Hep C Discussion Forum

HepCGtype2 · Senior Member

Started treatment

Tig · Admin

Hi Ms. Shelly,

That was an interesting article, thanks for sharing it. Sadly, it's not that uncommon to hear stories like that. Doctors are just now starting to take HCV testing seriously. There would have been a lot less suffering had the testing been made part of routine physicals, decades ago. Had they paid credence to the knowledge that Baby Boomers were at a higher risk for the disease, many hardships like hers and ours would've been avoided or mitigated at the least.

Looks like you were smart to get in for that colonoscopy! Appears you had a tubular adenoma (polyp) at 25cm (distance in) and another located in the rectum. Both negative. Yeah!! Good to get that potential problem eliminated or "nipped in the bud (butt)" wink

Typical 4 week bloodwork is the:

HCV Viral Load
Liver Profile or Complete Metabolic Panel. That will include several things, which include the ALT and AST, these are the enzymes we are always curious about.
CBC or Complete Blood Count

If you get those, you'll have a good idea where things stand. If they want to do anything else, I say why not! Let us know what you find out.

HepCGtype2 · Senior Member

Hi all *waves to everyone* :)

Just popping in quickly to copy a list I saw somewhere of what information I need when doing my first blood tomorrow, such as i see in all of your signatures.
Just started my 2nd month 2 days ago, still feeling great, no symptoms, etc.

I am not convinced that the *reboot* I speak of isn't at least partly related to the Hep C medication but if so, I cant say whether one week alone on it would make one feel this much better?
Maybe it is a bit of this a bit and a bit of polyp removal.
I just know that my energy has increased for the first time in several years.
Yet, when I asked the Liver doctor, who BTW is known to be one of the top ones in Canada, he told me that there are people that say their energy has increased but he feels it is a placebo effect.
But it it works for them, then great. So what do i know?

But, I saw this article here in Canada yesterday, and was fascinated for right away i could relate, if not to all of her symptoms, some of them and the misdiagnosis they made.
Anyone with HEP C should read this.

www.thestar.com/news/world/2017/09/03/her-doctor-thought-it-was-cancer-but-she-instead-got-a-surprise-diagnosis.html

As for whether or not the decimal point was correct or not, I honestly dont know but here is the pathology report on the hospital website.

Surgical Pathology Consultation Report

SPECIMEN(S) RECEIVED

1. Intestine-LgBx: Polyps 25

2. Intestine-LgBx: Polyps anal

DIAGNOSIS

1. Colon, polyps at 25 cm, biopsy:

- Tubular adenoma

- Negative for high grade dysplasia

2. Rectum, polyp, biopsy:

- Tubular adenoma

- Negative for high grade dysplasia

LamontCranston · Senior Member

Canuck wrote:
Hey Hepc2,
Ah, so somebody WAS listening to you, and went "light" on the drugs!
Yes, I knew someone else who had one done with no sedation at all.
I would prefer to be unconcious, with no memory of their instructions to me. But, really good!, the procedure was tolerated OK for you. And good that it provided some instant insight (literally, heehee)!
Did they biospy anything? Some do, just on principal, especially if they see an irritated/inflammed area or an area of interest, just because you have all gone to the trouble of being in there.
So, did they give you dietary advice or a particular regime to follow for your bowels?
Hope you are well-saturated now, and catching up on some nutritian. You shoulda got them to top you up with a 1/2 litre of fluid via your IV while you were there, to start making up for any short-fall in your water stores! But good you did not develop any dull headache due to a dip in your water levels.
Lucky, lucky girl you have not detected any new bad feelings from being on the epculsa. We will hope you will just sail right on through to und, with no new maladies to bother you. C.
What is your blood draw schedual over the 12 weeks?

hmm.

About 10 years ago I had a Sigmoidoscopy, they had a TV monitor in front of so I could watch them driving that thing around in there. No drugs, unfortunately. I have to say it was the Most Disconcerting Thing, ever.

My recent Colonoscopy was done under full anesthesia, propofyl and demoral IV. Nice! Especially the 30 minutes or so of post-op dreamyness. "Dude! Can I get 6 of those to Go?"

Lindsmatt52 · Senior Member

Thank you Tig!

Tig · Admin

Hi Lindsay,

I'm using Spreeder and one called SpeedReader. Spreeder seems to be the easier of the two, but once you figure out how to use them, they both work well. I found them on the App Store for free. I'm using them on my iPad and it makes reading some of the long posts easier to get through. When you have a lot to stay on top of, reading everything is important. If you come across some easier ones, let me know. Spreeder allows you to use web addresses (URL) and you can copy and paste into it.

Hope this helps!

Lindsmatt52 · Senior Member

Hey Tig-I'm curious what your new, nifty reading app is. Can you share, please?

wendyo · Guru

Diet plays such a big part in how we feel and you have really detailed that for all to see HepC2. I agree. Through trial and error I have found out what my body likes, loves, hates, doesn't do well with, etc. For me I do high protein, low carb meals. Not no carbs, just low. And I am cutting way back on sugar. Still drink lots o water. Living in a hot humid place, got to lol.

Canuck · Guru

Hey hepc2!

What a lovely report, on the state of things. Read it with great interest!

I am so pleased to hear about your "re-boot" and your on-going epiphanies about water and intake!! Yay!! Very interesting indeed your post is. Always glad to hear about people's good health/diet decisions that so prove in being beneficial in tangible, meaureable ways (like your partners experience) - very nice for him, and both of you really, all his new leaf turning! Dietrarily/life change speaking. It's kind of hard no not speak to the very important decsion you made (specifically) to trounce this HCV here tho, as our health, guts, lives are so exquisitively enmeshed and intertwined! I think you are tackling all, in the right ways, on every front. No better way to wage war against and defeat illness, than by just alowing health to win using the simplest measures for the task at hand.

Well, a 25cm polyp IS possible, so ... if so, then I would not be surpised you would feel porportionately better!!!!!! On a scale of my friends miniscule teeny, tiny, hard to even see or find polyps, and her profound relief of very real symptoms with the removal of same, I would say then your relief should be on the scale of huge. biggrin Crikey is right!

Liberally speaking, one could "say" a colonoscopy is an "exploratory" procedure, right?, and, if they end up nipping something off, biopsy something ... then (technically) that IS "surgery", no?, so ... we could stretch to say you just had some "exploratory surgery" done??, especially given they loped out a whopping 25 cm piece of something! heehee. Geez, are you sure they didn't just do a bowel resection and forgot to mention it to you. JUST KIDDING!!!

No matter how big or small either of them were, they DID NOT belong there, and I am so glad they were found, and turfed. Good the pathology of them does not sound scary. Where I am, they would have you back in 6 months or at least in one year for another colonoscopy, and if no further things were seen, then they slowly graduate you to every 2 years, and then onto every 5 years. The tissue must be showing very low on the risk scale for them to not "re-call" you for more frequent-flyer colonoscopies. So good news all around! If they do call you back sooner than 5 years, go, pain in the arse I know, but kint be too careful, and seeing IS believeing. My partner is in the transitional phases for graduating out of the "annual" anal prison, to the every two years sheduale, and can hardly wait for the 5 year plan! (He gets both ends scoped)! He accuses the colon screening people of just making money on his back, or on his side, or, on his backside, as the case may be. heehee

So this chicken or egg thing, why you feel re-booted - hard to say, all things (being polyp-less), cleaned out, more regular, new diet, water AND descimating your viral poulation might be to blame - hard to say what in particular has the most/best effect - but ALL of this is very, very good, and ALL is in the right direction! (BTW - isn't it just astounding how many things water, just plain ole simple water, in creative ways, can help effect cures for so many maladies!)

So glad you are feeling stronger, no sides and are exploring your intake and what works. Yer on a roll girl! C.

Tig · Admin

Glad you're feeling some better, that's great! I think somebody failed to drop a decimal point in there somewhere. In my life, I've never even heard of a 25 cm polyp. More likely it was 2.5 cm. A 25 cm polyp would be a huge mass, for those wondering here in the USA, that would be a 15 inch polyp. I've seen weather balloons smaller than that! But, whatever it was, I'm glad they got it removed and you're feeling so much better.

Sounds like your diet is a good one. After the troubles with IBS, everything you can do to help things gently glide through, without the addition of laxatives, will bring continuing improvement. I've known some folks with Crohn's disease and other intestinal maladies and I wonder how you make it through some of that. How miserable that is, but I'm not telling you anything you don't already know. I see all the TV commercials here in the States for the biologics that help to control some of it and like these HCV medications, they are so expensive, many people have to go without.

Keep us informed of your improvements and don't you worry, if you feel the need to write us a long story about anything going on, please feel free to do so. I installed a nifty new speed reading app for my PC and iPad, so I can fly through some of these articles and letters now!! Take care...

HepCGtype2 · Senior Member

Sorry, wasnt here for a while. Didnt want to bore anyone with my long posts at least until I had my first results in.

I wasn't clear i suppose earlier. She only told me so much as I have to go back for another appointment where all shall be fully explained.
At this moment, I do not yet know what caused it, although some can be born this way, never have symptoms, or start as I did around 50'ish.

They nipped the polyps. 2 of them. One was 25cm. Crikey, seemed large i would think?
Results since show them as benign but of the type that leads to cancer more than another type, (tubular) hence, need a colonoscopy every 5 years.

For myself, I have found I must avoid all wheats/pastas/breads.
Now that doesnt mean I am but I am very careful about not more than once/twice per week and when I do, 50/50 as to whether i shall be blocked a bit more afterwards.
I have since tried Gluten free pasta and as great as it tastes, I am not yet convinced it makes a difference. I need more time to say so, either way.

So far other than the oat breakfast, and staying away from wheat, I was just told to eat more veggies, cooked though, rather than raw.
I moved away from regular lettuce to spinach. So far so good.

Overall, its as if my body has had a reboot.
I dont know yet exactly why though.
Its only been 2 weeks.

Could be the removal of polps?
Or maybe that complete cleansing out before the colonoscopy?
My energy is certainly greater and I suspect my hemoglobin has risen to a better level, but shall find out on Sept 5th, possibly.

So far 2 things for sure have worked for me.
TONS of water.
I used to get liquids but between water, smoothies, the occasional pop, juice, etc, nothing has made me regular as well as drinking only water.
5 x 500ml bottles daily and I am half way peachy.
But I also take the RestorLAX for 3 days here, 4 days off, 3 days on and so on.
Drinking tons of water, along with the RestorLax and it's almost too much.
I dont want to be crude but I know how many hours after taking it I am safe for but when I first start to feel a bit of a rumble, I know that the washroom better be free. LOL
Very soft, very easy to go, almost a bit too easy.
I believe, unlike Metamucil, for example, that RestorLax somehow keeps your colon hydrated. I believe that.
I find it is more productive than Metamucil.
On the other hand, my partner who doesnt have these issues, finds that the RestorLax is too much for him and uses Metamucil to stay regular.
And in his case he eats a lot of cooked green beans and believes they help him tremendously.
Along with 6 bean cold salads 2x a week.
So everyone is different and you sort of have to find whats right for you.

I have gone into groups on the web for IBS and it seems that many in those groups are far worse than I, or at least at this point in time.
If you read such groups, you will discover what they believe you should stay away from and what you can eat, but even then, it changes from person to person.

I am in the city and appointments with doctors take forever, so i dont have a second appointment until January. I shall find out more then, about the colon but figuring out what works for me, food wise, I dont think she can really help, other than to suggest a lot more cooked veggies.
If I am still having problems then, they might test to see if I have a Gluten intolerance but I dont think that I do. I just think that pasta, breads, carbs, tire me out.

One thing I can tell you is that my husband retired and gained a ton of weight for the first time in his life, although he's a big boned man to start with.
But he got into a rut and one day said, that was enough, 2 years ago and has lost 130 pounds since, now done to 195 where i always knew him at 210 and liked him there.
Along with that diet he's very regular.
But his diet is strict and I doubt many could follow it. He loves it and has a sense of motivation once his mind is set I have rarely seen in others.
He lives on basic cooked chicken with various seasonings on top, 1-2x daily green beans as a snack at least once a day, a potato once a day, an omelette from egg whites only, 1-2x daily.
He eats 6x daily and believes strongly that that alone, along with what he eats is how he accomplished it. His body never goes into starvation mode.
He walks 30 mins a day as well.
A trainer set up that diet for him and its been boring ( I think ) but after the 3rd day or so, he no longer craved any sugar and green beans or even chicken now, is like a great drug to him. He loves it.

Hope that helps, at least until know more???

In the meantime, I think that this Friday, or Saturday I start my second of 3 months of Epclusa.
So far not one side effect, thankfully.
I feel stronger, better but honestly can't say if its the drug or the colon/polyps removal, etc.

Hope all of you are well??!!
Going to look around the board and see how other newbie Epclusa people are doing.
As soon as i know more I shall let you know though, food wise as well, etc; but you might wish to take a look around IBS groups for a regular list of what people suggest.
I am not convinced that IBS isnt just a catch all phrase for people over 50 whose system isn't working as well as when they were younger, but such lists there exist to help you get an idea of what works for others, and not.
Just too soon for me to yet confirm what exactly works for me.

EDIT: One thing I should add. Having felt so great, digestively I have done what humans do and over the past 2 weeks I have found myself "relaxing" as to my strict water intake. I have thrown a pop in there, a milkshake, which takes me away from the regular amount of water i was drinking.

I will tell you that the very moment i do that, I start to feel "bunged" up again. Which I suppose is fine, here or there but I have learned, at least for myself that a very strict water only regime makes my body work in ways that other liquids just cant.

-- Edited by HepCGtype2 on Tuesday 29th of August 2017 08:22:37 PM

Canuck · Guru

Hey, ya thanks hepc2, for the good feedback (on all) since you saw the Gi/colonoscopy person, oats sound good, bet they taste good that way too. But I am still a little at a loss for what the key things are that she deduced and advised you on. "Twisted bowel" is not very descriptive, had she said inflammed or you have diverticulitis or diverticulosis, or some such thing, it would have been a little bit more informative (for me anyway) as far as what foods to avoid. Or if she had highlighted what she wished to BEST achieve, (with prescribing the diet she did to you), that I would have found even more helpful. Like, if she had stressed .... you need an overall soft, gentle, easy to digest diet, highlighting soluable cellulose versus insoluable, little rougage?, hi-fiber/lo-fibre?, or to avoid gas forming foods, or concentrating more on easily-broken-down bulk, then that would have given us more to go on (sorry for the pun) -- I would be wondering about almonds and spices too! Oh well, see how it goes, you will (by experimentation) graduated like you say, be seeing what foods work and what doesn't.

Don't give it a whippet of thought about how long your posts are - I myself own no edit button, they haven't succeeded in training me to be short, can't shut me up, vebose is my middle name, and they haven't kicked me off the site yet!

So, she nipped the polyps off? I had a friend once, she had nothing but troubles with her bowels off and on for quite some time, at times she was in quite a bit of distress! Finally they got around to her colonoscopy, all was normal, except for a couple teeny-weeny miniscule polyps, they nipped those off, and she got better, like night and day, in no time, no more troubles - funny, something so small could wreck such havoc for her, but they did. Maybe the bowel things are and will be turning around for the good for you now too! (one way and/or another).

Glad you are not feeling not too bad. Day 9 is lookin' good on ya! biggrin C.

Lindsmatt52 · Senior Member

Hepc2-Thank you for that detailed explanation. It was very informative and helpful to me as I am constantly struggling with symptoms from IBS/Colitis. I appreciate the time it took you to put this all together and hope you will continue to share your experiences with us. Good luck to you and I hope you're feeling much better.

HepCGtype2 · Senior Member

Ok, heres the answers but sorry, I can't seem to type just one or two lines for an answer lol TL/DR?

She focused on this breakfast daily. Stressed how important that this would be.
The only difference in this video to her advice was she did not mention either cinnamon or almonds.
I have personally noticed that almonds do not digest well for me, leading to constipation.
As this video stressed, its extremely important to mix the oats in the bowl with either water or milk, and sit it in the fridge overnight.
This softens the oats with the 1 tsp of Flax seeds in-between the oats and berries. She has also mentioned the importance of Hemp Hearts, which I am yet to look up/find.

jamiemendell.com/what-i-eat-for-breakfast-the-overnight-oats-tutorial/

Aside from that, she stressed that I needed "cooked vegetables". I have long been a huge salad consumer, using raw veggies. Thats a no no apparently. Who knew? I didnt.
Didnt cause any problems for me before now.
So lots of cooked green beans, and of course broccoli cooked, which was one of my faves raw.
So fewer veggie salads, more plain spinach versions + separate cooked veggies.

Beyond what she offered, I have found that I have had to back off everything I enjoy eating and eat only cooked veggies, and fruit for a day or two, whilst using RestoraLAX.
I have used products such as Metamucil which didnt work for me.
Tried RestorLAX for the first time 2 weeks ago and it worked very well. I shall assume it might be limited if on a bad diet, etc; though.
Was told to use it 2 weeks out of 4.

Having cut out most foods, I am now introducing different things very slowly in order to see how I react to them.
As I said, I used to eat a handful of almonds daily but discovered through this that they were terrible for me but without knowing exactly what food item is doing that its overwhelming unless you back off of everything as I have had to do and slowly introduce items,
so I can tell if that one works for me or not.
Gave up steaks and heavy meats a few decades ago as I could always feel my body working overtime to digest them, and stick only to chicken.
I should add fish but yuck, I dont like it :(

Something I found interesting was this:
When my energy first failed, I gained about 40 pounds over time. A first for me always having been no more than 120.
I was tested for diabetes and given pills. I watched very carefully for a year, my blood sugars and funnily enough I could drink, lets say a Coke and not register but any white or whole wheat breads, pastas, etc, sent my sugars sky high
Cut those out and I was below the diabetic level again.

Why i found it interesting was because when I hit 55, I started to enter menopause, which is late for most woman.
This concerned my doctor.....one of the reasons why I now believe she wrongly assumed I must have uterine cancer as I understand late menopause is a risk factor.
I dont personally believe I underwent symptoms of menopause, or at least the ones I hear woman speak of, but at the same time my body started reacting, as stated above, bloating ( now understood) and I believe they either jumped to these massively wrong conclusions or
wrote much of it off as being menopausal, when I never felt that it was. Just as i believe they jumped on the diabetes bandwagon much too quickly, although it was good for me in the long run as I learned what breads and such were doing.

Beyond that, she found 2 polyps but strongly told me from her experience looking at them that they were benign although they will be tested nonetheless.
Up until she found those, she said aside from the twisting, I was in great condition and would not need another Colonoscopy for 10 years. Upon discovery of the polyps, she said 5 years.

The colonoscopy i thought was rather fascinating to watch, on the screen awake.
The drugs so weak they wore off the first time, perhaps 15 min in, so was given more.
I would have hoped they might have lasted a good 30-60 mins afterwards, reward for having been a brave champ but no, they wore off about 1 min after it was all done.
I was up and almost off of the table within 1 minute of it being over but...it took a couple more mins to convince them that I really was strong, fine and able to go and did not need the 45 min laydown offered.

My blood schedule for the 12 weeks is about once monthly.
I have my first test September 5th
and no, NO SIDE EFFECTS yet and going into the 8th day so, hopefully all shall remain clear the last 11 weeks.

(i must learn to type short posts somehow)

Observer · Guru

Hey hepC2,

I'm so glad you sailed through that procedure and got useful information from it. I'm curious to know what recommendations they made for if it happens again, is it dietary? Can you avoid it happening again?

My mom had a very twisted intestine a few years ago, she ended up in ICU for almost two weeks and had to have surgery, they figured in her case it was from old scar tissue growing onto her intestines from previous surgeries, like appendectomy and tubal ligation (both done in the 60's when appendectomy scars were about 8 inches long).

Anyhoo, so relieved for you that it's done and dusted and you didn't get a headache.

looking forward to hearing about your blood test.

Alison

Canuck · Guru

Hey Hepc2,

Ah, so somebody WAS listening to you, and went "light" on the drugs!

Yes, I knew someone else who had one done with no sedation at all.

I would prefer to be unconcious, with no memory of their instructions to me. But, really good!, the procedure was tolerated OK for you. And good that it provided some instant insight (literally, heehee)!

Did they biospy anything? Some do, just on principal, especially if they see an irritated/inflammed area or an area of interest, just because you have all gone to the trouble of being in there.

So, did they give you dietary advice or a particular regime to follow for your bowels?

Hope you are well-saturated now, and catching up on some nutritian. You shoulda got them to top you up with a 1/2 litre of fluid via your IV while you were there, to start making up for any short-fall in your water stores! But good you did not develop any dull headache due to a dip in your water levels.

Lucky, lucky girl you have not detected any new bad feelings from being on the epculsa. We will hope you will just sail right on through to und, with no new maladies to bother you. smile C.

What is your blood draw schedual over the 12 weeks?

HepCGtype2 · Senior Member

Hey Canuck the job has been done!!!!!

Apparently i have an extremely twisted bowel.
Very healthy inside otherwise but this doctor was great and explained that it was one of the more twisted ones she had seen. Figures eh? :) Couldn't have been a normal one.
She believes that this is the root of the earlier illnesses, not Hep C, etc.
She said that is likely the main reason I have been getting so ill.
Essentially backing up to a point its making me so.
Have been given solutions to deal with it and I guess as we become older, I can't get away any longer with certain foods I might have at 30.
The cleansing out program 2 days beforehand had me feeling a lot stronger, felt like my old perky self and again, the stomach area just flattened out right afterwards.
Hell I would have begged them for that same cleansing regime once a month if they would have agreed :)

Good thing is at least now I know what to do if I were to become that ill again, while taking Epclusa.
My fear was that 2-3 weeks in, I'd be ill again and not be able to keep down the pills but I now have ways to combat it before that happens.

They didnt knock me out.
I was awake for the whole procedure.
Not sure if that is the way they do all of them today but it was said to be accurate, you need to patient to move from side to side and back often, which one can't do knocked out.
I was told they gave me some valium first and then I think Fentanyl.
Whatever it was it took the edge off.
For most people without a twisted bowel it would have been much easier but trying to get around all the curves led to quite a bit of discomfort but my sense of humour prevailed and we got through it.
TO be honest, for anyone else facing a Colonoscopy for the first time, even though i had complications, it was a breeze over all.

I believe, over all, that they went extremely light on the drugs given me due to not being exactly sure what caused the problems years ago with the other anesthesia. I had more or less said I'd rather go light then overboard and i believe she did as little as possible for that reason.

Yes, I was concerned I might develop side effects today from Epclusa due to not receiving any water over the past 16 hours but no, I will now be a full week in within 12 hours and I am happy to say, so far, not one side effect from this drug, yet!!!

-- Edited by HepCGtype2 on Friday 11th of August 2017 03:10:52 PM

Canuck · Guru

Hey HepC2! (probably not 3),

Well, things are moving along! Corrections (of all sorts) are happening as we speak! The most important being that you are annihilating that virus in droves by now. biggrin

Do not fret the scoping - you will probably enjoy the wee lovely short nap out of it. Then home again, home again, to catch up on some of the calories and fluids you lost with the prep. Not the same kind of one/two knock-out you had in '82 - they use very good designer drugs now for scoping, very effective, minimal sedation, but you are "out" - you won't remember a thing!

No time like the present to rule out stuff with a scope, but still, a little extra burden for you to have to prep for, whilst just getting used to idea of being on HCV treatment! We can see you ARE made of very stong, resilient stuff girl!

So, maybe the Gi work-up(s) will rule some things in, or out, so either way, a good idea. You did have a lot going on, all at the same time there!, just before treatment, when you were feeling so sick - food poisoning? ya never know, I only thought maybe it could have been (as well) a "tiny bit" of a stomache bug (additionally), landing on you, in tandem with everythings else that was happening to you all at once - sometimes it IS so hard to tell what's going on when there are so many things all going on at the same time! A humble stomache bug can really seriously rock the boat. But, I am sure you will get to the bottom of things (pun not intended), methodically, eventually.

Hope your morning scope visit goes smooth and quick, I am sure it will - the only bad bit is when they keep disturbing you to wake you up from that delicious relaxing nap! smile C.

HepCGtype2 · Senior Member

Sorry to hear that it's become worse for you Observer.
I will keep your post in mind if I ever feel I need to try magnesium.

Fortunately in my case mine is still very slight.
I assumed it was a combination of aging, change of lifestyle (more time sitting down than before) and a weight gain I had experienced for the first time, within the past 4 years.
Interestingly my husband has also experienced it, yet he does not have HCV. ( He contracted it but it cleared in his system naturally)
Which was why I had just assumed it was a sign of aging.

The only nerve damage otherwise i am aware of is on my tongue.
Damage during that operation I had as a teen they botched when extracting 4 wisdom teeth.
Dont notice it unless i am thinking of it.

6 days in and I haven't experienced any symptoms other than feeling waterlogged lol
But hoping that everyone's great advice about such has played a great part so far in preventing such.

Agree with you though, better to have the tingling than active HCV!

Observer · Guru

Yes that sounds like it might be neuropathy.

I got/get a tingling, burning pain on the top of my feet..more one foot than the other. Sometimes it has sharp pains (when walking) and sometimes it hurts/burns so badly the weight of my sheets and blankets are unbearable.

Sadly,in my case, my treatment seemed to accentuate the damage and a year and a half after treatment, I finally got into a neuroloigist a week or two ago. She said what I have is called 'small fibre neuropathy' and is most likely caused by the HCV. As it can also be caused by certain drugs so she thinks my treatment didn't help the damaged nerves but were not the original cause (although even if treatment did cause it, I would take tingly feet over HCV any day)

I take magnesium at night to stop leg cramps and when I started researching neuropathy I found a few ' studies' where they used magnesium for it so I decided to study myself and started to take it twice a day now and although I still get it, it doesn't seem as bad or as constant.

i have to do X-rays and bloodwork before my next neuroloigist apt. Not sure why the X-ray, didn't think nerves would show up on them...might be a waste of time, but i guess time will tell.

Alison

HepCGtype2 · Senior Member

Interesting.
Reading another thread here I notice talk of Neuropathy in the feet, being related to Hep C?

The past year I have noticed what I thought might also be that.
Sometimes I put it down to having been at the computer too long perhaps and put my feet up, which alleviates it most of the time.
Almost a tingling, as if they are asleep but it's not that.
If I walk on it, the feet are a bit tender but movement gets rid of it within 20 seconds.
It sometimes happens at night as I am laying down in bed, but again, legs up and it is alleviated.
Its not swelling from having been stationary for too long. I am aware of the difference.

First time i have read that this might also be a symptom of Hep C.
If so, has it gone away in those with it, after successful treatment?

HepCGtype2 · Senior Member

Ok, if you could change it to Genotype 2, that would be less confusing for others.
I had a test in 2008 and the paper, from the Public Health department says its 2.
I have had a couple of tests since with a liver foundation and they always typed that it was 3.
When I enquired with that same foundation recently, online the number changed to 2.
So I interpreted that as having been the mistake corrected.
Yes I shall remember to change it when I log in next time. Thx.

First Colonoscopy.
Am nervous.
Have only had one operation so far where I was knocked out in 1982.
They gave me the wrong medication.
I was paralyzed, stopped breathing while 5 doctors stood behind me discussing a sports game.
Just as I figured I was about to die from having been without oxygen for some time, I had a gran mal seizure,
which at least alerted them that I was in distress.
When they were unable to keep me wake after the 5th attempt, I was given a top up of blood. :P

So not looking forward to this but it is what it is and I am at that age now where this needs to be done.
They gave me something called Pur-Odan today which is a very citrus drink. Not sure if this is the one you meant Tig but it works very quickly lol

I dont believe that illness was a flu although food poisoning did cross my mind.
Each of the 3 times I was really ill, I had been eating for a few days, a chickpea salad from a major store, but I think if that had been the cause, others might have been ill as well.

I have had a sudden drop in hemoglobin, on my last blood test, a week in between having been sick in June and then in July again.
The bacterial infection I am thinking of, for the stomach, not only shows the same symptoms alongside bloating but a lowered hemoglobin.

Anyhow, 5 days in so far and no side symptoms at all, yet. Fingers crossed there wont be any!! And yes, I am waterlogged :)

Observer · Guru

Hiya 3/2

As Tig said, these are powerful drugs. The elevated water consumption is to help your body flush out waste and toxicity, without the extra hydration your body has no way to eliminate the dying virus or the drugs and the buildup seems to cause headaches.

BTW, I wonder if your recurring flu could have been some sort of food poisoning?

A

Tig · Admin

The dreaded colonoscopy prep..... they never get any easier, do they? I do have to say that the new stuff you have to drink is waaaayyyyyyy better than that salty lemon backwash they used to use, ewww! That was the worst!

Do you want to change your screen name to Genotype 2 instead of 3? I can do it, but you'll have to remember that the next time you log in. Let me know!

HepCGtype2 · Senior Member

Thanks all.

Had to do a quick conversion of 4 qts as I think in mls so I see we are back to the 8 x 500 ml bottles again.
I tried so hard to get through 8 bottles today but have so far at 7pm only made it through 5.5 and I am feeling pretty waterlogged already lol
I will keep trying my hardest to get more down the chute though.
So far ok though.

I was especially concerned because I am on day 4 today and was scheduled for a colonoscopy after i started these pills, for this coming Friday morning, which would make it my 7th day.
The last thing I wish to be is ill with side effects before this procedure which is stressful to imagine enough as it is :(

Dont think diarrhea is going to be an issue I need to worry about with this coming up as I have to start some procedure tomorrow to "cleanse* my system.
I had been led to believe that this was not going to be scheduled for some time yet.
I had specifically asked the Hep C nurse if I should hold off but had not been given the date for it at that time so I wasn't thrilled to hear it would be taking place the first week of these meds.
So perhaps a bit more aware of the problems of side effects the first week than I might have been had it not been scheduled until a few weeks in.

Edit: I agree with Canuck, I DO deserve a break. /fingers crossed :)

But no, it wasn't flu. I wish it had been. I know there is a outbreak in the UK, Norovirus so assume that will soon hit here

I am doing a lot of editing here. Was it the flu?

I would have said no but to be honest I cant remember the last time i had a flu. I haven't really been sick since childhood but i certainly dont remember a flu such as that, nor one that I had for 8 days, recovered and 14 days later was hit with again, even worse than the first time, for almost 3 weeks.

So, cant be 100% sure but doctors haven't mentioned that possibility.

-- Edited by HepCGtype3 on Tuesday 8th of August 2017 07:48:48 PM

-- Edited by HepCGtype3 on Tuesday 8th of August 2017 07:49:46 PM

-- Edited by HepCGtype3 on Tuesday 8th of August 2017 07:52:42 PM

Tig · Admin

Lamont hit on an important point regarding the side effects. Back when I did my treatments, the dinosaurs still roamed you know, ha, but side effects were a sign that treatment was working. If we didn't have nasty, brain crushing side effects, something was wrong. So experiencing the occasional headache, body ache or pain, diarrhea, etc., doesn't mean something is wrong, it just means something is working. The constant advice we provide regarding adequate hydration, rest and a good diet, is a way to mitigate the side effects and in many cases will eliminate or prevent them altogether.

Generally speaking, the first couple of weeks seem to be the adjustment period. These are powerful drugs and we have to remind ourselves that you're not taking an aspirin. Don't be alarmed if you feel a bit out of sorts during this period of time. The incidence of various side effects is less than 10% and in many cases, less than 2%. If you're experiencing diarrhea, it's probably not going to last, nor is the nausea, if anyone has episodes of it. Side effects aren't common with the new DAA's, but the ones we do have are normally occurring issues that can be dealt with. That's what we as a group are here to help with. If you're feeling like a turd pulled through a keyhole backwards, let us help you unlock the door to comfort. Most of the time these things are transient and with rest and PROPER HYDRATION, you'll recover from it quickly.

Remember, keep your mind on the prize..... The Cure - SVR

LamontCranston · Senior Member

What day do side effects start? My guess is that is really depends on the person taking the Epclusa/Harvoni/Zepatier and other factors.

What I have gathered here and elsewhere is that drinking Lots of water is a great way to mitigate sides. I have been drinking about 4 qts a day, and other than the obvious need to pee frequently it does seem to keep the headaches to a low roar.

As I have reported elsewhere, I was somewhat constipated for a few days at first, despite all the "natural" remedies, but have now had at least one pretty serious attack of diarrhea, but over all that may have just been a one off thing, as I things are pretty normal digestively speaking at day 9 of Epclusa.

As long as sides arent severe or long-lasting, I know they are just a sign that my body is reacting to the meds, which is a good thing. I want the virus gone. In my case, I have felt crappy for so long, a little discomfort or headache is a small price to pay for the chance to return my liver to it's good old self again, or at least as good as it should be.

Good luck, and as everyone else says, "Drink Water!"...:)

HepCGtype2 · Senior Member

No I believe it's 12 weeks.

(forgot to say thank you)

Curious to understand why the great amount of water is crucial?

I certainly make it a point to drink about 5 x 500ml bottles daily and then perhaps 1 or 2 other cups of various liquids but 8 admittedly will be making me feel a bit waterlogged.

So am wondering if those that have not been drinking enough, are people that tend not to drink enough all the time, leaning towards dehydration, etc?

-- Edited by HepCGtype3 on Tuesday 8th of August 2017 11:16:09 AM

Observer · Guru

Yay,

so glad you've started your treatment

Due to your determined water consumption, you may well avoid side effects!

Are you doing 8 weeks?

Alison

Canuck · Guru

Hi 2 or 3 (hee hee),

I replied to you (over in your old thread, just now), so I have just copied and pasted my reply over here! Glad you have started. biggrin C.

Hey Hep3,

So glad to hear from you again, and to hear you got your epclusa start! Yay! Day 3!

I was so sorry for your prior rough weeks (just prior to your start), obviously, you felt well enough now (had regained enough ground back, and rebuilt some strength) in order to start in on your epclusa.

You were wondering about sides? Have you had any headaches? If not, then you are likely getting enough water in to prevent them - they seem to be the number one thing people may notice the first while, that, or just feeling blah/yuck - but I felt blah/yuck before treatment!

If you have not discerned any appreciable ill-feelings (that are dif than the norm for you) by 3-4 days in, then perhaps you will not notice much at all, all throughout your treatment! We HAVE had quite a few folk here (on various drugs) who have felt nothing, hardly anything, or very little! The ones who did feel yuck did so more in the beginning, than later, and, many could feel better when they realized they just needed to increase their water intake.

So, I hope you are one of those who just sail through! (You well-deserve an nice, smooth, easy ride after all you have been through).

I am glad you have tamed that air machine of yours to behave without causing you grief.

Do you think it was a bout of flu (as well) that you had, that was making you feel so dreadful weeks back? It's good you are having the ongoing GI work-ups - that sounds as though it will help you and your docs work your way through to the bottom of the troubles, if nothing else by ruling things out. (BTW - hey, I hear ya, about how dreadful vertigo hurling can be!, only truly had it a few times myself, wish it on no-one!).

Lots of water, a gentle nutritious diet, treat yourself with as much TLC as you can. Glad you are on your way to being 3-less! biggrin C.

HepCGtype2 · Senior Member

Hi. Just started Epclusa. Am on my 4th day today. Oh no, sorry, my 3rd day. Tomorrow morning will be my 4th.

I had a thread in the introduce ourselves section but just before i started these meds I was really ill for a month so, that thread relates to that, rather than this trip with Epclusa.

There is some discrepancy at the moment and I believe at this point that i am actually Geno 2 rather than 3 which appears to have been an error.

Up until 2 mins ago I thought I was on my 4th day and was doing a silent dance that i had gone 4 days without side effects. I have noticed a lot of people seem to get hit by the 4th day. I thought i was going to miss it but guess i have one more day left before i know lol

So far I haven't anything to report other than i am trying to drink a ton of water. I understand that this is extremely important so i am sitting with two 500ml bottles in front of me now and about 3-4 down already today and i hear that is still short a few.

Tomorrow, being my 4th day, I will be drinking it faster and get a great deal of it down before 3pm so I wont be floating come bedtime :)

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