Hi Florida guy & Jim. Cute. Kalio, DD et all:
I guess you're correct. I don't sunbathe but the sun here is tough. Even in the fall. It burns & burns forever while driving & BBqing & just walking in madrid. Imagine how it is in Andalucia uffff. The desert...That what they shot spaghetti westerns over here...Is the closest thing to arizona I have ever seen...and with the global warming thing the sahara seems to be creeping up north..
About the moles I guess I thought it was some kind of porfiria (since I read someplace that fidel castros's moles were symptoms of his cyrrosis). Im gonna leave it at that...Just gonna wear a baseball cap and sunglasses to work...
Shoot I don't want to become the typical hypocondriac just yet :-(
Anyway, I gotta say that I always ask here first instead o googlin because of your first hand experience. I bet the docs know about sx in a scientific sort or snobby manner. You guys know better. Unless the doc is an ex HCV patient...
However, my joint & ankle pain started like 2 months ago. I thought it was carphal tunnel syndrome but what about the ankle?
I don't jog or walk or bike often and I'm on my early 40s...Maybe it is to soon for arthritis...is gotta be hcv related...hope it goes away with the IFN
One month to start :-( Countdown to bernardo nieblas'takeoff...
it is stressing
Is gonna be my weirdest xmas yet (the nightmare b4 xmas) Hope you guys can help me thru
saludos and love to all (please keep posting in november)
scubariba
I know now, the guy from Dead like me
xcuse my ignorance but who's manny patinkin?
"Shoot I don't want to become the typical hypocondriac just yet "
Don't worry scuba 'the pain in Spain is nothing you will fein' . Maybe with the references to Many Patinkin we can make this 'Hep C Show Tune Day'
If you are an active person who spends a lot time in that intense Spain sun the spots cold be the results of sun exposure. Seems like I have more spots at the end of summer - probably spend too much time out there with too little sun protection. I see a dermatologist on an almost regular basis and she hasnt't found anything bad, but I always get the lecture anyway. Good to see that you're back.
To put what you quoted in context, here is the very next sentence:
"It is important to remember that the vast majority of people
with hepatitis C never experience these extrahepatic mani-
festations"
-----------------------------------------------
Again, the fact that people with Hep C may have joint pains or other symptons listed doesn't mean they are related to Hep C as some of them are very common in the general population. That's all the link I posted says, so I feel it still timely. It's also consistent with what a couple of hepatologists told me quite recently.
Here's an exerpt from my link above by a health care professional at the Henry Ford Liver Institute:
"...A lot of patients with hepatitis C have joint pain. However, hepatitis C is very common and joint pain is very common so it certainly is not clear that the two are connected...
In most individuals with hepatitis C and joint pain, I
yup, I know what you meant now, sorry I added to the mess too.
so let's see the possible titles:
100 semanas de soledad
el amor en el tiempo de interferon
or Cervantes'
Don Quijote de la niebla
I can see the many possibilities
wait up, jm, joint pains is documented sides of hep c, whether HIS are related to hep c, is a guess, of course.
it was the wrist discomfort that sent me to the rheumy one more time before the hcv dx.
are the pains related to Knowing you have hep c or hep c for sure? not even the dr could answer that one with certainty. Many think that some conditions are imagined because you know you have hep c, but when those show up in people that later are dx, makes for compelling theories.
I never heard of moles related to hep c, though.
Cuteus: wait up, jm, joint pains is documented sides of hep c, whether HIS are related to hep c, is a guess, of course.
----------------
OK. I'll "wait up" till 11 tonight, but then I'm going to sleep :)
What I said was I *doubted* his recent ankle and wrist pains are Hep C related. I didn't say they absolutely weren't. That's my story and I'm sticking to it :) A lot of needless worry about the extrahepatic symptons IMO. That doesn't mean they don't exist.
-- Jim
This fellow says it very well. Maybe because his understanding is my understanding:
http://www.medhelp.org/forums/hepatitis/archive/754.html
Joint pain is a very common extrahepatic manifestation of this disease.
http://72.14.253.104/search?q=cache:4tIRhN9h4MgJ:www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf+joint+pain+extrahepatic+symptom+of+Hep+C+%3F&hl=en&gl=us&ct=clnk&cd=1
an excerpt from the site posted above:
"In a large study of medical workers with hepatitis C it was found that 74% of people with hepatitis C experienced some form of extrahepatic manifestation. Some of the most common symptoms reported include arthralgias (joint pain) 74%, paraesthesias (feeling of numbness and tingling) 17%, myalgias (muscle pain) 15%, pruritus (severe itching) (15%), and sicca syndrome (dryness of the mouth and eyes) 11%"
The info you posted was from 1999, they have learned a tremendous amount about Hep C and extrahepatic manifestations since then.
Hi Scuba,
Yes, Brian Fog speaks many languages. I doubt the problems you mentioned are related to Hep C. Your wife sounds wise as no more than 50% of what you will read here or elsewhere on the net is correct :) Always check with alternate souces, including your doctor, and of course, your wife :)Good luck with treatment.
-- Jim
For some reason my quote got truncated. It may because the thread was stretched too far by the long URL you posted. You might find this web site useful. It takes very long URL's and condenses them. Very useful for posting not only on discussion groups but also for sending emails. Here's the site: http://tinyurl.com/
Anyway, I'm going to try and post the quote again from the Henry Ford Clinic. See what happens:
"...A lot of patients with hep C have joint pain. However, hepatitis C is very common and joint pain is very common so it certainly is not clear that the two are connected...In most indivifuals with hep c and joint pain I'm less convincedthe two are related...
The only issues I have with your comments are: I have met quite a few people with HCV or who had previously had HCV over the past ten years, and in my own subjective assessment, it seems almost all of them complained of some sort of prior chronic, or unusual joint pains over the years. Many had sought medical advice and treatment as well, without much relief.
The other issue, and I do not want to sound cynical here, but: do you really believe that because Henry Ford Medical Center, or even Stanford or Duke, or any other for that matter, shrug at the connection between HCV and joint pain, that this means that their comments are valid or cast in stone? We both have seen and heard lots of 'claptrap' come out of the mouths of specialists over the years, regarding HCV, I believe.
I still think the medical community is several very large steps behind the realities regarding HCV, its consequences to other organs, its full range of symptoms, and as we all know by now, my opinion on their understanding of the full ramifications of interferon therapy. I am not condemning or even criticising them, I just think they have been 'lulled' into a false sense of
'total understanding' of the disease, and its treatment, in many cases.
I won't even bother to repeat some of the 'inane' comments some doctors have made about HCV to me over the years.
One Chief of Otolaryngology at a top institution stated that the only reason I had symptoms from HCV over the years was because I was aware that I had the disease. He said it was all created by my knowledge and my psychological reaction to that knowledge. Now what he did not explain was the twenty years of symptoms I experienced BEFORE I found out I had HCV! I did not bother to even respond to him. I smiled and said thanks...Bye-Bye.
I hope all is well with you Jim, post-tx. I know you have had a number of after therapy issues, as have I, and that it has been a little disappointing. Let's hope that over time we get some relief. I am starting to think that tx may have caused a generalized autoimmune state for me, somewhat like Lupus...that may just be my new, and future reality. I will just have to learn to avoid causing it to flare up too much,I guess. For some of us, I think all the constant interferon trains our immune system to easily go 'nuts', and we have inadvertently created a little 'Pit Bull' within our bodies. The slightest stimuli, and ARGHHHHHHHGRRRHHH, the little dog attacks whatever is in sight!
Be well!
DoubleDose
here's another one.
Plenty more where this came from.
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1572-0241.1999.01087.x?journalCode=ajg
here's another one.
Plenty more where this came from.
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1572-0241.1999.01087.x?journalCode=ajg
"Conclusion. Rheumatological symptoms are common in patients chronically infected with HCV. It is essential to individualize the role of treatment with interferon-alpha and to consider the use of methotrexate for difficult cases"
Hey guy, good to hear from you !
I do believe extrahepatic conditions exist, just feel they tend to be overstated on discussion groups on the net. Not surprising, since we all have/had Hep C, and many of us are in our late 40's and 50's when things naturally start falling apart.
Like yourself, I also think the effects of the treatment drugs -- both short and long term -- are vastly understated by the medical community. For obvious reasons, these symptons are a lot easier to track -- one day you're feeling great, the next day you shoot some Peg and then your life is never quite the same :)
I like your "Pit Bull" Analogy. Down immune system, DOWN. LOL.
As far as what some individual doctors might say on either account, when I'm in the mood for farce, I watch "Saturday Night Live".
Be well.
Jim
sorry, I screwed that up and posted the same link.
here's the right one.
http://rheumatology.oxfordjournals.org/cgi/content/abstract/44/8/1016
I didn't mean Niceguy was a whiner. I meant..shoot I guess I messed up again with mi english. Sorry Mr niceguy...my apologies
I guess Bernardo Niebla is gonna be my friend 4 the next seven months so I better get to know him well ;-)
Maybe I'll write a book about my relationship with him and IFN LOL. I may be the next Garcia Marquez ;-) who knows?
Saludos
scuba
no, chico, he does not whine, just worries a lot. bernardo niebla, huh? that is a good one! who coined it?
hispanic, Fender? got me with that one too!
try to relax a bit, because when you start the meds, many curious things will come your way, but most are not fatal. ;-)
Gracias Cuteus
I didn't wanna sound like a whiner. :-) Sorry If I came across that way... seems I have Bernardo Niebla (Brian Fog in spanish LOL) knocking at my door already and he's speaking tongues :-P.
thanks a lot for the links. I'll check'em up later on.
Saludos y que tengas una buena semana. Una pregunta, Freddie Fender was hispanic?
bye
scuba
ay chico, que pasa? vas a empezar como niceguy? seriously, the wrists and ankle pains COULD be hep c related. there is documented evidence of arthritis-like symptoms and neuropathy in some hep c infected and they don't have to be advanced liver disease. PACIENCIA. You are almost there(tx).
I don't know about the moles, though.
bookmark these sites and when you wonder if anything is hep c related, refer to them for comfort
http://www.hcvadvocate.org/hcsp/articles/Bonkovsky-2.html
http://www.medadvocates.org/diseases/hcv/extrahepatic.html
looks like someone is trying to add another one to the list
http://www.annals.org/cgi/content/full/125/4/345
stay cool
i agree with your wife, the Internet is driving me crazy. I already started examine everything in my body and blame the Hep b for that.