Hep C Discussion Forum

Trudylookinglass · Member

RE: Oral Lichen planus

Loopy Lisa · Guru

I don't know if this is any help, but I started looking what is in the products I use from teeth to skin care. I was shocked to find how bad some of these chemicals really are. I had skin flare ups, terrible drying out of the skin, all sorts of issues that are auto-immune. I put it down to the HCV, and then went eco from cleaning, washing clothes to my skin care range. Its all but gone. I used whilst away a normal cleaning product and straight away my hands flared up with eczema. I reverted back to my usual products and its nearly cleared up again.

There are several applications on line that give a rating of what is in the products and how they rate in terms of toxicity. Its worth a try moving to a herbal toothpaste, you never know....Some top brands have some awful crap in them that are actually known to cause even cancer. How it is not regulated is beyond me.....

Tig · Admin

PTED - Post Treatment Effective Disorder, is better than PTNED - Post Treatment Not Effective Disorder! biggrin

That healthier liver you mentioned is what this is all about. Now that you have the Dragon out of the picture, you (we) have the opportunity to make the rest of this right, or at least improved. I hope this to be true for you! You've proven the Warrior spirit lives in you, just keep swinging Trudy!

Trudylookinglass · Member

'Beauty Bloods' indeed! Lol (and 'sweet scans' too) I have a gut feeling the oral LP was triggered by tx. Maybe I have been going through 'post tx effective disorder' , as in war btw the HCV & riba+..,, for such a strong drug not to leave some kind of aftermath seems too good to be true. As for the follow up study; it's only blood work- I did ask about fubroscans (I know I'm lucky that I don't have to pay for them at my clinic) but they are not included.So I must ask (Canuck) what are the benefits of a f /u study if it's an extra visit (screening) plus the same bloodwork I would be doing anyway (apart from the obvious 'greater good' )? The one thing it might decrease is the length of time I have to wait to see my liver specialist(2-3hrs in crowded waiting area... sometimes no chairs avail.). I'm not even sure it would effect the wait time. So, why? Hmmm... BTW I did do bloods with a GP to check for anemia/never took supplements as not to mess with values; then I read your post! Great minds..... Autoimmune. Open that door & you open a whole new can of worms. I'll just take a healthier liver and leave that alone. Re: new 6wk trial I'm almost positive includes Riba as nurse gave impression it's the same style drug combo as mine was. Interesting and fascinating advances. May all our livers live long & prosper! Peace Trudeh

Canuck · Guru

Hey Trudy,

What a good post from you. So glad you shared all. Rest up, sleep good, I'll blab on while you're out of the room.

Your post is very interesting indeed.

Congrats on your wonderful EOT+24 week results!!!! Und long ago and beauty bloods at EOT+12 and now at EOT+24, you can't kill it better than that!

The regime you were on WAS very effective, this riba regime may have had some accumulated parting shots at you, if riba IS playing any part of how you are feeling and some of things you have been experiencing, then we can look forward to some of these bad effects that the riba regime may have contributed to you, to decrease in you over some further waiting time. We'll see what improves, yet. (I am still not yet convinced you were not "riba-tized", you know same kind of -tized as in trauma. smile

But man-o-man, other than this "indicative of/or suggestive of" this seemingly elusively-hard-to-definitively-define condition of the most often mysterious auto-immune situ, and your fatigue, and this horridly cruel mouth thing, your liver seems to be REJOICING according to all else. biggrin

That is GREAT your current fibroscan shows 6.1 kPa!!! It is also GREAT you got on their follow-up study as well. (I am on one too). Be assured, they WILL follow you, and with your keen input and questions, you will be able to get a handle on these issues which currently plague you now.

As well as bloods, do you also get a fibroscan and an ultrasound every 6 months as part of your follow-up study then?

Very interesting that they are doing another Technivie trial there, but only 6 weeks!!! Does this new 6 week trial also have with or without riba arms?

Rest your weary head, slumber is good for healing. I am glad you have done so much hard work that you have improved your mouth condition by 30% - very impressive. Keep up the good work! biggrin C.

Tig · Admin

Hey Trudy,

That's very good news in every category, except for the LP. I hope the improvements continue in that respect and with the fatigue. You battled a fierce opponent, don't think you will recover overnight. If you can obtain slow, steady progress, consider yourself right on course! It takes some time and we're all different. The best part of this, SVR and a very promising improvement in your F score. The reduction in inflammation is very helpful and provides improvements in many areas. Keep treating yourself right, that's so important. All of this hard work is paying off.

Good luck on the ongoing study. If you're up for it, I know it will benefit thousands of others. Your commitment to helping others, is admirable. Let us know how it goes. smile

Trudylookinglass · Member

Hi Canuck/Tig Just had my 24wk post tx visit: good labs (all within normal range) aaaannnd.., Bonus! Fibroscan score looks to have greatlly improved since 1.5 yrs. I'm thinking this is a good length of time considering the nature of an inflammatory condition= Intermittent periods of inflammation. Here are my Fibroscan results from pre & post tx Aug '15: 12.2 kPa (F-3) Aug'16: 9.1 kPa Jan '17: 6.1 kPa My 12 wk tx period took place Apr'16-Jul'16 In combination with a complete change of lifestyle , the Technivie combo with ribavarin appears to have significantly aided in reducing my liver inflammation . The clinic I go to is just starting another Technivie 6wk study. I have also been asked to do another study which is a post tx study to monitor your bloodwork for another 6-8 visits (can't remember but they co-inside with regular 6mth visits for lsb work) Anyhoo, just wanted to share in hopes that my experience will help others in making good informed decisions about tx and ..... thank Tig & Canuck for always taking the time to respond to my posts with a firm but kind 'chin up'! Re: Oral Lichen Planus It seems to have taken up permanent residence in my mouth. However through diet (90%liquid)& Reducing stress (!? workin on losing tension is hard when you re constantly battling a mouth monster), I have managed to decrease inflammation & sores to 30% When questioning the nurse re: oral LP being triggered by Hep C, AIH and Tx/ drug therapy.... no answers BUT Dx AIH is NOT 100% 'unequivocally definitive' ...excellent question Canuck ; ) In fact it is considered 'like AIH' due to + SMA (smooth muscle antibody)pattern (which is very specific to AIH). I must end here for now ... still get intensely fatigued . To be continued.... Still standing ; ) True-day

Canuck · Guru

Hi Trudy,

Just a quicky - I'm trying not to wear you out. smile Just wanted to say I went over your labs and gee whiz they look good! Mind you your lab work seems to be using differing reference ranges (USA/Canada/traditonal and other units of measurement) but if I am reading the measurements accurately/carefully, they all look within normal limits, so that is great news!!

I am sure being in trial and on riba they did many more (other) blood tests on you. And specific ones that would be watching you for anemia and such. So tread carefully about supplementing with iron (or any supplement) without discussing it with your doc first and knowing where your bloods are at as far as hgb, iron, ferritin levels, platelets, etc., etc. I am sure they will be doing some repeat blood testings on you, and you can confirm with them what other things should be done as well. I wonder if they will be doing further ANA testing, etc.

I have some of the same issues you do, fatigue, hair stuff - I cannot say mine is related to anemia though.

Nice you had no sides during treatment!! Quite a few folk do seem to be bothered to varying degrees, feel stuff, especially in the case when riba is added. May-be you have, in part, some late riba stuff going on, who knows? Hope your mouth starts to feel a wee bit better soon. C.

Trudylookinglass · Member

Hi (fellow) Canuck.

I welcome the prodding! I too poke around a lot; questions questions question! Particularly for anyone who is involved with my health care. I just need to know... which sometimes exhausts people because it forces them to think , work etc..Your poking has forced me to get out my 'medical file' and read over the labs. writing it all out helps me to further understand what the bejesus is going on within my body.

During my treatment (with 'riba'), I honestly had no side effects apart from chapped lips! NO SIDES whatsoever!!!! a breeze. Almost too good to be true. Ah Ha! Perhaps my body is now catching the 'blowbsck ' of the strong drugs used for blasting the nasty HCV out of my body... it makes sense that your body must pay at some point. The anemia sounds about right- I have all the symptoms including hair loss, fatigue etc and am taking Iron capsules but I definitely need a prescribed strength.

The thing that surprises me is the lack of patient education... why don't they discuss possible delayed reactions and what the could be? I did a study so I suppose some patient blindness is required/expected. I dunno. I sure do feel a bit better after corresponding with you; I have not had time to process everything never mind research Hep C tx - my main focus was the AIH. However, in order to understand the AIH, understanding HCV is necessary since it is the ultimate cause. See! I'm learning!

In terms of a number beside my fibroscan score, I don't have a proper report ( no number) as it was on my 'study enrolment' form but I will request all labs/ scan results & post in mid Jan. To answer to your question re: 12 wk post tx blood work, here it is:

Total bili 0.6

Dir Bili 0.2

Ind Bili 0.4

Alk Phos 60

ALT 14

AST 26

GGT 8

Urea Nitr 12

Creatinine 0.8

Glucose 90

Uric Acid 5

Calcium 8.9

Phosphorus 4.2

Toyal protein 7.7

Alb BCG 4.5

Triglycer 83

Cholest 124 L

Sodium 137

potassium 4

Bicarb 20.6

Chloride 101

Magnesium 1.9

I hope some of this helps you understand your condition.

I gather you are waiting for an appropriate study?

Thank you for your thought/ migraine provoking questions.

I jest!!!!!

Me thinks I just need a rest : )

Babysteps all the way...

Nevertheless,since I did s study for Technivie , I am going to call that number they kindly provided and see if I can get sum answers..or at the very least the $40 travel expense reimbursement that I just read in my agreement 'book' ; )

-- Edited by Trudylookinglass on Friday 23rd of December 2016 06:15:34 PM

-- Edited by Trudylookinglass on Friday 23rd of December 2016 06:25:27 PM

Canuck · Guru

Hi Trudy,

Hey, thanks for lookng up all that stuff. I am sure I have helped to exhaust you! I poke around with so many questions, don't I! But it does help make things a little clearer.

So, you DID do the dreaded riba!! I was confused about that. I know "sometimes", for the treatment naive, there are some cases where they "might" skip the riba, but generally, it seems riba is almost always added to the Technivie regime.

I have wondered in the past, if just the Technivie (alone), generally, holds more potential for "sides" when on treatment with it, but regardless, you may have well encountered some of the "sides" people can get while on treatment just because of the riba. Often, the side effects of riba can, in some cases, take quite some time to dissapate. This is why I would say "it is still early days".

How DID you feel while on the drugs?? Do you think you experienced any of the "commonly complained about" sides that people attribute to riba?? Oral issues have come up with riba. I was just hoping that (maybe) in part, your oral issues may also be associated with riba, and/or the aftermath in recovery from the riba treatment. I am still hoping you will see some kind of "bodily" improvements the longer you are away from the treatment drugs and the riba. I wonder if the just the aftermath of riba alone can be accounting for "some" of how you are feeling right now. Anemia associated effects from riba can play havoc with a body, it can take time to recover from these effects, as far as fatigue, etc.

That was exactly what I was wondering about ... the ANA testing (and cryoglobulin testing and the like). I am very curious to know if your LFT's normalized, as a result of the successful HCV treatment, and have remained normalized. Or, if your LFT's/enzymes/bili might increase again in future due to AIH. I am wondering what your doc(s) plans for you are, as far as "doing" something about the AIH. Does a 1+positive ANA and an elevated IgG (pre-HCV treatment) make for an unequivocal definitively confirmed state of AIH requiring treatment? I just don't know! What were your EOT+12 week LFT's and bloods?

You kindly wrote down your Jan 2016 fibroscan results as a "3" for fibrosis - do you happen to know what your kilopascal number is (kPa)?? Fibroscan F-scores are based on the kPa number, i.e. F3, roughly, is up to about 12.5 kPa.

http://hepcbc.ca/tests/non-invasive-tests/fibroscan/

I hope you will be offered more ultrasounds and fibroscans going forward, but I am sure you are getting good sounding care and that they will be following you well.

Hang in there, prep for your appointment with your data and questions, that is all you can do. I hope you get a lessening of some of these symptoms over time, in the meanwhile be VERY glad, REJOICE in that you have successfully killed the virus. The rest, you know, you will just have to address it, thoroughly and methodically, ONE STEP AT A TIME. Keep us posted how things are progressing. C.

Trudylookinglass · Member

Hi C

Thanks for the well wishes & excellent questions; I will add them to my list!

my tx was a 12wk drug trial: Technivie & Moderiba

I do not have a copy of my pre-thx land (will get next visit).

I do know that my RNAs for HCV were in the millions and every few wks I watched them (saw lab results), where they dropped continuously to 0 and have remained 0 after 23wks

My pre tx labs range from minor spikes in AST/ALTS to completly normal values during my first pregnancy (The body's way of protecting the fetus/unborn child). Post pregnancy they elevated but during my second pregnancy they stayed slightly elevated.

pre labs: Jun'99

MCH 32.2 HI(27-32)

most recent Pre-Tx lab I have:

Jan '14

AST 130 HI

ALT 158 HI

As far as the AIH

Aug'16

1+ ANA

Elevated IgG

Dx Autoimmune Hepatitis

Feb '00 (Biopsy)

Cirrhosis -0

Fibrosis-0-1

Jan'16 (fibroscan)

Cirrhosis- 0

Fibrosis- 3

when in treatment i saw my file which said 'borderline cirrhosis'

I am in fact NOT cirrhotic (as far as I know)

i hope these values will help others. You never know the meaning of fatigue until you have it- and then when you do have energy - you certainly make the most of that time catching up.

Nap time for me!

Canuck · Guru

Hi Trudy,

Sorry for your troubles. You are having quite a time of it. I do very much commiserate for you, in how you are feeling, and not being able to know the hows and why's of it all. On the bright side, you HAVE just won a HUGE battle and decimated that HCV out of your body!! yay, it is just too bad about this part, what you are going through right now. I hear you, about being concerned about the now, and the future - it is still early days yet, and, I am betting all will turn out well for you.

I guess you are about to have your EOT+24 week VL and bloods drawn? Please do keep us posted on ALL.

I am quite curious to know what ALL your OTHER labs have been, pre-treatment and throughout treatment, and now. Like your pre-treatment ALT's, AST's, bilirubin's, and what exact testing(s) they did on you (just before treatment you said) that confirmed to them that you definitely had AIH. I would be interested to know which specific lab tests/results were done to gauge your "degree" of auto-immune problems, or the diagnosis of AIH itself. Do the docs see any subsequent rise in your LFT's which they account to AIH?

Auto-immune things (I find) are extremely hard subject material to learn/comprehend. From my limited reading (which always leaves me boggled) it seems it is a hard (and SO broad) a subject for the docs to work with too!

I can't really help you with specific info (I wish I could). All I can do is wonder "out-loud" and maybe present questions you have not already thought of, that you might want answers for from your docs about your current situ.

First, I just wanted to back-up and clarify something, you DID NOT do riba with your Technivie, right?? And, you said you found out you were positive for HCV back in 1993, so prior to this recent successful therapy on Technivie, you had not failed any other HCV treatment prior right?

You mentioned something about cirrhosis, do you have any idea what your F scores might have been (historically, since 1993) or any pre-treatment F- scoring to compare to post-treatment going forward. I don't think you spoke of liver biopsies or ultrasound, or fibroscans.

All I know is that there CAN BE many extra-hepatic manifestation problems (from and including cryglobulin issues, lichen as you mentioned, to many auto-immune issues) all strongly associated with just having HCV.

It is my sincere hope that many of your symptom may decrease, just as a result of curing your HCV. And, it is good to know AIH can be treated as required as well.

That was a good link Tig provided.

Do ask your docs lots of questions, and be bouyed knowing you can look forward to your next HCV SVR! You did the right thing getting rid of the virus. Please keep us posted what you find out next. biggrin C.

Trudylookinglass · Member

Thanks for the link Tig.

I just emailed a slew of questions to liver.ca so that I can best be prepared when I see my liver specialist.

your support is greatly appreciated!!!!

Trudy

Tig · Admin

Hi Trudy,

Congrats on finishing treatment! You did it, SVR, that's fabulous. Now lets get you back on track.

Unfortunately the AIH may be responsible for some of your pain and difficulty. Now we have people here that had some post tx aches and pains in their feet. It made it very hard to walk for them. The good news is it diminishes in time, at least for the majority. I would want more answers about the AIH and how your doctor plans to handle it.

Take it easy and don't force anything yet. It took years and decades for this to disease to damage some vital internal real estate. Don't expect a miracle, just treat yourself as well as possible and let the healing process work it's magic. I hope it happens for you soon. Be sure to let your doctor know if it's too uncomfortable to function. Don't settle for misery! They can do something to help you get some relief.

Here's a link to an article, it's a good read. Autoimmune Hepatitis

Trudylookinglass · Member

Hello all

i am approx 20 weeks post treatment. at my 12 week visit, I was RCV negative; the news in itself was miracle-like.

unfortunately, I have never felt as unhealthy as I do now.

apart from general fatigue, lack of appetite, arthralgia & interrupted sleep, I have developed an autoimmune condition called oral lichen planus - subtype erosive oral LP.

Oral LP is not curable and treatment is not very successful in the long run-since it is uncommon, very little is known about it. uncommon= minimal if any research.i have painful sores on the top & underside of my tongue & inner cheeks. Its kind of like having a mouth full of cancer sores.... that stay for months

My diet has become bland and extremely limited (no spicy fiood,Alcohol, tobbaco, caffeine, sugar or crunchy food) and I have been losing weight. I am taking vitamins to supplemen my diet, coconut oil pulls... I'll try anything at this point

At my 12 weeks PT appoin, I felt (basically) fine (as I had been previously to treatment )Now 20 weeks PT, things have dramatically declined.

is this common after treatment?

Perhaps my Autoimmune Hepatitis was activated with the drugs used for treatment?

This is worrisome as I have two teens and am going back to school in September; I'm now wondering if If I will be wrll enough to handle a 2 yr f/t program.

Jan 12, 2017 I have my 24wk PT appoint (Last one!). I have a lot of questions for the nurse and I suspect I will be making an appointment with my liver specialist.

Any ideas, thoughts, similar experiences, advise would be much appreciated.

Happiness & HEALTH to all!

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