Author Topic: About to start treatment (Read 17384 times)

MickD · « **on:** January 07, 2015, 01:01:25 pm »

First off I want to thank the people that pointed me to the discount coupon card for Sovaldi. Made my monthly co pay drop from $200 to $5. Thank you.
Everything has been approved and the medicine is being shipped to me and I will begin treatment on Friday. Genotype 3 taking Sovaldi and Ribaviron for 6 months. I have done a little reading through some of the posts here, but it is somewhat overwhelming and a little nerve racking. Honestly I don't know what to expect. Am I going to feel worse than I already do? Less energy, more tired, no stamina? Kind of scary. I plan on taking my 3 ribaviron in the am and then the second 3 in the pm with the sovaldi. My doctor said it didn't matter when I took it and my thinking is if it makes me tired, hopefully a portion of that time will be while I am sleeping. Good idea or not? I know I am supposed to drink a lot of water. Any other helpful suggestions or ideas? I have to say that I want to get this over with, but am nervous about what is ahead. Hopefully it won't be that bad and I will be fine.

CE · « **Reply #1 on:** January 07, 2015, 04:42:41 pm »

Welcome to the forum, MickD! I too am a G3, and I am in my 10th week of Sovaldi and Ribavirin. Not quite half way there, but making progress! I was very apprehensive also when I started. So far, my only problems are dryer skin and hair, occasional tireness, but not horrific, and not sleeping well. My hemoglobin also dropped significantly, but is going back up now. I work full time, stay as active as possible, and drinks lots of water. I know everyone handles the meds differently, so you will read lots of other experiences that will help you in your journey. My 8 week blood work showed my viral load as undetected and all my liver functions were normal. When you get that news, it makes you more determined than ever to defeat this beast! I have found everyone on this forum to be very positive, supportive folks who are all going through the same journey. Everyone has your back! Best of luck to you, you will do fine! Keep us posted with your progress. Take care!
Chris

MickD · « **Reply #2 on:** January 07, 2015, 05:31:03 pm »

Thank you for the reply. I like hearing from others going through the same situation I will be going through.

petra · « **Reply #3 on:** January 08, 2015, 10:26:56 am »

Hi Mick,
today is my last day, of 12 weeks, of Sovaldi and Ribavirin.[ I am type 2.] I read up a lot and was prepared for the worst. The worst didn't happen! My hemoglobin dropped but not enough to cause too much concern. The stress of the anticipation of problems may have caused some problems too. I definitely had some all over mild skin itchiness and my eyes seemed a bit dry sometimes. My emotions were heightened and my temper was shortened. I'm guessing that was the mechanics of the drugs along with the stress of being reminded that I was trying to cure the Hep C. where previously I wasn't completely focused on having the disease. At any rate good luck. This treatment is far better than what was available for our genotypes in the past.
Cheers,
Petra

MickD · « **Reply #4 on:** January 08, 2015, 11:06:36 am »

Thank you for the reply. Is the Hep C gone now that you have finish treatment? How do you feel now compared to when you started? I've read a few people who have said they had problems sleeping during treatment. Is it problems falling asleep or staying asleep?

Thanks again.

CE · « **Reply #5 on:** January 08, 2015, 12:12:23 pm »

I have no problem falling asleep. But I wake after 2 or 3 hours, look at the clock and fall back asleep. This continues until my alarm goes off. I don't view it as insomnia as I have no trouble going back to sleep, just staying asleep!

Red Hen · « **Reply #6 on:** January 08, 2015, 01:14:09 pm »

Hi, Mick. Glad you found affordable treatment! Don't worry too much. Just keep putting one foot in front of the other and eventually you'll get there! That's what I tell myself.

MickD · « **Reply #7 on:** January 08, 2015, 02:30:23 pm »

I will. Treatment starts tomorrow.

Thanks

petra · « **Reply #8 on:** January 08, 2015, 05:04:36 pm »

Hi Mick,

I went from 3.5 mil to "18" by week 4 [I so wanted to hear undetected], so my doc did one at week 6 to reassure me. So I was undetected at week 6 and at 8. I am hopeful that week 12 will be the same.

Sleep is a bit different during treatment. My experience has been pretty much exactly like CE's. I wake up and get back to sleep easily, although I must admit to listening to podcasts, downloaded to my phone, if I start worrying about stuff... but I always fall back to sleep within 5 or 10 minutes.

Tomorrow is my first day without Sovaldi or Ribavirin. That part is over.

Cheers, Petra

MickD · « **Reply #9 on:** January 08, 2015, 05:26:12 pm »

That part is over, what is next?

MickD · « **Reply #10 on:** January 08, 2015, 06:49:12 pm »

I am going to be taking the Ribavirin am and pm and the Solvaldi once a day. Doctor said it didn't matter when I took it, either am or pm. Any recommendations from anyone or does really not make a difference when you take it?

CE · « **Reply #11 on:** January 08, 2015, 06:51:27 pm »

Congrats Petra on completing the course! May you get stronger and healthier every day and be cured!! Best wishes!

Chris

CE · « **Reply #12 on:** January 08, 2015, 07:00:03 pm »

MickD, I take my Sovaldi and ribavirin at 6 am, and ribivirin only at 6 pm. It don't matter, but I would think you would want to take both the Sovaldi and riba for your first dose. That way you are getting a super "kickstart" since the Sovaldi stays in your system for 24 hrs till the next dose. I also started mine in the morning on my day off in case I had any adverse effects. But I had none! It also helps to set alarms to remind you in case you get busy and forget. I have my phone set. It really keeps me on a consistent schedule! Good luck!

MickD · « **Reply #13 on:** January 08, 2015, 07:05:39 pm »

Thank you all for the help.

petra · « **Reply #14 on:** January 08, 2015, 08:16:22 pm »

Hi Mick and Chris,

for what it is worth I programmed my cell phone to alert me. My schedule was, as yours is Chris, to take my Sovaldi with my first dose of Ribavirin in the morning and 12 hours later take my second dose. [ As it happens that was 6:30 am and 6:30 pm.]

Thanks for the good wishes Chris.
Mick, the next part, assuming my week 12 viral load is still "undetected", will be the wait to see if it holds for another 12 weeks until SVR.

fingers crossed for everyone,
Petra

Red Hen · « **Reply #15 on:** January 09, 2015, 03:50:43 pm »

Petra, my fingers are crossed for you!

MickD · « **Reply #16 on:** January 19, 2015, 04:23:53 pm »

Checking in. I am now into my second week of treatment. I am adjusting to the symptoms of the Ribavirin and Solvaldi and am doing ok. The first couple of days I was taking the Solvaldi in the morning with my Ribavirin, but I was having head pain all day. Not really a headache, more like the front of my head was actually hurting. I switched the Solvaldi to the PM and it seems to have gone away. I am constantly hungry and am eating about 4 times a day, where before I would eat twice a day. I do get sleepy and tired during the day and have some pain in my joints. I am trying to stay active and I take a nap whenever I can. All in all it isn't that bad and I can make it through this, but it will be nice when this is done. Go for my first blood work on Friday, not sure if anything will be drastically different.

CE · « **Reply #17 on:** January 19, 2015, 04:54:11 pm »

MickD,
You will be shocked at the difference in your bloodwork! Im glad you are doing well. Drink lots of water for the headaches. I am half way there! I, too, can't wait for it to be done! I was never a pill person. Never took regular meds, just very occasionally, Excedrin for a headache. Right now I am having more trouble sleeping through the night. Up every 3 hours. I would love to sleep in without having to get up to take pills or run to the bathroom! Lol!
Keep us posted. Remember, you have a lot of friends here all doing the same thing! Best wishes!
Chris

MickD · « **Reply #18 on:** January 19, 2015, 06:56:00 pm »

It is actually nice to be able to read through the posts here and see others dealing with the same things as me. I've got to remember the water. I do ok for a day or 2 and then I start to forget.

kate0b1 · « **Reply #19 on:** January 20, 2015, 06:08:06 am »

@mickd, i am the worst with the water, this past w/e i did not bring enough (its weirdly harder on the w/e) and felt so crappy by the end of the eve. I have started carrying around my water bottle with me everywhere i go (has to be refilled 5 times lol).

kate

MickD · « **Reply #20 on:** January 20, 2015, 09:57:17 am »

I am going to have to buy bottled water for the treatment. (I know, not good, but I will at least recycle). If have them available I wind up drinking one after another. I have some problem with getting myself to carry a bottle around and keep filling it. I am much better at grabbing a bottled water, downing it and then grabbing another shortly after. Not good at having to carry something around all day.

Red Hen · « **Reply #21 on:** January 20, 2015, 10:34:01 am »

I am the same way about the water. Thanks for the reminder, MickD and Kate0b1!

CE · « **Reply #22 on:** January 20, 2015, 12:09:53 pm »

I have a case of bottled water at home, one at work, and even one in my car! That way, I am never without! I said I think I resized my bladder with this treatment! Lol

kate0b1 · « **Reply #23 on:** January 20, 2015, 08:40:30 pm »

Six pack in the car here lol $:-\$

MickD · « **Reply #24 on:** March 18, 2015, 10:24:58 am »

Still at it here. I am starting my 10th week of the 24 week treatment. I have to say it's what I expected, but not what I expected. I expected to not feel that great but I wasn't sure how I would feel. Strangely the symptoms are very different than anything I have experienced. I don't feel that great, but I'm not bed ridden. Some days are worse than others. I think the symptom that stands out the most is the head pain. I don't like to call it a headache because it doesn't feel like one. Something different, like a vise is slowly being tightened on my skull creating pressure and this general pain all over my head not really centered in one spot. Not unbearable, but can be irritating and frustrating at times, not to mention it makes me feel very thick headed.
There is joint pain, and some stomach issues and just generally not feeling good but like I said I am not bed ridden, and can still function and some days are worse than others. Really this is nothing I can't get through.
I am drinking plenty of water, eating well, taking vitamins and trying to get some exercise everyday (walking the dogs).
It's not easy to think that I am not even half way through this, so I just face each day as it comes. I take advantage of the days where I feel better or even the hours that I feel better.
Big issue is the anemia. My hemoglobin is at 10.4 or something like that. RBC extremely low and this really does a number on my. I feel like I am breathing through a wet rag and no matter how deep I breath I can't get enough oxygen. The doctor is aware and is waiting to see if the hemoglobin drops below 10 before making any changes to the medication, which would be lowering the ribaviron. Really don't want to do this and am hopeful that I won't have to lower the medication.

CE · « **Reply #25 on:** March 18, 2015, 12:20:43 pm »

Hi MickD! So glad to hear you're battling well! Lol! I am finishing my 20th week! Yikes, I can hardly believe I'm closer to finish line! My HGB has teetered between 10.3 - 10.7. I also did not want to have any treatment reduction or Procrit. Perhaps that is how yours will be. It hasn't been too hard on me except when I would put too much physical demand on my body. Like trying to pull my grandson uphill on a sled! He had to walk! I used to take vitamins before treatment and the doc told me not to because the coatings on them put a strain on the liver. Maybe you could try going without them and see if your stomach feels better. Otherwise, keep up the good work, you are almost half way through! Hope the rest of your course goes well. Best wishes and take care! -Chris

MickD · « **Reply #26 on:** March 18, 2015, 04:05:33 pm »

Thanks Chris.

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Author Topic: About to start treatment (Read 17384 times)