about aches and pains, and autoimmune possibilities

[niceguy2007]

for the past month i've had what seems like muscular back pain on the right side of my back.  it becomes worse when i twist my upper body to the left, sometimes extends to the front too.

also had liver pains for the past 3 months since diagnosis and homeopathic treatment.

for the past 3 or 4 years, i've had a problem with the finger next to the little finger(whats it called, ring finger/?).  it sort of "freezes" up when i wake up in the morning, and when i curl it up, it "locks" in the curled position, and hurts real bad when i free it with my other hand.  however, as the day passes, the hurt goes away, and it doesnt "lock" as bad. sometimes it doesnt "lock" at all.  

also, some of my fingernails are becoming weird for the past 5 months or so...the nailbed skin is kind of "sticking" to the nail...sometimes it gets cut when i cut the nail with a nail clipper, and of course hurts when that happens.  

the palm of my right hand has "tough skin" bands developing that extend from two of my fingers to the wrist..

do these seem like autoimmune issues? cud interferon be dangerous for me?

[Forseegood]

Hi, just what I've found anecdotally on these boards (and from what you say, the docs don't know a heluvalot about this either) it seems it can clear certain people's autoimmune issues up, many have said that...and with a few others it aggravates them...once again, a little bit of a crapshoot...I'm hoping yours will be cleared up!!!!

[pigeonca]

That is the question, isn't it?  Will interferon make an autoimmune condition worse?  That's what my docs are trying to find out prior to my starting tx, and so far nobody seems to know anything.  They all tell me to start and then, should problems arise, deal with them accordingly, whatever that means.  Since the autoimmune stuff might very well be caused by the hcv, tx should make them go away???

[susan400]

Just a delayed post on the schizophrenia issue.  I'm very familiar with the disease.  My son is severely mentally ill.  His current diagnosis is schizoaffective/bipolar type.  It's a form of schizophrenia.  Basically, it means that he cycles like a person who has bipolar, but he's also got the schizophrenic label of schizoaffective.  The thing that is frustrating for family members of the mentally ill is the misconceptions that the general population has about mental illness.  My son can carry on a regular conversation with me.  He has always been intellegent.  When he was living at home with me when he was 15 he knew capitols of every place in the world.  No one that I knew of could 'stump' him.  He always got it right.  But, on the other hand, the part of his brain that is rational, makes decisions, has delusions, etc., was not working right.  He acts in ways that get him into trouble because he doesn't understand how to react in certain environments, situations, etc.  Anyhow, he's had psychotic episodes ever since he was 7 years old.  It's hard to deal with at times because as a mom, you have so many expectations when your child is born.  But, as with Hep C, you come to a place of acceptance of what you're unable to change. What more can you do?.....Pray & Hope, that's all I have.  Susan

[niceguy2007]

ok suppose i have sclero or something autoimmune...
so cud interferon be  dangerous for someone with such a condition? i mean i dont care if it makes the tough skin worse...but i certainly hope not something more serious?

[pigeonca]

I have no problems with my nails.  However, when I saw a rheumatologist regarding my morphea, he scrutinized my fingernails very closely and said that often people with sclero have problems with their nails.

[jmjm530]

Indeed, somewhat academic at this point when you go beyond the clinical implications that seem to suggest "cure". BTW I posted to you below in the diet thread regarding statins, etc, if you can find the thread.

-- Jim

[Lady E]

the palm of my right hand has "tough skin" bands developing that extend from two of my fingers to the wrist..

My husband has those on both palms. Our family doc told him it's a sign of alcoholism. Hubby was a partier in his younger days, but never an alcoholic, and a very light drinker now. It looks like the sinewy lines in his hands might pull his hand closed someday.

I personally think it might be callouses from his lonely days! *wink wink*

[NYgirl]

That sounds like a very big list of things that you are attributing or wondering about there.  

While yes Interferon does cause autoimmune problems - the doctors (here) are very good at looking for them as they come up.  I think the most common is the thyroid problem which I have. They first diagnose that with the blood test for TSH level.

I don't know that all of the other things are generally autoimmune problems although muscular and bone pains and aches are VERY common while on treatment.

[copyman]

LOL, that was funny mikesimone and very warranted. niceguy seems like he is 2 different people. some of his posts are ok then he comes back with these same questions over and over. TO NICEGUY: START THE TREATMENT AND STOP WORRYING !!! if you keep asking these same stupid questions over and over again when you really need help no one is going to take you seriously and you may not get the help you nedd from us.

[jmjm530]

Mike,

Looked over the test. But in all due respect, I think anyone treating or about to treat Hep C (or any chronic disease for that matter) would "flunk" it. But I do know where you're coming from and your stoicism in the face of some meaty health issues does stand you apart. Are you still on lose dose meds and how are things going?

All the best,

Jim

[niceguy2007]

2 different ppl/? well i was on prozac for a few months a few yrs ago...but dont htink i'm schizophrenic ;0

[sfbaygirl]

Two different people would be multiple personality disorder.

I think we all worry about taking interferon and what it could do to our bodies, but what choices do we have? NONE, except not to treat and that really isn't an option for many. I guess I am saying we need to bite the bullet and kill this virus at whatever cost comes along. I don't like the possibilities of all these effects after tx, but I try to stay positive and look at the bright side. I will be rid of this awful virus.

[niceguy2007]

actually.. sfbaygirl,

..if the elastogram MRI machines were available now, i'd advise everyone to get an elastogram reading and then if they were stage 1, they shud wait until they reach stage 2 or so.  cuz research is progresing fast... i really dont like the idea of having lifelong thyroid or bone marrow problems. someone plz tell me these problems come in a minority?

[jmjm530]

LOL. That was a good joke on the schizophrenia. I think what some are trying to say is that you may be obsessing a little too much on your symptons and just have to try and relax a little more.

Easier said than done, however, especially right before you start treating when all sorts of doubts and issues jump into your head. In a few weeks, you'll be a lot more focused on things like on how to walk across the street without fainting :) (Nice, that was a joke although it can happen).

Anyway, if you're going to obscess anywhere, this place is a good as any and certainly you're not the only one who may be seeing Giants instead of Windmills -- it's pretty common with a disease like hep c and many of us do it here all the time.

To me, a lot of the issues you describe could have nothing to do with Hep C, but always a good idea to bring them up with your doctor who is a lot closer at hand.

-- Jim

[mikesimon]

I know I'm an idiot but I read the post and could not stop myself. Every day there's another one of these - I think there is 2 today. I was indoctrinated back in the days of only 6 daily threads and we worked hard to conserve them and we guarded them like a mother does her young. I guess I've got to learn to lighten up. But, some people would test Job to the breaking point, IMHO. I think it was a better board when we only had 6 threads per day but I know we disagree on that and that's okay with me. As for me: I'm still doing baby TX - 90 mcg Pegasys weekly and 200 mg Ribavirin daily. I had another PCR last Monday and it was once again undetectable. I haven't had a detectable PCR since April 2003 and I stopped TX June 2004 and was off all TX until June 2006. Were you surprised I didn't post to the SVR/Cured thread? I bet you weren't. I feel okay considering I'm taking some Pegasys - if a bit perplexed about why I'm taking what I'm taking but, as I've said before, I trust my surgeon so I do what he says. It just gets too complicated for me at times and I just follow orders. I hope you're feeling better and better with each day. Stay well Jim. Mike

[jmjm530]

Last thought.

You seem to have been struggling quite a bit with whether to treat or not for some time now.

As I understand it, biopsy is not available in your country, or perhaps more risky than here?

You appear to have some means -- have you considered traveling to Europe or Japan for either biopsy or a Fibroscan to help with the decision?

The Fibroscan device is now being used in Europe and is similar to the Elastogram you mention in that it's totally non-evasive.

Between the Fibroscan and a number of blood markers, you might be able to get a decent idea of how much liver damage you have.

-- Jim

[Myown]

Hi Niceguy,
My friend has trigger finger and it sounds like what you mentioned.

As far as bx, I didn't have one either. Whether that was a good choice or bad choice, I may never know OR......I may find out some day. But the way hep effected me was, I was depressed, as most are when they find out they have a dreaded disease, then I didn't enjoy food,so dropped a few pounds, that I didn't need to loose.

Of course, I didn't blame the weight lose on consuming less calories, I,,, in my mental maniac state, blamed it on having the "SILENT KILLER," because of all I was reading on the internet,,,and while reading about this disease, I was catching every disease  related to hep and extra heptatic manifestations that came up on my screen.

I attributed it to ....Dell had secretly started a test trial with "scratch and sniff computer screens" and unbeknownst to me, I had one of those screens and germs were invading my home.

I wasn't scratching and sniff'n it, but when I dusted the screen, it had the same affect as scratch'n it.

Now,'' am I kidding you??,, YES of course,,,am I making fun of you?? NO, I am trying to tell you that the mind can make your body sick.

I, too was worried about everything,exactly like you, not that I stopped worrying completely, but NOW I HAVE TO pump myself up, same as a boxer before he gets into the ring. You must also.You can do it!

The boxer can get killed, with one blow to the wrong area of his head or elsewhere....does he focus on that before the fight??? No!!!, HE STARTS TELLING HIMSELF HOW HE IS GOING TO WIN THIS FIGHT.

No matter how strong his opponnet is, HE TELLS HIMSELF, HE will be the one to beat this guy to a pulp!And even if he looses this fight, he then starts preparing to GET HIM THE NEXT TIME.

Try to start TELLING  yourself that you are going to BEAT THIS BEAST. Don't go into the ring with the fear of loosing the fight or the fear of how bad you body is going to feel from the blows. I was doing that 24/7 and I was making myself sick. I changed my attitude and I now feel great physically and mentally. I'll worry about what my opponet does to me as,or if it happens, but remember, we have all these guys on the forum to route us on as we go back to our corner with our bruises.


Wish you the best.  Try real hard to control your thoughts, but if you are still concerned, you're not bothering us when you ask questions and express fears. I know how you feel. Its scary, but lets all slay the dragon.

Again, start to condition you mind for the fight,,,,same as the prize fighter.

You'll be fine.

[Kalio1]

I agree, the elastogram will solve a lot of the mystery about what is really going on in our livers. You are right too about the inherent inaccuracies with biopsies however with multiple samples and guided asistance available nowadays, it is pretty accurate. It carries a risk though and elastogroam would be noninvasive and accurate. Hope that hits the public soon.
try not to worry yourself too much. Stress isn't good for your liver. ;)

[NYgirl]

I agree with you.  It takes too much time to sort out lately what is real and what is not and then answering.  It's as if it doesn't really matter anymore because people are yankin' on your chain so often...it's not worth thinking about.

[pigeonca]

Your finger problem sounds like "Trigger Finger."  Often caused by diabetes, which all of us should be tested for.  The bands of thick skin do indeed sound like an autimmune condition.  I have something similar, morphea, which is cutaneous scleroderma.  It came on at about the same time that my ALT levels went up, which resulted in my hcv diagnosis, although no one will say for certain whether the morphea is caused by the hcv.  You probably need to see the appropriate specialists, but tx all by itself may alleviate these problems.

[sfbaygirl]

Thanks for the definitions. I agree, mental illness is not well understood. Those of us with loved ones who have these illnesses do need to correct these misunderstandings.

[niceguy2007]

jim,

i'm glad u mention that fibroscan is available in europe...though i'm sure if i tell my dad now i'm chickening out of tx he's gonna kill me personally :) j/k..actually fibroscan wasnt available in japan when i was there in july.

about biopsy... the thing is, cirrhosis, or even fibrosis doesnt develop in ur liver evenly... u cud have cirrhosis in a 20 percent percent area on ur liver, and ur biopsy needle cud ***** a stage 0 area...and u'd be thinking u're stage zero.  thats why a whole liver elasticity reading would give a conclusive picture.

how widespread is fibroscan in the US? have u had it yet?  is it under testing, or is it actually in everyday hospital use?

[jmjm530]

You mean the 9/28 thread? No, not suprised. In fact I didn't post either. Like an onion, that question has a lot of layers and not everyone can benefit from it being unraveled too far.

Regarding the change tounlimited threads, I see plusses and minusses, but hey, neither you or I had anything to do with it :) My guess -- and only that -- is that MH was trying to accomodate what appears to be a growing membership. And if my experience is any indicator -- I used to be a partner in a non-health oriented forum -- more members mean more advertising hits, means more revenue for MH, which is a good thing to keep this place afloat.

I hear you about sometimes just letting things over to others. I have a few other health issues but after putting a lot of energy into researching out Hep C, don't have a lot left over for the other stuff. My interim solution is just to avoid doctors :)

I am doing better these days and while progress is slow, it's progress.

Stay well yourself.

-- Jim

[niceguy2007]

pigeonca,

do u also have nailbed skin sticking to ur nails in a weird way?

diabetes and trigger finger? scary.