open post for everyone

[Dale_Ray]

How is everyone doing today?

[doll face]

Hi everyone, just wanted to post and let you know that my tests results are in. My hep is NOT back. However I do have autoimmune disease now as a result of being so anemic on tx. Now that I can have a big sigh of relief that the hep is dead, gone, finished. I can move on to control these new problems. Thanks for all your support and keep fighting. We can and will beat this hep c dragon.

[Fisheress]

Thats a loaded question! Gonna be a whiney butt this morn......  Yesterday was not a good day. Felt weak, rt arm and leg hurt, nausea, headache.... just crappy.  Have not made it to work at all this week.  Rog threw open the bedroom curtains yesterday morn, I jumped out of bed, had my one cup of coffee thinking this was gonna be a good day, showered, makeup, breakfast, meds and hit the road to run errands and go to the office.  Within 45 mins I was turned around and headed back home running for the bed.  Not sure if I should try again today.  Tummy feels a lil better although still have a bad headache which I have not experienced at all during tx.  Did not sleep at all last night, I took Tramadol for the pain at bedtime and that did not help with headache or muscle or joint pain.  At 3:am took took 2- 5mg Lorazpam, still could not sleep.  I know I am going to be dead on my feet today.  Afraid to eat this morn and take meds cause don't want to feel that bad again but know I HAVE TO. My eyes site  went to **** REAL FAST and now have to wear prescription glasses.  I find some days my vision is worse than others.  This could be due to dry eyes to which I also have drops for.  God my cabinet looks like a pharmacy!
Here I am at the 1/2 mark and my positive attitude is diminishing.  Sides have been minimal until now.  Question...the longer on tx, the more sides?  I can never figure out if what I feeling is sx's or not!  Is the headach a sinus infection coming on or is it my vision?  Is the tummy nausea from eating, not eating or from the meds?  How does one explain the sleeplessness? I kinda snapped at Rog this morning and he looked at me like I had two heads!

OK...whoa is me.  Sorry, i know there are many others in a tougher situation than me and my heart totally goes out to spritwalker and others than have it a whole lot worse.  I do read all the post and just not really as good as the rest of you expressing myself or giving advice. OK I am rambeling...... guess I will head back to bed and try to snap out of this funk I am in.  Just all of a sudden it hit me that I still have 24 more weeks to go, 1st half has not been bad but now the sx's are getting worse and I just HATING THIS!

Hope everyone has a good day, don't mean to bring anyone down...

Fisheress :(

[Fisheress]

Congrats on beating the Hep C!!!  Hope I am as lucky!  Wanted to ask because I see it mentioned on here alot, what is autoimmune disease?

[NYgirl]

You know that the sides change and come and go all during tx....they never seem to stay the same with me for very long.

Are you at all anemic? I'd think they could prescribe something better for the pain - and also something to help you sleep, right?

Valium is a good thing but not really a painkiller and Tramadol...why not find out if you can go on something stronger to help with the pains?  Can't he prescribe a narcotic on an as needed basis? I mean that IS why they invented them right?

I'm sorry my friend that you are feeling so bad. Hang in there. go to the doctors and get these things ATTENTION. I mean really you don't deserve to be in all of these problems on top of the tx.

I've ALWAYS had horrible eye site.....I can tell you it must be something else to have it happen out of nowhere all of a sudden. My god. Enough is ENOUGH!

[Fisheress]

HGB...HBG??? has been holding steady at 12.5.  Right now I am feeling really flushed and faint, don't think I can sit here any longer.  I go to clinic tomorrow for 24 week PCR but if I still fell like this will have to have someone drive me.  Suppose to go to my best friends wedding on Sat.  Now don't know if I can make it like this!  This really bites and I really don't feel good.  Is this what a drop in HBG feels like?

[can-do-man]

Sorry your feeling bad, this link tells you about autoimune


http://bccc.pair.com/autoimmu.htm

[Califia]

Doll, really glad to hear you're still clear.  If it's not too much of an imposition, would you mind describing more specifically the autoimmune condition(s) your doc thinks you're dealing with in the aftermath?   I, too, am trying to figure out my current physical state and all data, random or otherwise, is truly helpful.

Fish, tx surely can be rough and unpredictable.  Everyone's experience is so unique that it's hard to generalize as to what is usual and what isn't in our own little mortgaged corner of hell.  But I wanted to share some good news in the hopes that you and others will keep your eyes on the prize, however bad it gets:   an all-clear at 6-months post for another geno 1b, dx'd 1990, fibrosis staged between 2 and 3 by one pathologist, stage 3 by another; treated 60 weeks w/ Pegasys and Riba.   The stuff turns us upside down and inside out, but here's more proof that it can work.

[Tallblonde]

Congratulations on reaching this important milestone.  You've sure earned it!  I know you've had a rough time post-tx, so I hope these latest PCR results uplift you and give you hope that you will indeed have a normal life in the not-to-distant future.  I'm sure the hours and days can drag by when you're not feeling well, but they will eventually dissolve into a much less significant blip on the screen when you're someday looking back on this period in your life.  Hang in there.

Susan

[Bill1954]

Well hi there, been a long time, huh?  Regrettably, I never gave you a proper at-a-girl for completing treatment; I saw you sliding this 6 month news in and just had to congratulate you for an excellent job well done. I

[friole]

I'm feeling pretty ratty today too.  This is the first day I have taken off work in the 7 months I have been treating.  I think it is a touch of the flu -wanted to throw up this morning, but nothing in my system- hubby and grandson were sick yesterday -- but mostly I have just been exhausted.  That extra 4 hours of sleep this morning was remarkable. Guess I need to start going to bed at 8:00. LOL--sitting here in my bathrobe at 11:40 just seems sinful.

Fish - sorry you have been feeling so bad.  I can't imagine how it feels to not be albe to sleep on top of all the other sides.  I guess I am fortunate there in that I sure can sleep.

Dollface - I am glad you don't have hep C, but take care on the autoimmune disease.  Here is another link - (Can-do - your link was great if you were a collie).

http://www.aarda.org/women.html

Looks like autoimmue disease covers many many things - like a catch-all for all autimmue problems.  My sister-in-law had autoimmune hepatitis and it was really scary.  It took a long time to diagnose, and she didn't get the care she needed until she was referred to a hepatologist.  Two years on steroid treatments, and she seems to be out of the woods.

[spiritwalkin]

Can't speak for everyone else. But we're o.k. As both my wife and self are disabled you'd think we'd have something negative to say. And although we're 2400 miles apart, our spirits are one with JOY. A New day is chance for New Hope. How are you today ? What's on or off your mind?

[cuteus]

dollface, well? did you call him a jerk? That is it! hepc is out for good! yes!!!

Cali, you get one big thumbs up for successfully  completing the program also!


so, it looks like our femininity predisposes us to more autoimmune conditions! just great! and the changes we go through because we are females, increase the risk even more!
It looks like many of us can have a genetic disposition to develop conditions like thyroidism, diabetes, arthritis, etc. And I guess, the environment(meds, chemicals, stress, etc) triggers  some into action.  It is definetely a good idea to get a baseline before tx, especially if it runs in the family. My family has diabetes, asthma, thyroid, CA and cardiac conditions. So, autoimmune conditions have tried their hand with me, prior to tx. Was it HCV? my  last pregnancy (at age 36)? Age? gender?
all of the above, it seems.
TG nothing new developed during tx, in spite of the familial HX in my case.
Some drs do check for the HLA antigen, mine checked me for HLA B27 and it was negative, but maybe others might have been positive.
For me, the fear was loosing thyroid function, but I still wanted to rid myself of HCV, and took a chance.  
I wonder if anemia might also contribute in triggering autoimmune conditions as suggested above?  
many things to consider, including living with a negative outcome.
well, congratulations again, to the SVR club members!

[GoofyDad]

F & F: Sorry you guys are feeling rough. I had a stomach bug last week. On top of it's obvious outward (or maybe rear-ward would be more descriptive) symptoms, that bug took all the remaining wind from my sails. I felt like 'This is it, I've hit the wall'. Well, it has passed and I've rebounded. I think maybe we're running so low on our reserves (energy, boodcounts, etc) that a little bug can totaly sink the ship. Hopefully you guys will both feel better soon.

Doll-face: Mind shedding some light on your level of anemia and it's duration? Long term implications of anemia is a concern of mine, too.

[Forseegood]

Just wanted to say so sorry for Fisheress and everyone that is having sides, hope they get better soon...Cali, guess I already threw my congrats in the other thread but I'll do it again...(I know they will resolve for the most part...)

Dollface, so good to see you and so glad to hear youre clear, ditto about the post treatment thing...

Cuteus...just curious, you did mention that some of these things were an issue for you...how long did it take for some of these things to resolve for you? hopefully, not long...

[bodellen]

Well I just found out some of the results from my BX...I had to pry it out of the nurse  ,which is a bit odd since they tell me all of my results over the phone,now yhey say I need to go in and he will discuse it then ..now my not being the sit around and waite kind of gal,,I ask the same ? different ways till I got this...stage 2-3 fibrosis, hep c geno 1a viral load 7000 and smoth actin antibodies elevated to 70 somthing? enzymes change with the wind I,m not really sure after the hemeroage and surgery..so now that having been said,does anybody have a clue what it means or what I might be expecting????

thank you....HAVE A SUPER DAY  :)

[cuteus]

you know, I have been going to rheumatologists since shortly after my daughter's birth, she is now 16, and they theorized anything from Lupus to Sjogren's. No one had a true answer until the rheumy who discovered the hep c. SHe probably thought that was it, and it would get resolved. Not sure what is at work, I thought it was the pregnancy that triggered something, until my mom reminded me I had blood products post partum, was that when I got HCV? or 20+ yrs ago in California? My symptoms started after the delivery, so, I don't know. I have had bilateral Carpal tunnel, sciatica, shoulder bursitis and elbow pain, some finger joint pain also. Things post SVR are a tad better than pre tx, but most of the stuff is still there, low key most of the times, except the sciatica. I have read here of folks with joint pain pre tx that got entirely well post tx and was hoping to be one of them. Oh well! at least I got rid of HCV if not the joint pain! I'll take that anytime!
still testing the water, aren't ya? you don't even have your swimsuit on?

[Forseegood]

ha! Imagine my surprise if you got it in California! wink wink...who cares, you got rid of it and that's the best thing, thank God! wow, sciatica huh? (who knows how to spell that, certainly not me...) I hope you get some relief from it, my friends that have it say it flares up and diminshes...I've read that they are doing things in pain clinics where soon they will be able to trick the nerves into not feeling the pain, hope that comes sooner than later for ya!...

you don't wanna see me in a swimsuit, I gained 10 pounds for the tx! I know, I know, I sound soooo LA, who cares about 10 pounds! (I do, I do...baaaaaaah! I'm such a weenie!)

[Dale_Ray]

Patience is not something I am blessed with but usually when my doctor gets in a hurry to see me or get blood work then I worry. My doctor usually is slow and methodical about coming out with the good news but he is always cautious so as not to rain on my parade or so I don't set myself up for disappointment. Others in here understand the numbers more than I but from what your info says your in pretty good shape.

I hope it doesn't stress you to much. It would me. ha! Dale

[cuteus]

it looks like your biopsy uses the Metavir scale http://www.hbvadvocate.org/hepatitis/hepB/HBV_Grade_stage.html

as you can see, you have significant liver damage if at stage 3, and should consider tx if all things are favorable to do so.
your viral load is low, but as you can see, low viremia does not mean little damage.  
check janis7hepc.com for more on biopsy scoring.
I am glad you pushed them for answers! geesh!

[bodellen]

stage 2-3 and moderate damage  so thats kind of scarry and earth shattering news..so what comes next and how are these dissicions based....are there any questions I should ask??? thanks for the janis 7 tip ,

meee

[can-do-man]

Now don't get yourself all upset, Stage 2 is moderate damage, Im a stage 4 so you got along ways to go. First you need to find out what geno type you are. Since your viral load is known then he should know what geno type you are. hopefully your seeing a hepatologist, Hep-c is for the most part a slow moving diease. SO just don't freek out you got time to fiqure out what your next step his, just don't jump in without understanding about all of this. OK And keep a smile on your pretty face.

[bodellen]

geno 1a

[can-do-man]

Sorry, now see your a geno 1a, same as me. It is one of the hardest to beat. But still you got time to fiqure out what your next move is. Tx. should be very much considered with being your stage. I was at stage 4 for at least 3 years before i started tx. Not smart on my part but. Still don't freek out.

[can-do-man]

What type of doctor are you seeing? a GI or a hepatologist?