Author Topic: Gen 2b, Approved for Sovaldi / Ribavirin (Read 16006 times)

Laura · « **on:** December 16, 2015, 07:47:16 am »

Greetings all,
I have been lurking for a while, this is my first post. I was surprised, and very happy, to be approved for treatment after only one appeal. I finally have the meds and have my appt at the clinic 12/17, tomorrow. They have asked me to wait to start taking the meds until after my appt. (Getting the meds was almost as difficult as getting approval; now that a 4 week supply here, I don't want to dwell on that, although I worry a bit about the refills.)

I will be starting 12 weeks of Solvaldi 400 mg daily, Moderiba 2x a day, 600 mg am, 400 mg pm.

Since this is an online forum, it's easier for me to admit that I am kind of scared about the treatment. I know not everyone has side effects, or all the side effects, but I just read in the pharmacy info that the Moderiba can cause blindness. I suppose questioning if you are doing the right thing after reading that is healthy!

I have learned a lot by reading the posts, and am grateful to be able join the community as I begin treatment. Thanks!

Laura

Rubi · « **Reply #1 on:** December 16, 2015, 09:56:26 am »

Welcome!

Don't let the side efffects worry you. Many people have little to none. Remember to drink lots of water and rest when you can. If you develop any of the side effects you will deal with them as they crop up, but do not let yourself worry about them. Try to keep the end result on the top of your list.

Hugs,

Rubi

Laura · « **Reply #2 on:** December 19, 2015, 10:35:29 am »

Rubi, thanks for the encouragement! I just started day 1 today!

Laura

jakas · « **Reply #3 on:** December 19, 2015, 04:58:14 pm »

good luck keep us posted

KimInTheForest · « **Reply #4 on:** December 20, 2015, 02:51:43 pm »

Welcome to the forums, Laura, and to the treatment journey! I am sure you will do fine. Ribavirin can certainly take the wind out of your sails. I did 12 weeks myself earlier this year (with Harvoni in my case). But I am now cured. And as far as I can tell, all ribavirin-related side effects are temporary. So just keep that in mind as you go along.

I don't think you need to worry about blindness.

The most likely side effect you will have from the ribavirin is hemolytic anemia to some degree or another. This isn't something iron will help with, so don't try to take iron to offset it. It isn't iron-deficient anemia.

The two other riba side effects I was most aware of were a persistent dry cough, and the famous "riba rage" and other emotional fluctuations. I took Ricola lozenges for the cough. And with the emotional stuff, I just kept reminding myself it was temporary.

Stay well hydrated throughout treatment. Water is best.

Good luck!

kim

Rubi · « **Reply #5 on:** December 21, 2015, 07:26:01 pm »

I took my last dose last night. yeah! So I'll be your cheerleader now. Keep us posted on how you are doing.

Rubi

KimInTheForest · « **Reply #6 on:** December 21, 2015, 08:16:42 pm »

Quote from: Rubi on December 21, 2015, 07:26:01 pm

I took my last dose last night. yeah! So I'll be your cheerleader now. Keep us posted on how you are doing.

Rubi

Congrats on reaching the end of treatment, Rubi! Good luck on your labs.

kim

Laura · « **Reply #7 on:** December 21, 2015, 09:11:56 pm »

Rubi,
Fantastic! Congratulations.

Laura

Laura · « **Reply #8 on:** December 21, 2015, 09:18:18 pm »

End of day 3. I am managing okay. First day at work. A little headache, a little queasy. Also, itchy and fatigued, but felt that way before starting treatment. I seem to be having trouble finding words, hope that doesn't last long.

Thanks for the encouragement. Onward!

Laura

Laura · « **Reply #9 on:** December 27, 2015, 02:06:57 pm »

Day 9 of 84.

I am managing. I have had some good days and some not so great days, but haven't missed any work and got through Christmas.

Mostly I have had a flu-like feeling, chills, dull headache, and trouble sleeping. Advil helps. And I need to eat something when I take the riba. With the holiday merrymaking, I took the riba after a meal twice and found it harder to tolerate. I am gravitating to bland foods. I have been drinking water, trying for 72 oz a day.

I got a look at myself and was shocked at the pallor.

it feels weird to describe all this in a public forum!

it sounds like the side effects can change at about 2 weeks and about 6 weeks?

Curious how others are eating? Normally? I am Italian-American and miss my tomato based foods and pizza! Plus, I live in the desert southwest and we eat a lot of red or green chile here, can't tolerate it too well.

Laura

BillT · « **Reply #10 on:** December 27, 2015, 03:00:11 pm »

Hi Laura,
Yes the sx seems to hit people starting about week 2 when the meds really start working on our systems.Hopefully they go away for you quickly.I'm on Viekira and they told me to eating something,even if it was a piece of bread,before I took my pills.Don't feel weird about posting on the forum because we've all been through it and we all understand what's going on.I'm Italian-American to so I understand the pasta and pizza.lol I'm tending to the blander foods myself but that's because it's what my body seems to want.I don't eat sweets normally but since I've been on the treatment I've had to keep some around.I haven't a clue why.Good luck and let us know how you're doing.

Rubi · « **Reply #11 on:** December 27, 2015, 04:23:40 pm »

I struggled a lot with eating. If I kept it down I felt bloated. I did not get to eat very healthy towards the end because I just ate what I could keep down. Toast in the morning, everything came up at lunch and dinner no matter what I ate, and a bowl of icecream with my nightly meds.

I do think there is some meds you can get for nausea, I just couldn't get them because my doctor claims there are no side effects from the meds. So, I just had to do the best I could.

I did find I did better with smaller meals. Probably a good idea whether I'm on the meds or not though.

Good Luck....Keep taking those pills!

Rubi

Laura · « **Reply #12 on:** January 08, 2016, 08:04:39 pm »

Very bad, horrible day.

Completing week 3, but the hemolytic anemia has kicked in. My hemoglobin is down to 8 from 12.6. We are going to try reducing the dosage.

And my car was stolen, and I had to take my dog in for an emergency vet visit. You can't make this stuff up.

Hoping for a better tomorrow.

Laura

KimInTheForest · « **Reply #13 on:** January 08, 2016, 09:02:56 pm »

Quote from: Laura on January 08, 2016, 08:04:39 pm

Very bad, horrible day.

Completing week 3, but the hemolytic anemia has kicked in. My hemoglobin is down to 8 from 12.6. We are going to try reducing the dosage.

And my car was stolen, and I had to take my dog in for an emergency vet visit. You can't make this stuff up.

Hoping for a better tomorrow.

Laura

So sorry to hear about such a pile-up of problems for you, Laura. I am glad to hear your doctor is planning to reduce your riba dosage. 8 is pretty low for hemoglobin. I fell to 9.5 at my lowest, and it wasn't pretty. So I know what you are going through!

Good luck!
kim

BillT · « **Reply #14 on:** January 09, 2016, 08:23:42 am »

You keep going Laura.Several people have had problems with the anemia and made it,so keep going.This is only temporary so just keep thinking about that when it gets hard.Let us know how you're doing.

Laura · « **Reply #15 on:** January 15, 2016, 09:23:57 pm »

I finished week 4 today!!!! There were a couple of days that were really rough --barely got through the days, but missed only a few hours of work. My Doctor reduced the Ribavirin again -- now down to 600 mg taken with the Sovaldi once a day. The anemia seems better, I still huff and puff if I move, but I don't feel like I am going to pass out.

My 4 week lab work will be done on Monday.

Thanks for the encouragement, it helped.

Laura

Laura · « **Reply #16 on:** January 21, 2016, 09:59:36 pm »

I got my 4 week test results today.

First the good news --
HCV RNA Quantative Real Time PCR <15 Not Dectected

Yes!

But the bad news is the anemia. Jan 8 test hemoglobin was 8.0 and Jan 18 test hemoglobin is 8.1, hematocrit is 26.2, up from 24.7. a few other values are the same or getting worse. My doctor's office isn't sure I should continue. I felt pretty good yesterday, and we settled on trying another dose reduction to 400.

However, today I felt terrible, could barely get through the day. I was hoping to get your thoughts on something that might be a factor. I have a 125 mile round trip daily commute that involves a 2,000 ft altitude change. I live at 5000 ft and my job is at 7000 ft. I was wondering if the altitude change could be a factor in the anemia? I felt pretty good for a couple of days, but after a few days of commuting, feel terrible again. I thought I might try staying at the higher altitude for a few days next week and see if it helps. Difficult to arrange personally, but I figure it's worth a try.

Tomorrow I finish week 5 and I hate the thought of giving up. I appreciate any thoughts or insights you might have.

Laura

KimInTheForest · « **Reply #17 on:** January 21, 2016, 11:25:36 pm »

Hi laura. Congrats on achieving undetected status!

Yes, the anemia is certainly a problem. My hemoglobin did not fall as low as yours, but I felt pretty rotten with my Hgb at 9.5 (at lowest).

I am not sure if staying at higher altitude would help in this case. I think it could make you feel worse. Normally, as you know, high altitude environments increase production of red blood cells, which is why athletes sometimes train at high altitudes to them compete at lower altitudes, getting an extra boost of oxygenated blood from their high altitude training. However, as I understand it, the ribavirin is blowing up your red blood cells pretty much as fast as your bone marrow can manufacture them. In which case, high altitude life might not give you more red blood cells - just thinner air for your already under-oxygenated blood.

However, my thinking on that could be wrong. Patients on ribavirin are sometimes given EPO shots to boost the bone marrow's production of red blood cells. So it seems that the bone marrow can be made to produce more RBCs even with ribavirin blowing them up.

You could ask your doctor about EPO shots as a possibility...

Let us know what you end up doing. You are in a difficult situation since Sovaldi does not seem to work on its own.

Good luck,
kim

Laura · « **Reply #18 on:** January 28, 2016, 10:08:27 pm »

I m still standing -- and still on the treatment. The latest dose reduction of the Ribavirin to 400 once a day has helped a lot. I am drinking electrolytes supplements and eating more protein. Seems to help, I haven't keeled over and haven't missed any work. And I finish week 6 of 12 tomorrow!

Laura

KimInTheForest · « **Reply #19 on:** January 28, 2016, 10:12:11 pm »

Quote from: Laura on January 28, 2016, 10:08:27 pm

I m still standing -- and still on the treatment. The latest dose reduction of the Ribavirin to 400 once a day has helped a lot. I am drinking electrolytes supplements and eating more protein. Seems to help, I haven't keeled over and haven't missed any work. And I finish week 6 of 12 tomorrow!

Laura

Good job, Laura! You will make it to the finish line.

kim

dragonslayerinprogress · « **Reply #20 on:** February 04, 2016, 04:49:22 am »

Glad to see you're still on treatment. Started week 3 on Tuesday and am itching to get lab work done on Monday. That will give me hope. Will update but so far, I haven't really felt too bad yet. Little dizzy from time to time and anxious but all good so far.

dan98584 · « **Reply #21 on:** February 09, 2016, 08:49:32 pm »

Hi, Laura: Just started my treatment 8 days ago. 24 weeks ribo and Sovaldi. Because I a genotype 3. Will follow your journey. Glad the reduction helped you. Keep the faith

KimInTheForest · « **Reply #22 on:** February 09, 2016, 09:02:38 pm »

Quote from: dan98584 on February 09, 2016, 08:49:32 pm

Hi, Laura: Just started my treatment 8 days ago. 24 weeks ribo and Sovaldi. Because I a genotype 3. Will follow your journey. Glad the reduction helped you. Keep the faith

Good goin' Dan! 1 week down, 23 more to go. You can do it!

kim

dan98584 · « **Reply #23 on:** February 10, 2016, 08:00:42 pm »

thanks Kim. Don't know if its a side effect , but been feeling a lil goofy today. hard saying, could just be me?

Laura · « **Reply #24 on:** March 13, 2016, 09:13:46 pm »

I made it!!! I took my last Sovaldi and Ribavirin on Friday March 11! It was very, very hard, there were a couple of times that I didn't think I would make it because of the anemia. Thanks to everyone for the help.

I will be posting more later.

Blessings to all,

Laura

KimInTheForest · « **Reply #25 on:** March 13, 2016, 09:22:34 pm »

Congratulations Laura! I'm so happy you were able to get through it, and it is now all behind you. You will recover from the anemia soon enough. But I know what you mean about it being hard.

best,
kim

AussieRosa · « **Reply #26 on:** March 13, 2016, 09:43:13 pm »

Way to go, Laura! You had a really tough time of it, but you made it through. Wishing you a successful SVR and a speedy recovery.
Rosa

Dan, so glad to hear you've begun treatment. Wishing you all the very best with it too.

Forums Index

Welcome

Author Topic: Gen 2b, Approved for Sovaldi / Ribavirin (Read 16006 times)