Hi Dee71 - I just finished Viekira two weeks ago - I experienced bad allergies and some rapid heart beats - not sure if it was related to treatment but interesting to hear others with the same issues. 

Now its a waiting game to see if I acheive SVR 12 when I go back to doctor's in July....

Continued best wishes....

thank you so much I will call them today. Did you start your new treatment if so how is going I really hope and pray things go well for you. You deserve it. I appreciate the advice as always .Thank You  Dawn

Hello Dee,

I am sorry to hear you are having a rough time right now. I believe you are on day 10 of 84. Start up often has initial side effects that seem to level out. Shortness of breath is a commonly reported side of your protocol.

The cough could be seasonal as we are in a high allergy time of year. If that is the case I would assume it is magnified due to the normally reported sides.

Stay in contact with the Specialty Pharmacy you are working with and never feel like you are bothering them. If you have to call daily, do it, twice a day, do it. They know when something is truly out of the ordinary and can be a great source of information.

The folks here are not qualified beyond sharing burdens and joys and answering some basic questions. Lot's of knowledge but you are an individual under a Doctors care and that Doctor is by far best suited to fine tune things where you are concerned.

God Bless and Keep you, it will all work out.  :)

Jimmy

Just thought I would check in and see how everyone is doing. I have caught some kind of cough from hell and congestion on top of the side effects now is mostly being very short tempered or crying. Still having stomach issues but the ginger is helping , thank you tig for the recipe. Last Saturday I ended up in the ER with heart pounding and skipping and shortness of breath and the two rings on my chest turned to two lines. they think I am having some kind of allergic reaction but did not think it was serious enough to stop. I was glad about that. Been drinking tons of water and I am sure things will eventually settle down and get better. does anyone have suggestions for the cough I have been coughing all night and a few times so hard I felt like I lost my breath I have tried cough drops but I am guessing there is not much else with this medicine. I hope everyone is doing well. Thanks Dawn

Thank you syd and Happy mothers day to you all and hope everyone is well     Dawn

Hi Mike,

i can't find the part when you say your doctor approved of, or disapproved of, benedryl with yiur hep C treatment. Doing without sleep when you're already changing the way your mind works with riba, is not going to be a good thing. I hope you can take that, or something else that works instead, to get to sleep.

Glad  to hear you are persevering Dee. I didn't really get nausea with RIBA - sweet tooth and taste and smell were out of whack - most food tasted bitter or metallic to me unless it was bland or sweet. i also had to buy new deodorant as for some reason as soon as I smelt my normal one it would make me gag.  I would like to say that the emotional issues settle down, but for me and many others here, they just kept increasing. The itch problem was a big one for me too. Some of the medications I am allergic to, give me hives and there's a heat feeling in them which seems to come from deep within my body. Riba  was a bit like that.

Still as Tig goes on reminding us, better 12 weeks of misery than certain prolonged death from liver failure. Tig suggested I go back and look at the old posts from 2010 when a number of people did interferon and riba together for 48 or even 72 weeks. It made me feel humble for complaining when I realised how much those guys endured. 

Keep on trucken you guys. 

Hi Mike,

I answered your question in the V Pak Train thread. Since he was made aware at your last appointment, it should be approved, but always check first. I meant to ask you previously, is your question for the purpose of sleep or are you itching? The use of OTC lotions like Caladryl, Calamine or Hydrocortisone creams will help the itching and rash. You should avoid hot showers/baths, limit them to every other day if possible and use mild soaps, like baby shampoo and body wash. Ivory soap is another. There are all kinds of soaps for sensitive skin out there, use one you like. Oatmeal products are helpful as well.

If you weren't aware, Ribavirin has a way of causing sun sensitivity, avoid it. You will burn easily and it brings on the rash and itching. If you have to go outside, use sunscreen and limit you time. You should also wear a hat and good UV sunglasses. I didn't wear a hat at first and even with lots of hair, I fried my scalp. It was painful and took quite awhile to recover from. 

I have struggled with nausea for years so take a ginger capsule every morn as well as drink ginger tea. The endoscopy and colonoscopy showed nadda. So not sure what it is all about but I can live with taking ginger!  Really helps. I too took Zofran when on interferon and riba. 

And welcome to Mike!

Handy Tip for the GingerAle: ... (Great Recipe, Tig ... I love it)

Make up the ginger syrup as per the recipe then pour into an ice cube tray and place in freezer.

This makes it handy to just place a couple cubes in a glass, add sparkling water, a little honey and lemon juice and enjoy. Keeps for a long time this way and won't spill in the fridge.

I sometimes place two cubes in cup and pour boiling water over for some ginger tea also.

Yum Enjoy,

Dave

Thank you so much Tig I am going to do that and I am going to try your ginger ale That is great news a new baby is always a nice thing to look forward to. I am getting the water down slowly but surely. As always I appreciate the information and the advise I hope you are doing well  Dawn

Hey Dawn,

One more thing. I was nauseated during treatment too. There are a number of medications your doctor can prescribe for it if it continues to be an issue. My doctor prescribed "Zofran", and it's a golden medication IMO for nausea. My daughter is pregnant and has horrid nausea all day long. She was sick during her first pregnancy too. Her doctor prescribed that and it has worked well for her.

The second thing I would like to recommend is my homemade Ginger Ale recipe. It's good stuff and all natural. We have had several people try it here and spoke highly of it. I'll place the link below. Try it and see if it helps. Give the store bought variety a pass, too much sugar and too many preservatives.

Ginger Ale

Hi Dawn, 

Do your best to take them 12 hours apart, especially the Ribavirin. They may mention some wiggle room, but the important thing is to take them at the same time each day and doing so keeps the blood levels of the medication steady. By putting your medication in a pill container labeled AM and PM, then setting your alarm for those same times each day, makes it an easier thing to remember and keeps everything constant. Treatment is simpler and shorter, but keeping your administration times the same is important, regardless of the individual protocol. Keep pounding that water, it's a liquid blessing on these medications!

Viekira Pak:

Take this medicine with food as follows:

• Take 2 pink tablets plus 1 beige tablet at the same time every morning.

• Take 1 beige tablet at the same time every evening.

• Ribavirin every 12 hours

Hi mike77 I know it is scary after you read about it but most people do just fine I just happen to already have some issues with anxiety and mood before I started. I am happy you were able to get treatment. I just started 6 days ago and I am so thankful I found this forum the people on here are awesome and will help in any way they can. I don't have much experience because I am new as well but I can listen if you need to vent or just want to talk and will do what ever I can to be helpful. All of the people on here are the only reason I have been able to push through but I just also want you to know that it does not seem typical to have issues this soon so you may have no issues at all. good luck and talk to you soon.      Hi Syd thank you I am going to check out the posts. You are so right it really does strip you raw emotionally and just wondering does it build up as you go or ease up any ? I think you did the right thing it is more important to make sure you sure you are ok , especially when you have had trouble with other meds in the past it is really scary and you still kept going that is the greatest part I haven't thrown up yet today but I am guessing it has to with the fact I can barely eat my stomach has been a mess I wanted to lose a few pounds but this was alittle more than expected lol  but I guess I will see how today goes. Dave thank you as well I will also add those to my list and also I glad you mentioned that one nurse told me to take them twelve hours apart and since I have been up all night not being able to sleep I took it at two in the morning and then two in the afternoon and then a different nurse said I did not have to wait twelve hours so I change it to a little earlier and then read if its after twelve hours its to late so I am a bit confused. Thank you all so much I couldn't do this without you .  Have a great day   Dawn

Hi Mike!

This is coming from one of the most miserable failures there ever was on this protocol. ME.

If I had to do it again, the same treatment, for twice as long, and I knew it would work, I'd do it again in a heartbeat.

Any of it is temporary but the SVR is forever unless you by chance return to foolish behavior. You have nothing to fear in treating this disease, and everything to fear in not doing so.

I am a Christian and you are in my prayers. You will do fine!

JimmyK

Hi Dawn,

you should go back and have a look at linuxters posts when he was on treatment as well as Firechics. They both felt the pain but you couldn't help laughing with them. 

My doctor asked me the same question about suicide and I know I should have said no but I didn't and so then that was it. Stop riba. There's a big difference between thinking suicidal thoughts and acting on them you mongas. Other than that I think me and others who took it at the same felt exactly as you are describing. I didn't want to go out, felt sooo angry but also in tears at the mention of sentimental stuff that I'm not usually affected by. It just strips you raw emotionally. But it's not a long time, and you will be glad you stuck to it when you have finished and are virus free. As long as your doc doesn't think you're having an allergic reaction. I am also allergic to a range of meds and it's frightening. No one i know here actually vomitted as you doing. Has that stopped yet? 

Oh, and music with headphones (or not) seemed to help a lot throughout Tx.

Main thing is, if something bothers ya, just do something to change the scene or mood ... there are lots of little tricks that help.

One that Tig56 taught me was that when you're really feeling the meds ... just know that shows they are working ... doing their job ... they've got a Dragon to slay so help 'em out ... water, nutrition, meditation, friends, positive thoughts (affirmations) etc.

Don't know if anyone mentioned it or not but set an alarm twice per day so you wouldn't forget to take your meds on time (that's very important).

Using a weekly day/night pill container helps you remember whether you took your meds or not and establishing a routine to take them the same times every day is a must.

Life is Good,

Dave

-- Edited by Linuxter on Friday 6th of May 2016 02:55:50 AM

You are awesome  I appreciate you being honest with me and sharing your experience. My doctor did the same thing until I started telling her how I was feeling and she hit me with do you feel you are going to hurt yourself or someone else  That freaked me out even worse I was like what do you mean you told me that wouldn't happen. I was pretty mad. I am going to try all of what you suggested you made it through and I am so happy to hear you killed it and I am glad you are feeling better and even though I know in two months you will still be celebrating your success I will send some extra prayers your way. You deserve to feel better you fought hard enough for it. I wish I could put into words how helpful this was instead of sitting here feeling like I am losing it. I don't think thank you can really express how much better I feel. I am so thankful to have met such amazing people that take the time to help even though that have their own struggles to deal with. When the world feels so rotten it is people like you that prove there are still so many wonderful people out there. Have a great night   Dawn

Hi again Dawn,

Be aware that the Ribavirin DOES have an effect on us mentally, all my doctors downplayed that but anyone who has been on it knows ... and there are many of us here. I can't tell you how many times I second guessed things and riding the Riba Train is often more like riding an emotional roller coaster.

Take it all in stride though, once you realize that it's amplifying all of your emotions, that alone will help you gain control and feel more empowered to show it who's boss.

DO continue with testing periodically to monitor your hemoglobin (CBC test), that's important and discuss continued testing with your doctor. If that gets too low the doctor will likely back the Ribavirin to a lesser amount but you want to hang in there as long as you are not in danger with the anemia to give the meds a chance to do what they do ... kill that Dragon

It does help to do things to help get you out of that funk ... exercise (to whatever degree you feel comfortable with) helps a lot but HYDRATE before, during after and keep hydrating ... it helps in a HUGE way. Treat youself to something you like, try to continue to do things that you enjoy ... familiar things help you feel a sense of normalcy and in control.

Having just gone through this I KNOW exactly how you feel ... You can do this ... I can tell by your posts that you have it in ya ... I'm feeling much better now, being off the meds, Dragon is dead (won't be able to confirm that for anothr 2 months but it is), HCV being gone I'm sure I'll start feeling better because of that ... it's all good.

Wishing you the best,

Dave

Thank you so much I have been crying all day your post made me cry but in a good way this time

 I feel like a lunatic I had to cancel an appointment because I didn't feel good enough to go and started crying while I was on the phone canceling lol your post was so helpful I have got to get myself under control. I think that is the worst part is feeling I can not control my emotions. I am so glad you are done and I hope you are feeling better. I can not tell you how much better I feel with all this support. I am going to take all of your advise and keep going. I know I will find my way through this thanks to all of you.  I am going to do something positive today and try to get out of this funk. Have a great day I am so grateful  Dawn

Hi Dee,

I just finished 12 weeks of 400mg Sovaldi / 1200mg Ribavirin and had a few rough patches but kept concentrating on forcing myself to drink TONS of water and kept up with eating lots of fruits, vegetables, protein and grains ... I did a lot of the nutrition through making smoothies and I think it really helped a lot.

The water and the greens really help and I ate lots of almonds and walnuts for protein as snacks.

Hang in there, I found treatment to be a psychological challenge (mind game) where I needed to have an upper hand in keeping control of my emotions. I did this by posting here a lot, leaning on my friends here and having a sense of control over it all by concentrating on the water, sugar-free juices and good nutrition. I also left room for a higher power in my life and it helped with all of the above.

I would suggest doing something that gives you a feeling of control over everything, I know it can seem overwhelming at times but lean on those things and those people who can help you along the way, we'll be here and know exactly what you're going through so lean on us all that you want ... that's what we're here for. Concentrate on grabbing the bull by the horns and showing it who's boss ... you are, you do have the power to control things. Use that inner strength to empower you ... You've got this! You'll do fine! The meds will be present for a reletavely short part of your life, they've got a job to do. Do what ever you can to help them do that job. Water DOES help, good nutrition DOES help, Empowering yourself by leaning on friends, reaching out and we'll be here to help along the way.

You can do this, You'll be fine.

A friend,

Dave

thank you both I appreciate it. I am so sorry you went  through all that I hope things are better I know what you mean because some people do fine but you have been so brave and stuck it out with all you have been through. You should feel so proud of yourself. I still feel like im on fire and threw up all day yesterday and weirdly enough the rings faded yesterday for now I am drinking a ton of water but my stomach has been a mess. that was a great way to describe how I am feeling the anxiety and feeling out of control and paranoid that is what is bothering me the most and I just feel so bad I do not want to leave the house I have had several bad reactions to anti depressants over the years I had a severe reaction to imipramine and ended up in the hospital. I am hoping this will get better but I am so afraid its going to get worse but for now I am going to keep trying and just see how it goes thank you for your support and sharing your experiences it is so helpful I think had I not found this forum I would have already gave up thank you all so much. Dawn

Hi Dee,

i took 1000mgs of riba  daily. I think it is weight based - I am about 60kgs. Halfway through the 12 weeks, my haemoglobin had dropped to 100 (i think different countries put the decimal point in a different place, so that might be 10 for you.) Some doctors are happy to let it get down to 90 but I don't think you should go much lower than that. Somebody might correct me here- I'm just a patient, have no medical knowledge. 

My dose was lowered at about 8 weeks to 800mg Because of haemoglobin drop. I stopped taking it at week 12 because I felt so depressed, anxious and generally out of control. it was very disappointing not to manage the treatment I had fought hard to secure. I felt weak compared to others, but for each of us, it us our own unique fight and all we can do is the best we can. 

How are you feeling today? The red marks sound scary but I have never heard of that happening because of Ribaviron. Itches yes, rashes certainly - but not what you are describing. low haemoglobin can make you feel breathless but it takes weeks to get to that stage - not days. I have had pounding heart feeling even now when I'm on sof/dac with riba an 8 week memory away. And I am still very tired. These are strong drugs and they have different effects on different people. 

Of course we all want you to stay on your treatment because that will give you the best chance of defeating the virus. However at the end of the day it is your doctor who must make that decision with you. Hopefully you are seeing someone who is experienced in this area. All of us here regard medical opinion as paramount, so if you are feeling really bad, go back and let your doctor be the judge of what is happening to you. 

Good luck,

Syd

Dee I drank a lot of decaf tea as well. Ginger tea, green tea, as well as putting fruit in a water bottle with a diffuser. It just helped with getting that extra H2O in me. 

Thank you, did you have a lot of side effects? How did you get through the drop in hemoglobin where you able to function? Thank you again the support really helps  Dawn

In my opinion, the side effects are worth the cure. I think you are wise to stay on the protocol while you wait to see the Dr.

Don't want to give the virus a chance to mutate, just keep bombarding it with your meds.

My hemoglobin dropped low (halfway through) enough the Dr wanted me to lower my riba dose, but I stayed on the full dose.

stay strong 

Alison

Thank you Tig I have been stressed because she didn't even say they could reduce it she basically said it was all or nothing the dosage I am on is 1200 I have been drinking more water but I am going to double it because I really do not want to have to stop Thank you for the links I appreciate all the information and advice I can get. I can not thank you enough you have all been wonderful. Hope you are doing well Dawn

Hi Dawn,

Your signature indicates F1 and you are treatment naive. Do your best to stay the course! You can reduce the dosage of Ribavirin depending on what you're taking now. What is your dosage? Discuss all your options with your doctor and in the meantime as you're aware, HYDRATE like there's no tomorrow. Jimmy's right, it sounds like you were lacking the amount of water you needed. This is a common response to dehydration on these medications. 

I'm including the link to Abbvie's information on V Pak. There are accompanying links available there as well. If you would like additional information, let me know and I'll provide you with it. Do your level best to stick with the program. We'll be here for you if you have any questions at all.

Viekira Pak Info

Additional V Pak Info

-- Edited by Tig56 on Wednesday 4th of May 2016 10:18:58 PM

thank you I have been drinking a lot of water yesterday and today. I talked to my doctor and she said I should not be feeling like this this soon and is concerned I am having  a bad reaction She asked if I wanted to continue until i come in and see her and I told her yes she also said if I do have a bad reaction and have to stop the ribavirin I have to stop viekira as well because it only works together and then she said it will be harder to be able to try another treatment. I am praying this gets better and I am going to stay on unless they pull me off she said if I can stand it we will see when she does my blood work.  I am going to keep trying and drinking water thank you again for your help

Dawn

Dee it should be considered that 18 hours ago you reported that you had only taken in 2 small bottles of water yesterday. Personally I believe the way you woke up is indicative of why we are so adamant concerning hydration while on this treatment. 

I know you don't like the way you feel and I am sorry you feel bad. At three days in I don't think you should feel like this other than the lack of water.

3 to 4 liters a day may be hard for you, but it likely beats how you feel right now.

We are all pulling for you Dee and you can do this! Treatment is just a blink in life and yours will get better once through this. 

JimmyK

Thank you all for the kind words and encouragement I am doing better with the water just hard to get it down with my stomach being messed up. I feel like my body is on fire today and woke up with two red rings on my chest on each side its not itchy but is weird. I am waiting for my doc to call back so i can ask and i was out of breath with racing heart walking to the mailbox just wondering if that is normal this quick its only been three days.  Hope you are all doing well thank you again Dawn

So glad to hear you started. I will not post the Carpenters, We've Only Just Begun. But it did cross my mind. Hydrate, try to take in nourishing foods and if you can exercise, even if it is just walking or stretching.....you got this!

Hi again Dawn, I`ve been waiting to hear that you`ve started your tx, and I know just how it feels having to psych yourself up to it, you`re not alone!

As others have said, it`s important to keep yourself well hydrated at all times, you`ll really notice the difference.  Just keep taking the pills on schedule day by day, listen to your body and rest when you need to, and remember to always take your riba pills with food.  

You`re on your way to being Hep C free...  so whenever you start feeling anxious just remind yourself of why you`re doing this! 

Well done!! 

Dee,

The key to minimizing your headaches and many of the side effects from these medications is an easy recommendation, WATER and lots of it. Do your best to consume 3-4 liters of good, filtered water everyday. I can't stress enough how important that is! You'll see it mentioned time and again here on the forum and elsewhere when the subject of side effects from these new treatments are discussed. Carry water with you everywhere and sip on it throughout the day. Set an alarm if you need to as a reminder. You'll notice an improvement right away!

HYDRATE 

Hi Dee,

some people feel more frightened and anxious than others. There are a lot of courageous people here who seem to really understand that those negative emotions don't work and they can turn them off. I'm not one of them. I was really freaked out before treatment and although I feel more positive about it now, I know I will be frightened until I reach virus free status. There doesn't seem to be a lot of point in beating yourself up because you are who you are. The people I "know" here seem to accept me without judgement and go on providing support. This has been the wonderful side of my journey. 

Its a good place to be, so drink up, and if you need comfort from others, they're here.

Syd 

dee71 wrote:

---

 I am  going to drink more water i have only had two small bottles today and my head is killing me. Dawn

---

Thank you so much I needed a good laugh and that is the truth lol I was just waiting for it to happen. I am  going to drink more water i have only had two small bottles today and my head is killing me. I appreciate the laugh and encouragement.   

i am coughing alot but probably from smoking but that will be next on my list.  I hope your doing well and feeling great  

Dawn

 That a girl. See, that 1st dose didn't give you a heart attack, stroke, cancer, emphysema, delirium tremens or cerebral hemorrhage. You'll probably feel some differences at first as most anyone does when starting a new strong medication. But those intial Sx's should level out and you can settle in for the ride. The riba will affect your energy level later on but you already know that. Welcome to the road to your HCV free future. HYDRATE!!!

Thank you syd I finally started yesterday a day late mostly because i have been such a baby about it lol  I need to think positive and stop waiting for something bad to happen . So far i feel a little weird and have had a two day headache but I am hoping it does not get worse. I keep thinking about how all of you have made it and some of you had alot more obstacles to over come so i know that should make me really feel ridiculous for being so afraid of this. I probably should not have researched the side effects so much lol    I hope you and everyone are doing well and again i really appreciate the support there is no better than someone who has been where you are.    talk to you soon   Dawn

Hi Dawn,

so happy to hear that your doctor had the haemoglobin test done for you. I will be thinking of you, taking your first big swipe at the dragon on Saturday.

Cheers,

Syd

Thank you and nice to meet you ragdoll That is a great idea

   Thank you syd I am actually going to start Saturday instead when I talked to my doc about the anemia concerns he did blood work to see where we are starting from so now Saturday will be the big day. I sure appreciate the support and advise I am really feeling a lot better about it hearing about all of you who have done this and despite all the issues that happened and you still pushed through. I have to say I have never met such courageous and caring people before finding this group. Thank You for the support and showing me this can be done.Hope you are all doing well

Dawn

Hi Dawn, welcome to the forum and to the Viekra train.  You will do great.  Keep postitve, eat healthy, and drink lots of water.  I did not have to experience the RIBA personally but watched my husband , RC, deal with that.   Everyone is different. So don't worry, plenty of people  here who have had this experience will walk you through. It will go by fast.  If you have time you might want to keep a journal each day and IF you have a "RIBA "attack write it down to laugh about later.   Plenty of story's on forum already of RIBA events.    Stay strong ... You got this.   CC

Hi Dee,

I'm not sure whether you have started your meds or whether its tomorrow, but we'll be cheering you on, knowing that every day is taking you closer to slaying the dragon.

syd

Thank You both

No problems Dawn. It was my mistake, not yours. Actually I care less about the stigma as I get further along. It's just that I'm wary about my real name appearing anywhere on the Internet.

And thanks for the speedy fix cinnamon girl

xxxx

No problem, Dawn, and no need to apologise, it wasn`t anyone`s fault.  These things just happen and I`m glad I could help. 

I`m very pleased you`re feeling more positive about your treatment now.  Hearing about other people`s experiences always helps, and it`s one of the great benefits of joining a forum like this where everyone is so willing to talk openly and honestly and give plenty of encouragement and support to each other.

Good luck! 

Thank you for fixing that I apologize for the mistake. Syd I am really glad to hear after all you have gone through things are better and I am sure your results are going to good. Thank you for sharing your experience with me it helps a great deal. Nice to meet you wendyo I am going to try to stick with the avatars just in case. I am glad your second treatment has worked that is terrific news. I think I will try just getting through one day at a time. Thank you also observer and that is so much to go through after  reading the struggles that you and so many others have endured is really making me see things differently. I am so happy that you are feeling better and after all you all have been through you are still so positive that is truly amazing. I hope everyone has a great day and I do not think anyone noticed the mistake because cinnamon girl saved the day and fixed it quickly, thank you again

Hi Syd,

I was online so I`ve done the edit for you, on your post and on Dawn`s reply... privacy is important on an open public forum like this, and we all respect that...