Hep C Discussion Forum

I'm really afraid to get the B vaccine, I didn't even think there was one for A. I wonder about getting it after treatment, wasn't there some kind of B warning with Harvoni? ...oh dang and now I'm on the wrong thread.
Iris

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

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. 

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.

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?

 

 

 

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!

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.  

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. 

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

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.

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. 

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? 

 

 

 

-- Edited by Hoodietree on Saturday 21st of July 2018 12:10:04 AM

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!

 

 

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.

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

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.

Just say emailed the GI doc re my subtype. Hope he replies. Will report back.

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. 

Thank you all SO MUCH for the warm welcome!!

I am still getting used to the site ... my first post had some formatting issues so I will experiment with using html tags to improve readability.

Will create a dedicated thread in the new member area as suggested and also talk to the doc about specific supplements.

Iâm surprised to hear milk thistle is a no no. I guess it makes sense though as it acts directly on the liver.

The one I am most married to is SAM-e. It does wonders for my joints and my sadness :( and emotional pain which I sincerely hope will be abated by treatment.

Much love.

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.

Hi everyone, Iâm new here. Genotype 3, Fibrosis score 0-1. Starting Epclusa as soon as possible, just want to do a little research first as Iâm terrified of side effects. I work in technology very long days, very intense brain work, which I struggle with due to brain fog and the horrible fatigue monster. I will diligently drink a gallon of water a day. I have the following questions if anyone has answers Iâll be most grateful: 1. Is milk thistle OK while on treatment? 2. What about other supplements like vitamin C, B-12 and iron-free multivitamins, emergen-C, natural calm magnesium, and SAM-e? 3. Will I gain or lose weight? 4. Will my fatigue get worse? 5. Will my joint pain get worse? 6. I read a study that said coffee and cannabis are protective for the liver⦠But Iâm willing to give them both up if it means a better chance at successful treatment. 7. What factors increase my chances for success and or failure? Thanks for any help, your friend in gratitude, Hoodie tree

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........

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.

 

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