The warning regarding Hep B pertains to people that previously were diagnosed with it. Once the virus was either cleared spontaneously or through treatment and SVR was established, the use of DAA’s have the potential to reactivate the B virus. It’s not common but it has happened, so they monitor people that fall into that risk category carefully during treatment. So anyone that has never carried the B virus have nothing to be concerned with.

I just wanted to provide another viewpoint. I do understand each individual’s concern and everyone has to make their own decision without too much pressure! When we can and it seems prudent, a little nudging is good. I am glad that you’re going to look into it. I know you’ll make the best decision for you! You’re on your way to a much healthier future. I’m sure of it! 

Thanks Tig. Thats decided it for me. I totally agree with you and I will for sure get those vaccines, whichever ones I need. Thanks so much For your thoughtful post

I’m not aware of anyone experiencing side effects from either vaccination. I understand some are concerned about vaccinations in general, but they’ve been giving these for decades and so far, I’m unaware of any problems. They’ve been giving Hep B vaccinations to children for a long time, a routine vaccination many of us Boomers missed. The benefits outweigh the negatives imo.

My thought is this, a person that hasn’t been affected by the damage our disease has caused (initial exposure) is less likely to suffer the same risk if they were exposed and infected. Like us, they would seek treatment for that infection, hopefully before it caused the degree of damage many of us have. For us, we need to avoid a secondary form of hepatitis, A or B, because it could be much more damaging to our already damaged liver. Depending on your current fibrosis stage, it can take years, in some cases, to see enough regression to be considered normal. Sometimes never. We just hover with a damaged Hep free liver. Should we be exposed to something and it can happen, our recovery stops until the new infection is resolved. Hep A can be damaging but far less when compared to Hep B in my opinion. I encourage people to get those vaccinations, but it’s a discussion you should all have with your healthcare provider before deciding against it. 

STL wrote: My last magic bean and blood test tomorrow so I will hear by the end of the week

CONGRATS STL!! So happy for you! 

I think I probably will opt to be immunized against A/B, whichever one I need. Im with your NP on that. I can guarantee you I wont be using any needles so Im not worried about being reinfected with C. But A/B, while the likelihood is small of getting it, Id still love to know that I can never get anything like that ever again. 

You have got me thinking though: vaccinations arent without side effects. So. Decisions decisions. 

at this point it comes down to risky behaviour......... not having random sex or sharing personal hygiene tools for example. 

sure a blood transfusion or tattoo or accident could bring on the B or C, but it all has to be considered.

i have opted out of the B and A shot for now. i'm pretty careful where and what i eat and always wash my hands so not sure A would be a problem either.

i just don't want shots

Hey Hoodie,

When I had Hep, I was told it was B. It came a short time after my friend was diagnosed A. Everyone attending her wedding had to be vaccinated for Hep A including myself and my kids. Then I still went yellow within weeks and was diagnosed B. Now with my pre treatment tests from what I understand my A is OK but I dont have antibodies for B so I have never had it, nor been vaccinated for it. Vaccination has been suggested ( but not insisted on) Entirely up to me. By what I have been told should I go ahead is that it will consist of 3 injections one then second in a month and third in 6 months. I am going to mention it again to my GP when I see her next week. My liver nurse feels that since there is a vaccination I should have it. There is no vaccination for C, so I could be reinfected etc.  As there is a vaccination for B I may as well take advantage of it, was her thoughts. I pointed out that I couldn't see much likelihood of getting either in the future. My doctor wouldnt consider me having having the vaccination when I last saw her but explained it is 3 shots, as I was having a flu shot at the time which she felt was more important, so will see what my liver nurse says and my GP after I have had my blood test done this week. My last magic bean and blood test tomorrow so I will hear by the end of the week.

Hey 5,

did they say your hepB is dormant or how did you get immune?

Good question! i *think* I received a vaccination but I dont remember and they werent keeping proper records back then. Thanks for asking, it helps me formulate my questions for the doc when I go in on Thursday. 

hi hoodie, i took milk thistle almost daily for about 20 plus years. so did my hubs. i think it kept us from worse liver damage all these years; the disease did progress but maybe slower.

i might start taking my vit D3 again when i'm off the antibiotics for sinus/ear infection. that D3 gives me gas........so do antibios. , i take a plant based D3 cos the oil based one gives me bad indigestion [gallstones could be the reason for all that].

i'd like to know if others started back on the milk thistle sooner than 6 months.

im so sorry to hear that you will be whisked away to surgery when your tx is over

, well ok, one day at a time.... getting rid of the hepC is big

oh, did they say your hepB is dormant or how did you get immune?

Thank you Tig and Canuck for your replies! I have no problem dropping milk thistle and other supplements while Im on treatment. Theres really no need to sell me on the idea of following doctors orders where supplements are concerned. Ive been living with this beast for many years and have always altered my behavior as needed to take good care of myself. Ive BABIED my liver for DECADES and I have no plans to stop that now. I do appreciate the straightforward recommendations  and explanations, they make perfect sense. My only concern now wrt supplements is when to resume them post EOT.

5-1-18 said theyll wait till 6 months post EOT. I may or may not wait that long. Ill wait and see on that. Im going to need a hysterectomy soon after my EOT and may want to resume supplementation to help my recovery post-operatively. But as usual Im open to your suggestions. Also, I want to make it clear that I never said I thought milk thistle was a CURE. I said that conventional wisdom indicates that milk thistle is PROTECTIVE.  Weve all heard it a million times right? Anyone who thinks MT provides a cure is sadly mistaken. Otherwise, we wouldnt be having this conversatlion because there wouldnt be a worldwide hep c epidemic. Not to put too fine a point on it or anything ;p  

Canuck you articulate the Hep A/B controversy  and other medical facts in an amazingly accessible way! Im impressed and grateful!! I know good advice when I hear it and you and everyone else who has chimed in on my situation has given me excellent advice. I will be forever grateful for this amazing forum. You guys ROCK.

many thanks 

Yes, Milk Thistle is said to be beneficial and has been shown to be protective and acts as both an antioxidant and anti-inflammatory. That also depends on whom you believe and the numerous studies that fall firmly on both sides of the fence. Both of those properties may be why I'm not on a transplant list myself. I took it for years and saw my liver enzymes in the normal range for many of them. Whether that prevented me from developing cirrhosis is unknown. I like to think so. I abused my liver in many ways and entered into my third infected decade as an F2-3 and in a couple of years it had progressed to F3. So my time as a non cirrhotic was running out. Again, I believe some of the delay may be attributed to MT, some professionals just call it luck. Whatever...

The reason you should avoid supplementation of any sort during treatment is due to the changes they can cause to your lab results, and/or the action of the treatment drugs. It's widely advised to avoid them during treatment. You want to witness the improvements from the drug therapy, not a faux result from MT on your blood parameters. If you feel the need to add supplements to your diet, wait til you're done with treatment and the 12 weeks following. That way your lab tests are non impacted by them. Trust me, they do alter lab results. They aren't anti viral in any respect, so people utilizing them, hoping for a miracle cure will spend a lot of wasted time hoping for something that won't occur. Protective, maybe, cure, definitely not.

HCV can cause all of the pain, neuropathy and tingling you're experiencing. You might be one of the fortunate ones to see that dramatically improvement once you have vanquished the Dragon. Good things are in your future!

alpha-fetoprotein (AFP), they may have already done one on you.

Ya, misdiagnosed as A's or B's and the era of the mysterious non-A/B - it took too long (way back then) for them to figure out, define and start using the test they created for this thing that was C but that they labelled it non-A/B for too long.

When I had hep b as a teenager, which just naturally resolved, no one figured it out or accidentally stumbled across it that I had also contracted hep c at that same time, and I had just kept packing that hep c all my life unknowingly until 2015!

Records are notriously easy to be gone - I (now) keep my medical records, reports, even CD's of my images at home (when I can find them in my piles of stuff!). No one can remember things after a while. Maybe your recollections are correct. Regardless, they can (with immunity level testing now) know whether you currently possess enough immunity to B (over 10) and whether you have any immunity to A. Even if you acquired natural immunity to B by having B, or, whether you were vaccinated for B, both ways it is possible for immunity to wane, thus why immunity level testing is a defining thing. Perhaps they did do immunity level testing on you.

Your ALT is a fairly good indicator of inflammation levels, a hep c infection is all about viral activity causing an inflammed liver (amoung many other things it affects and does!) - when you take an anti-viral treatment (like any of the new DAA's) to effectively tackle your hepc infection, the ALT is a very handy tool to judge a drop in your infammation levels (and ALT is also used to judge other things too) - milk thistle can possibly (in some people) drop your ALT some or a bit, a lot, or not at all, and a milk thistle effect might be dif for dif people - but, because it might affect what your "normal" ALT is ... I would drop the thistle, before you start treatment (now), as it may very possibly skew knowing what your "usual" (normal) ALT IS pre-treatment, and it could possibe skew knowing what your ALT accurately is during treatment, and it could skew knowing exactly how much your ALT is dropping during treatment due to only being on the effective/curative treatment of the DAA's versus the milk thistle which might also contribute to an ALT drop. You want to know what your actual ALT drop is as a response to the DAA's, not to the milk thistle. Many might say milk thistle is "protective" but there are no proven studies that milk thistle is curative - and it may interfere with a clear lab picture when undergoing DAA treatment. Invest yourself in the tried and true curative power of the DAA's alone during treatment. We want to know how much your ALT changes due to the DAA treatment - we do not want (at this point of entering into effective/curative treatment with a proven DAA) to have an unknown milk thistle effect and not knowing whether it may be skewing your labs. 

Did anyone at your docs office get back to you about what sups you are allowed to take, maybe they will go over what you can and cannot take with your epclusa when you go in? 

Later,  C. 

SeeTheLight and Observer all 3 of us were misdiagnosed with Hep A/B?!? So weird! The Medical profession really does not have its **** together does it? I know that sounds like a criticism, its really more of an observation. Sometimes science isnt an exact science LOL.  

Oh! I think I remember now!  Since back in 2000 they determined that I had already had HepA and therefore had acquired a natural immunity to that THEY IMMUNIZED ME  AGAINST HEP B! But they dont have the records for that! So lame! 

-- Edited by Hoodietree on Saturday 21st of July 2018 11:11:05 AM

And yes apparently the plan is to only give me the immunization for Hep A since I guess I already have a natural immunity against Hep B?  Ill drill into this with the NP leading up to my appointment on Thursday. She seems to listen to my voicemails and makes an effort to return my calls so I am hopeful that I will get a response.  

I will also try to insist on an ultrasound as well as an AFP.  I might already have an AFP but Kaiser gives you test results on an individualized basis one at a time entries for each different marker via their app, not a full write up that I can copy paste and post here.  its a huge PITA. What other names might AFP show up as?  When I asked him about my kidney function test Dr. D told me I should be looking at my GFR  GFR glomerular filtration rate and/or creatinine in the app. Then he told me it was perfect When I told him about my circulation problems and freezing cold hands and feet and bad pain in both the hands and the feet he said he would order the auto immune tests. 

Canuck wrote:

About your A/B immunity, I do not know what data they are depending on for your pre-treatment assessment of your hep A/B immunity status (you mentioned 2014 records), or if they are relying on any testing they have recently done themselves, but it sounds as though they have been assessing you. Did they say it is ONLY hepA that they are immunizing you for? - regardless, when you show up for this immunization they have planned for you, be sure to ask again, if you don't need both A and B immunization. (Being that there is a question about A/B hx, do you ever remember being vaccinated for A or B in the past or the remote past? Would it be possible the Hep A you thought you might have had in the past ... could have actually been your hep C you were sick with. Or,  ... perhaps the A infection you thought you might have had in the past was actually a B infection? Do you ever recall being sick/having hep symptoms at a time distinctly competely separately from when it would have been a hepc infection? Just all speculation.)

When I was diagnosed with Hep C in circa 1997, at some point after that circa 2000 I saw a doctor at Kaiser  but apparently this was before they were keeping accurate records and before I got in with my PCP who I love Dr. Davis in 2006. I was tested for both A/B and was told that I had had Hep A previously. Which made total sense to me at the time because I do recall being extremely sick with hepatitis A for at least a week in my late teens and I thought it was just food poisoning. So I was very surprised when the NP told me that I have immunity against HEP B but not against Hep A. It is completely backwards from what I was told in 2000 and I actually trust my memory on this because I remember feeling a stigma about both Hep C and Hep B but not Hep A during that doctor appointment. 

5 was it you who said: no milk thistle during tx; and i'm gonna wait till i get my 6 months free svr.

I just read through this whole thread again for comprehension and wanted to drill into this a little more if you dont mind. Conventional wisdom as I think we probably have all heard is that milk thisll is protective, so if anyone wants to chime in on this seemingly contradictory piece of information I really appreciate it

Hoodie,

Hooray on the good news! 5 days and the slaying begins, it’ll be upon you almost like it’s tomorrow! The exciting thing is, your end of treatment day almost approaches as fast. It has become easier to get through treatment, so push the anxiety away, if you feel it sneaking up on you. I prefer to recommend getting excited about the coming gift! 

You have received some great advice from many of our qualified Dragon Slayers and you can count on us being here throughout. If you have any questions, need help or directions, don’t hesitate to ask. We’re better together!

As explained, your viral load fluctuates like the tides. It can be 50,000 one test and 5 Million the next. The virus has flares of activity and it’s related to our immune system response to it. Once decimated and your immune system can get back to dealing with a normal routine, many of the things that plague people with HCV begin to resolve. It’s something to get your old dancing shoes out for! I’ve got a shiny disco ball available for that party!

Great news on your start date Hoodie. I hope your journey will be as easy as mine has been (only 2 beans to go) so I will will reach EOT before you start. Seems a lot of us on the board of late are having none or next to none sides on our Epclusa.

Wow Obs!!!!! You were also told it was B as I was. Don't eat Butter. That was a good one. I was told ease up on fats and alcohol for the next three months. - Unreal Ehh. How far we have come.

Good that theyre testing you for immune disorders, HCV reeks havoc on many of our systems.  

When I went yellow a few days after my transfusion I was told that I had hep B, (Dr.s advice..dont eat butter)  cut to 8 years later, constant weird and life affecting symptoms,  so I was tested by new Drs in new town and informed I did not have hep B. I thought Id cured it with diet and supplements. 

But I also thought with my wide array of unexplainable symptoms that meant I must have gotten AIDS in my tainted blood ...because my immune system was so far out of wack, I tested and was negative.  When I got a letter informing me of the HCV I practically wept with relief that I wasnt a hypochondriac. 

The viral load fluctuates a LOT.  Mine was 5 million and  3 million many moons ago then, when I was tested before treatment, it was only 70K. 

You may find your immune issues lessen or they may go away when your liver is able to do its job. 

Its exciting to know that your dragon slaying starts in less than a week. 

YAY! Very cool indeed, you got a start date!

You'll wup this virus in no time with epclusa.

Yep, 5 is right, U/S's are good to have under your belt, to see what's what with your abdominal organs, it an easy painless good bit of info to own, and very useful to have to compare against in future after your cure, particularly when you have had longstanding HCV. 

If they have not suggested an U/S for you, ask for one, all they can do is decide not to, but I can think of no good reason NOT to do one. Pre-treatment U/S's are good practise in my book. 

I was pleased they had already done that fibroscan on you. You mentioned you did have other pre-treatment bloods drawn, bili for instance, so perhaps you have already had an AFP drawn? You can ask for complete copies of your blood labs. U/S's and things like AFP's are quite commonly done pre-treatment, and post-treatment in follow-up. Not unusual. If you knew they had never done an AFP on you, then you might try to ask for it when you go for your next blood draw. Great your kidney function is good. What is the bili you mentioned, or any other labs you may know such as ALT/AST, etc.

Lucky people getting good and thorough care and work-ups often get lots of assessment done, quite routinely, such as your auto-immune/RA test. Adequate testing is good, over-testing does no harm, under-testing is not an ideal model.

5 is also right about VL being high or low has no bearing really on how "sick" you are, or how sick you might "feel" - whether you are 100,000 or a million, or 10 million you are still VERY much infected, are ill just the same, with ALL of the same potential ramifications. I did not realize much at all about the nature of how this virus goes about it's life before I came here, I learned, much to my surprize, that a person's untreated VL can fluctuate up and down, mightily. A blood draw collection of your VL is just a mere pinprick point in time, the next day your load could be on a ride up, or on a ride downward, it's just the nature of this internal war our poor bodies have been forced to valiantly wage all on their own with no extra help. Sister, you sure got the right help coming now, with the like of epclusa!

About your A/B immunity, I do not know what data they are depending on for your pre-treatment assessment of your hep A/B immunity status (you mentioned 2014 records), or if they are relying on any testing they have recently done themselves, but it sounds as though they have been assessing you. Did they say it is ONLY hepA that they are immunizing you for? - regardless, when you show up for this immunization they have planned for you, be sure to ask again, if you don't need both A and B immunization. (Being that there is a question about A/B hx, do you ever remember being vaccinated for A or B in the past or the remote past? Would it be possible the Hep A you thought you might have had in the past ... could have actually been your hep C you were sick with. Or,  ... perhaps the A infection you thought you might have had in the past was actually a B infection? Do you ever recall being sick/having hep symptoms at a time distinctly competely separately from when it would have been a hepc infection? Just all speculation.)

That was good thinking on 5's part about different tactics to consider and use concerning time-off work should you want or need time off - but I am betting you will be just fine and you already have it mostly sorted.

Don't get me wrong - I REALLY enjoy your avatar - you VERY tall person. heehee C. 

yes, it is good to have some before and after photos of your liver via ultrasound. you can ask for it.

also the afp marker [tumor marker] blood test. 

the viral load goes up and down and probably yes, your immune system has been beating the daylights outta the virus and leaving you fatigued. as well as the virus itself zaps our energy.

so cool you have your start date

you will do so good nod:

Welp, looks like I have an SOT date: Thursday 7/26/18!

I have immunity to Hep B but not Hep A according to blood work done in 2014. So I either misremembered or got bad info previously. Anywho, on Thursday 7/26 Ill get that immunization plus a blood test for rheumatoid arthritis and other autoimmune disorders per my convo with my PCP today. I doubt I have RA. I pray I dont anyway. 

My viral load is 216,000. May sound low but I have to wonder if my immune system has beaten the crap out of this virus which manifests as terrible fatigue. It probably doesnt work that way, but Im really trying to figure out how such a comparatively low number causes me so much grief. Sigh. 

My kidney function is perfect according to my PCP. He said he will sign off on my FMLA ppwk, which I will fill out but not use (fingers crossed). 

They didnt suggest an ultrasound. Do I really need one? 

hi hoodie, hey just sayin', i like your avatar, and even more now that i know it's a picture you took of your shadow and the whole back story. at first it did look odd to me too...hahahahaha; but it grew on me. i know we all pick avatars that mean something to us.

my work place has already had a few ppl take this treatment and most of my coworkers knew about my hcv since i've known everyone a long time and already was on a 4 day work week due to liver disease.

but at this point i just quit caring what others might think......  i look around and i see a lot of dysfunction here and there so at least i'm doing something about my condition and have been taking care of myself for many years.

but yes, all they have to know is you are being treated for an autoimmune disease ; that is what my doc wrote a few years ago. Or that you are under going a treatment that has bad side effects. Def consult your doctor for the best way to get an fmla in this situation without having to reveal too much.

are you close to your family doctor?

right now i'm enjoying an extra 3 days off for medical reasons [sinus/ear infection]. on antibiotics . i'm thankful that my work place knew of my tx and that it could take some time to be well after. but with a dr's note or fmla they legally can't kick you to the curb 

have any of your coworkers had cancer or other serious illness? we have so i am just one more that is going thru something.

good luck with all of this. 5

eta: i already had that 4 day work week, and my sides were not too bad till the end and of course this sinus/ear infection hit me harder after tx........ so maybe you'll get lucky during tx too. and have manageable sides.

also,  going home sick is an option-where i work they have to send you home if you're sick, and without a note , i had to do that a few times too and that's where telling your boss helps a lot.

5-1, Im ashamed and embarrassed to disclose hep C so I will likely leave it vague. How did you deal with that?

Canuck I didnt realize my avatar was scary looking but yeah, I can see that now. I love silhouettes and appreciate the artfulness of a shadow of my former self. The day I took that pic was amazingly beautiful, so when I see it I go straight to those good feelings. But I will likely change my avatar to something more real looking and less scary. 

Also I post from my phone exclusively so my formatting and communication / syntax often does not meet my standards but its kind of you to compliment me

More info to follow as it becomes available.

hugs to everyone!

hoodie, i too was soooooooooo anxious about job stuff; but it went smoother than i could imagine. still it was becos i did the ground work. talked to all my bosses , took one week vacation.

went to my primary doctor with the things that made work difficult and easily got a note due to being on harvoni + those symptoms.

an doctors note will protect you from any negatives at the job.; so make sure your family doctor is along for the ride. i spoke to mine before tx started and shared my anxiety; she understood and stood by me.

even after tx now, she understands that if i'm sick i am also recovering from the treatment and is there for me.

you got this

lol your avatar, sorry but I did, as I had to look at this very tall almost scary looking person quite carefully before I figured it out, peace sign and all - I love it.

Hey nice sig. line BTW, and good bio, glad you left in the bit about lather, rinse, repeat heehee. And I for one believe you when you say you really are a happy optimistic person! You are a good communicator too.

That is one tactic they can use (to just go ahead and immunize, or "re"- immunize, as the case may be). They say "it does no harm" to re-immunize even if you do possess some current immunity to B and don't really need to increase your immunity to B, but you can be vaccinated or re-vaccinated when the level of immunity is just not known. But still, ask if they did test you to see if you had any existing immunity levels. The magic number for B immunity is that (if it is tested for) you should be over 10. You can gain some immunity to B, all on your own (the hard way) from having had a case of B, which, if it sucessfully spontaneously resolved on its own, can leave you with some natural immunity to B, immunity which may wane.

Being that you had A, or think you did, and if A was all it was, you may possess immunity to A (derived the hard way).

Just see what they say to you, it sounds as though they are on it, your immunity to A/B, and all will be taken care of, one way or another. Just didn't want to see you bumping into any unexpected delays, same as the abdominal U/S, I would want one done, and they may be planning one for you, ask. 

Ya the 3a or 3b thing does not really matter, it is just of interest to know, 3a's are more common as you will see around this site, 3 b's sometimes feel a little lonely until we find them other 3b's who have been through here and moved on just like all us 3's who are getting cured up just the same as all the other GT's are are nowadys. Yay epclusa! VL's are just of interest as well, how they may have waxed or waned over the years and to know as a starting point in treatment in case you are lucky enough to be able to witness the lovely crashing of it through treatment.

Yes! We are interested in your bili (and stuff like that, as you put it, heehee), post away with any labs you want to share. Any liver function tests (LFT's), kidney function tests, and/or any labs, especially if they were flagged as not within limits. Did you have a past or recent AFP?

Sounds like it is all well organized and will fall into place with your efforts, keep doing what you are doing, just proceed methodically, logically, calmly - you will be there soon enough.  C.

Thank you 5-1-18, I reeeaally hope I dont get fired OR need to take time off. But I just need to chill ax or Ill work myself into an anxious state. Im trying to opt out as much as possible from optional suffering/anxiety.

Canuck, tig, SeeTheLight, and Observer thank you guys too for your thoughtful posts. Hope I can repay your kindness some day. 

hoodie, you are smart to get the ball rolling to protect your job. an fmla would not be out of the question now of later depending on how you do with the meds.

everyone is different so being prepared is peace of mind

Hi friends! Like my shiny new sig? I also have an updated bio and avatar. Good times.

My GI doc replied to my email about genotype but not to my email about supplements. 

Our lab does not differentiate between genotype A & B, because there is no clinical difference. Just know that we will treat you with Epclusa for 12 weeks with a greater than 90% effective rate.

That is not an exact quote because Kaiser does not let you copy/paste from their stupid app. Im not bitter I swear! It just seems that way sometimes ;p

I imagine I will be going into their office for the next appointment at which point I will ask about the supplements and about Heps A & B. I know that I have had Hep A back in the 80s, and  Have never had Hep B.  Will try to remember to ask the right questions about my immunity level. Their attitude is to just go ahead and give me the immunization I think. Should I let them?  I am inclined to do so.

None of my labs show a viral load. I have had labs done every year for many years and I dont think theyve ever tested my viral load. That is weird and dumb, but: Kaiser. Do you guys care about bilirubin and stuff like that?

I feel like Im forgetting something. Will repost if it comes to me. Ciao for now, you guys are the best!

Good, you're on it Hoodie. Organized, can't be too ready I say. Dot i's and cross t's. Good you had that discussion re: hep A/B with your NP, do double check if she has ALREADY done your "hep A/B immunity level" check, or not, (it tells you if you do have any existing immunity to hep A/B, or if you may have hep A or B) - if that blood test has already been done on you, and your immunity is indeed too low or non-existent, then it is just a case of organizing immunization shots (IF they are required in your case) - if the immunity level check has not been done, then i would remind and ask the NP if you could please have that "hep A/B immunity level" blood test done and get it out of the way, so you can either proceed with immunization (if you need it), OR, know that you have nothing left in your way to be able to start in on your hep c treatment as soon as they make it available to you. You should not be starting your hepc treatment without at least beginning your immunization (if it is lacking). You seem ready and willing and anxious to start so I don't want to see any unforseen hold-ups for you. Just make sure they have completed the "hep A/B immunity level" testing for you and that they tell you if you do, or do not, need immunization. 

The only other thing I am not sure about is if you have had, and/or, may still require an abdominal ultrasound before your can start your hepc treatment.

Later,  C.

Hi Hoodie,

Glad to meet ya.

Try something like this when you get around to working on a signature line for yourself ... F, Age 49, HCV since 1999, GT3, Fibrosis score F0-1,VL ___, ALT ___, AST ___. Epclusa SOT ___ to EOT ___ ... And of course anything you wish to put in your signature line.

Do you have any idea how soon your SOT might be?, you sound ready and willing and anxious to get started. Are you completely done with all your pre-assessment work-up? Have you had your hep A/B immunity levels assessed? Did you have an abdominal ultrasound done? Was your F0-1 score determined via a blood test or via a "fibroscan"? Do you happen to know if you are a GT3a or a GT3b?, what your viral load is, what are some of your recent liver function tests (ALT, AST)?

I hear ya, about living with the feelings of fatigue, fog, depression, joint pain. I can see how you have been trying to help yourself with the supplements. Very good to question taking them, especially the ones most important to you - but this will have to be a decision (if you can or should take any of them) helped by your doc. It may be hard to pinpoint exact researched and documented potentials for interactions and possible contraindications with things like your dear-to-you SAM-e and the epclusa. SAM-e is supposed to be good for joint pain and depression. Supposed to increase a persons serotonin levels (like other anti-depressants can do) so, would it then be considered something akin to an anti-depressant as far as  looking at it in a contraindicated light with epclusa? I have no idea how Gilead would view SAM-e. There some contraindicated drugs when taking epclusa, and important ones. Antacid treatments like Observer mentioned would be one of the more important/common ones. Have a read of the mongraph.

https://www.gilead.com/~/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf

In general, in regard to taking SAM-e and anything which might incease your serotonin levels, I know a person has to be careful with taking too many different things OTC and/or rx things which might ALL be contributing to increasing your serotonin levels at the same time, as one can get too much of what is thought a good thing! - and care has to be taken with mixing different kinds of anti-depressants, but I am sure not much info about SAM-e specifically will be found in the epclusa monograph, expressly because SAM-e is sold as a supplement. 

As the reliance on taking SAM-e seems important to you I would seek out this (in-depth) conversation with your doc about it, earlier, rather than later to decide if you can take it or not. How much are you taking on a daily basis? If you cannot have this discussion with your doc right away, you can always discuss it in depth with a pharmacist first as well. If it appears that no one is willing to tell you it is OK to take it with epclusa, then i would advise weaning yourself off the SAM-e gently and slowly (if you have time to do so before your epclusa start).

I am glad you are near to your start - you are doing the right things. Don't worry about what tweeks might make you more successful, because if you just take the drugs as directed, you WILL be successful! - as a GT 3, you are very lucky to get epclusa.  C. 

Hi Hoodie,

Welcome to the forum! I'm so glad you found us. You've met a few of the nice folks here and you'll meet many more. Enjoy the friendship and feel free to ask any questions you may have. We'll do our best to make you comfortable and informed.

Epclusa and all of the new DAA's are a fairly easy ride nowadays. As long as you do your part, they'll definitely do theirs. If you pay attention to the water intake of a gallon per day, the brain fog isn't a big deal and it will limit or eliminate the occasional headaches that some associate with these medications. Avoid supplementation without permission, Milk Thistle as mentioned is out. Many supplements will alter the test results and not give accurate readings. You want your system clear of supplements, just let the Epclusa do it's thing, by itself. An iron free multi vitamin daily is recommended and Acetaminophen (Tylenol) or Ibuprofen is generally accepted. Not sure about the SAM-e, ask on that. Always, always, check with your doctor for advice concerning the addition of any medications/supplements to the protocol. There aren't many restrictions, just eat well, hydrate til you float and you'll breeze through this.

If you go to our Forum Information section, you'll see a lot of info on navigating the forum and how to set things up. If you have any questions at all, don't hesitate to ask. When you know more about your start date and lab results, you can add them to your signature line. We have a 300 character limit there, so it has to be specific. You can see how the rest of us have laid ours out and you'll fit it all in. It helps to know that information when replying in future posts. It's easy once you get settled in! Good luck.... 

Welcome hoodie, 

Glad you are going to get rid of your hcv ...as the others have wisely suggested, check with your Dr. about everything... 

With my Drs. blessing I took magnesium, pot, my usual abundance of coffee but gave all other supplements a break (and  no antacids)

I craved sweets on treatment but I dont  think I gained weight. 

Walking is always a good exercise though weve had some folks who go to the gym or even run a marathon while on treatment.

Alison

Hi Hoodie,

Welcome, Welcome Welcome. Lovely you will be joining us on our journey to a Hep C Free Life. You will find a lot of friendly helpful knowledgeable people on this board. I know I am so happy to have found this place and these people to share my journey with.  Funny that I was the last person to post here, and no-one got back to me on this thread, it is an old thread, so I would suggest you start a thread initially in the new member area and introduce yourself and ask your questions. Once you start treatment you can start your own thread in the on treatment area, where we can detail our own journey and problems encountered.

I am fairly new given the big picture. Funnily enough I note that when I posted to this thread, I had taken my fifth "Bug Bomb" as I initially saw them. They have now become my "Magic Beans" and I have only five left to take.

Seems everyone has their own idea on what it is OK to take while on treatment. I would suggest you ask your doctor or nurse whoever is overseeing your treatment. As to vitamins I asked about Calcuim, Vitamin D Vitamin B and Magnesium and all were OK as was paracetamol for pain. Drinking the water is the most important thing for sure so glad you are well aware of that before you start. None of the things you mention are listed in my literature as being a problem. A lot of people smoke pot and drink coffee while on treatment. Pot can be helpful in fact. We can't really tell you what will happen to you on treatment re fatigue, joint pain etc. Everybody is different. Most people don't appear to have many problems working and resting.

Some people have next to no fatigue or other side effects, while others seem to suffer more. All I can say re my own journey on Epclusa as a Gen 3 also is I have suffered very little. I think the best advice we can give you is to do as much or as little as you feel you need to do. Try to rest when you need to, eat well, drink your gallon and stay positive. We are so fortunate to be getting treatment in the era of these wonderful DAA's and any slight problems we encounter along the way usually pass quickly. Don't worry, Embrace your treatment and be positive that 6 months from now you will learn that your treatment was successful.

Good Luck I'm sure we will talk again once you settle in here, and your own journey begins.

welcome hoodie.

no milk thistle during tx; and i'm gonna wait till i get my 6 months free svr.

the pharmacy and doctor will tell you what to eat,when to eat and what to take not take....... good that you are already on the water

pot was not disallowed for my husband when he went thru tx; i think it helped him, i don't like it so it was a non issue for me. he's clear as of his 3month end of tx and will know soon about 6 months.

i might have gained and lost the same 2-3 pounds over tx and that is normal for me.... i def was more fatigued and had some stomach issues ; but i took harvoni . plus i have gallstones.

i worked most of the time but told my job about my tx so they knew if i had to go home it was becos i felt too sick to work [2-3 times]. plus a few call ins. they understood then and now as i have ended tx and might not feel up to par some days.

over all i managed ok at work...... maybe you can work something out with them to have a more flexible schedule or time off as needed. 

i'm so glad you are finally getting on the magic beans . [the name given to our fab treatments by SeetheLight here on the forum... she's cruising in her last week on epclusa

so! welcome! welcome! welcome!

oh, my joint pain stayed about the same or sometimes less. but i reallllllllllly took it easy, hardly did any house work and only did easy exercise if that.

i did as much as i good before tx so it was all ready, prepared an froze some food, shopped and stocked up for those times i wouldn't want to go to the store..... made and froze my work lunches. got work clothes ironed and ready .

i prepared as much as possible. got all other appointments out of the way , got any household demands met .. anything i could think of - the car, gas up the car...you get the idea.

5

Big Hi to All Who Led The Way.

Found this thread as I was commencing my treatment this week with Epclusa. I know it's an old thread but I wanted to thank you all who have contributed. Has, most definately been an interesting read for me, just starting my own journey. Hope you are all doing great.

Took my fifth bug bomb this morning 79 to go. All going great!

Hi Tig,

Thanks for the reply. I normally go in the morning before eating, but point taken. I will do another one soon.

Rainy season here, although not too much about here in Pattaya, but when i go home to Chiang Mai it seems to piss down every day.

Decide i will do another u/s next week to see the state of play with the spleen and liver.

It gets bloody expensive, what with cat scans, viral load tests etc. I sometimes wonder if i should just forget about it all, after all i am nearly 60 and had a good innings.

Ok , catch up soon.

Bye........

Hi Ian,

Thanks for the update. Those are good numbers, no question about that! The fact you have elevated uric acid (gout), in my opin could be behind the ALP increase. As Wendy mentioned, diet is huge in this case. Were these tests done following a fasting period of at least 6 hours? Any high fat consumption preceding the test can impact the results. I wouldn’t be concerned with any of these results and if you are, I’d repeat them after assuring a good 9-12 hour fast beforehand. I’m amazed at how diet impacts some of these test results.

Is it starting to cool off over there? I lived in the PI for a couple years and remember those tropical summers! Good to hear from you. 

Hey Razor,

Yay! - glad to hear from you!.

My! (generally) - what a good lab report!! And, so glad the "liver pain" seems to have gone. If it were me I would have had VL's done at EOT, then at EOT+12 weeks, then EOT+6months, and then again at one year - but, we know you had your VL's drawn maybe a "little" off-shedual all along, but, I agree, with you being very UND prior, repeatedly and for quite some time, and with lovely labs like these still attesting to your lovely HepC free state, I would not be fretting a VL being done at this EOT+9 month lab.

Just saw your last post questioning ALP - I was just about to ask about that! Did you use the same lab? And do you have any other (additional) comparative ALP's, other than the the labs you post today and that first lab entry in your sig line? Are you sure you did not mis-print and switch the numbers for the AST and ALP incorrectly in your very first set of labs posted? If your numbers are accurate and there are only these 2 ALPs existing, then it is a little odd that it went up a bit, but still, todays posting of 90 is normal (ref. should be less than 120). 

So, looking at the given the normal ref. ranges on your labs posted today ... your platelets are still "technically" within normal limits at 167,000 (ref should be over 150,000), WCB may be a bit low 4.920 (ref should be 5000-10,000) but not rock bottom. Yes, uric acid is up some at 8.4 (ref. should be 3.5-8).

Was it the doc who suggested your normal but perhaps on the "low-er-ish-side" platelets definitely had to do with your spleen (or was that your thinking)? Also, what did he say about your "low-ish WCB? Mostly ... what counselling does he give you regarding your abnormal uric acid?? If you have not been councelled by him on these lab results, you should ask him - especially if you are having symptoms of "gout like things". 

But man, all the rest looks really good! Wonderful the way your ALT/AST's (AND your GGT!) have all just plummeted. Sterling is right!

I think common sense would dictate you keep receiving doc counsell and bloods for anything that has been shown to "over limits", and I would get another abdominal ultrasound/and fibroscan if you can.

Sorry you are having these other things bothering you - water/fiber/good diet religously for your constipation. Water for the headches too. See about this uric acid thing.

 What else have you been up to - working hard? C.

Hi Razor,

Have you had a colonoscopy before? I would chat with gastro doc re: the ALP as well as the constipation. Diet plays a big part and may help.Fruit, vegs, fiber and of course water. 

I have just noticed the ALP has crept up to 90 U/L, Any significance ? 

i couldnt view my blood tests , so uploaded again.

Hi all, not been on for a time, sorry.

Anyway, constipation, i never suffered before, but it started during treatment and still having problems now 9 months post treatment. That, along with a few other problems, gout in my hands and feet, mobility problems in my arms which i had to have cortizone injections, back ache problems, head aches which i never suffered from before and a few minor issues. I have to say though, i am no longer  getting pain from the liver region.

I did recently do 9 months post treatment bloods, results attached, i am no doctor but the liver enzyme results are sterling, only problem low white blood cell count and platelets (think this is due to the damage to my spleen) and high uric acid (gout).

I didnt do a viral load test as its too expensive here, but the lab where i do my tests reckon with these liver test results there was no need! Is that correct anyone ?

At 12 months i will do however.

Hope everyone is ok and negative still.

Onwards and upwards.

Regards, Razor x