Hep C Discussion Forum

LM,

A lot of people seem to experience that before AND/or during treatment. If it was new and or sudden and or severe, I would fret more, but f it is "slight", off and on, periodic, tolerable, not really causing you distress (other than being uncomfortable and worrisome) and you have no other symptoms accompanying it, spiking fever/chills  - I too would just be curious about it, and perturbed with the situ, and wishing it would just bugger-off already! 

It is a disturbing thing to feel, right when we are already all wound up, worrying and caring for, and trying to cure up our sick livers.

A little added insult to the "already enough" things going on, the things we have to do, to deal with, to attend to, and worry about on this journey - little pains just to add to your worries it seems - right upper quadrant abd. discomfort has been documented (a lot) all over many posts and threads through the site. Many conversations about it, this nagging/worry-evoking "pain", that some people have and some people don't, some who have it more, and some less, but generally when it is noted, people say (often) it's somewhere about the right upper quadrant of the adb, or, under the right ribs, sometimes it's more epigastric, across the diaphragm, vague or sharp, constant/dull or hardly noticed, mine was a spot on my right lower quadrant back that increased for decades (while i was undiagnosed) and became intractable, I didn't think it had any thing to do with my HCV, even after I got diagnosied) I thought it had been skeletal all that time!!

This kind of discomfort may not co-relate necessarily to a very enlarged liver, or someone with a very high score - it seems it could happen to anyone with an infected/inflammed liver (nor does it AT ALL mean your treatment is not working) - the doc may poopoo the idea that a person can feel liver pain, but many of the surrounding structures adjacent to your liver can. Also, if you study the anatomy in there, you will see an abdominal cavity is PACKED with organs, of which the bowel is crammed right in there, right up under our livers  - Tig likes to point out that the bowel can also send us pain messages. A hard working, over-worked, unhappy/distressed, complaining, sluggish, constipated bowel can aslo contribute to discomfort feelings high up in the quadrant. Full bowels just make for less space in cramped qaurters, throw in some inflammed liver within it's tightly confined enclosed capsuale and, well ... potential for discomfort.

Rule out that your tendency to constipation is not a contributing factor, it can contribute. Try to stay regular, even if this is not why you are feeling this right sided discomfort, regular is still a very good state to be in.

For many fok, it can (and does) just simply go away. Like me, I had my weird right sided back discomfort just up and disappear one day, for good, a while after I was cured! You coulda blown me over with a feather when that long-held back pain left me, I feel strongly (that all this time) it had to do with me packing that HCV, my doc disagrees with me on that BTW! But I remain convinced of it tho.

Don't fret, if you are, then ask the doc, or at least mention it to him when you go for your next appoint. and see if he doesn't reassure you about it. C.

Hey C-Doing well on day 10, thank you!  Getting ready to take my pill at 9 PM, which I do religiously every evening.  I have my phone alarm set which I find extremely helpful!

I did email  (their preferred mode of communication) my NP last Tuesday about the Pepcid and they said I could take 20mg in the am and 20mg in the pm.  They didn't specify a time but in doing my own research, I concluded that I can take one pill with the Epclusa and one at 9 am, 12 hours later.  According to the Epclusa insert as well as what the pharmacist said, I can take up to 80 mg a day, but I'm going to try and avoid that.  So far, I've been doing okay, although a couple of times, I took one Tums 4 hours before the Epclusa because of a little discomfort, but I'm trying to stay away from that too.  I did buy the Gaviscon (they only had the liquid) and tried it once but it was disgusting and like your partner, I was barely able to keep it down, so I don't think that'll be an option in the future!

I'm still pretty pooped most days but am retired so have the luxury of taking it easy when I need to.  I try to do some form of exercise each day but most days just feel like a wet noodle so slog through it.  Maybe that will improve with time, but I am getting a lot of reading done!  I told my husband this might be a good time to brush up on my Spanish and put good use to this down time!

I am managing to drink about 96 ounces of water daily, which is quite a challenge for me since I never was a big water drinker, but I'm sure it's helping with the headaches, which are minimal.  Constipation is still an ongoing issue, but also one I've dealt with most of my adult life, so nothing new!  I did think the large volume of water would help with that though.

So all in all, I have no real complaints and am grateful it's going as well as it is!  I'm anxiously waiting for my blood draw on 9/28 and think I will feel a huge sense of relief after that first (hopefully) good result.

Thank you so much for checking with me.  I'm sure you're distracted waiting to hear from Tig, Wendy and all your other hep c family members.  I think we all will feel better once we know they're safe and sound.

Thanks Tig and Canuck-  You have once again allayed my fears!  I think you are the Hep C Whisperers!

That's one of the great things about Epclusa, it is highly effective against any resistant mutations. Relax, you need not worry about it!

Q: How effective is sofosbuvir–velpatasvir in patients with unfavorable characteristics, such as cirrhosis, and does the presence of baseline resistance-associated variants affect treatment response?

In the trial by Feld et al., patients with characteristics that are historically associated with a lower response to treatment — the presence of cirrhosis, prior treatment failure, black race, and non-CC genotype of IL28B — had rates of virologic response similar to those with historically favorable characteristics. The presence of baseline resistance-associated variants was not associated with virologic failure, which was represented in the study by two relapses and no virologic breakthrough. Although the two patients who had a relapse had resistance-associated variants at baseline and at the time of virologic failure, 99% of the patients with baseline NS5A resistance-associated variants had a sustained virologic response, which suggests that pretreatment testing for resistance-associated variants is probably of little clinical value with sofosbuvir–velpatasvir.

Hi All-Tomorrow I will have completed one week on Epclusa.  So far, feeling good except for feeling tired all the time.  My concern now (worry is my middle name!) is, because I  tested resistant to Harvoni and Zepatier, what is the likelihood that I will be resistant to Epclusa?  I haven't really been able to find any data on this and can't seem to get a definitive answer out of my doctors-probably because there isn't one!  But I would love to hear any success stories out there that could ease my fears. 

Sending positive thoughts and prayers to all of you facing Irma and hope you take all necessary precautions to stay safe!

Thanks PS-Nice of you to keep count with me!  Looking forward to that first blood draw in 24 days

I used the liquid. When I took it they only had the regular strength. It worked really well. I guess the price and if you can save money by adjusting the dose and quantity of the super dee duper strength, I'd try that. I'm always looking to save a buck! I haven't looked, but they may have a generic now. I'll have to check into that, too. 

I could actually sleep laying down when I used it! I don't have the reflux now, so the only thing that keeps me awake now is the insomnia, lol! I think (I know) I spend too much time either on the computer, or this iPad. I've read they give off a blue light spectrum that messes with your sleep patterns, if you spend too much time staring at it. It does and I do...

PS: No generic available  It's not that expensive anyway. Something that works is worth it!

Thank you Lamont!  I can't hear enough of these success stories!  So far, the side effects have been minimal, so I'm very grateful for that.  How wonderful that your VL was un detected after 4 weeks!  I'm praying for something similar and would be thrilled to have all my digestive problems disappear as a bonus!

Epclusa is a remarkable drug. I went from 5.7million to Not Detected, in 4 weeks. Flat out amazing. Sides have been minimal, just the occasional headache, and a bit of insomnia. Also noticing that many of the ongoing digestive problems I have had for nearly 3 years, are just clearing up, like poof. Who woulda thunk?

Glad you're on your way to being Free of C!

Lindsay,

Have you ever tried Gaviscon? When I was having problems like that, it worked wonders for nighttime reflux.

LM - that's good news all around. I recall reading an article where a woman on Harvoni had toothaches at SOT. She went to dentist and couldn't find anything awry and it cleared up after a few days. I imagine these drugs work through every cell and fiber of our bodies to eradicate the HCV..hope the tooth continues to stay calm and carry on.

LM, 

OK, OK, I looked! It was bothering me that I could not easily see antibiotics on the no-no list - quickly found "some" (unlikely you would even be offered these anyway, but ya never know!) - "Nafcillan" (for staph infections mosty) can decrease effectiveness of vel, and "Rifampin" (for some more exotic kinds of infections) can decrease effectiveness of sof, and of course these two drugs have multiple "names"! There might be more antibiotics to be found on the no-no lists, just not easily seen. C.   

LM, 

The way I interpret your results ... your result says you are "negative", (non-reactive), or, in other words, you have NO surface antigen detected.

This is a good thing. This is what you want. If you had either, an acute infection of B, or, had a chronic infection of B, they almost invariably find you also WILL be "positive", (reactive) or, in other words, WILL show surface antigens.

As you have no surface antigens, this is good, this shows you do not fall in the category of being a person with acute or chronic B.

This is the most important part of your B testing - the surface antigen -  existence of the surface antgen is what you do not want, and being that you have no surface antigen detected! - good news.

See - it was a good thing your NP and your child doc keep doing their due diligence and are confirming /re-confirming your growing immunity status's against A and B.

Yes, your antibody titre will grow (as you are in the process of gaining full immunity against B), and you will reach a titre of 10 or more - right now your results show your surface antibodies are "reactive", "positive", or, in other words you DO own surface antibodies (a good thing) to help protect you from B, but they may still be less than 10.

That's how I interpret things.

I agree with (what you called) your simplistic explanation. : )  C.

LM, 

Polo is right , she is indicating (like what is shown on her report) that your surface antigen SHOULD be negative or non-reactive - a good thing.

I'll take a stab at answers (my responses will be in red):

You said ... I'm looking over some of the blood work I had yesterday and everything is normal so far except for this:  HBsAb is reactive (having a surface antibody is a good thing, that is what happens after immunization for example - it can indicate you have immunity, or are gaining immunity, perhaps where you might have not had surface antibodies before) /abnormal (the only reason your HBsAb is consdiered "abnormal" is likely because it still has not yet reached a level above 10) and HBsAb concentration is abnormal (this can be explained as simply as that your surface antibody has still not come up to a predetermined desired level yet in response to your immunization - remember you have not fnished your full immunization yet, in all likelyhood you have had an good immune response and have protection from acquiring hepb, but your titre (concentration) may still be under 10, and it will probably be 10 or be over 10 by the time you finish your immunization) .  Can anyone explain what that means?  I was tested for Hep A, Hep B and HIV and all was negative so don't understand this result.  Of course, my NP is off today.  It also says my HBsAg is Nonreactive (non-reactive surface antigen is a good thing, you do not want to be surface antigen postive). Leaving me feeling a little freaked out!

Hi LM -- I checked my stats and the HBsAg is same, Nonreactive and the other columns show that nonreactive is standard range. (see below) For HBsAB, and others stuff that's one for the experts to explain here.

Thanks PS. That was my thinking too. I'm feeling pretty pooped today so may be ready for my jammies by 9 PM!

I completely concur with your praise of all the wonderful people here.  They are my rocks.  And so glad to have a newbie friend too, PS, even though you will graduate a month ahead of me!

How about antibiotics?

Thanks for the pep talk, Tig!  I'm accepting the fuzziness as a small price to pay for a cure!  Some of it may just be my normal personality!

Yes, my NP is doing a blood draw at 4, 8 and 12 weeks then again at 6 months.  I have become more comfortable with her and am starting to think she was just having a bad day the first time I saw her.  She is of my generation, although possibly 10 years younger than I, but I do now have confidence in her and her opinions.  My friend who went with me said the same thing, so I feel much better about all that.  I don't imagine I'll have any more dealings with the young dude unless I see him at the end of treatment or if my treatment fails.  

Two questions-I've had a toothache for the past few days ( not what I need!) and am wondering if there are any issues going to a dentist?  Also, I took my Epclusa at 8 PM last night but have decided I'd prefer 9 PM.  Can I just take it then tonight or do I need to gradually change the time?  Since it's only an hour, thought it wouldn't be much of an issue.  

Time to go get more water!

Hi C-  Boy, do I appreciate your thoroughness!  You always make me think outside the box.

So, to answer your question about the PPI, I stopped taking it yesterday and started the Pepsid (actually the generic, famotidine) last night with my Epclusa.  I didn't really go through any kind of weaning period off the Dexilant.  I slept fine last night although had strange dreams that I was with a group of people who were all sitting around and smoking something to get high!  I remember in the dream that I didn't really like the way it made me feel but couldn't escape it.  The reality is, although I spent my late teens and early 20's in California pretending to be a hippie, I never really enjoyed pot or any other drug that made me feel out of control.  This morning I woke up feeling a bit fuzzy and with a slight feeling of vertigo (sort of how I was feeling in my dream).  Not sure if this is all just in my head or if it's the Epclusa.  I do get occasional vertigo and take meclizine for it, which my NP said is fine, but may call the pharmacy to confirm before I take it.

I already got a portion of my blood work back and everything is normal.  My ALT actually went down from 33 to 31.  I'm not really sure what other tests he ordered, but they took 8 vials of blood, so I'm sure there's more!

So, the bottom line is I'm just feeling a bit fuzzy this morning.  I've had one cup of coffee and 16 ozs of water so will continue to drink water and hope that helps with the fuzzies!  

Hey LM,

You and Polo had me LOL about your "child docs", I've had them too (another story for another time tho).

So ... wise "old" NP is lookin' better and better eh?, not only closer, but she but wants to see you and poke you on a frequent basis - possibly bloods (and perhaps VL's) as often as week 4, 8 and 12! That sounds good to me!

Good junior did arrange another blood draw for you today tho, and that he re-affirmed he did not see things much differently than your NP. Too bad neither your NP or specialist wants to waste money doing U/S's or fibroscans, you have to take their word for it that they are feeling assured with your low fibrosis indicators and saw nothing noteworthy from your old CAT images. You can still keep asking your NP for U/S or fibroscan if you wish - maybe you will wear her down! I had to resort to outright begging sometimes to get some of the tests I wanted! In some cases, when they balked, I told them it would simply do much just to make me feel better about the before and after state of affairs, and they relented for re-assurance purposes! Oh I WAS an expensive pain in the arse case!

OK, you mentioned (quite a while back) you were on Dexilant (which comes in different formulas) and Dexilant is a PPI. Unknown formula and dose but assume you had been taking this for some time (possibly/additionally with occasional emergency dosings of tums-like things, in a pinch) for (likely long-standing) GERD/haitus hernia type problems - which we suggested you discuss same (all of your meds) with your docs and/or pharmacy re: taking them with epclusa.

Then, first time today, you mention (now) being on Pepcid (famotidine) which also comes in different formulas. but Pepcid is a whole dif animal from a PPI, Pepcid is one of those H2 antagonists.

So, you got me confused now - how and when and who helped you make this leap, from curtailing the PPI use and going instead to use a H2 antagonist? 

I would do as your NP says (her instructions on how to take Pepcid with epclusa), I would also do as your specialist suggested and speak to the pharmacy about your Pepcid and epclusa use - just to confirm everyone is on exactly the same page. Be sure to have actual Pepcid formula name out (box or bottle info) ready to discuss with pharmacy. You can also ask pharmacy and NP about any potentially wished for "emergency" tums use, before you might suddenly be thinking you need that, and see what they have to say about that as well. Did they all warn you off taking any supplements or OTC drugs without OKing it with them first? I can't think of a thing we have not checked and double checked!! : )

Have you already got the 2 legs at the head of your bed propped up a little bit, maybe with a couple 1/2 to maybe 1" thick hardback books?

Sounds like you are very ready for your nice, organized, well-deserved blast-off tonight, and I am betting everything (I'm throwing it all in!) that this whole thing IS going to be a very smooth ride for you!  ; )  C.

Congratulations Lindsay! Let the magic and healing begin!

Happy you are hopping on board for your own epclusian epic of slaying your dragon!

...and now the wheel of time is turning closer,,let the slaying begin. It has enough magic that it works even while you sleep! Righteous.

(my Dr. is a little older than yours, he may be nearly 20, teehee)

Wonderful LM!

How did the 2 appointments go? Let us know. Was the specialist worth it? and what was the PPI advice. Did you have any more bloods today? 

Stroke and admire that nice big clean shiny bottle of magic. Day one tonight!!!!!!!!!! Yay. Off and awaaay.  : ) C.

Congrats, Lindsay!!! It feels good, with a little bit of anxiety thrown in, but after you gulp down the first pill, the anxiety is gone and your journey to wellness begins. We're all thrilled to see you get here and we've watched you gain the knowledge and strength necessary to achieve this. Wear your newest graduation cap proudly!! This is going to be outstanding  Good luck, Warrior! Let the slaying begin....