Hep C Discussion Forum

LM --- Congratulations on being 'normal'.   Yes, a decimal here and a decimal there can make huge difference...whew...what a relief! Happy Thursday indeed!

Thanks PS.  Love the limbo reference!  Your numbers have come down greatly too.  I just started with lower ones.  And let's not forget that fabulous UND!!!!  Keep on doing whatever you're doing because it's working!

Thanks Tig and Canuck-  I had no other details on the Alk Phos result but should get the printout in the mail within the next day or so.  It is annoying that they won't post it online.  As you said Tig, I imagine it's just a typo with the decimal point in the wrong place.

C-We will never tire of Trixie.  She is such a joy in our lives and definitely our "therapy dog".  

And..I'm happy to be in any club with RC

Thanks for all your words of encouragement!

ooh, ooh! ... beauty labs!  

But ya, get clarification on the alk. phos, did she also say in what "unit of measure" it was in? ie. There are dif units of measure (for dif labs/equip/countries) but 4.7 isn't ading up to commonly expressed numbers in IU/L measure (or in other measures used) - so, double check with her that the alk. phos number has (1) been correctly conveyed, and, (2) what unit of measurement it is in, and (3) what the normal reference range for that measure is.

Too bad you don't get actual copies of the labs right away, then you could see at a glance what units of measure your lab uses, and, what the normal reference ranges are. (I am guessing your current alk.phos is probably normal given your prior alk.phos number).

Therapy dog! hee hee. If you don't need Trixie anymore, I'll take her!  C.

PS - you and RC also belong in the A club, you know, striving for instant UNDs, at what, pill number 5?, versus the B club personalities who celebrate even the tiniest movements in the right direction. hee hee ommmmmm

Thanks PS.  I will continue taking the magic pills. "One pill makes you stronger", right?

Thanks for your words of encouragement RC.  LOVE your new avatar!  How wonderful to be able to put a face to your name... and your new liver!!!  I consider myself in great company to be in the slowpoke club with you!!

Hi Lindsey. I know the feeling to get your 4 week results and not see UND in the report. It!s a bummer but your sooooo close, you most likely are UND right now. At 4 weeks I was 469  and thought for sure I would be UND. But for you to drop from the millions to <15 in just 4 weeks is proof that the treatment is working. Some of us just take a little longer to get there. I think us slow pokes have a virus mutation that's just a little bit harder to kill so,it takes just a littlle bit longer. Don't worry you got this one in the bag! Your LFT are great. You still have two months of stomping out the dragon, one pill at a time.Kill the all, kill em, kill em, Kill em RC 

Tig wrote:

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Looky here! We're all going to do some partying!!! I expect a Dragon bone when this is all finished, lol! 

 

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 LM and Tig ... NOW you've done it!!, now everyone and their dog is going to be wanting one of those hats! hee hee

Hey, your doggy is just the cutest little thang BTW, I've aways admired that avatar photo of yours every time it pops up - do you still have him (her)? Nice pic, and even better with him sportin that hat! Very fetching. haha   C.

Haha!  Thank you for the belly laugh, Tig!

C-Thanks for the party hat!  I'm a slow typist too, so no apologies necessary.  No labs yet.  Hopefully tomorrow.

Ah, I see our posts keep crossing in the mail - (I''m a slow typist.) I'll sit tight here and wait patiently for your other bloods.  

Here, put this on, do a little jig and and celebrate the hqppy annihilation of at least 7,639,986 out of your prior VL of 7,640,000 load!!!!!!!!!!!! C.

Y-A-Y!!!!!!!!!!!!!! (like cra-zy)! From 7.64 million ... to <15, in 4 weeks??!! - phht, THAT there, is a GREAT BIG WIN my dear!!! Those are magic pills you are taking! I'm very happy, wish you were!

What were some of the other lab results, did you get any ALT/AST's or anything else?  C.

Hi Lindsay,

It's not uncommon at all and doesn't mean anything. There are lots of people that come back with that result and it isn't anything to be worried about or fear that your treatment isn't working. Please know that the typical sensitivity of these tests is 15 IU/ml but they can still indicate the few stragglers remaining, even though the test can't quantify how many there are. Even though it's disappointing to not get the report you were hoping for, undetected, the fact that you're below the LLOQ (Lowest Level of Quantification) is excellent. Your treatment is working, believe me! I have seen this happen often and it's nothing to worry about. I would go so far as to say, you are most likely undetected today if you had the test done again. Sometimes your doctor will retest at week 6, but these days this result is proof that you're doing fine. I have a friend that was still detected at week 12 and she was devastated. I assured her that she should keep her spirits high because SVR is determined by the EOT +12 viral load and only then. She got ahold of me following that test with the good news that SVR had been achieved. She followed the same path, with each test being <15 but detected. Sometimes it just takes an extra week or two to mop up. 

Congratulations! You're killing it 

Hi Hep2-  Thanks for the words of encouragement.  I do feel as though this month has gone pretty quickly so am hoping that will continue.  I just feel as though good results from this first blood draw will give me the boost I need to soldier on!

I can't honestly say I feel much different because I never had any real symptoms before I started treatment.  I'm still tired a lot but assume that will improve once treatment is over.  Are you noticing a big difference in how you feel?  

What day is your last pill?

Best of luck to you!

HaHa!  Love the drum roll, C!  Thank you!

Thanks Tig!  I definitely will be dancing a jig if it's UND!!

Hope things are improving there for you and yours!

Had an appointment with my NP and my 4-week blood draw yesterday.  Visit went well and hope to get the results early next week.  Fingers crossed and staying positive.

No worries, Lindsay! You’re going to ACE this test. My Magic 8 Ball told me so!

LM,

I'm hearing the sound of a drum roll, er, rather the sound of your train coming into the station for a lab stop! You are almost there! Hooray!

Sorry to hear about your wrist and those screws, ouch! I used those pads on my neck/shoulder crick and they helped for that too.

LM, 

Huh, apologies - what for! What work load! - I'm retired! Nuttin better to do than hang around here my dear. If I did not read and re-read things all the time, it would just go in one side of my head and right out the other. 

These details about health things are well ... too complex (for me anyway) and hard stuff to understnad, let alone recall! BUT, VERY interesting (to me)!

Is the H2 antagonist holding you at once per day, forgot what you said about it last. What do having screws in your wrist feel like? Shudder. How did you break it so good?

It will be a good day on the 28th.  C.

LM,

See our prior discussion about fibrosis - in your "New Member" thread, titled "Re: Hi! New here ...", specifically my post to you on Aug 23 ... 

Those charts there will help you.

(To me) Fscore is always F0, F1, F2, F3, F4 but as there are many dif tests that can end up giving you an Fscore, and they all have their own measuring system, you take that one particular tests result, and then that tests result can usually be "converted" into an Fscore (F0-4).

For example, your "fibrosure" test gives you a fibrosis measurement result of 0.41 (look on the chart) that converts roughly to being the equivilent of being between F1 (.25) and F2 (.50), you are "in between, thus why we would write F1-2 (you are over F1, but not over F2, but are closer to being F2 than F1. 

Acti-test, we already covered in that Aug 23 post (about it being an "activy" measurement, how active/hot/inflammed you are so to speak - the "burn") - again see the post and the charts.

Further when you re-read that Aug 23 post (and open and read all those charts and further links within that post) - you will find further links to read that will help you, everything from "apri" (which is another tool with some limitations when you try to use only it to convert to a Fscore with reliabilty). Open the biopredictive link there as well and read all.

The "fibroscan" test gives you a fibrosis measurement result in Kpa's, that converts to a F0 to F4 Fscore as well.

There are actually quite a few "tests" doc will look at (that give them their best "guesses" at how much fibrosis or liver damage you may have),  ALL your tests, combined, are considered in totality - from liver tissue biopsies to fibroscans to imagings and blood test methods (of which there are quite a few) and many which do also convert into a Fscore scale F0-4.

Each dif kind of fibrosis test can offer info back each in their own dif ways, if you had a biopsy, AND a fibroscan AND a fibrosure, AND an apri, AND an acti test, AND a Fib 4 (and many others) ... and they were ALL coming back HIGH or with HIGH Fscores - that amassed info together would be more reliable than say just an apri alone. C.

Hi LM,

Don't write off the right hand thing, it IS something to watch, no matter what the actual the cause of it is (that is the ques., no?), or what conditions are contributing to be making it to occur - be sure to keep an eye on it, mention it to docs, maybe some work-up on it would be in order, just to rule out anything obvious? Good to be attuned to what is happening in our bodies. Have you tried some good ole ongoing moist heat pak therapy applications to see if you can break it's pain or inflammation cycle? Have you ruled out repetative motion/overuse things that might be aggravating your right hand, modify and see if that helps (as well as TLC heat pak therapy)?

Re: the fibrosis understanding ... sheesh, there is scads to know and read about fibrosis. Right on this site is a lot, tidbits here and there and everywhere, about fibrosis - write "fibrosis" (up in the search function), and you will pull up many various threads on the subject.

Hard to condense a lot of info into a short conversations, but, about resolving fibrosis (lowering of a prior Fscore) ... in short, your ALT levels are perhaps an easy guide as to how and when your liver is in an inflammed state, your ALT usually improves/comes down when you are cured and as you are being cured, as inflammation is part and parcel of having HCV. Increased inflammation IS associated with causing the progression of fibrosis. Conversely, halting the HCV infection and decreasing/stopping the inflammation process in having HCV, is paramount in resolving fibrosis. Healing of a liver, regeneration of healthier liver tissues/regression of fibrosis, can then occur in a better more normal fashion.

SVR resolves the infection, and thusly the HCV related inflammation/fibrosis response situ, and, many people can and do improve/resolve their fibrosis/cirrhosis after SVR. Mallani and others have elaborated on this, and along with the other basic info, which is invaluable, it is pointed out that it is a very good to know where you are at, as best as you are able, the before SVR Fscores and the after SVR Fscores (comparables), to witness any fibrosis improvements and how long that may take. There ARE arguments as to how long repair takes.

I am re-miss in keeping my own bio up to date, I actually had another fibroscan (a 4th) - you had mentioned seeing only the 3 fibroscans in my bio. My 4th fibroscan was mentioned in my thread, but I had not updated that 4th scan info into my bio. Fixed that last night. My 4th fibroscan indicates I have had a VERY marked improvement in my Fscore (down to 4.7!), and this should be re-confirmed/verified when I have my next (5th) fibroscan which comes up again fairly soon.  

There have been a few of us here who have had remarkably FAST and marked reductions in their Fscores post SVR, others not, thus the thought and arguments as to why and how long fibrosis/cirrhosis regression takes. Stands to reasonable assumption that the higher your Fscore, the longer you have had a high Fscores/cirrhosis, the harder, the more scarred, the more compromized your liver has been, the longer regeneration may take and conversely the lower your fibrosis has been (on all counts) the better your chances may be for better or faster resolution outcomes after SVR. Early HCV treatment is good.

The liver is just an amazing wonderous organ, extremely forgiving, given the right conditions. C.

In your gut, what do you think the reason(s) are for the right wrist to be sore? C

Hi C-  Thanks for your assessment of my hand.  My gut says, "get over it and move on!"  It's probably just an age thing!

"Maybe", is the closest I can come to guessing whether they will do a "final" fibrosis test on you - depends. 

In MY book, I think everyone should be well followed, from assessment/during treatment/at EOT, and then for quite some after HCV cure, with all kinds of bloods, not just liver panels and PCR's 12 and 24 weeks after cure. Even if a hep doc cuts you loose 24 weeks post-cure, your family doc should be following you post-HCV.

You have to be own advocate to ensure you are well followed, by whomever is following you.

Some docs do not seem partial to spending the money on people for certain tests, at the best of times. And test costs should be justified, BUT, when it is ME, I want to see things resolving over time, even after I am cured.

If you have had high or higher fibrosis levels, that alone should be enough for any doc to warrant repeat testing to see that those things too are resolving.

If you have had fibrosis levels detected by blood methods only, then ASK for those to be repeated, if they are not repeated. If your fibrosis assessments were based on fibroscans as well, ask for repeat fibroscans as well. You will soon find out whether they are partial to doing them for you at EOT and beyond.

ANY abnomality (associated with when you had HCV) detected by lab or imaging, should be seen to have stabilized/normalized/improved/resolved to everyone's satisfaction.

I had to virtually beg for certain tests to be done, against various doc's spending or justification judgements, and i did not regret asking or pushing for them, and for the most part i got most of them, to some degree.

Only because of my trial, subsequently I was offered a further 5 year participation in "ongoing" following, so i do not have to fight for these repeat fibroscans and certain bloods - and, I am VERY glad to know and see the astounding improvements and resolutions i have experienced in such a short time.

In my book, following is good. Not waste of anyone's time nor money to receive boringly normal test results. Better to know you have stabilized/normalized/improved/resolved something that was altered prior, than to not know if you have. JMO. C.

C-I did have a steroid shot in my left hand before I started treatment.  I had broken my wrist several years ago and had surgery with metal screws implanted.  At the time of the surgery, a tendon was cut and I've never really had full use of my thumb.  That was part of the problem and the doctor also said I had something similar to "trigger finger" in my thumb.  So he tried the steroid shot, which did work for a few months, although the pain seems to be returning.  But I never had an issue with my right hand until this week, which is why I assumed it might be the Epclusa.  It could just be an age thing!  The pain is on the joint at the base of my thumb-same in both hands.  My left hand had extended pain covering the lower part of my palm.  Probably gave you way too much information, but just trying to answer your questions as thoroughly as I can!  Thanks!