Hep C Discussion Forum

Larry2384 · Member

RE: Started Tx with Sovaldi & Ribavirin

LTChaos · Veteran Member

Today is the final day of week 4 for me. Symptoms are fatigue, and emotional overload - but both of these symptoms are manageable.

One odd thing - I am getting fever blisters - they seem to be non stop. In the past I have had them during times of stress, so it may be related to that - thanks Express Scripts! I am not sure if this is related to the treatment or not, but I will mention it to my Dr so they are aware.

I've gained a little weight. The lure of comfort foods right now is huge - between a brutal winter, and the stress of treatment, I seem to gravitate towards them. I am avoiding greasy or fried unhealthy foods & if I have pizza, it's a vegetarian (loaded with spinach & artichokes), and trying to mix salads in for main meal 3 times per week. I am hopeful once I finish treatment my energy will return & I can work this body back into shape!

Forgot to mention - I have been sleeping ok - except this morning my bladder woke me at 3 AM & I was unable to get back to sleep. I am drinking water, so almost always have to get up during the night at least once. Hopefully this was a one time thing!

-- Edited by LTChaos on Saturday 1st of March 2014 05:31:42 PM

Loopy Lisa · Guru

Thanks for posting folks, it gives me a good idea what to expect. Seems not too bad compared to the Interferon devil, I hope it goes well for you all and the sleep issues calm down. Good luck!

Larry2384 · Member

Wayne,

Thanks for that info.

Good luck to you too! I am fortunate to have gen2b and I can't even imagine what everyone else is going through.
I feel badly for whining about my insignificant insomnia while everyone else is going through hell compared to me.

God Bless!

Larry

OldenSlow · Senior Member

Larry,

Like Dee738, I find the Temazepam (7.5 mg) to be the least oppressive of the sleep meds that I have tried. I don't much care for any of them, but I did have to do something to address the current med-induced insomnia. Was getting way too loopy after several nights of little, in any, sleep. I personally found Ambien and Lunesta too strong for me. I'd usually get some sleep, but wake with a hungover feeling that wouldn't shake itself out for several hours. They are all addictive, but the potential payoff at the end of treatment is so huge, I may just have to settle for being a bit of an addict for awhile.

I wish you well,

Wayne

Larry2384 · Member

I have a prescription for 10mg ambien which is good stuff and worked great for a few days. Now it gets me all doped up but I still don't sleep. I am trying to ween myself off because I don't want to get hooked on anything. My 88 year old father got hooked on ambien and it is quite addictive. Everytime he came over he was rummaging through my cabinets looking for some and I never had any before until I started these meds.

Last Saturday I played vigorous racquetball hard for 4 hours and took 800mg of prescription ibuprofen which typically will make me sleep like a baby. I also took an ambien at 9pm and didn't sleep a wink all night.

That much racquetball should have caused a man my age to sleep for 2 days. This insomnia is starting to get really tough and the severe winter is getting me depressed. It is going to get -7 tonight. This has been the worst winter I ever remember but the older I get the worse they seem to bother me.

robertsamx · Guru

Larry, way to go! thats great news and gives me hope. Im a type 3, i'm 7 sovaldi and 42 riba into my treatment and yesterday just started to notice the sligh iching,and having a little trouble falling asleep, waking up often. I AM NOT COMPLAINING, just puting this out there for us all to share and compair notes. I go in this friday for my week one blood donation, that will be 10 days into treatment, looking forward to geting my results. My energy is good, shoveling snow seems to be a daily thing right now, hope it warms up soon.. RC

Dee738 · Member

Larry, I have a sleeping medication I've had for years to use for occasional insomnia--temazepam. It works quite well for me and you might want to ask your doctor about it. That said, it's a benzodiazepine and shouldn't be used long term or daily, but it might help you through this rough patch. Not sure which sleeping med you are currently taking?

I see that insomnia is a fairly common side effect with the Riba. I hope I won't have to take the temazepam every night as my treatment progresses...

Larry2384 · Member

Dee,

I see you have only been on treatment for ten days. I am really having trouble sleeping and haven't slept at all the past 2 nights and sleeping pills aren't working anymore. They make me drunk but still don't go to sleep. I haven't had any nausea or other issues but the insomnia is starting to get really difficult for me. I have had some irritability but maybe due to insomnia and maybe due to ribavirin...don't know. I am looking forward to getting this last month done and getting off these meds but realize how lucky I am compared to the others here who have gone before me.

Larry2384

-- Edited by Larry2384 on Tuesday 11th of February 2014 04:27:40 AM

Tig · Admin

Hi Dee,

Welcome to the forum! I'm glad you found us too! This is a great bunch of people that I consider friendly and knowledgeable. I invite you to share any information, like lab tests, biopsies, etc., it helps us offer better informed opinions if needed. you're fortunate (?) to have GT 2, as it's one of the easiest to treat and great SVR rates! You're on a great Tx regimen and will be done before you know it. I'm so happy that these new treatments are now available. If I had waited just 6 months, I'd have done a Sovaldi regimen too. There are many of us here that have gone through repeated courses of Interferon and you're so lucky to have avoided that drug. Good luck and if you'd like, please introduce yourself in the New Members section. Everyone would love to meet you!

Best, Tig

Dee738 · Member

Hi folks!

Happy to have found you all. Like Larry, I've had HCV genotype 2b for almost 40 years. I'm 59 years old, and started the same regimen on Feb 1. So far, the only mild side effects I've noted are slight nausea with the Riba if I don't eat something substantial with it, and some mild diarrhea in the mornings. I'm thrilled to be doing this, having closely followed the drug research for most of the 20 years since I was diagnosed. I've been one of the lucky people with persistently normal enzymes and low fibrosis, so I wasn't about to subject myself to interferon.

Unlike some, I feel **less** edgy and irritable now. My head seems to have cleared, which is helpful, seeing as I'm raising a teenage girl on my own! I've also read some interesting research recently. Apparently there is evidence that HCV crosses the blood-brain barrier, essentially resulting in a brain infection that may cause memory problems and depression. My visual memory has been terrible since forever, and I have to wonder if there's a connection. Anyone else noticed this?

It's strange to realize that I've lived my entire adult life with this infection. I don't know what it's like NOT to be infected. But that's changing now and I'm curious and grateful to see what the next, HCV-free chapter of life has in store for me! --Dee

robertsamx · Guru

Hi LT, I"m on day 3 of same treatment. started tuesday afternoon at study hospital. So far I feel great. I will keep in touch with you and we can compair notes. Im not itching as of yet, maby a slight shaking feeling when I am still, no mood swings and full of energy!! From what people say about the treatment we are on it should be fairly SX free. Keep it up ! RC

Larry2384 · Member

Enavigo3891,

Good Luck to you with your tx. It shouldn't negatively impact your life much at all. Insomnia and restlessness at night seems to be common but a 10mg ambien helps me sleep like a baby. There is some mild itchiness but it isn't intense like with poison ivy. It doesn't occur every day.

One issue for me is that the ribavirin can cause little things to irk and annoy me more than normally and I can go from passive to intense really quick if someone pushes my buttons. I have always been that way but greatly amplified now. I have a couple of days where I was depressed but I am out of work and all this wintry weather in the Midwest has hampered my job search and can get a person like me down. I like to work! It has been a crucible in some ways but a walk in the park when you look what some of the others have to go through.

Keep me posted of your experiences. I am interested in hearing about your trials and struggles through your tx. There is certainly nothing that will occur to get apprehensive about. You will hardly notice you are on tx.

Enavigo3891 · Senior Member

Great news Larry! So glad to hear it and about your hemoglobin! I guess if your docs aren't concerned about your WBC's you should be okay!

Larry2384 · Member

My hemoglobin has not dropped but they are checking me every two weeks now as a matter of new protocol for all patients. My white blood cell count was low prior to starting treatment and has dropped slightly every month. I am not sure what this means but they don't seem to be overly concerned about.

My doctor just called 5 minutes ago and said that I am undetectable <15 now. My first lab had me at 1.6 million viral load and after 4 weeks I was at <43 and now <15. This seems like great news to me.

Hep-C Dragon Slayer · Veteran Member

Stay Strong LTCHaos,

I am on day 30 of new triple tx (1200 mg Riba). Before you know it, you will be on day 30 to.

My virus was UND on day 20 for me.

54 days to go.....

P.S. My wife said my grumpyness was a sx prior to treatment !!!

Michaele · Guru

Hey there LTChaos, I was wondering what your dosage of Riba is. My doc wants me to do Sofosbuvir, simeprevir and Riba for 6 months. I see you have children, My son is almost 20 and lives at home, he has a way of never knowing when to say nothing and back away slowly. With younger children there is always time out and go to your room. Good luck to you, and sorry about the itch, No long hot showers or soaks in the tub. wish I had better advise but the forum has it covered. Michaele

LTChaos · Veteran Member

Cinnamon Girl - Thanks for the tips, you know as soon as I tell myself not to scratch two more itchy spots pop up confuse . It really isn't horrible yet so hopefully this is as bad as it gets...

Larry - That is great to hear! It sounds like treatment is working for you, that is awesome news & gives me hope.. My side effects have not been intense at all, hopefully it stays that way. My Doctor is only doing cbc's every 2 weeks, so I won't get another viral load test until the end. That is a little frustrating, I was never good at waiting. It will go by quick though & I am determined the results will be und.

Enavigo - I agree. I consider this forum a life saver. I was totally lost when I found out I had Hep C, and much of the internet is loaded with flat out wrong information! It is wonderful to have a group of people who know what we are facing & are so knowledgeable!!

For everyone on the Hep C Discussion Forum - You guys are really doing something important here & I hope you all know that!

Enavigo3891 · Senior Member

Hi Larry - so glad to hear you're doing so well! Gives me high hopes, I will start the same treatment next Tuesday 2/11. Have you had any issues with your hemoglobin dropping? I am thankful I am able to keep up with you, LTChaos, and Gary as you're all ahead of me on this. Very happy for you peeps! Stay strong... 84 days to the rest of your life!

Larry2384 · Member

LT,

I just received my final bottle of Sovaldi and Ribavirin and have completed 2 months of treatment without any significant side effects to speak of. 30 days left to go!

I have noticed my skin is dry and itchy but hasn't been much of a problem. My 5:00pm beard stubble scratches and irritates my lower neck for the first time in my life and some itchiness on my chest similar to a morphine itch mentioned by someone else below but it isn't unbearable by any means. I have had issues with restlessness at night and sleeping and my doctor prescribed 10mg ambien and now I sleep like a baby. I can get frustrated and angry more rapidly over little things than usual which I have heard is a side effect of ribavirin. Overall, the experience has been very positive thus far.

My liver functions, bilirubin and enzyme levels are normal for the first time in years. I expect to receive my viral load results tomorrow and expect they will be <15 but remains to be seen. After one month, my viral load was <43 down from 1.6 million. I have NOT had any fatigue, dizziness, or any headaches.

I have been unemployed thus far since beginning treatment and initially I was worried that finding work might be a problem while on treatment. Now I don't think so at all and hope to find something soon. My only concern about working is being able to get a good nights sleep and a mild sleeping pill seems to resolve that problem. Hopefully, you shouldn't have any problems working and should help the time fly by faster.

Hope I have eased some of your concerns.

Best of Luck to you LT!

Larry 2384

Cinnamon Girl · Guru

Well done for getting started, LT, hope it goes smoothly for you!

An itchy rash from Ribavirin is quite common, and as Tig said, it`s only in severe cases that you`d have to stop treatment and that`s more common with the triple tx with Incivek. If you type `rash` into the search box at the top of the page you`ll see a list of threads where it`s been discussed before, along with many tips for coping with it, such as showering in cool water rather than hot, wearing loose fitting clothes, and most importantly, don`t scratch!

Best of luck to you and to everyone else getting started, keep us posted! smile

LTChaos · Veteran Member

Thanks for the quick response Tig, that makes me feel better. I don't think it is serious enough to take anything yet, so for now i'm fine. But it is good to know in case things progress any more.

Tig · Admin

One more thing is they generally don't take you off the meds for a rash. They want to know because occasionally the rash is very severe and can cause additional problems. Most of the time these rashes are controlled with creams, oral antihistamines and shear willpower! Do your very best to not scratch!! Try calamine, caladryl and oatmeal based creams/lotions. They really help!

Tig

Tig · Admin

Usually Benadryl is approved by our docs, mine had no problem with that at all. Another medication he told me to get was Certrizine (Zyrtec), which is OTC and was very effective without making me drowsy. HTH!

Tig

LTChaos · Veteran Member

I think I am having some itching related to Ribavirin. It isn't terrible, just noticeable. It reminds me of the morphine itch, hopefully it doesn't progress... I did call the Dr & ask them if I can take Benadryl. They said it was ok, but wanted me to call if I develop any kind of rash. That worries me a little, will they take me off of the meds if I develop a rash?

LTChaos · Veteran Member

Hi Enavigo, I pretty much jumped right in. I went to see a play on Saturday with Friends, so I wanted to wait for that before starting. I read as much as I could, but did not psych myself up. I have had a lot of fatigue before i even started tx, so I am not sure if that symptom is related to the Riba, or the Hep C. The irritability is a definite symptom & I have to work hard to keep that in check, I have 3 kids & can't be losing my temper over every little thing....

Gary, It's good to see someone who is ahead of us, and hopefully your hemoglobin doesn't drop too much more.

Enavigo3891 · Senior Member

LT - got my approval today, should have meds by the end of the week so I'll be a week and 2 days behind you (im waiting until after the billy joel concert to start). I'm keep thinking that I'm going to have all these symptoms because I've been reading about them and every time I feel something I'm might be like, "is that a symptom?" Does that make sense? Did you psych yourself up for this or just kinda dove right in?

hepcsurvivor · Member

LTChaos,

We're on the same TX except I get to do mine for 24 weeks. I am on day 22. The fatigue hits me worst about an hour after the Ribavirin, and there are a few headaches and shortness of breath for me but nothing really too horrible yet.

The thing that has me worried is my hemoglobin is dropping a bit too fast. If you can stay ahead of that issue, you'll be in a way better situation.

Best of Luck to Us!

Gary

-- Edited by hepcsurvivor on Monday 3rd of February 2014 06:20:08 PM

LTChaos · Veteran Member

I am on day 2 of the 12 week treatment plan. So far I did feel some fatigue & a little dizziness. I have been grumpy, but that seems a little better today than yesterday.

It really is not that bad... Week 12 will start on Easter, which seems kind of symbolic in a way. I didn't plan it out that way.

I'm working full time, and not planning any time off. We'll see how that works out.

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