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Stef's Ribavirin & Sovaldi treatment log

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Posted 3/26/2014 12:13 AM (GMT 0)
Thank you Carol for caring. Thank you everyone for caring. I am so happy that I joined this group. It really does help my mind set. I'm still on track with my pills and I'm not giving up. I pray for the best for your partner. Wishing everyone a good night.
Posted 3/26/2014 1:25 PM (GMT 0)
Good morning all. I had a great night and NO anxiety. How awesome is that?! Had my morning dose of Riba already and now I'm off to work. I hope everyone has a great day. I'm trying to be positive and keeping my eye on the end results. The only thing I feel this morning is a little headache that comes and goes but that's it so far.
Posted 3/26/2014 2:51 PM (GMT 0)
FANTASTIC! You sound much better! A positive attitude can make all the difference in the world.

I have a great link I can share. http://hepatitiscnewdrugresearch.com/sovaldi-sofosbuvir-side-effects.html

It shows the sides as percentages and it's easy to read. You can branch out from that page for all kinds of extra info, but don't start overthinking again or you'll be right back to sweaty palms over nothing. I will see if I can enlarge the charts I have and attach them here. I think everyone should see them because they really put all the new Sovaldi treatment trials into perspective.

HOPE YOUR DAY GOES GREAT!! No sides for me this morning at day 5. I've found I can keep that pesty pending headache sensation away by sipping more water. I keep raisins and sunflower seeds handy at all times. GOOD LUCK!!

Posted 3/26/2014 8:37 PM (GMT 0)
Dave, thanks for the link. Great information there.
Well, looks like I need to increase my dose of Riba to 3 in the morning and 3 in the evening. I'm not really looking forward to that, but I wanted to make sure I get rid of this nasty virus. As I researched the dosage amount for the Riba I saw it was determined by weight. The adjustments are made now and I have to work hard at staying calm again. At least the adjustment was made for the morning and not the evening. I'm going to positive and keep myself busy. Thanks everyone for the support and helpful information.
Posted 3/26/2014 9:37 PM (GMT 0)
I see now in your other post that your Dr is actually adjusting yours up to 1200, but just for reference... Not all places use weight-based Ribavirin. On some plans, it's 1000mg even if you're over 170lbs or whatever it is.
I asked mine about this weight based thing I saw and he said no. That's why I'm on 1000mg. Weight based I would have been 1200.
Anyway, it seems the amount of ribavirin isn't too important, anyway. I came across someone who went undetectable in 2 weeks on only 400mg per day.

Post Edited (steve-ca) : 3/26/2014 4:02:33 PM (GMT-6)

Posted 3/27/2014 11:04 AM (GMT 0)
The "weight-based" Riba dosage is just a standard. Riba used to be prescribed 800mg a day regardless of weight.  I have talked with patients who maintained SVR after only taking 400mg to 600mg Riba a day. But! I would do EXACTLY what your Doc says. I was kinda shocked my Doc started me on 1200mg Riba. I weigh 175lbs, but my BMI is low and I usually have a high sensitivity to most adult dosed medications. (Probably a big reason I hate taking pills) But the Doc insisted I start on 1200mg, and then he could adjust the dosage if I had any major issues. If they start you out on a low dose of Riba, there is no room to adjust the dosage if you do have hematological side effects. So it really makes sense to start out on the weight-based dosage, and let the Doc watch your bloodwork. I think you will be just fine.

GOOD LUCK AND HAVE ANOTHER GREAT DAY!! Day 6 and no sides for me. Heartburn is gone. Yipeeee!!

Posted 3/27/2014 11:55 AM (GMT 0)
I just took the adjusted dosage of 1200. I feel some relief that you, iplaycarvin, are taking the same dosage as I am and you haven't experienced hardly any sides. I'm gonna be good. Ready to start the day : ) thanks again everyone for the support. Being positive! Have a great day everyone. I will be checking in periodically through out the day.
Posted 3/27/2014 12:05 PM (GMT 0)

steffiecakes said...
I just took the adjusted dosage of 1200. I feel some relief that you, iplaycarvin, are taking the same dosage as I am and you haven't experienced hardly any sides. I'm gonna be good. Ready to start the day : ) thanks again everyone for the support. Being positive! Have a great day everyone. I will be checking in periodically through out the day.

Good for you!! I have to admit, I was expecting much worse. I spent a whole week in panic over nothing. It appears most of the serious issues with Riba are when it's combined with Interferon. Keep the positive thoughts!!

Posted 3/29/2014 2:47 AM (GMT 0)
I made it the whole week. I did it! Tomorrow starts week 2. Just taking it one day at a time. Slight headache going on so it's time to sip on some water. Good night and tomorrow is a new day.
Posted 3/29/2014 2:53 AM (GMT 0)
Our little Treatment team is doing great. How does it feel to be a pioneer? Great I hope.
Posted 3/29/2014 5:19 PM (GMT 0)
Yippee! You're on a roll now!! When are your first labs? I had to get mine today as my blood counts were on the low end when I started. I feel fine. Staying busy as heck and having no problems doing anything.

HAVE A GREAT WEEKEND!! 

Posted 3/29/2014 8:43 PM (GMT 0)
I feel pretty good. My blood work is Monday morning. I'm hope the treatment goes on like this for rest of the time. Doing good at keeping the anxiety at bay.
Posted 3/30/2014 1:58 PM (GMT 0)
Note to dragonslayers: Keep up the good work! I am so excited for all of you...Mike too!

Hugs,
ML
Posted 4/1/2014 2:24 PM (GMT 0)
Wondering how the labs went. Hope you are still feeling well. I feel like any other day except alot more energetic. Gotta have water at all times to avoid the sneaky little headaches waiting to pop out, but this is much, much easier than I expected. Hope you are having the same good luck.

BEST WISHES AND HAVE A GREAT DAY!! Let's see some good numbers!!

Posted 4/1/2014 4:50 PM (GMT 0)
I think it takes at least a week before they get the results. I was expecting the worst also iplaycarvin but what I am getting for sides is so much better than expected. I definitely have to keep up with the water because of the headaches. I haven't had any today. I just feel really good today. Have a great day everyone.
Posted 4/1/2014 5:30 PM (GMT 0)
WOW! A whole week? That is a big bummer! My labs are always completed within 3 hours after the blood draw and post online the following night. If it's an emergency, or the Dr. request it, I can get my results in under an hour.

I feel for you! I would go nuts waiting that long. But, If you still feel fine, your blood count is probably staying up.

HOPE YOUR DAY CONTINUES WELL!!

 

Posted 4/1/2014 5:50 PM (GMT 0)
Well the dr's office just called and said my results are normal, whatever that means. I'm not stressing over it. I'm not exactly sure what tests they ran, but I do know they were not testing my viral load til my 3rd blood test.
Posted 4/2/2014 2:05 PM (GMT 0)
AWESOME! I was hoping your Doc didn't have to wait a whole week as well. Normal sounds very good to me! They probably did a Complete Blood Count/with differential, and a Comprehensive Metabolic Panel. They wouldn't do a PCR for VL this early. If you had anything flagged of concern you would be sitting in his office. You should be thrilled!

My Doc also told me to wait till week 3 for the next labs. That made me feel even better than I already do. I feel so sorry for the others on here struggling just to make it through each day. HAVE A GREAT DAY!!

Posted 4/4/2014 4:51 PM (GMT 0)
I can't believe I have 2 weeks down already. I am doing great! I mentioned in the beginning about my ankles being swollen, well they are no longer swollen. It's amazing. Hopefully the rest of my journey goes this smoothly. I wish everyone the best.
Posted 4/6/2014 10:37 AM (GMT 0)
How are you doing Stef? Hope you are still doing good. My HGB dropped, but it's still very tolerable. I've had much worse drops with alcohol poisoning and survived all of them. I had a very thorough heart exam 2 years ago.

Looks like you may get through this treatment without any major sides! You are not alone, I see alot of 2b patients with no sides at all. If you don't feel anything by now you should have it made. The first few weeks is when Sovaldi really kicks butt on the viral load. The rest of the time is just maintaining those low numbers. Not that having any genotype is lucky, but 2b is the one to have. Very fast response times and much easier treatment. Hope you are having a great weekend. BEST WISHES!

Posted 4/7/2014 8:26 PM (GMT 0)
I am doing very well. Can't complain about anything. I wish everyone could experience what I'm experiencing so far. I feel extremely lucky. I had my 2nd blood work done this morning so I should hear something tomorrow. Wishing everyone a great week.
Posted 4/8/2014 3:31 PM (GMT 0)
Day 18. I have noticed that I've been having the strangest dreams and also that I'm having a hard time figuring out what I want to eat. I get hungry but nothing seems appetizing. Other than that, I'm doing great. Good luck everyone and my prayers are with you all.
Posted 4/8/2014 3:41 PM (GMT 0)
Steffie, I have given this advise before. YOU are on a strong chemo type treatment...drugs to kill the bad organizms inside you. If you were on a cancer chemo for pancreatic cancer, or breast/ovarian cancer, or leukemia, you might feel awful, lose your hair, vomit a lot, lose weight.

The Riba is rough, but if it cures you, it is better than End Stage Liver Disease...which results in death, bar transplant, and a really nasty downhill slide.

ANYTHING is better than that...even if you have to sit on the couch for the next month or so.

Meditate and think of LIVING without the dragon...free yourself in your dreams.

I know, I know, it's not easy. BUT you will make it. YOU can take it. I know you can.

Make yourself drink ensure, make yummy shakes with real ice cream...get some calories in you and DRINK water until you think you'll float away.

Hugs,
Mama Lama
Posted 4/12/2014 4:15 AM (GMT 0)
I'm experiencing some headaches this evening and a dry scratchy throat. I feel like I have to clear my throat. Kinda feels like I'm getting a cold or something. Drinking water is just not helping. Other than that I'm doing good. Tomorrow starts day 22. Wow...amazing how time flies
Posted 4/15/2014 11:51 AM (GMT 0)
Hope things have improvfroved for you. I had some very similar feelings but they passed really fast. I thought I may have exposed myself to a bug at the Doc's office but I feel great today. Hope your day is going well. Good Luck!
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