Aa
weird stuff happening
Hi, I've got some weird stuff happening of late.
Recap: Dx 1999 when my lft's were alt 1067 & ast 464. Biopsy F1.
Went on Combo Interfern/Ribavirin. My underlying neurological
disease forced me to quit treatment after a week and a half. Since
then my lft's have been really good, within the normal range.
Fastforward to July, alt in the 300's, a week later 168. Made an
appt with liver dr. for Aug.8th. He decided to do a Fibrospect II to
see if I'd advanced in fibrosis.
Last Sunday I was painting and when I finished I went into shower. I
was shocked when I saw myself in the mirror. All the veins in my
left arm, shoulder and breast were really dark and close to the
surface. It looked as if someone hand drawn them with a dark blue
magic marker. It was really freaky so I went to the ER. They ran my
bloodwork and said my lft's were alt 538 ast 273. The also said my
Fibrospect II was 67. But didn't know why the blood vessels were so
dialated. The did a doppler to see if I had a blockage in my neck or
arm, I didn't. They referred me to my liver dr.
I saw my liver dr. on Tuesday. He said the fibrosis had advanced,
how much he wasn't sure, but that since I can't go on interferon
because of my neurological problems and he can't put me in a trial
for the same reason, he wanted to try me on Ribavirin by itself.
Hopefully, that will lower the lft's and slow the fibrosis.
So I've been on 1000 mg Ribavirin for two days now.
My question, anyone have the weird blood vessels? I never did get an
answer as to what that was all about.
Also, now my fingers have little bumps all over them. Could that be
from the Ribavirin?
Thanks in advance
Jen
Recap: Dx 1999 when my lft's were alt 1067 & ast 464. Biopsy F1.
Went on Combo Interfern/Ribavirin. My underlying neurological
disease forced me to quit treatment after a week and a half. Since
then my lft's have been really good, within the normal range.
Fastforward to July, alt in the 300's, a week later 168. Made an
appt with liver dr. for Aug.8th. He decided to do a Fibrospect II to
see if I'd advanced in fibrosis.
Last Sunday I was painting and when I finished I went into shower. I
was shocked when I saw myself in the mirror. All the veins in my
left arm, shoulder and breast were really dark and close to the
surface. It looked as if someone hand drawn them with a dark blue
magic marker. It was really freaky so I went to the ER. They ran my
bloodwork and said my lft's were alt 538 ast 273. The also said my
Fibrospect II was 67. But didn't know why the blood vessels were so
dialated. The did a doppler to see if I had a blockage in my neck or
arm, I didn't. They referred me to my liver dr.
I saw my liver dr. on Tuesday. He said the fibrosis had advanced,
how much he wasn't sure, but that since I can't go on interferon
because of my neurological problems and he can't put me in a trial
for the same reason, he wanted to try me on Ribavirin by itself.
Hopefully, that will lower the lft's and slow the fibrosis.
So I've been on 1000 mg Ribavirin for two days now.
My question, anyone have the weird blood vessels? I never did get an
answer as to what that was all about.
Also, now my fingers have little bumps all over them. Could that be
from the Ribavirin?
Thanks in advance
Jen
Riba monotherapy was tried in the 90s. It lowers enzymes but does sod all to HCV, bit like milk thistle.
How you been anyway.
I tossed up between getting a PT cruiser and a Wrangler, chose the Wrangler, but maybe got a little more in common than just 3a and the Ramones
CS
How you been anyway.
I tossed up between getting a PT cruiser and a Wrangler, chose the Wrangler, but maybe got a little more in common than just 3a and the Ramones
CS
"The limitation of (Fibrospect II) is its decreased sensitivity and specificity in the middle of the test's reporting range between scores of 0.42 and 0.80."
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2893.2006.00743.x
-------------------------
Sounds like your score of ".67" is smack in the middle of the tests "limitation" range.
Also, can you get an accurate score while you're on the treatment drugs? I know with the "Fibrosure" test, you cannot. Maybe Fibrospect is different. But again, it seems reckless to me to start on an unorthodox anti-fibrotic regimen like ribavirin monothreapy, without : (1) making sure you acutally have advanced fibrosis; and (2) you get another opinion on whether ribavirin monotherapy is the way to go, even if you have advanced fibrosis. But, first, I'd establish the level of fibrosis with either needle biopsy or Fibroscan, unless you have some very obvious markers of advanced liver disease such as extremely low platetels (off the drugs), size of spleen, etc.
-- Jim
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2893.2006.00743.x
-------------------------
Sounds like your score of ".67" is smack in the middle of the tests "limitation" range.
Also, can you get an accurate score while you're on the treatment drugs? I know with the "Fibrosure" test, you cannot. Maybe Fibrospect is different. But again, it seems reckless to me to start on an unorthodox anti-fibrotic regimen like ribavirin monothreapy, without : (1) making sure you acutally have advanced fibrosis; and (2) you get another opinion on whether ribavirin monotherapy is the way to go, even if you have advanced fibrosis. But, first, I'd establish the level of fibrosis with either needle biopsy or Fibroscan, unless you have some very obvious markers of advanced liver disease such as extremely low platetels (off the drugs), size of spleen, etc.
-- Jim
Doc said the fibrospect II was real accurate if F0 to F1. After that is loses is accuracy, but based on my elevated lft's and and the score of 67 on the fibrospect he is fairly certain it has progressed. The fibroscan is an interesting option, better than a stick with a big needle. I'll check into it. Thanks.
Before I'd start ribavirin, or any anti-fibrotic therapy, first I'd want to make sure my fibrosis has actually advanced. On what basis has your doctor decided your fibrosis has advanced from F1? Fibrospect alone, wouldn't do it for me. Why not have another biopsy, or at least a Fibroscan before treating something (advancing fibrosis) that you may not have? Biopsy would be my first choice in your case but Fibroscan may be available through an MD/researcher located in CA who used to post here. If you address a post to "Forseegood", she might be able to put you in touch.
All the best,
-- Jim
All the best,
-- Jim
And looking at that picture - that's what my stomach and breasts have always looked like... I'm very fair skinned. --- also on the inside wrist areas.
Meki
Meki
Are you serious?
I didn't know that guys... I've never heard of just riba monotherapy. I was always told to NEVER take the riba alone.
Interesting.
Meki
I didn't know that guys... I've never heard of just riba monotherapy. I was always told to NEVER take the riba alone.
Interesting.
Meki
It sounds like your doc is up on the latest research. Ribavirin monbotherapy has shown a propensity to slow fibrosis.
Dilated abdominal veins which can become very visible due to enlargement can be an attribute of portal hypertension., as mentioned above. Usually when the portal hypertension has progressed that far it would not be unusual for this symptom to be accompanied by ascites, or collection of fluid in the abdominal cavity. Keep pressing forward with the docs. Did you do anything to modify your lifestyle since you were first diagnosed ?
Best of luck to you and keep us posted.
Mr Liver
Dilated abdominal veins which can become very visible due to enlargement can be an attribute of portal hypertension., as mentioned above. Usually when the portal hypertension has progressed that far it would not be unusual for this symptom to be accompanied by ascites, or collection of fluid in the abdominal cavity. Keep pressing forward with the docs. Did you do anything to modify your lifestyle since you were first diagnosed ?
Best of luck to you and keep us posted.
Mr Liver
The link to the picture is exactly what I have. So it is portal hypertension?
Ribavirin is also used for SARS and viral hemorrhagic fevers. My liver dr. is just stumped by what might be causing my sudden problems, and the advancement of the disease when we thought it was stable. He is one of the best around for serious liver conditions. http://www.scripps.org/Doctors.aspx?ID=562
I have all the faith in the world in him. I guess my problem is that I put the HepC aside (in my mind) and kind of forgot I had it. My neurological disease seemed like a bigger problem so I just focused on it. Now all of a sudden I have another major medical problem to worry about.
When I did the Combo therapy in 2000 it brought my neurological disease out full force. After a week and a half of treatment I lost the ability to speak and could barely walk, and only for really short distances. I was actually in a wheel chair for a while. It took about 6 months for the affects to wear off, and even then I was left with serious deficits that exist today. So interferon is out of the question. And because of my ALS diagnosis, I won't be admitted into any trials.
I guess I just have to hope the Ribavirin does some good because that seems to be the only drug that is safe for me to take. Hopefully, down the road they'll come up with something else in the line of treatments.
Ribavirin is also used for SARS and viral hemorrhagic fevers. My liver dr. is just stumped by what might be causing my sudden problems, and the advancement of the disease when we thought it was stable. He is one of the best around for serious liver conditions. http://www.scripps.org/Doctors.aspx?ID=562
I have all the faith in the world in him. I guess my problem is that I put the HepC aside (in my mind) and kind of forgot I had it. My neurological disease seemed like a bigger problem so I just focused on it. Now all of a sudden I have another major medical problem to worry about.
When I did the Combo therapy in 2000 it brought my neurological disease out full force. After a week and a half of treatment I lost the ability to speak and could barely walk, and only for really short distances. I was actually in a wheel chair for a while. It took about 6 months for the affects to wear off, and even then I was left with serious deficits that exist today. So interferon is out of the question. And because of my ALS diagnosis, I won't be admitted into any trials.
I guess I just have to hope the Ribavirin does some good because that seems to be the only drug that is safe for me to take. Hopefully, down the road they'll come up with something else in the line of treatments.
i've had so much weird stuff over the years...and yes veins all over my chest and down my arms at times that looked like i should get checked out but never did and they went back to normal...i find there seems to always be something wrong like the virus travels from one thing to the other...it's easy to say were hypochondriacs but i'm not too sure about that...could be screwed up glucose to the brain creating anxiety..which in turn cause weird sx...anyway i'm looking forward to new tx in a few years so i can maybe get rid of this virus...good luck...billy
How advanced is your liver disease? It's common to have visible veins (I had them pre-transplant) from portal hypertension, as it becomes difficult to blood to flow through the liver.
[image]http://i15.tinypic.com/4pjfc55.jpg[/image]
[image]http://i15.tinypic.com/4pjfc55.jpg[/image]
Geez, I've NEVER heard of anyone using just Riba. As far as I know it is pretty useless for anything other than Hep C and ONLY then in conjunction with Interferon. Sound pretty dang odd to me.
I've heard of people doing mono-therapy with the just the interferon but NEVER with just the Riba. I'd get a second opinion dear.
Mouse
I've heard of people doing mono-therapy with the just the interferon but NEVER with just the Riba. I'd get a second opinion dear.
Mouse
"he wanted to try me on Ribavirin by itself. "
Get a new doc.
LMAO!
That's insane.
I don't know what reason specifically he gave you for not doing INF -- but doing Riba... - but - that's crazy.
Here's hoping you feel tons better.
Nope on the blue veins (except in the breast area --- always had those... LOL!)
Meki
Get a new doc.
LMAO!
That's insane.
I don't know what reason specifically he gave you for not doing INF -- but doing Riba... - but - that's crazy.
Here's hoping you feel tons better.
Nope on the blue veins (except in the breast area --- always had those... LOL!)
Meki
Go to copegus.com. That will take you to the rocheusa (maker of ribavirin) page for their ribavirin (Copegus) product. Click on the link for 'prescribing information'. Read the first paragraph. Then call a doctor who has a clue.
You should consider a second opinion. Ribavirin, in the absence of a interferon, is not known to be effective. What variety of liver doc do you have?
I doubt ribavirin on its own could be of benefit. if you cant take interferon, i think you could try milk thistle. it could reduce your liver enzyme levels.
you might also try the alternate type of interferon, eg if you tried Pegasys earlier, try Peg-INTRON now, or if you tried peg-intron earlier, you can try Pegasys now. both have different side effects.
you might also try the alternate type of interferon, eg if you tried Pegasys earlier, try Peg-INTRON now, or if you tried peg-intron earlier, you can try Pegasys now. both have different side effects.
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