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Author Topic: Husband starting Sovaldi, Rib & PegIn Thursday  (Read 22791 times)

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Offline TheresaK

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Husband starting Sovaldi, Rib & PegIn Thursday
« on: April 14, 2014, 09:36:00 am »
My husband is 4 years post liver transplant and splenectomy. After battling with the insurance company for the last 2 months we finally got his medications approved and he will be starting the 12 week treatment Thursday. Can someone tell me what to expect from side affects? I've done all the reading, research, and listened to the doctors - but I really would like to hear from someone who has actually been taking it. Is it the pills that make him sick? The injection? How long does it last? Suggestions to make it better and easier? I appreciate all and any help provided!

Offline jberlin

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  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #1 on: April 14, 2014, 09:50:22 am »
Theresa,

1st, best of luck to your husband for a rapid drop in viral count and permanent UD status! Everyone reacts a bit different, but the biggest side effects will likely be flu like symptoms for the 48 hours after each interferon shot.  Hydration, rest and ibuprofen are his friends, and you being there to cheer him on and support him is a huge help - it is a bit of an ordeal of a treatment.  What I have read on this forum is the Sovaldi side effects are minimal - possible rash, itching - but some of the people on that med will comment too I hope.  But 12 weeks is a short time frame to those of us that did 48 a few years' ago - so that time will fly by.  The main thing is to beat this awful virus!  Keep us informed! -jack

Offline Mike

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #2 on: April 14, 2014, 06:54:07 pm »
Hi Theresa,

I'm finish my last 3 days of the same treatment. My side effects included some itching, dry skin, headache, muscle aches and dry mouth with a cough. All these were manageable with OTC medication. The worst side effect for me, however, was fatigue.

This is from the interferon. Basically, I would take my shots on Friday night, and would be tired all weekend and have no energy to do much of anything.

This would subside by mid week - but then Friday rolls around and another shot.

I know a mid day nap would help a little bit. I also was able to work through the treatment; but took 1 day off and a couple of 1/2 days due to the fatigue. I have a desk job - so I would be mentally exhausted.

All and all, the treatment went well and I was undetectable at 4 weeks. I have my end of treatment (EOT) viral load (VL) this Friday. If the virus is undetected at week 12 (SVR12), I have a 90% chance of 'slaying the dragon!'

I'll have the VL taken  12 weeks later, and if I'm virus free at that point (SVR24), the dragon is dead and I'm "cured."

Best wishes for you and your husband. There is a great chance he'll slay the dragon, too! Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline TheresaK

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #3 on: April 15, 2014, 07:30:00 pm »
Thank you very much for the information and support. We're both pretty scared about all of this - even with all the education, research, and advice. After what we went thru before and after his liver transplant, the thought of him being sick again terrifies us. One thing I haven't been able to find though - is the treatment a "cure" or just puts the HepC into remission? We have an appointment next week with the educational nurse to teach him how to do the injections (sadly they couldn't get him in sooner!), and I have a list of questions for her.

Offline Mike

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #4 on: April 15, 2014, 08:14:03 pm »
Hi Theresa,

"Cured" is now being used for those who have cleared the virus and have a sustained virological response (SVR) 24 weeks after completing treatment (SVR24).

Lucinda, a Hep-C educator and a moderator of this forum, explains this the best I've ever heard:

" 1) Hep C is an RNA virus, so it can only survive by replicating. If the virus is non-detectable, then it is nearly 100% likely to stay that way. Even if you had one or 2 viral particles lurking below detection, these would eventually replicate and you would know it by week 24 post-treatment (actually, you would probably know it by week 12.) Yes, there are some rare exceptions where hep C is found, but these are less than 1/2 of a %, and not enough to stop holding out hope to people.

2) If someone is cured before they have significant liver damage (cirrhosis, near cirrhosis), then most docs are proclaiming their patients cured with no further follow-up. Most experts agree that biopsies, ultrasounds and repeated viral loads are unnecessary for those who exhibit no signs of extensive damage. I will continue to have annual liver labs and CBC through my primary care.

3) It's a whole different situation for those with cirrhosis. They may be virologically cured, but they still have a serious liver disease that needs close monitoring."

Lastly, I was thinking about you and your husband yesterday, regarding the side effects of this treatment.

All I can say is that your husband made it through a liver transplant, which I'm sure was very painful, scary and trying. If he can get through that and all the stuff that went with it, this treatment will seem like a walk in the park. I don't think the two can even be compared.

Your husband sounds like a real trooper to me. A go-getter and a strong person. I'm very confident he will do fine and get through this with flying colors!

You and your husband will be in my thoughts.

Best wishes, Mike
« Last Edit: April 15, 2014, 08:20:18 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #5 on: April 16, 2014, 09:00:43 pm »
good luck on friday Mike.  I hope all goes well for you, and that this drug is worth the 1000.00 a pill

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #6 on: April 16, 2014, 09:07:00 pm »
To Theresa

Like they have said the Interferon injections are the worst,  I give them to my husband and within 3 hours he is in bed and not up for a couple of days,  He has lost his appetite , thirsty, headaches, major fatigue, nausea, vomiting sometimes, coughing alot to the point of gagging.  Very Irritable. depressed.  No rash yet he did get rash with incivek . But even with all this he goes to work

Offline Marysee

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #7 on: April 21, 2014, 08:29:34 pm »
Wow, that sounds rough, kudos to him for going to work. I agree that the Peg is the worst, but we can get through it and it will be worth it. Good luck to you and your husband, sometimes being the caregiver is pretty hard too.

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #8 on: April 21, 2014, 10:15:29 pm »
Marysee:

This is his 2nd time around , first was the pegsus and Incivek and that didn't work.  So, now trying this.  he is on week five starts week 6 on Thursday , half way there, I am hoping all goes well.  Will do viral load at 8 weeks since this is all there is except transplant left to try.  Not Likely to happen.  So, I pray every night that this will be his miracle drug. will keep you all posted how he makes out with the Pegsus and that  sovaldi.

And he is a trooper , to work with this , I don't think I could do it ,

Offline TheresaK

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #9 on: April 22, 2014, 08:53:11 am »
It really is a big help to read everyone's replies - the good and the bad. They delayed his start date until this Sunday, the 27th - so he can enjoy his 50th birthday and our anniversary on Saturday. A nice well earned stay at a resort on Daytona Beach before this all begins. Sadly we didn't catch his HepC early enough to be able to try treatment first - liver transplant was his only option. He was put on the transplant list on a Monday, and they called us Saturday to come in for the transplant - he was that bad. And to all other caregivers out there - I commend you and praise you! From experience it is so damn hard to remain supportive and positive, and to keep your partner the same way when it seems like all options have run out. There are times we feel like an emotional punching bag, but keep it inside and remind ourselves that we are the lucky ones, and our partners are the ones going thru hell. I hope everyone had a wonderful Easter, and feel as blessed as I do.

Offline TheresaK

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #10 on: April 28, 2014, 02:02:07 pm »
So we did my husband's first PegIntron injection with the redipen last night. Didn't go so well. Had issues after setting the dosage, and was a little confused on it - so the whole pen was wasted. Re-read the directions again and finally understood. We did go to a training appointment at the doctor's office, but the sample one wouldn't allow her to go to the point of setting the dosage and "not" pushing it back down until ready to inject (which of course I did - with the needle safety cap still on).  It was a very very rough night. He was horribly sick, chills and body aches. Sadly I had to go to work and wasn't able to stay home and help him out today. He said he feels a little better, just very tired and achy now. Hopefully the next injection will go a little more smoothly

Offline jberlin

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  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #11 on: April 28, 2014, 05:51:38 pm »
Ah, the joys of interferon injections...  Yes, they get easier, and I think will hit him less hard in future weeks.  Take a couple of ibuprofen an hour before the shot and drink lots of water, then go to bed soon after the shot.  I found pinching the flab in my tummy hard and going in at 45 degrees the least painful, and I tried my thigh too, but everyone is different.  Good luck to him and remember your support means everything to his success.  -jack

Offline Marysee

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #12 on: April 28, 2014, 08:00:25 pm »
Sorry to hear things went so rough with the redipen, my peg is in individual syringes. I haven't had the terrible chills since about week 8, I still have terrible achiness especially in my back..I have been going for a weekly massage and that seems to help. I take my last shot this Thurs..then I have about a week of pills after that. I can't say the time has gone by fast...I never wished for time to go by as much as I have the last 9 weeks, but it does go by.

Best wishes..Mary

Offline TheresaK

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #13 on: April 28, 2014, 08:03:58 pm »
Thanks. Its a rough night again. He's got a 101 fever, chills, and still can't keep anything down...and is mad because I won't get him taco bell...go figure

Offline Mike

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #14 on: April 28, 2014, 09:48:46 pm »
Hi Theresa,

Tell your husband to hang in there. We're pulling for him and know how tough interferon can be. It should get easier. The first couple of shots were the worst for me. My system adjusted and the flu-like symptoms began to wane.

Drink lots of water and protein shakes if you miss a meal. Rest also helps, as does ibuprofen for the aches.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline TheresaK

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #15 on: May 09, 2014, 08:36:59 am »
Just got AMAZING news! After 2 weeks of treatment my husband's viral load went from 6.71 million to 115 !! no thousands, no millions, just ... 115! So the sleepless nights, the crazy sickness and side affects are worth it :)  Thank you all for your support!  10 more weeks to go!!!

Offline jberlin

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  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #16 on: May 09, 2014, 09:08:45 am »
Great news!  Over a 4 log drop in 2 weeks is amazing.  Well, you know the medicine is doing its job, so he just needs to finish the treatment and rid himself of this virus forever!  Thanks for the update, and keep them coming!  -jack

Offline Marysee

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #17 on: May 09, 2014, 09:52:50 am »
Theresa, that is amazing news...I remember when I went UD at week 4 I could hardly believe it. Now, I just took my last SOV and RIB last night. All the side effects are definitely worth it.

Offline Mpetrecz

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #18 on: May 09, 2014, 06:34:26 pm »
Yeah Theresa!  Great news.....good job caring for hubby......

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #19 on: May 14, 2014, 02:18:29 pm »
Great news for you Theresa.  I hope mine gets that type of news too when he gets his results . 

keep up the positive thinking , I sure am trying hard too that is for sure

Offline TheresaK

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #20 on: May 14, 2014, 02:49:12 pm »
 :( it's been a very difficult week. He hasn't bounced back from the side affects like he did the last 2 - we had his appointment with the transplant clinic and hepatology today. He's got a bad pain in his side and lower back. The doctor thinks it might be colitis, so they ran some tests. But he's really weak, tired, and just not feeling great at all. No appetite. Sleep between Sunday night - Wednesday night is next to impossible. I feel guilty complaining, because I know what I feel is nothing compared to him - but I work 5am - 5 pm with an hour 1/2 drive to and from work. So no sleep, and caring for him is starting to wear on me as well.

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #21 on: May 14, 2014, 02:59:22 pm »
I Know Theresa , You have to take care of you also though, do take time for you as you will get run down also and get sick with flu or something yourself.  You can only do what you can so , if you are the only bread winner right now then that is what you have to focus on.  I work everyday, and hard to concentrate at times.  being the age I am besides lol .  Mental pause lol.  Anyway, leave the dishes and housework even if you don't want too, but if it means your rest or it your rest is more important.  It goes my fast seems long sometimes though Keep your Head up

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #22 on: May 14, 2014, 03:01:12 pm »
sorry for the wrong words at time lol

Offline Johnp56

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #23 on: May 14, 2014, 03:14:13 pm »
ello Theresa...I'm in the same boat as your husband. I'm 51/2 years post transplant and my Dr wants me to start treatment again.I was told the side effects aren't as bad as they were 5,6,10 years ago.they kicked my butt last time, not to mention the 7 monthes I was in the hospital getting my transplant I'm waiting for the OK from the insurance company to get meds   Good luck to you all

Offline Colormepurple

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #24 on: June 11, 2014, 02:11:43 pm »
Theresa ((((hugggssss))) for you,   I know the feeling, But I am here to say that mine is over now his last day of meds tomorrow and they want him on a liver friendly diet for the next 6 months will do another viral load in 6 month beginning of December and if clear then he is done.  :) .  Keep your head up , I use to drive to the water and sit in my car and have a coffee and cry just to release some of the pent up emotions.  It helped . lol .   I am routing for you :) Take care  :)

Offline Marshall

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Re: Husband starting Sovaldi, Rib & PegIn Thursday
« Reply #25 on: June 15, 2014, 08:21:50 am »
Tell him to just think positive. I'm at week 29 of my 48 week treatment. All viral loads tests so far undetectable. Looking good. It works. Self employed working 7 days and haven't missed any. Think positive and dont beleive all bad stuff you may read. I'm 54. Had virus since 20. Genotype 1.

 


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