Hep C Discussion Forum

malekula man · Senior Member

RE: anyone on pegasys/ribavirin/sovaldi..?

Greg D · Senior Member

Way to go Lynetta!! Congratulations and all the best to you from here forward! Your great news has made my day. biggrin

Cinnamon Girl · Guru

Hi Lynetta, that`s brilliant, congratulations on your SVR!! biggrin

Great to hear your news, it`s what we all like to hear and gives inspiration to our new members!

Enjoy every day of your new Hep C free life, you`ve earned it!!

Wishing you all the best!

Scruffy · Guru

WHOOOOT!!!!

Congratz.

Tess · Senior Member

Congrats Hope! I wasn't here when you started but I am so happy to be here for the finish biggrin Such wonderful news. On to an HCV-free life for you!

- Tess

Tig · Admin

Hi Hope,

Congrats on your SVR 24!! That's the kind of good news I love to hear! This is your thread, so posting here is just fine. If you want to share any good news in the future and keep us updated on your health, you can start a new thread in the "Post Treatment" section.

I'm glad you are part of our forum and know everyone here is happy to have been able to help you along the way. Enjoy your new HCV free life!

Hope4 · Member

Not sure where to post this, but it's where I started, so I guess it's where I'll finish. Just got 24 wk EOT test back. Still Undetected. Relieved, Happy & Grateful.

Peg, Riba and Sovaldi, hats off to you. And thanks again to everyone on this Forum who inform and encourage. Wishing good luck and peace to all.

Lynetta

Thom · Member

Hope4 wrote:
Just injected last dose of Pegasys..... now 6 more days of pills...( that's about $6000 worth of Sovaldi, which still blows my mind) ....plus 30 more ribavirin tablets....and I'm going to call it a day. I'll celebrate my last day of pill taking next week by getting my viral load drawn....Let the hoping and crossed fingers begin. Again, it has not been terrible, but there have been some sides. (think my hair might be thinning and my scalp has even sort of hurt for the last month or so)
If I could devise a way to just control the location of my couch, so it would always be within plopping-down- distance for me, I would do so...
I only sleep in 2 to 3 hour blocks of time each night but when its time to get up for work in the morning I feel like I could sleep for hours given the chance ..
My eyes are still dry & itchy so I use eye drops and I find my jaws getting tight from clenching them for no particular reason. A few headaches...some tenderness and soreness across the brow and top of eye sockets (eyes checked out OK, by the way)
I did get kind of pissy to someone at work the other day, which is not me at all, typically...(they did sort of have it coming tho' :<)....Up until then, I've been able to just fume silently over disturbances in the force.
well...thanks for listening. I'll let you know what the next test reveals. Best wishes to all of you.

I just finished the same regimen on November 8. It sure is nice to be done with it.

Hope4 · Member

Glad to catch you here. I just finished the same tx a week ago and today, just moments ago.... got my EOT viral load results: UNDETECTED. (I kind of expected that at this stage, but I was excited to see those results in black and white all the same..Now the wait for the BIG TEST WITH THE~ HOPEFULLY HAPPY ENDING ~down the road begins....)

I hope you find that these weeks go by faster than you'd expect. I found the tx pretty tolerable overall. We are so lucky to only have to deal with it for 12 weeks. I found that by the time the sides were really accumulating on me, I was done......My main issues were insomnia, dry, itchy eyes, some sinus stuff, and toward the end, the fatigue, intermittent aches...not too bad, tho' and getting out of breath easily. Had a brief period of a week or so, with a really sore tongue and sore at the corner of mouth (B-12 drops and coconut oil took care of that) . I used Biotin mouthrinse every day.....I never heard anyone else mention it, but by about halfway into tx, my scalp got very tender....like you wore a ponytail too tight all day long and that is just now feeling better....and I think I have detected a bit of hair loss, but nothing anyone else would notice at this point. (oh, yeah..I'd be remiss to imply there was no brain fog here and there on occasion..but heck, i had some days like that long before treatment. :<)

I never had to miss any work (helped that I work 4 days instead of a 5 day week) I'm sure you've already read all the good advise in here . Take the water drinking seriously..I think that helped me a lot. And yogurt and/or peanut butter on whole grain toast for breakfast (with the Riba) was my friend... Good luck and I'll be watching for your updates!

Lynetta (Hope4)

-- Edited by Hope4 on Wednesday 29th of October 2014 11:50:43 PM

momfullofhope2014 · Newbie

Day 10 of my treatment. Glad to find a place with people that understand! Good information! First day was HORRIBLE. I anticipated the next injection would just be the same... it wasn't! Not near as bad. Still body aches in the evening... skin is very dry and the brain fog/overall fatigue is definitely there. But, my light at the end of the tunnel is what keeps me focused! This is ONLY 12 weeks! and I'm almost 2 weeks down! :) I can do this! So happy to see the good results! Very encouraging!

Matt Chris · Guru

Hey Hope

Congrats on making through all the Interferon injections, not a easy task and easy Fx's. One more week and your home free, yahoo!

matt

JLynch30 · Senior Member

I relapsed after 12 weeks - is anyone on longer?

Hope4 · Member

Just injected last dose of Pegasys..... now 6 more days of pills...( that's about $6000 worth of Sovaldi, which still blows my mind) ....plus 30 more ribavirin tablets....and I'm going to call it a day. I'll celebrate my last day of pill taking next week by getting my viral load drawn....Let the hoping and crossed fingers begin. Again, it has not been terrible, but there have been some sides. (think my hair might be thinning and my scalp has even sort of hurt for the last month or so)

If I could devise a way to just control the location of my couch, so it would always be within plopping-down- distance for me, I would do so...

I only sleep in 2 to 3 hour blocks of time each night but when its time to get up for work in the morning I feel like I could sleep for hours given the chance ..

My eyes are still dry & itchy so I use eye drops and I find my jaws getting tight from clenching them for no particular reason. A few headaches...some tenderness and soreness across the brow and top of eye sockets (eyes checked out OK, by the way)

I did get kind of pissy to someone at work the other day, which is not me at all, typically...(they did sort of have it coming tho' :<)....Up until then, I've been able to just fume silently over disturbances in the force.

well...thanks for listening. I'll let you know what the next test reveals. Best wishes to all of you.

Tig · Admin

Hi Hope,

Overall, considering the protocol you're on, you've done very well. Having been able to handle the SFX inherent with Peg and Riba alone, my hat's off to you! Well done! You present some good numbers and I agree that your ALT/AST is nothing to be concerned about. It's very common to see those values fluctuate over the course of Tx. You certainly have every right and reason to feel chewed up, lol! But it appears that you've faired well and have good numbers to prove it. I wish you strength and continued good luck!!

Tig

Dzdayscomin · Senior Member

Those AST/ALT numbers are nothing to worry about....looks good to me....Almost done Hope4 you can do it, we all wish the best for you.

Duane

Hope4 · Member

Checking in....10 Peg shots down....2shots to go....plus the 3 more weeks of riba and Sovaldi and done. Just got most recent bloodwork back...looking pretty good. Platelets even went up from 128 to 147.

HCT 33.1 and HGB 11.3 and everything else close to where it should be...(AST went up from 35 to 41, I wondered about that...but ALT at 37 from 48) . Got a flu shot last week, don't know if that would effect the AST?

Overall, it has not been too bad. Feel a little chewed up sometimes....have had a few more headaches.. Seems like sinus and allergies are a bit more ramped up...Had to get eye drops for itchy, dry eyes...eye dr said meds can dry the eyes out too... get out a breath and tired at times, but nothing that can't be managed.

Again, thank you to everyone out there for your encouragement and advice and for those still on treatment, I wish you that ultimate outcome that we all hope for. Never give up. Peace!

Hope4 · Member

Huey~~~~happy dance!! So glad for you. I just really thought that this is what you you be telling us. Thanks for the good news

Huey · Guru

Huey wrote:
Thanks,, I got back the blood count test results, nothing yet on the VL. Keep you all posted.

Made it! SVR, 9/8/14

Rduvall · Newbie

I just finished the 12 week tx program With the Sovaldi/Riba/Peg. I cleared the virus again, undetectable. This is my 4th protocol however. The last was 38 weeks with victrelis/RIBA/peg. I cleared after 8 weeks but it came back 90 days after tx ended. Before that was 52 weeks RIBA/peg. The virus cleared but returned. I hope that it is gone this time . I'm geno type 1a. I tolerated the treatments fairly well by eating well and maintaining a good physical fitness regimen. It was not always easy however and many weekends I was not very active. Good luck to all of you that have treatments ongoing.

Huey · Guru

Thanks,, I got back the blood count test results, nothing yet on the VL. Keep you all posted.

Hope4 · Member

Thanks Tig. I appreciate your encouragement, advice and positive comments.

Hope4 · Member

Huey~Fingers crossed for you. I just know you are going to have a great outcome and hope the wait is not a long one. Man, they all seem like long waits, tho' , don't they?

-- Edited by Hope4 on Thursday 4th of September 2014 10:53:49 AM

Tig · Admin

Congratulations Lynetta! Your doctor is absolutely right, an RVR is an excellent signal of great things to come! Continued good luck to you!

Tig

Huey · Guru

Congrats Hope I got the blood test today, Now i have to Waite on the results.

Hope4 · Member

Update; results back from 4 week labs after start of tx....Undetected! so I"m thinking YAY. From a 2,186,415 viral load to undetected in 4weeks. Doc says a Rapid viralogic response bodes well for things to come. Blood counts looking decent...down a bit overall, as would be expected, but nothing to warrant any changes in dosing, so BIG relief...

This week will mark the beginning of week 6....reaching for the halfway point

Not feeling too bad. Felt a little crappy on the weekend, but no big deal. Sometimes sleep is hard to come by, my eyes tend to burn a little and I get tired sometimes..but this is just small stuff.

I'm grateful for being on this road and grateful to all of you guys who offer us a community of support. Nobody else really gets it....the waiting, etc. , the uncertainty and the significance of poring over the lab work, etc. and all the fears that we may never give a voice to.....But you fine, lovely people know and understand. It's kind of like those times when you can only say.."Well, .you just had to be there" Thanks, again.

-- Edited by Hope4 on Thursday 4th of September 2014 01:27:07 AM

Huey · Guru

i pushed the LIKE button

Tig · Admin

Hey Lynetta,

Those are very good numbers, congrats! You can expect to see them fall, that's the nature of the treatment. I see nothing that would indicate the need to reduce anything. I had problems with sores in the corners of my mouth and spots that felt like canker sores inside my mouth. But it sounds like you're handling those symptoms appropriately, keep it up! Let us know what you hear next week, we're all rooting for you!! Keep your spirits ups and that positive attitude will carry you through!

Tig

Hope4 · Member

Just updating... Shot # 4 tonight. Next week will test viral load and recheck bloodwork (had 2 wk labs done before..) AST 35 (down from 132 in Feb) ALT 48 (down from 168).

Platelet 131, RBC 4.38 , WBC 4.00, HGB 13.6 . Office said they will review at 4 weeks to see if a reduction is warranted due to blood count drops.. Really hoping he won't change anything. I am taking 1000 mg of riba.... 600 in the am and 400 in pm. Plus the Pegasys and Sovaldi......

So far, sx have been minimal. Developed a sore tongue this week and lips feel chapped and kind of itchy. Taking Vit B Complex for next 5 days to see if it helps per Dr.)

(also taking coconut oil and that kind of soothes things, too)

I've only had maybe a couple of mild headaches. Get pretty tired the day after shot, often with a sore throat for a day or two...so I kind of lay low for a day or so. Haven' really had issue with chills...get a few minor body aches, but overall, I must say, I was prepared for things to be so much worse that I have been pretty relieved and grateful to find that it just has not been that bad so far. I know it could change, but right now I won't complain.

Thanks again to all of the kindred spirits out there who have taken the time to advise and listen to us. Wishing nothing but the best for everyone.

JLynch30 · Senior Member

Yes there is the 92% factor. I had the same treatment - rely on these people to help you!

Lavender dragonfly · Member

Hi Lynetta! I had dry, red, itchy eyes along with skin at about where you currently are. I'm thinking now that my allergy was enhanced a bit, due to the tx. I suspect a lot of things are magnified due to the meds. I also had sinus issues for a few weeks about that time, but am feeling pretty normal now. At least for a retired gal in Phoenix in August. ;) Everyone is grumpier than I ever was, tired and winded. I found it diverting to reread my favorite author, particularly since Starz is showing "Outlander" starting tomorrow. Take care of you for this time.

Hope4 · Member

Lavendar and Tig,

So happy to check in here and see your feedback and encouragement. Thanks for taking the time. Today has been kind of head-achy, but I'm used to having periodic HEADACHES and this is just more of a "meh...I could possibly grow up to be a head-ache, or maybe not" so I can almost ignore it. Kind of tired and I still feel kind of "blank" mentally...not too hungry, but will fix up something before the next riba dose. I was really sleepy & tired waking up this morning..set alarm so I wouldn't sleep past my morning pill time..but then slept another couple hours after taking the meds. I've been taking care to spend extra time on the dental routine morning and night. I noticed a little sore throat today...seems like it did that last week too..just barely there..., so I'll be gargling for that, too and finish with the Biotene.

Did anyone else have red, itchy eyes, too? Not sure if it is a side or if it is just allergies...(had an issue with this earlier in the summer, before I was on tx, so who knows)... I'm just doing eye drops for that. Again, thanks for being there and reaching out. It is both a help and a comfort.

Lynetta

Tig · Admin

Hi Lynetta,

Sounds like you're handling things well so far. Dealing with the side effects, particularly the effect Interferon and Riba has on your mood, is three quarters of the battle. The first month was the one that took the longest to adjust to and then I was aware of what was normal and what wasn't. Checking in here and comparing notes with your fellow patients is so helpful. Whenever you have a question about what's happening or what will help you over a rough spot, this is the place to come.

Try a toothpaste and mouthwash by Biotene, it helped my dry mouth and mouth sores a lot. I also found that old brand of toothpaste called Pepsodent, a good one too. Often times your mouth will be raw and a strong toothpaste, like peppermint or spearmint, is too strong and almost burns when brushing. It's important to note that Interferon is hard on your teeth and oral health, so brushing is VERY important during treatment! Do your best to keep your mouth moist, your teeth and gums will thank you!

Hang in there and keep in touch. We're here to help! Good luck...

Tig

Lavender dragonfly · Member

Hope4: I think it's so important to keep a good attitude, and you are! I had some difficulty with appetite for a few weeks, so my friends took me to a nice buffet. .problem solved. I will admit to hitting the dessert area pretty hard! Berries are good, and I ate them with yogurt for the protein. Keep it up, you're already 1/6 done!

Hope4 · Member

Thanks, Lavendar Dragonfly...

My mood so far has been decent, although there may have been an occasion or two that my patience level wasn't where it typically resides ;<)

About 3 hours since shot #2. SO far, hasn't been too bad. Had some body aches last weekend, but all things considered, I'd say they were mild. I know that may change. Notice the mouth getting dry when I wake up in the mornings...(using Biotene and have coconut oil on hand).......Some nights it takes awhile to fall asleep. Drinking tons of water. Feeling kind of spacy tonight, post shot.

Lavender dragonfly · Member

Just finished Friday, and had the same side effects as pizzacake. The anger was only the first few weeks. I put coconut oil on the mouth sores per my dental hygienist. That worked best. Now just waiting for news of SVR! After the 12 weeks is over, it seems to have gone by quickly.

Hope4 · Member

Thanks for your info, good plan and makes sense. I'll be getting the fridge stocked w "salads to go"...(wishing the tomatoes in the garden were ripening faster.). Just one more day to go and I'll be getting started....Mix of dread and anticipation. Ready to get this show on the road. Thank you all for being my "GPS"...

Huey · Guru

Hi Hope,, What I did was I got rid of the sandwich and replaced it with the salad. I got a big bowl of romaine, Iceburg and other veggies all tossed and in the fridge, lots of dressing, and instead of fixing me a sandwich and running back to the game on tv, I grab that salad and it works. All you got to do is make it more convenient to eat a salad than a sandwich.

TazKat · Senior Member

i tried to juice but that fell by the wayside cuz I didn't fell like preparing it. my mom kept & still does in food. I eat a lot of bananas, gotten bak into yogurt. during the day I would feel like veggies etc. at night forget it. sounds like u are doing aok with ur eating habits..

Hope4 · Member

Tazkat, Isiscat, Pizzacake and Mallani~Thank you all for taking the time to reply, making me feel much better and giving me some smiles.

I was really having some doubts...but I feel better after just reading your posts. This may seem like a dumb question, but what do you recommend for meals ? It's just me and the dog left here at home now, so it's pretty easy to take the easy way out for meals, but I know I need to take a bit more care with that now...(I do try to eat fairly healthy....salads, fish, roast veggies....but some nights a bowl of cereal or a grilled cheese seems just fine w/ me and the dog could care less; she's already on a diet.....a diabetic yorkie...I have to give her insulin shots 2x a day. sure hope I can keep the injections straight around here lol.) I was nervous enough the first time I had to inject her. Guess it served as practice for days yet to come. I'm supposed to get "trained" on this Peg injection pen this week. Think I've got "premature- anxiety" and I haven't even taken a pill yet. C'est la vie.

Thanks again.

TazKat · Senior Member

beautiful kitty.. I used to have one.. lol sorry..

Isiscat2011 · Guru

TazKat wrote:
crap i meant pizzacake avatar.. lmao!!

It's ok. I didn't let Isis read that one!

TazKat · Senior Member

crap i meant pizzacake avatar.. lmao!!

TazKat · Senior Member

I meant pizza.. lol

-- Edited by TazKat on Sunday 27th of July 2014 01:58:05 AM

Isiscat2011 · Guru

TazKat wrote:
lol at u isicat.. bonding for sure.. i had a star wars looking pen. this was the first time i gave myself shots in all the treatments i did. i couldn't see the needle which was sooooo small. it was quite easy. by the way i love ur aatar.. making me hungry.. lol

Oh, are cats pretty tasty? lol

TazKat · Senior Member

yeppers.. i did mine in right thigh on the side. still got little hurts, but will go away. i was proud that i could do it myself this time. heck i am proud i did this again period.. sovaldi kicks hep c butt.. yay..

Isiscat2011 · Guru

Well, I could have reached back there (my arms aren't that short) but the angle was difficult. You know what I mean, Hope4. lol

TazKat · Senior Member

lol at u isicat.. bonding for sure.. i had a star wars looking pen. this was the first time i gave myself shots in all the treatments i did. i couldn't see the needle which was sooooo small. it was quite easy. by the way i love ur aatar.. making me hungry.. lol

Isiscat2011 · Guru

Hi Hope4:

Sounds like you have been preparing. You shouldn't have any pain with the injections (just a little poke) but sometimes you can get stiff and achy shortly after the shot or just generally during this tx. Regarding the shots, people take them in their stomachs, their thighs, their butts. I found that the butt was the best place for me. Since I couldn't reach back there a friend of mine did it. Quite the bonding experience. smile

Try to relax and just take it one day at a time. Keep us posted. :)

TazKat · Senior Member

pizzacake is right with all that was said.. lol i remember throwing a rack that would not go back into oven across counter twice. I had a lot of stress with things that should not have been, but sometimes kids (grown) can do that to ya.. all is good on that front, thank god. i had a few meltdowns, but i live alone. so i could let loose & cry & cry it out. then i felt better. don't keep it in. i kept door shut at work. i am trying to get my energy built back up with time. my shrubs etc are sucky as crap right now. lots of work to do outside. but not gonna push it. heck it has been like that for 3 months, why worry so much now? lol i have above ground pool that has stayed green & kept trying to keep from losing it completely. still trying.. but i ain't worried about it.. so be stress free. just keep chin up. YOU CAN DO THIS!!!!!!!! i promise. if Taz can, anybody can.. lol

Taz

mallani · Guru

Hi Hope4,

Your chances of SVR are excellent. If you look up the Neutrino Trial results for the Sovaldi triple, the SVR rate for Geno 1a's was 92%. That's pretty good!

In 12 weeks, you may not have any significant side effects. We're here to help if you do. Best of luck.

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