New Hep C Drug

[Vintagechix]

I have hepatitis C with beginning stage cirrhosis and supposed to be starting treatment with Pegasys, Ribavirin and the new drug Sovaldi as soon as the medication gets approved.  Has anyone been on the treatment with the new drug and what are the side effects like?  

[truredhead]

How are you doing? I am the same age as you and am trying to treat. I am hoping my doc will give me the authorization this week. I am 1a and will have to use the three meds.

[Tammys61]

Tammy S, I am awaiting Insurance approval to start the 3 month program, with Friday night shots,Chronic hep c,,liver is in fibrosis state, yes I am a baby boomer to :), IV clean 31 years, figured that's how I did this, I was diagnosed 8 years ago, told to await new meds in the future the future is here. Good luck God bless all.

[Vintagechix]

I am into my 4th week.  The first week I seemed to do well but after that I deal with exhaustion and no appetite.  I have been losing weight and it's so hard to make yourself eat when you don't feel like it.  I have been doing some Ensure drinks.  My platelets are blood counts are low and I am praying that they don't get too low to adjust the medicine.  But if this is the worst of it than it's worth it if the meds do the job.  

Keep me posted and I will be praying for you as I do myself each day to take the medicine:)  Hang in there!

[Praying4cure]

Just finished week 1, a little more emotional, some fatigue, but determined to see it through.

[Vintagechix]

Thanks Sandi....

[hepc4Sandi]

Yes, I think a fever is normal. I get a mild fever and chills for about a day and a half, especially bad on the night I get my shot. Make sure you are drinking enough water—remember half your weight in ounces, so I am 140 lbs, so I drink 70 oz. of water plus extra because I drink a cup of coffee in the morning. So I drink about 82 oz. a day. (2 and a half Nalgene bottles) the water will help with fever and headache. Avoid caffeine and sodas, as they dehydrate you. Yay! Congratulations on starting Tx!

[Vintagechix]

I started the meds Monday evening with my shot, and is it normal to have a low grade temperature?  It's only like 99.9 but it has been 2 day and it comes and goes.  So far just get body aches, headaches, low grade temperature so far.  Not too bad.  

[Vintagechix]

thanks Kim, will try to remember all this.  I don't drink any caffeine so that's good but these are some good points.  

[Vintagechix]

thank you and will take all the prayers I can get:)

[nan535]

"Nan, hope your husband is doing better."

My husband is doing better, thank you. His creatanine is at 2.21 as of Thursday from a high of 2.9. Hopefully his kidneys will continue to improve and get back to where they were before this IV antibiotic injured them (1.46).
Still can't believe that happened.  I made a formal complaint to the hospital administration. Unfortunately his doctor was out of the country when this happened or I really don't think it would have happened.

His doctor has stopped the procrit so the HE episodes he has had since stopping it have been much shorter in duration and not as severe.  So we are really grateful for that.  The good news is that although the procrit was stopped, the hgb went up from 8.8 to 9.1 on it own.  

My best wishes for all who celebrate for a Happy Easter and/or a Happy Passover.

Nan

[Groupergetter]

Jimmy, looking forward to seeing your VL results.  I am UND on my last labs and probably was at 4 weeks.  I'm over halfway thru tx. :)  Hoping we all find SVR.  Nan, hope your husband is doing better.  Happy Easter

[nan535]

"GT2 2nd week tx SOV/RBV  AST ALT dropped from  109,150  to 22, 25 PLATELETS 88 to 115,  hgb 16.7 to 15.5, NEUTROPHILS 2.3 to 3.7 and . waiting on VL results 6 day delay. "

Hey Jimmy
Those are great week 2 results. You must be excited!

Nan

[Hidayatkhan777]

I will pray for you. Hope you will be fine soon.i I also got my Anti HCV result weak positive.i will pray for all of you. I believe god will cure all of you soon.

[cooderbrown]

1 week in with sovaldi, rib, and pegasys good so far thanks for asking love to all...

[Livelife777]

Happy news Vintagechix.    The sooner you get it going the sooner you will be UND.    I also am prone to the heart palp and the anemia seems to be a part of that.     Hopefully your hmg levels will stay up there and the fatigue and racing heart will be none to minimal.   Should it occur it only a short time  so try not to worry as that makes it worse.     What will compound that is caffeine in any form.    Chocolate is a real culprit.    Here's a trick to make it stop.     Lay on your back with a book on your belly.   Take deep breaths and make sure the book goes up and down.    That will level out that rapid beat.   Shallow breaths cause hyperventilation and the circle repeats itself.   Eat some sort of protein with every meal as that regulates the blood sugar and also keeps the heart quiet.   Sandi and Jimmy you guys are doing great and can't tell you how much better you will feel after treatment ends.   In the scheme of life it's just a little blip on the radar screen and before you know it the word hep c will no longer be in your vocabulary.         Kim

[Vintagechix]

I have all my meds and will start the treatment on Monday evening.  Glad to have others who have walked what I will be going through.  Will be looking for your input.  I think I need a lesson on all the acronyms that you all use...no clue what you are talking about with most of them but sure that I will learn quick!  

[JimmyMose]

"4/11 no longer detectable."  Cheers!  
L1z1224  hepc4Sandi Best wishes to both of you and everyone else on treatment.

I have only had a couple of flutters lasting a couple of seconds.

About 23 years ago I had rapid heart beat episode and went to ER took 2 hours to return to near normal.  Contributing factor 60 hours with only a couple of hours of naps during a private poker marathon event.  The lack of sleep, consumption of lot's of coffee (20 cups) and sugar (lots of candy) was the primary cause.  It was a "wake up" scare to at least avoid extended sleep deprivation, excess caffeine. Had a few more but much less severe and shorter ones with the last one about 10 years ago. ( other than the ER time cardio test never showed any concern.

Especially now as I'm older and on treatment my only problem is my excitement being on tx finally with almost no side effects and if any nothing different than I regularly experience before treatment.  Pretreatment sleep ave 7 hours.  Now 5.5 to 6.5  hours  I'm upbeat now, but not too anxious, eating good, staying hydrated and only two cups of coffee a day.        
CAD 4 stents 1 1/2 yr ago and cleared by cardio 2 weeks prior to tx (EKG).

GT2 2nd week tx SOV/RBV  AST ALT dropped from  109,150  to 22, 25 PLATELETS 88 to 115,  hgb 16.7 to 15.5, NEUTROPHILS 2.3 to 3.7 and . waiting on VL results 6 day delay.  

[hepc4Sandi]

Hi, I also have afib not related to heart valve problems. My heart has been fine, but I have had some heart palpitations if I over do it, don't eat or drink enough. They only last about 30 seconds or so. Have found I can't exercise at all, I just get too tired. I do get afib from anxiety, and had an anxiety attack when my hemoglobin got low, and I was so worried that I went to the er and had it checked. That was when my ribavirin was reduced. My cardiologist wasn't worried about me, I have followed up with him. I have had to be very careful to avoid anxiety, but haven't taken any meds, though I do have some Xanax if I feel anxiety building. I have been taking my  Atenolol and low dose aspirin. My viral load was 192,000 at the start and has been UND since week 4 (probably since week 2). My advise would be to rest rest rest, eat lots of tiny meals, keep your blood sugar up, drink lots of water. The hemoglobin levels can be hard on your heart when they get too low, it makes your heart work harder. Anxiety is a Sx of these meds, so if you are prone to anxiety like I am, do what you can to avoid it. I am on day 70 today. Hope that answers your question.

[L1z1224]

Hi,  Was reading the posts and I wanted to ask you about heart problems since you mentioned palpitations.  
I am on day 35 of Sovaldi + Ribavirin regimen.  I am Geno 2.
I suffer from atrial fibrillation not related to valve problems and I have been extremely worried about heart complications with Ribavirin.  Can you share anything your cardiologist might have told you about what to watch for?  I would be very grateful.
In case anyone reading cares, let me add that I have had some side effects.  mainly fatigue and shortness of breath when I walk a little bit.  Also some loss of appetite and a few headaches.
I started with a viral load of 6761290 on 3/14 and the most significant drop was after a week to 1110.  Later on 3/27 I was down to 220 and on 4/11 no longer detectable.
Thanks for any info.

[Vintagechix]

Thank you so much Kim,
I am waiting for my Sol to arrive in the mail, hopefully the end of this week.  My plan is to start treatment Monday.  I want to enjoy the Easter weekend with the family, we always have a great meal together:)  Glad that you made it through.  You only had to do 2 drugs?  I have the triple, Interferon, Ribavirin an Solvadi.  So I am sure I will have lots of questions.  

[cooderbrown]

started last week doing great thanks for asking...

[cooderbrown]

yes it was a hassel between the drs office and the insurance company , but I stayed on the phone with both of them till they got tired of me and went ahead and approved the three sovaldi, ribavirin, and pegasys . They hope you give up they don't want the cost. I also found copay cards on line my detutctible went from 600.00 down to 75.oo with these copay cards. started treatment last week no side effects as of yet goodluck keep fighting

[AWorriedMom]

Have you seen the trial results for the Turquoise II trial that came out at EASL, the European Conference that was held last week? It can be seen on the HCV Advocate site. They are the only pharma company that devoted a whole study to people with cirrhosis. The results for genotype 1b patients were 100% and for geno 1a patients they were almost as good. Even for previous null responders to interferon, the cirrhotic people who did 24 weeks, like myself, had a 93%  chance of cure. Side effects were minimal to none. I would ask my doc if that is something he would consider for you. hey should be FDA approved before the end of this year. I never thought I would be cured, but I was and it was easy.

[Livelife777]

Wonderful advice  Sandi.     I'm a personal trainer so if anyone has work out questions let me know.    Am with you both on wanting to be here for our children and grandchildren.     My daughter had Addison Grace 1 month before starting treatment. What other motivation is there!!!    My son  24  is still my baby.     Think we all had a crazy life as most in the 70s did.    BTW. Day 9 post treatment and gotta say after all these years with Hep C, do I feel great.   Live in Fla and lovin  the renewed sense of being truly healthy after being sick from this virus for so many years.   Can't wait for everyone to be free from such a horrible disease.      Now that is the reason to get thru this treatment.   (And to one day hold our new grand babies).           Kim