Aa
many questions-open post
im still fairly new here, not sure if this is the way to do this. with so many people needing help and so many helping each other it seems the threads get buried so fast. I try not to waste threads so when i posted i asked MANY Probably not a good idea since they get lost. I dont want to waste anybody's time but i know people don't go way back down all those threads. so i'm copying random ?'s from my previous posts and hope they will be of help to others also.
does anyone know if high RA factor causes symptoms and does that return to normal with tx. also does cryoglobulemia go away with tx? I mentioned in a previous post that i have narcolepsy are there any others with it. That makes me worried about tx too. I think the hepc made the narc. flare up and im not sure how tx will be if I am already fighting severe fatigue with numerous meds. sorry so many ????
? Have any of you had problems from tx that don't go away. Is there any where to get info on docs. can i assume that if I am seeing a hepatologisbt i can feel Im in good hands or are there some with bad reps?
does anyone know if high RA factor causes symptoms and does that return to normal with tx. also does cryoglobulemia go away with tx? I mentioned in a previous post that i have narcolepsy are there any others with it. That makes me worried about tx too. I think the hepc made the narc. flare up and im not sure how tx will be if I am already fighting severe fatigue with numerous meds. sorry so many ????
? Have any of you had problems from tx that don't go away. Is there any where to get info on docs. can i assume that if I am seeing a hepatologisbt i can feel Im in good hands or are there some with bad reps?
post your questions-by all means..many patients w/ lots of info,personal experience&sympathy..sounds like ya got yourself a v good doc-just find a friend onthe medteam that yu can relate to&call upon when yu need ...AD's will help,perhaps rite NOW!!! this is a tuff trx&a difficult decision,but stress won't help you whatsoever,in fact it mess's w/ our immune system -focus,relax,laugh when atall possible......could the narcolepsy be fatigue from hepc??? goodluck&keep posting
Im wondering if there isn't some new info or study somewhere on starting tx with infergen. I was told by my docs nurse that this is his standard tx.(daily infergen & riba),im worried also because she didn't say at what dose but did say that he is different than other docs in that he treats very aggresivly. Im also not shure if that is his standard for all hepc or just geno 1a. I suposedly have a "world reknown" hepatologist and have been told I'm lucky to have gotten him so does that mean I should go with his insticnts? Dr. David Van Theil anyone hear of him. He does practice in a couple different states I think he has started up liver transplant teams in 5 states and opened a liver/hepatitis clinic here in Milwaukee a couple years ago. But he definatly focuses right in on your liver (and the whole body) hes very thorough but he doesn't see that the patient still has a life outside the clinic. Iam just really torn now about starting tx. id like to just go bac in denial like i have been for the 20 years but i now have sx. I haven't seen anybody talk about prozac for AD for tx. Are the other meds I see here better for tx related depression
my stats so now I am at a point where I have to make a decision about treatment. For some reason Im not dealing well with making this decision, I getting all teary eyed and emotional as I'm writting this and I am not usually a blubbery type person. anyway... on to my info. I am genotype 1a, my viral load was 27,000,000, my hepatologist felt this might be lab error so he ran a different test for viral load, that result read >7,000,000. Fibrospect II test result was index 12 or metavir F0-F1. CT of the abdomen showed moderate prominence of the central biliary ducts but no obstructing process and no hepatic mass. I did have a biopsy done but have not seen my doc yet for interpetation of the results. the test results read - Needle biopsy: 1)Chronic hep. c with moderate portal inflamation, mild piecemeal necrosis and mild to moderate fibrosis, HAI index 8-9/16. 2) Iron stain is negative. My AST and ALT are both normal!.I do have elevated cholesterol and triglicerides and a very high Rheumatoid factor (218).
my stats so now I am at a point where I have to make a decision about treatment. For some reason Im not dealing well with making this decision, I getting all teary eyed and emotional as I'm writting this and I am not usually a blubbery type person. anyway... on to my info. I am genotype 1a, my viral load was 27,000,000, my hepatologist felt this might be lab error so he ran a different test for viral load, that result read >7,000,000. Fibrospect II test result was index 12 or metavir F0-F1. CT of the abdomen showed moderate prominence of the central biliary ducts but no obstructing process and no hepatic mass. I did have a biopsy done but have not seen my doc yet for interpetation of the results. the test results read - Needle biopsy: 1)Chronic hep. c with moderate portal inflamation, mild piecemeal necrosis and mild to moderate fibrosis, HAI index 8-9/16. 2) Iron stain is negative. My AST and ALT are both normal!.I do have elevated cholesterol and triglicerides and a very high Rheumatoid factor (218).
I am glad you reposted your questions, and I think it is perfectly fine if not encouraged to ask more than one in a post! Glad you found use here, but I wish it were under different circumstances! As you can see, we all like to have a lot of fun and keep things light.
About your questions. YES Hep C is associated with high RA factor which is associated with many symptoms consistent with hep symptoms. I know that it CAN resolve on treatment, but it may not. The same goes for the cryo. I know of at least a few people in here who have had that resolve during the course of treatment. I am unsure of how hep c and narcolepsy might be related and do not recall any posts about this since I've been around.
I just stopped treatment last wednesday, so I don't know if I have any unresolved symptoms yet. I do know that your body can take a year or more to recover from treatment. Some people around here DO have lingering side effects from treatment but not all.
Hope that helps a little. Sorry I don't have more personal insight to lend. I have a feeling some people will be along with good links for you!
About your questions. YES Hep C is associated with high RA factor which is associated with many symptoms consistent with hep symptoms. I know that it CAN resolve on treatment, but it may not. The same goes for the cryo. I know of at least a few people in here who have had that resolve during the course of treatment. I am unsure of how hep c and narcolepsy might be related and do not recall any posts about this since I've been around.
I just stopped treatment last wednesday, so I don't know if I have any unresolved symptoms yet. I do know that your body can take a year or more to recover from treatment. Some people around here DO have lingering side effects from treatment but not all.
Hope that helps a little. Sorry I don't have more personal insight to lend. I have a feeling some people will be along with good links for you!
sorry so long and so rambled, thats bits & pieces of other posts. its too bad as people have mentioned before that so many threads are wasted. Not on what people say, I belive everyone's comments are important no matter what subject! but so many threads have only a couple posts on them. the oldtimers here that are trying to help are trying to answer ? for newbies and keep up with friends, it must be getting very difficult to keep scrolling through all the threads. But you sure are doing a great service and your much appreciated by many!
Thanks
Thanks
thanks for the info now and previously about my daughter. still waiting for her results but im not to worried
I think I was posting my response at the same time as you were posting the rest of your questions earlier. I'm sorry this is overwhelming. All of us here can identify with that. It is not easy, lots of info to figure out and digest. I did look for some articles for you, but didn't find anything that was recent enough for my liking. I bet some others will be along with good info! Hang in there. Sending hugs your way!
Go back to the post by willows on Infergen on 5/18. Scroll up to comment C6 - information there about a large daily infergen trial going on right now.
Van Theil is head of liver transplant program at Loyola UH and a national expert on transplants - he was one of Walter Payton's docs and evaluated him for a transplant. Definitely big time liver doc. Does seem to favor the Infergen route but is not an investigator in the Infergen trial in that area.
Wonder why he goes right to the big guns - maybe if all you see are transplants, you figure your not going to mess around with this disease. Definitely an interesting approach but wouldnt you like to try something like Riba/Peg first and see how that goes? Who wants to shoot this stuff every day for a year? I recall doing three times a week and feeling that impossible at times.
I have been treated by some real big time liver docs. I found that their primary focus was on their CV, not on how I was doing personally. IMHO I had one guy that all he talked about was his research - "look me up on the internet" he would say just about every time we met. I looked something up allright - another liver doc. New doc does not have as many research papers but is very committed, active, bright, empathetic, and returns my phone calls quickly. I will trade some credentials for someone who actually remembers my name! LOL
BTW, the study center for Direct Trial in Chicago is here:
University of Illinois at Chicago, Section of Hepatology
Chicago, IL
Investigator: Scott Cotler, MD
Contact Number: (312) 355-3782
Van Theil is head of liver transplant program at Loyola UH and a national expert on transplants - he was one of Walter Payton's docs and evaluated him for a transplant. Definitely big time liver doc. Does seem to favor the Infergen route but is not an investigator in the Infergen trial in that area.
Wonder why he goes right to the big guns - maybe if all you see are transplants, you figure your not going to mess around with this disease. Definitely an interesting approach but wouldnt you like to try something like Riba/Peg first and see how that goes? Who wants to shoot this stuff every day for a year? I recall doing three times a week and feeling that impossible at times.
I have been treated by some real big time liver docs. I found that their primary focus was on their CV, not on how I was doing personally. IMHO I had one guy that all he talked about was his research - "look me up on the internet" he would say just about every time we met. I looked something up allright - another liver doc. New doc does not have as many research papers but is very committed, active, bright, empathetic, and returns my phone calls quickly. I will trade some credentials for someone who actually remembers my name! LOL
BTW, the study center for Direct Trial in Chicago is here:
University of Illinois at Chicago, Section of Hepatology
Chicago, IL
Investigator: Scott Cotler, MD
Contact Number: (312) 355-3782
Hello. My husband has hep c and a high RA factor (49). He has had very bad lower back pain for the last couple of years. He has degenerative disc disease and had two fusions and three carpal tunnel syndrome operations over the last 6 years (he is 48 years old). He found out he had hep c about 8 months ago (and we have been on the hep c train every since...he's a 1b and his sixth shot is next week). So, we don't know whether these things are because of hep c or other reasons. Anyway, it seems to me that his worst symptoms started after he was prescribed Lipitor for high chol. (that is how he found out..ALTs/ASTs went up). They were within range before Lipitor, and since then, have gone up considerably. Also, since that time, his lower back pain is intolerable, got rash on his feet. I know everyone says that hep c cannot lie dormant, but, to tell you the truth, it really seems to me like it did in his case, until he took the Lipitor. Coincidence, maybe, but I still am not convinced. Anyone else feel the same? Thanks for listening...this is a great group!
strange- i also have chronic low back pain & 2 failed spinal fusions in 1980 and 1985. I don't know what they say about hepc being dormant but i've had it since 1980 and I belive I have had some sx. off and on but the last 2 years is a different story. My body seems to be falling apart and I,m sick so often now. My top notch hepatologist just gave me a script for lipitor a couple months ago but I haven't started yet. Just don't want to take any more med. I was diagnosed with metabolic syndrome this last year which includes high cholesterol and trig. and my blood pressure sky rocketed. so I take 2 hypertension drugs. I also belive that the hep c became symptomatic because of stress. 2 years ago both of my inlaws died unexpected within 6 weeks and my sister in another state developed severe mental health issues and it was after dealing with all that when I started getting sick and its been snowballing since then.
Did your husband have other symptoms prior to tx?
Best wishes to you both, your husband is luckey to have your support. Does your husband have to take pain meds for his back?
Did your husband have other symptoms prior to tx?
Best wishes to you both, your husband is luckey to have your support. Does your husband have to take pain meds for his back?
I have had narcolepsy for years.it only caused problems if Id sit for a while without my brain being stimulated. couldn't watch movies, do computer work long but mainly i couldn't drive on expressway (nodded off couple times} I had positive sleep study and have been on provigil every since. then last year developed EDS or excessive daytime sleepiness and boy I never knew there was such a thing. another sx. of narcolepsy. I slept 16 -18 hours a day. I had to or i would fall asleep where ever I was. Had another sleep study,showed narcolepsy was worse I also had a blood test for narc. i cant remeber what its called.so now im on 2 more meds, ritalin (like a stimulant) and xyrem (GHB). They are helping imensly but who knows what im doing to my liver. Its also intresting that i really found a difference between fatigue and sleepiness. narcolepsy is just SLEEPY. The fatigue i get when felling sick is more needing to lie down and not having energy or strength to do normal activities. I wonder if the tx. causes both or more fatigue
It's not unusual for different "top dog" hepatologists to suggest different treatment strategies. Part of being top dog is not following the pack and that sometimes includes other top dogs.
I don't doubt than daily Infergen might increase your odds for successful treatment. But the question you might want to ask yourself, is at what cost?
If you don't have significant liver damage (stage 3 or 4) you might want to consider a less agressive route using pegalayted interferon and ribavirin. In fact, if it turns out you're only stage 0 or 1, you might even consider a watch and wait approach.
If your current doctor won't offer you alternative to consider, then another opinion might be warranted. BTW your two viral load tests -- 27 million and > 7,000,000 are consistent. The difference is that the second test appears only to measure up to 7 million units.
All the best luck!
-- Jim
I don't doubt than daily Infergen might increase your odds for successful treatment. But the question you might want to ask yourself, is at what cost?
If you don't have significant liver damage (stage 3 or 4) you might want to consider a less agressive route using pegalayted interferon and ribavirin. In fact, if it turns out you're only stage 0 or 1, you might even consider a watch and wait approach.
If your current doctor won't offer you alternative to consider, then another opinion might be warranted. BTW your two viral load tests -- 27 million and > 7,000,000 are consistent. The difference is that the second test appears only to measure up to 7 million units.
All the best luck!
-- Jim
Yes, a statin like Lipitor potentially can raise your liver enzymes. In fact, my liver specialist advised me not to go on a statin until after treatment was finished. I
f you haven't already, I suggest you consult with a liver specialist (hepatologist) and a cardiologist -- and together come up with a collective strategy that weighs the risk of taking Lipitor during treatment against the risk of not.
-- Jim
f you haven't already, I suggest you consult with a liver specialist (hepatologist) and a cardiologist -- and together come up with a collective strategy that weighs the risk of taking Lipitor during treatment against the risk of not.
-- Jim
Thanks. Didn't mention that since his dx, he was taken off Lipitor. He's not on any statin during treatment. Thanks for the info...
Makes sense. Curious if you've tracked your husband's cholesterol since he started treatment? Mine fortunately plummeted after the fisrt week, but looks like it's starting to revert back to higher pre-treatment levels now that I'm finished. I'll probably end up on one statin or another in a few months.
Just to be clear -- I'm not suggesting that Lipitor (or even Hep C) is causing your husband's other symptons, but it's not unreasonable to to assume they caused his enzymes to go up, especially if the chronology is correct. Did his other symptons seem to get worse shortly after his diagnosis, or just prior to treatment? Sometimes stress effects us in many unexepcted ways. Just a thought.
-- Jim
Just to be clear -- I'm not suggesting that Lipitor (or even Hep C) is causing your husband's other symptons, but it's not unreasonable to to assume they caused his enzymes to go up, especially if the chronology is correct. Did his other symptons seem to get worse shortly after his diagnosis, or just prior to treatment? Sometimes stress effects us in many unexepcted ways. Just a thought.
-- Jim
Hello..thanks for asking...
Haven't tracked the cholesterol since treatment (it was a lot lower when he was on the statin..."good news/bad news"). Now we are in the "gastro dr." arena. He will go to our general doctor soon, and we'll find out about the cholesterol.
His other symptoms got worse before dx, so I don't think it's stress. Actually, it if was me, that would probably be the case, but my husband doesn't worry about anything until if and when the time comes, and with this, in fact, which he is probably better off in my opinion, he just goes with what the doctor says. Well, actually, he knows that I find a lot of info from the web, so he's comfortable with that more than anything (he is, using a more politically-correct term , "Computer Free!"). I get a copy of all his blood test results, etc.
He is on shot #6 this week...been having "flu-like symptoms" for a day or two after the shot, but, other than that, so far, so good.
Did you do treatment?
Haven't tracked the cholesterol since treatment (it was a lot lower when he was on the statin..."good news/bad news"). Now we are in the "gastro dr." arena. He will go to our general doctor soon, and we'll find out about the cholesterol.
His other symptoms got worse before dx, so I don't think it's stress. Actually, it if was me, that would probably be the case, but my husband doesn't worry about anything until if and when the time comes, and with this, in fact, which he is probably better off in my opinion, he just goes with what the doctor says. Well, actually, he knows that I find a lot of info from the web, so he's comfortable with that more than anything (he is, using a more politically-correct term , "Computer Free!"). I get a copy of all his blood test results, etc.
He is on shot #6 this week...been having "flu-like symptoms" for a day or two after the shot, but, other than that, so far, so good.
Did you do treatment?
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
