5 year drug trial study so the testing goes on and on. This is good but also gets confusing when scheduling other stuff.

sapphire101 · « **Reply #9 on:** February 24, 2015, 10:43:54 pm »

Got it Red Hen that is why all the lab tests. You are committed for 5 years ...are most clinical trials over this long a time line?

As for my start of week Two:
Physically all is well. Most of my stress is coming from ongoing insurance craziness not side effects.

Red Hen · « **Reply #10 on:** February 25, 2015, 11:01:42 am »

Glad you are not having trouble with side effects, Sapphire. Sorry the insurance is stressful. Insurance is fine if you don't have to use it, right?
I'm on the phase 5 study of the Viekira Pak. I don't think most drug trials go on this long but don't really know. The frequency of doctor visits and lab tests decreases after 24 weeks post treatment undetected.

sapphire101 · « **Reply #11 on:** March 03, 2015, 01:22:53 am »

Starting week 3 and I have learned a few things at my doctor visit today:
My Lab draws will be at two weeks, four weeks, and end of treatment.
Today I had the basics plus a VL draw. The quantitative will take a week to turn around.
Accredo will be taking over for Walgreens as my Express Scripts specialty pharmacy. I have to get all my information transferred including the ProCeed coupon information and fax another Rx from my provider to cover the next 2 months. This would not be half as stressful if these folks would return calls or better yet answer.
I was cautioned today to stay out of the sun. Turns out ribiviran can have a bad reaction to sun and cause a 'sandpaper' like rash that starts on the sun exposed areas and then spreads to your whole body. Is this what you had Red Hen? Per my Doc once you get it - it does not go away until after treatment when the med clears. YIKES. No one had told me about the sunshine issues and this is not listed on the bottle.
Hopefully by next week I will have some labs to report.

Red Hen · « **Reply #12 on:** March 03, 2015, 04:56:52 pm »

I hadn't heard that part about staying out of the sun, Sapphire. The rashes I've had are more like hives, they come and go. Irritated by heat. Also a rash on my head and neck that reminds me of contact dermatitis. Probably irritated by sun. That also came and went, moved around quickly. Sounds like you are still doing well and getting good medical care. Hope all the pharmacy stuff gets straightened out soon!

sapphire101 · « **Reply #13 on:** March 03, 2015, 09:30:24 pm »

Staying away from sun exposure was news to me too Red Hen. Seems like it does have an impact on your past miseries too. You don't have them anymore correct? I was told if the rash does kick in it is with me to stay until even a month post treatment so needless to say, I am taking this serious.
I think I have everything set with the Walgreens Accredo transfer of care. Of course the proof of this will be getting my next med drop off before this current month runs out. That is when I will be stressin' again. I did have the pleasure of working with a truly competent Accredo telephonic staff member. She did not keep me on hold, understood everything I was saying and took care of business. Good to know that it CAN happen.

Red Hen · « **Reply #14 on:** March 05, 2015, 06:22:44 pm »

Wow! A good phone experience with Accredo! Congratulations.

Sapphire, I have always been prone to skin rashes that come and go. Very sensitive skin. I had itching problems during the whole treatment and afterward for 2 weeks. I still get itchy thinking about being itchy! One o.t.c. Benadryl at bedtime worked 24 hours for me. But, my primary care doctor told me last week that she does not like Benadryl side effects and she would not have chosen Benadryl. My drug study doctor, infectious disease specialist, chose Benadryl. It worked for me, is all I can say.

sapphire101 · « **Reply #15 on:** March 11, 2015, 10:12:19 pm »

Week four and I have been on a pharmacy roller coaster.
I will spare you all the gory details and skip to lessons learned and maybe others who follow can benefit.

1. Keep a journal of all your calls and conversations. Dates, subject outline, and names.
2. Don't be embarrassed to ask someone to repeat a name and don't be embarrassed to ask them to spell it. Ask for last names too. Express/Accredo will not always give full names, but will give initials.
3. If you get into trouble use the magic express scripts email. This email address is staffed 24/7 and they get back to you with in one hour. Maybe just to say they are working on it and work on it they will. Address to follow.

Side effects- who needs to worry about side effects when the pharmacies are already giving me huge pain! Seriously, no sides except for ongoing low level itchy dry skin not a big deal in the grand scheme of things.
My labs are doing well too.

Shout out to Red Hen and Lynn K. for all the support on the side.

Life is good.

sapphire101 · « **Reply #16 on:** March 11, 2015, 10:15:06 pm »

Drum roll for the magic email.......

expressrxhelp@express-scripts.com

Red Hen · « **Reply #17 on:** March 11, 2015, 10:27:08 pm »

So, you're doing alright? Getting your pills? Glad not many side effects!

sapphire101 · « **Reply #18 on:** March 11, 2015, 11:55:15 pm »

Yes Red Hen my second round of 28 day supply arrived today. What a relief. With exception to the pharmacy drama I am doing great! With my virus suppressed and my liver calm I feel better than I have in many years. Maybe this will be the new normal after my treatment is over?

Red Hen · « **Reply #19 on:** March 13, 2015, 06:25:04 pm »

I hope so! That's great!

sapphire101 · « **Reply #20 on:** March 21, 2015, 12:15:27 am »

Week Five and I am in the sweet spot.
Plenty of medication, few side effects, and recent lab = HCV not detected.

Red Hen · « **Reply #21 on:** March 23, 2015, 02:28:10 pm »

Hooray! That's what I wanted to hear!

sapphire101 · « **Reply #22 on:** March 29, 2015, 07:24:52 pm »

Tomorrow I am half way through my treatment. 42 days past and 42 in front of me.
Celebrations:
Medical Science found a way to treat HCV.
2015 will be the year of the cure and HCV will soon be no more
I was able to get access to this miracle medication.
I have a supportive Doctor, Spouse, and dear Friend on this journey.
I found this Forum and the help here and good people continue to amaze me.
This week Accredo called me and initiated the medication delivery. Fingers crossed.
This will be my last 28 day shipment and then I am done.
My side effects are tolerable.
My labs are fantastic.

So why do I have a case of the 'half-way-there' blues???
Maybe because this is a plateau and while on one hand the time is whizzing by and on the other I feel like I am walking through peanut butter on some days. Maybe because I have so much medicine circulating in my body that it is weighing me down. 8x42 = 336 pills and that does not count my multivites etc.

I also had three different colleagues on three different days say to me "are you OK you look tired?" and this must mean that my 'nothing is different about me' approach is a bit of a façade. I am tired. What is wrong with me? Hopefully after my meds arrive and I enjoy an Easter Holiday my spirits will improve.

Red Hen · « **Reply #23 on:** April 02, 2015, 09:29:04 pm »

When I was half way through I felt the same way. Some days are exhausting for no special reason and other days are fine. You probably are tired and need an Easter break. Congratulations on doing so well! It is o.k. to rest and to be tired. Your body really is going through a lot. Not to mention emotional ups and downs which are also part of the process. Have a beautiful Easter and drink plenty of water!

Philadelphia · « **Reply #24 on:** April 02, 2015, 11:07:58 pm »

I'm really tired atm too Saphhire. I'm not as far through as you and I have riba added to the mix. But as its really the only difficult side effect so far, I think I'm doing okay.

It's Good Friday here and I've spent all day on the lounge with the cat. We are binge-watching Bloodline.

sapphire101 · « **Reply #25 on:** April 03, 2015, 01:26:15 am »

Thank you both Red Hen and Philadelphia for the encouragement. It is good to learn that this also happened to Red Hen at the halfway point. Maybe it happens to everyone and it is only through this sharing on this forum that we can find out about these things. Now you know Philadelphia and you can prepare yourself. Get some marathon movies ready and settle in and know that this too shall pass. How long did it take to pass Red Hen?

I am a bit better even just hearing from you two helps a huge amount. We are all on the same regimen of Viekira and Ribavirin. Red Hen you are done and awaiting final confirmation soon, I am half way there, and Philadelphia you are starting the journey. Let us stay in touch please.

My medication arrived today without incident. My final shipment and I have had so much Rx drama that it is almost strange. When I opened the box I was expecting to see the wrong meds or some other craziness. But no, there was my usual blue/orange/white boxes and the large riba bottles. Whew what a relief.

Cheers to Club V!

Red Hen · « **Reply #26 on:** April 03, 2015, 06:32:06 pm »

Sapphire, I hate to tell you that I just slogged through the 2nd half of pill taking. I actually felt worse and was annoyed about it. Cranky, tired and itchy. It didn't get better until a couple of weeks after finishing the treatment. But, I was super happy to be finished, finally!! Now, I will have my 12 weeks post treatment appointment next week. It keeps getting better! Part of that could be because the weather is nicer now. Seasonal allergies aside, I feel great! Don't know what the outcome will be but I'll let you know when I know. Meanwhile, You and Philadelphia, have a lovely weekend!

Philadelphia · « **Reply #27 on:** April 03, 2015, 06:46:14 pm »

Thanks Red Hen. It's raining over here, which in the country is something to be celebrated not commiserated about. Like my farmer FIL says, you can make money out of mud but you can't make anything out of dust.

I've spent a very relaxing 24 hours firmly ensconced in front of the tv with NO GUILT WHATSOEVER. There are a million things I should be doing but they'll be there next week, so they can wait.

Because I haven't been doing anything (I was going to write "anything much" then, but I realised I haven't been doing ANYTHING) I can't gauge how my energy levels are going.

I have to say though, it's been a heck of a start to the year, so a break is welcome. I spent 6 weeks in the US and Canada over the Christmas break, came back to the news I had been approved for treatment - the day I flew into Sydney, no less - what a welcome home! Then back to work, back and forth to doctors, more work and finally a break.

I have two important commitments during these two weeks, but apart from that, I am my own boss.

Red Hen · « **Reply #28 on:** April 06, 2015, 07:22:37 pm »

That all sounds good Philadelphia! Where I live in New Mexico, southwest U.S., we practically worship rain and snow! We've been in a drought for many years. The new normal, I guess. Glad to say this year is better, moisture-wise, than last. Glad you are able to enjoy resting!

Philadelphia · « **Reply #29 on:** April 06, 2015, 07:35:44 pm »

Not only did I get to enjoy resting, I got to enjoy the 46ml of rain that came as a bonus. It gets terribly dry here so any rain is welcome rain.

And I am still on holidays! Extra special bonus.

sapphire101 · « **Reply #30 on:** April 13, 2015, 11:09:32 pm »

Starting week 8 which means only 28 days to go...maybe I should switch to counting the days now? for some reason checking off the weeks gives me greater comfort. By the way: I did sorta skip right over week 7. I did not like being stuck in the middle one bit and I fell into a funk and just decided not to post again until I was good and over it.

Over it I am. I had my 8 week labs today and will change my signature accordingly when the results come in. My lab tech mentioned that 'she is drawing a lot of these counts now' and we discussed the miracle breakthroughs for HCV. She was thrilled for all of us and had recently been through a needle stick exposure herself. She was glad to know that if it had turned out to be anything there would be treatment available. All in all it felt good to talk about it and find out that there are people out there, some we don't even know on our health care team that are rooting for all of us.

Med update: My physician gave the approval for me to take 25mg of Benadryl/diphenhydramine nightly which has really helped both the itchy creepy crawlies and the insomnia. This benefit has spilled over into the next day too decreasing symptoms and helping my quality of life.

Weather report: Raining buckets

sapphire101 · « **Reply #31 on:** April 21, 2015, 11:32:24 pm »

Week Nine/21 days left.
Really not much change to report with side effects. I have added more inversion poses (head below the heart) to my daily yoga stretch. My rationale: if there is any time to get my circulation moving that time is now. Inversions reverse gravity, increase circulation, enhance mood, and get the body flushed and ready for my medication to do what it does so well. Go get 'em!!!

Philadelphia · « **Reply #32 on:** April 21, 2015, 11:57:50 pm »

Wonderful news, Sapphire. Go get 'em indeed

Red Hen · « **Reply #33 on:** April 25, 2015, 10:01:37 am »

Sounds good, Sapphire! Keep things moving.

sapphire101 · « **Reply #34 on:** April 28, 2015, 12:02:39 am »

14 days left to go and I can hardly believe I am this close to finishing.

Travel talk.
I have had two occasions to travel to other states and cross time zones since starting treatment and it did give me some challenges. Seeing my bag (containing a weeks worth of meds) go through the airport security screening was an anxiety rush for sure. Even with all the appropriate labels and Rx etc I just don't like them out of my control for even a second.
I learned to keep a bag of crackers and bottle of water with me in case it was time to take my meds, but I was not in a place where food was being served.
I was also very careful to take my pills away from the hotel bathroom sink or other random places because if that pill were to bounce away I would have chased it, dusted it off and taken it no matter where it had landed.

Red Hen · « **Reply #35 on:** April 29, 2015, 09:50:31 pm »

I know what you mean. Those pills are such a part of our lives for so long. When you finish taking them it feels weird not to. Also feels very good! Liberating.

sapphire101 · « **Reply #36 on:** May 14, 2015, 12:38:24 am »

My End of treatment post.
I almost don't know where to start on my final 'on hep c treatment post' such a milestone!
My 12 week journey is completed and I saw my doctor this week for the final check in and lab draws. Labs are good and doctor feels the fatigue will lift first and the skin and insomnia side effects will take longer to be eliminated. One to two months is the estimate.

Hashtag alert: #grateful #humble
Grateful to have received this groundbreaking new treatment and humbled by the people I have met along the way- much love and respect to you all.

Soapbox alert: Some insurances are actually tightening restrictions on Hep C med approvals in anticipation of the other financial shoe to drop when new meds are released and prices are lowered. They are delaying to get better deals and this tactic is with out any consideration of the people that they are harming. This means many people with Fibrosis level 4 and even on liver transplant lists are being delayed. Beyond unethical and sliding right into criminal.
All of us need to continue to be vigilant and watch the political and news topics to stay informed. This may mean coming out of our safety of anonymity if we can stand together and help change this.

Some of the good health habits I have developed over these 12 weeks I am going to take with me into the future. Water three times a day. New habit and I like it. Skin moisturizers morning and night, not much trouble and I am going to continue. Love many of the health eating and exercise topics here and I have some new recipes and food tips- thank you. These too will go with me.

The online support I have received...hard to put an estimated value on what I have found here. Actually getting on treatment at all was because of advice and news updates I received in this forum community. Thank you.
I have noticed that there are a few more Vikierans joining the forum - welcome!

My next lab will be the 12 week post treatment and that is when my doctor says it is time to celebrate. There will be a 24 week post next and then I will be given permission to use the wonderful most anticipated word we all hope fore -CURE.
See you on the other side.
Blessings to all.

Philadelphia · « **Reply #37 on:** May 15, 2015, 02:07:36 pm »

Wow Sapphire. You're done! That's amazing. So happy for you.

Please report your SVR12. And the weather

.

sapphire101 · « **Reply #38 on:** May 15, 2015, 07:54:10 pm »

Philly my SVR12 draw date is already scheduled at the lab and circled in red on my calendar. This critical mass important news will be posted for my forum family the minute I know the results.

Weather report: Partially cloudy with a 95% chance of clearing soon!

Red Hen · « **Reply #39 on:** May 16, 2015, 07:52:32 pm »

Hooray, Sapphire! Loved your post and love this forum for helping so many find treatment. Expecting the best for you!

sapphire101 · « **Reply #40 on:** August 04, 2015, 09:50:23 pm »

Update: 12 week SVR today.
I am officially UNDETECTED 12 weeks out after end of treatment.

Philadelphia · « **Reply #41 on:** August 04, 2015, 10:06:14 pm »

Rock star!

Phoenix · « **Reply #42 on:** August 04, 2015, 10:58:38 pm »

Congratulations!!!!!!

Veni, Vidi, Vici! You've won the battle!
Hard to believe the miracle of these new drugs. It's like a dream.
Blessings and the Best to you and your new lease on life.
Make the most of it!

Phoenix

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Author Topic: Viekira Pak with Riba started February 17th (Read 28497 times)