Howdy, Jaggles:

Thanks for your note. Yes, the diagnosis starts a wave of emotions. The relief of knowing my kids were 'safe' was immense. But I had had the virus for over 20 years when I was diagnosed, and I found myself lying awake at night worried about who I may have passed it on to. That still haunts me.

To your question, I am in the US and have had no barriers to getting Epclusa/Riba. I am lucky to have good health insurance through my employer (although I am a fan of universal healthcare like your NHS, but that's a different discussion altogether!). My out-of-pocket cost for Epclusa and Ribavirin combined is only $40 per month. That is unbelievable to me, but I think they believed my liver was about to take a nosedive and the drug treatment would cost a lot less than a liver transplant.

I will keep my fingers crossed for you...I hope you will be able to start your treatment sooner than later.

Hi better late..this is,good news to hear others Getting Epclusa. you are in the right place here for support. From what I've been reading looks like this particular drug is a miracle so I'm sure it will all start to get good again soon. I know how awful it felt for me to tell me partner and family and then all ge tested...coming back negative WHAT a relief it is 

glad that you are getting sorted finally ..good luck and keep,us,posted howmthings are I'm curious to know. may I ask, are you in uk as I'm waiting for NHS to make their move. I think it's a bit,of a postcode lottery at the moment. 

All the very best xx J

Yer a trooper alright!

Yes, your ALT and AST  express the "crashing" we all want to see, and IS telling. A very good, correct and substantive direction. Shows these meds are working well and you are already well on your way. Well done! Your next draws will show them dropping even more. Believe me, your viral load is being dessimated and crashing as well as we speak! I can't wait to hear of your dropping viral load next!  C.

Wow, I am glad to hear the lab results are that good - I wasn't sure if that was pretty 'normal' or what. It seemed like a big drop to me! I have my AST/ALT readings all the way back to 2008, and this is BY FAR the lowest it's been all that time.

As for the itching, I am doing OK on the topical stuff. I wonder how much of it gets absorbed and then needs to be processed by my liver, though. I have been very scared of swallowing ANYTHING that might compete with the Epclusa/Riba - I don't want to mess up the treatment, so am kind of unwilling to take another oral drug unless I am about to go insane. I had to take an aspirin for a headache, but so far, that's the only extra pill I've taken (and it worked).

Oddly, I have kind of gotten used to how the rash feels (kind of like a sunburn) under my clothes and never really feel like I want to scratch until the air hits the rash. I am trying to respond to that urge by applying the lotion and agree with you - pressure works and scratching just makes it A LOT worse (yes, I scratched until I was bleeding a time or too). Anyway, the benadryl stuff seems to have dried the thing up quite a bit, and there is no visual rash on my arms or legs today, just kind of hot feeling. I can live with this for another 10 weeks. (On a side note, PRURITIS=ITCHING - I had to look it up! It's always a good day when you learn a new word that is legal in Scrabble - ha ha)!

I sleep OK, but wake up more often during the night (SO MUCH WATER) and sometimes have trouble going back to sleep. I get more physically tired than sleepy during the day.

Still feeling thankful and cautiously optimistic...best to everyone out there! 

Oh ya, the dreaded Riba Rash... My sympathy! I had the itch so bad and it was Zyrtec (Cetirizine generic) kept me far more comfortable. Benadryl may work for you too. It doesn't always require a prescription strength drug, just doctor's permission. It shouldn't be a problem, but you always want to ask first. 

If you have any questions, let us know. We used to deal with Riba side effects more often in recent years. That was when everyone took 1200 mg doses of Ribavirin daily. Lots of stories on that. I'm glad we're seeing less use of it, but it continues to be a very effective drug when combined with some of the new DAA's.

Less frequent, lukewarm showers, light clothing, stay out of the sun and use the lotions, Calamine and Caladryl, they help. Try an oatmeal soak, always use mild soaps, like Ivory, baby soaps, etc. Avoid perfumed stuff while you're dealing with the rash. 

Oh.... HYDRATE!!

Hey, hey Betterlate!

Well, I should say!!, they are pleased with your 2 week in ALT/AST drop!!! Just what they, you, and all of us want to see!! Beauts! Very telling! Very good news!.

So sorry about the continuing skin issues - I am very glad you bumped heads with them and made them fully aware of the rash, it's always good to show them the areas, for them to actually see them, so as to ascertain it is not something else (additionally, aside from riba rash) and/or to check that the skin has not subseqeuntly (secondarily) become infected from being "open". I know how hard it is to not scratch, the ONLY thing you can do is try to figure out ALL the different ways to decrease the inflammation and pruritis, which in turn might decrease your urge to scratch a little.

Are you doing the cotton clothing thing, and staying "cool" enough?

When the urge to scratch is unbearable and you cannot help yourself, try these tactics instead, first, do the measures you have already discovered that do help a bit (all of them, in your trialed arsenal), then, secondly, through your cotton clothing just "press on/push", apply a gentle  firm as pressure as possible/"pad" the area, as opposed to scratching or actually touching the bare skin. Either way, you have already probably found out that that "scratching" does not/will not stop the pruritis, and often, the scratching does not really end up in relief, and just makes things wors e. You may gain a tiny bit of "control" (in the giving in) to the desire to scratch, by these using this tactic of applying "some pressure" to the area via clean protective cotton cover, versus outright scratching. DO keep using the things you have found to decrease it, I'm glad you tried some of them. A pulpy sopping wet cool bag of oatmeal poultice applied to a local area may be soothing, or quieting, followed by the other things you know work a bit.

PLEASE do phone and ask specifically WHAT oral antihistimine you could possibly be allowed to take, if they could possibly allow it, if you cannot obtain enough relief from all the other measures you are doing. You can quote to them the names of some of the oral antihistatmines that Tig mentioned prior. 

Are you sleeping OK, or enough, especially considering the skin issues?? If you end up being "allowed" to try an "oral" antihistamine, then the drowsy- type (safest at night, at home), may be benificial, especially if your sleep is disturbed, otherwise, if you felt a non-drowsy type may be safer for you, then it may be adequate for all-round daytime/night-time coverage. Some people find they can feel sides from antihistamines, such a drowsniess or being slightly hyper, so you would have to had had prior expereince with them to now how they might affect you - regardless, I would think oral OTC anti-histamines would be well worth a try in your case, if they will OK a named OTC one for you.

I am so glad you are not having headaches/nausea as you mention. Small blessings, as well as the large one you just got - finding out your stellar/stunning ALT/AST drop! Keep drinking that lots of water!  C.

Hello, again, and thanks for the wisdom and moral support! I am on Kaiser and most of my interactions have been via phone or email, often with a different person each time. I had my labs done and after 9 days my AST and ALT dropped quite a bit, and the rest of the tests were stable:

2/7/17 AST: 133    2/20/17 AST: 47

2/7/17 ALT: 162    2/20/17 ALT: 64

I spoke to a nurse yesterday and they 'liked' my labs, one person wants to increase my Riba dose and the other said that was unlikely based on my rash, which is now migrating to other soft spots like the undersides of my upper arms and my inner thighs. The "don't scratch it" advice is WAY easier said than done!! I understand it. but sometimes it just happens and my skin is set on fire and I can't stop. So far, I think the best relief I've gotten is the Benadryl-type cream, the oatmeal bath, and this corn starch powder from Lush. Nurse was OK with this, but no Rx offered.

I am still feeling very fortunate that I don't feel sick (e.g., headache, nausea) and haven't had to miss any work (although I am awfully glad when my shifts are over and I can go home and be a slug!. I am almost two weeks in, so only 10 weeks to go! I appreciate you being here with me...

Hi again Better late,

Sorry for the skin symptoms, Tig's thinking and advice on this is right.

When is your next shedualed appointment to see the doc?? Be sure to show him your lower abd. rash/hives, and any other skin areas that are bothering you just so he can verify it is likely a riba reaction, and not something else as well. 

I hope you get to see him soon, so he can possibly prescribe something and/or even push which OTC things to help you, that he agrees with. I would be surprized if he balked at anything that has been suggested here.

Sorry about the thirst too, good you are drinking lots of water tho - keep it up, with tons of water in your system for dilution, be sure you are keeping up with/adding a few drinks per day that contain some electrolytes, you need the ample dilution of lots of water but as well you do not want to be lacking the normal concentration amounts of electrolytes you need.

Try soft cotton clothing and underwear, might help a wee bit. Do try some of the bathing and skin things Tig suggested, very gentle, maybe oatmeal instead of soap, etc. Try adding no fuel to the skin "fire", if you do not need to bathe, don't, especially if it aggravates your skin, if bathing effects some soothing, then do.

Not to fret about getting your prior load info (for us anyway) it is just interesting records for you to know, your loads will have likely fluctuated over the years anyway. They will come up with your last VL for you eventually if you persist in requesting it. Do ask where they put you at for your level of fibrosis/cirrhosis (your Fscore) and the test results they used to make this Fscore number determination. Yes, do try to get copies of your "work-up" bloodwork, and now the ongoing bloodwork during treatment as you go along.

Good you have added more info to share with us, I can only guess that it is your cirrhosis level that seems to be the reasoning your doc is wanting you to have the added riba.

If it comes up, do inquire if you could still please have the fibroscan anyway, it is just another very handy tool of measure. A fibroscan is just as easy (if not easier, than having a repeat ultrasound) of which you should have in future. I would want a before and some after fibroscans as well as before and after imaging, such as ultrasounds. Over time and into the future repeat fibroscans are an easy way to help guage reductions in liver hardness. 

Hm, 5 PM, gotta go, will finish this later.  C. 

(Continued) ... I know the frustration of trying the sig line for the first time. I am long winded (just in case no one had noticed) and did exactly the same as you. Sig line space was even shorter in the past!, but Tig made it better, adding as much room as possible. You can see how my full sig line ends up directing the viewer over to look in my bio for the other 25 pages I wished to have in my sig line!

Tig, anyone busy/uncomfortable because of riba, they should automatically be alloted/awarded extra-special sig line room!

I know what you mean about the newness of openly discussing yourself with virtual strangers, but, who are much like yourself. I was not at all partial to the idea of joining "some support group" thing, but once I started poking around looking at all the dif sites out there, I found this one dif/better/easy to get into for me (who had little techno savy), once I started reading here, I soon became a frequent "looker", the anonymity allowed me the safe comfort and guts to start conversing, or at least dabbling in questions. I was like you, no one except my current docs and my partner knew of my recent diagnosis nor treatment. I had a large learning curve and had to study up on much stuff in short order, and the more I read here the better off I was, it helped me immensely in amassing the info I needed, then came the support, which really surprized me, I now know I would never have got through this period in my life so well without all the help and relationships I entered into here. This IS a good place, and Tig and all of us strive to make it so. Now we are glad you are here!   

-- Edited by Canuck on Saturday 18th of February 2017 01:46:59 AM

Hello! I suspect you are trying to add too much info in your signature. You're limited to 300 characters. Over that it just resets. A pain I know and is set as high as it goes. It's to save page size. Reduce it and use abbreviations when possible. There's a link to commonly used abbreviations in my signature.

The rash you mention sounds very similar to what we fondly call "Ribavirin (Riba) Rash. Search the term using our search function above. It can be very troubling. Be sure you mention it to your doctor. In the meantime, avoid the sun for prolonged periods, always use sunscreen and sunglasses. You should also avoid hot water baths and showers. Heat makes the rash worse. The worst thing you can do is scratch it! Don't do it. Ask your doctor about using a hydrocortisone cream. Oatmeal baths, lukewarm water (sorry), Calamine or Caladryl lotion helped me. You will get some relief with an antihistamine too. Again, ask your doc before adding anything new. I found Zyrtec worked with the itching.

You are wise to get this treated. You have some definite indicators of advancing liver disease. Get this cured and then get to work on recovering some elasticity to that liver! 

I'm glad you're here. I like to think we're pretty easy to talk to! Let me know if you need anything.

...ooops SOT was 2/10/17!

Hey Better Late and Tig,

Ya, i was wondering the exact same as Tig (about your doc adding riba), but I was reluctant to second guess your doc's decsision, being that you had already started, thought I would bite my tongue and wait to hear more from you about your level of "cirrhosis". You did say you were treatment naive, right?

But regardless, Tig is correct about how effective Epclusa (alone) is for all GT's, almost regardless to RAV's, and cirrhosis levels. 

I was in a trial, so that is mostly the only reason I got Epclusa with a the boost of a third drug called VOX. This particular Epclusa/VOX triplet regime is due to come out in the US this year, but for now, the VOX triplet will be reserved for use in only those who have failed prior treatment. Until this VOX triplet comes out (for relapsers), they are temporarily/currently using riba instead of VOX to effect a stronger triplet.

If you have not failed a treatment before, your doc must have some reasoning for adding riba to your regime, but I do not know why exactly. Do let us know your labs and level of cirrhosis when you can. DO pound on the water, a gal. a day!!

Looking forward to hearing from you.  C.

Hello Kristina,

Welcome-Welcome!! Glad you're here and hope you join in on the conversation. Let us know how things are going as you progress. Most people have lots of questions, I hope we can help you find answers. Don't miss the search function at the top of the page.

I'm very curious to know some of your test results, too. If you can find out what your liver profile is, namely the AST, ALT and Bilirubin, will help. Then if you're asking, your CBC (complete blood count), especially the Platelets will be useful.

You know your genotype and GT 2 is one of the easiest to destroy, especially with Epclusa. The addition of Ribavirin is usually reserved for decompensated cirrhosis, not compensated, even on a 12 week protocol. Perhaps your doctor is just adding a little juice to your treatment. What dose are you on? How did your doctor check your fibrosis stage and what is it? Request copies of all your test results, they have to give you them on request. When you get them, file them away, you never know when you will want to refer to them.

All of these medications can cause headaches and fatigue. Ribavirin is well known for causing anemia, nausea and moodiness, even fits of anger/rage. It will also cause sensitivity to sunlight. Protect your skin and eyes from over-exposure. You can combat the headaches and blah by drinking at least a gallon of water everyday. That's the best piece of advice we can give you, aside from reminding you to not miss a dose and take it at the same time each day. Set an alarm on your phone and use a pill container. That will give you a daily reminder and proof you took it. You may notice some brain fog or confusion set in, do what you can to recognize it. 

Stay in touch and use the red link in my signature to set up yours. That helps us when replying to questions and gives people a quick way to refer to your status. Just know that you're on the best of the best and it will work. Do your part and it will do its part! Good luck..

Epclusa Treatment Info

Howdy Ho back to you Better Late! 

I'm glad you joined us here, and I'm very glad to meet you! (Love your "Better Late" tag! heehee)

I am SO pleased you are at treatment now!

Treatment has been a long time in coming for you, being that you were undiagnosed for a long time (similar to my history). 

I'm thrilled you got Epclusa! Riba, not quite so much, but obviously, likely due to reasons of your cirrhosis, your doc has deemed you would benefit from the extra boost of a third drug such as riba to ensure your cure. Triple insurance! He is looking out for you! Nice he is playing with the riba dosage, early, to see how you do with it, I have not heard of that happening too often. Might be a good idea! - I had not really considered that before! Some people have their riba dose decreased, later, if they having bad enough sides from it and just cannot tolerate it very well, that was the way I have most often heard of riba getting adjusted. Might be a wise measure to graduate your riba dosage upward slowly at first, rather than a full dose starting on day one!

Some people get some sides from epclusa, some have not felt epclusa at all! More have felt sides from riba (from what I have learned) yet some even toughed riba out fairly well! You will have to wait and see. I hope there will be NONE for you my dear!!!

As a 2B, on this regime, I am expecting a perfect result for you. Epclusa is very effective regime.

Yes, do try to get some copies of your labs, any of them really, if you feel comfortable to share some of them, especially bloods or imaging results relating to your docs assessments of the "F-score" your fibrosis/cirrhosis. Have you had a liver biopsy, an adb. ultrasound, or a "fibro-SCAN"? 

How have you been feeling these last years prior to treatment?

When is your next doc appointment?

Keep us posted on anything you wish, ask away on anything,  if we can help, we will.  C.

Howdy, ho. Just started treatment, not sure of all my numbers or which ones matter, but I'm Genotype 2B, probably got infected in 1977 after a homemade tattoo at age 17 (got sick, doc thought I had hepatitis but tested negative...was told later they didn't have a test for 'C' then). Was diagnosed around 2000, never had treatment. Recent tests show cirrhosis now so they started me on Epclusa/Ribavirin for a 12 week course. I have frequent migraines (headache and nausea) and have to work fulltime, so they started me at half the normal Ribavirin dose to try to see how I do with side effects.

Started treatment Friday night (Epclusa pm, Ribavirin am). Was feeling kind of cocky, because NO headache NO nausea yet (I am having some visual disturbance - tough to focus on computer, and feel really sluggish, but not awful), but after reading this board, it looks like the side effects get worse as time goes by. Yikes. Is that true? I go back to work tomorrow.

Anyway, I feel lucky there's a treatment for 2B now and that I get to try it. Bummed that my liver is already in trouble, but it is what it is. Glad to have a group of folks who understand. Take care...