Aa
First time here and i need answers please.
I was diagnosed in 2000 with hep c took treatment but Dr. stopped treatment due to lab results. Recently I had an endoscopy to place capsule in esophagus due to severe heartburn. When I woke up Dr. said he was unable to place capsule because I have prominent veins in my lower esophagus which could rupture and cause bleeding. He said he was setting up apt for me to have CT scan to check for cirrhosis.
When I got home I started searching for answer on web and have been devastated since then. From what I have read I DO have cirrhosis and from my symptoms and esophageal varices. Why didn't he just tell me, I even went to office and talked to a nurse to try to get answered if what I read is true and she wouldn't give me an answer besides " He won't know til after you CT scan (which is this afternoon) and he will let me know at your apt on the 26th" Like is she SERIOUS I really need answers now, this is driving me crazy not knowing. I cry all the time and haven't shared it with my family til I know forsure. Feeling lost, alone and scared to death.
When I got home I started searching for answer on web and have been devastated since then. From what I have read I DO have cirrhosis and from my symptoms and esophageal varices. Why didn't he just tell me, I even went to office and talked to a nurse to try to get answered if what I read is true and she wouldn't give me an answer besides " He won't know til after you CT scan (which is this afternoon) and he will let me know at your apt on the 26th" Like is she SERIOUS I really need answers now, this is driving me crazy not knowing. I cry all the time and haven't shared it with my family til I know forsure. Feeling lost, alone and scared to death.
Yes I was interested in the article and thank you. My levels have gone up since my last lab work a year ago, I just wasn't aware it was abnormal last yr. I do know Multiple Myeloma is a form of blood cancer, I was just hoping you can have bence jones protein from just HCV or RA.
Thanks again,
Mona
Thanks again,
Mona
I didn't get that from the article. Your mention of Bence Jones Protein inclined me to think this might be of interest to you. I found it interesting that in this case resolution of hcv infection was associated with regression of Multiple Myeloma.
Good luck,
Mike
Good luck,
Mike
So from what I read, this is saying that there is something else going on probably a form of blood cancer? Please correct me if Im wrong and explain.
Thanks, Mona400
Thanks, Mona400
Although not exactly on point I found this very intriguing.
"Regression of a case of Multiple Myeloma with antiviral treatment in a patient with chronic HCV infection
University of Rome, Italy
We report a case of a 54 year old patient with Multiple Myeloma (MM) and chronic HCV infection. In 2005 MM was diagnosed and a chemotherapy was prescribed. Before starting treatment a chronic HCV infection was found. When she came to our Institution for a second opinion, chemotherapy treatment was not considered immediately necessary so the patient was treated for the HCV chronic infection (Pegilated alpha-Interferon 180 μg/week and Ribavirin 1000 mg p.o./day). After one month of treatment she presented a reduction of Bence Jones protein (**) that further decreased in the following three months. The antiviral treatment was suspended after six months and a re-evaluation showed a complete viral response and a regression of MM. Sixty-eight months after the end of antiviral treatment the patient is asymptomatic and presents a condition compatible with an M-GUS. While the association between HCV infection and non-Hodgkin's lymphoma is consolidated and it is clearly demonstrated that antiviral treatment in these patients can induce a high proportion of partial and complete remission, a similar effect was never described in MM. The response obtained in our patient may suggest a possible a role of HCV in the pathogenesis of MM.
Keywords: Myeloma, HCV, Hepatitis, Treatment
It is well demonstrated that chronic Hepatitis C Virus (HCV) infection can be associated to non-Hodgkin's lymphoma (NHL)1 and that antiviral treatment can produce NHL regression in HCV-related forms.2,3 We observed a case of Smoldering Multiple Myeloma (SMM) and hepatitis C in which a clear regression of SMM followed successful antiviral treatment.
In a 54 year old woman routine blood tests revealed, in January 2005, a monoclonal IgG-k (1.87 g/dl). Bence Jones protein (**) was positive, with free k light chains 1.20 g/24 h. No bone lesions were found and the bone marrow biopsy showed 20% plasma cell infiltration, restricted for kappa light chains. Renal function was normal while alanine transaminase (ALT) and aspartate transaminase (AST) were elevated. An increased level of AST, ALT and gamma-glutamyl transpeptidase (GGT) was indeed present since 1985, but further investigations were not previously performed.
The patient was considered stage IA Multiple Myeloma (MM), according to Durie and Salomon criteria, so no therapeutic approach was chosen.
In the following months ** progressively increased, reaching, in September 2005, 5.7 g/24 h, confirmed in multiple controls. The bone marrow needle biopsy and aspirate confirmed a plasma cell infiltration of 20%, in absence of anemia, renal impairment, bone lesions. The Fish (fluorescence in situ hybridization) analysis revealed deletion 13q14 in 49% of plasma cells. The patient was considered as having MM stage IIA, and a treatment consisting of vincristine, adriblastine and dexamethasone (VAD) was prescribed. Before starting treatment a chronic HCV infection was demonstrated, with b1 genotype and >5×105 Ul/ml viremia. Liver biopsy found focal periportal low grade lymphoid infiltration with peacemeal necrosis, low portal fibrosis, concluding for chronic hepatitis with a slight degree of activity (1st degree 1st phase). Liver echography showed a diffuse hyper-reflecting structure.
At this point the patient came for a second opinion to our Institution; she was asymptomatic, so the anti-myeloma chemotherapy was not considered immediately necessary and an antiviral treatment with pegilated alpha-interferon (IFN) 180 µg/week and ribavirin 1000 mg p.o./day, was started.
One month after the start of antiviral treatment, a marked reduction of the ** (586 mg/24 h) was already observed. Two months later, further ** decrease was registered. The antiviral treatment was discontinued after 6 months (July 2006). The end of treatment re-evaluation documented a complete viral response (HCV-RNA: neg, AST, ALT, GGT in the normal range), while a significant regression of myeloma was also observed: 24 h proteinuria fell into the normal range, although free k light chains were still identifiable by immunofixation. Serum monoclonal IgG-k component was also still present although reduced to 1.5 g/dl, while all the other hematochemical parameters were normal.
Sixty-eight months after discontinuation of antiviral treatment, the laboratory picture of the patient is unchanged, being compatible with an M-GUS without any bone lesion nor any clinical symptom; HCV-RNA is also negative, with normal liver function and serology (Fig. 1).
Fig. 1
Fig. 1
Simultaneous decrease of HCV-RNA copy number and Bence-Jones protein after treatment with Peg-Interferon and Ribavirin in a patient with HCV positive micromolecular Multiple Myeloma.
Although an epidemiological association between HCV and NHL is demonstrated,1 a similar association is not clearly evident in the case of myeloma: indeed, in a case-control study, Bianco et al. described a similar proportion of HCV positivity in myeloma cases and controls.5
In HCV related NHL an antiviral treatment demonstrated a high proportion of complete or partial response of lymphoma: in 2002 Hermine et al. documented lymphoma regression in 9 patients with HCV-related splenic lymphoma with villous lymphocytes (SLVL) 3; in 2005 Vallisa et al.2 reported respectively 58% and 16% of complete and partial hematological response after the antiviral treatment with IFN and ribavirin.
Recently, a case control study revealed that HCV chronic infection is also a risk factor in acute myeloid leukemia, but no mention about regression of leukemia after antiviral treatment is reported in literature at the present time.7 Although a not significantly higher prevalence of HCV correlation was described in hematological disease other than NHL,5 no other reports about disease regression after antiviral treatment were described.
Finally Arcaini et al.4 reported in 2011 the effect of antiviral treatment in a large cohort of indolent HCV-related lymphomas confirming response in 77% of patients.
No experience on the effect of antiviral treatment in HCV positive MM is reported to date. The clear response obtained in our case suggests a possible role of chronic HCV infection also in MM, and a possible relationship between viral response and regression of a SMM to a condition of M-GUS. IFN exerts a documented intrinsic anti-myeloma effect, as well as an anti-lymphoma effect: it is impossible to exclude, therefore, a direct effect of the drug against SMM. Limited improvement in terms of overall survival (7 months) and relapse free survival (4.4 months)6 was demonstrated in a meta-analysis by Fritz et al. about IFN as single agent in maintenance therapy, while the efficacy as mono-therapy in induction is limited.8 Moreover, in SLVL Hermine3 evidenced no response in patients treated with IFN without HCV infection; in other experiences the hematological response was correlated to the viral response, but not to the interferon treatment. In conclusion, to our knowledge, this is the first case of regression of MM in an HCV positive patient following antiviral treatment; nevertheless, further studies are needed to confirm this evidence."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3850378/
"Regression of a case of Multiple Myeloma with antiviral treatment in a patient with chronic HCV infection
University of Rome, Italy
We report a case of a 54 year old patient with Multiple Myeloma (MM) and chronic HCV infection. In 2005 MM was diagnosed and a chemotherapy was prescribed. Before starting treatment a chronic HCV infection was found. When she came to our Institution for a second opinion, chemotherapy treatment was not considered immediately necessary so the patient was treated for the HCV chronic infection (Pegilated alpha-Interferon 180 μg/week and Ribavirin 1000 mg p.o./day). After one month of treatment she presented a reduction of Bence Jones protein (**) that further decreased in the following three months. The antiviral treatment was suspended after six months and a re-evaluation showed a complete viral response and a regression of MM. Sixty-eight months after the end of antiviral treatment the patient is asymptomatic and presents a condition compatible with an M-GUS. While the association between HCV infection and non-Hodgkin's lymphoma is consolidated and it is clearly demonstrated that antiviral treatment in these patients can induce a high proportion of partial and complete remission, a similar effect was never described in MM. The response obtained in our patient may suggest a possible a role of HCV in the pathogenesis of MM.
Keywords: Myeloma, HCV, Hepatitis, Treatment
It is well demonstrated that chronic Hepatitis C Virus (HCV) infection can be associated to non-Hodgkin's lymphoma (NHL)1 and that antiviral treatment can produce NHL regression in HCV-related forms.2,3 We observed a case of Smoldering Multiple Myeloma (SMM) and hepatitis C in which a clear regression of SMM followed successful antiviral treatment.
In a 54 year old woman routine blood tests revealed, in January 2005, a monoclonal IgG-k (1.87 g/dl). Bence Jones protein (**) was positive, with free k light chains 1.20 g/24 h. No bone lesions were found and the bone marrow biopsy showed 20% plasma cell infiltration, restricted for kappa light chains. Renal function was normal while alanine transaminase (ALT) and aspartate transaminase (AST) were elevated. An increased level of AST, ALT and gamma-glutamyl transpeptidase (GGT) was indeed present since 1985, but further investigations were not previously performed.
The patient was considered stage IA Multiple Myeloma (MM), according to Durie and Salomon criteria, so no therapeutic approach was chosen.
In the following months ** progressively increased, reaching, in September 2005, 5.7 g/24 h, confirmed in multiple controls. The bone marrow needle biopsy and aspirate confirmed a plasma cell infiltration of 20%, in absence of anemia, renal impairment, bone lesions. The Fish (fluorescence in situ hybridization) analysis revealed deletion 13q14 in 49% of plasma cells. The patient was considered as having MM stage IIA, and a treatment consisting of vincristine, adriblastine and dexamethasone (VAD) was prescribed. Before starting treatment a chronic HCV infection was demonstrated, with b1 genotype and >5×105 Ul/ml viremia. Liver biopsy found focal periportal low grade lymphoid infiltration with peacemeal necrosis, low portal fibrosis, concluding for chronic hepatitis with a slight degree of activity (1st degree 1st phase). Liver echography showed a diffuse hyper-reflecting structure.
At this point the patient came for a second opinion to our Institution; she was asymptomatic, so the anti-myeloma chemotherapy was not considered immediately necessary and an antiviral treatment with pegilated alpha-interferon (IFN) 180 µg/week and ribavirin 1000 mg p.o./day, was started.
One month after the start of antiviral treatment, a marked reduction of the ** (586 mg/24 h) was already observed. Two months later, further ** decrease was registered. The antiviral treatment was discontinued after 6 months (July 2006). The end of treatment re-evaluation documented a complete viral response (HCV-RNA: neg, AST, ALT, GGT in the normal range), while a significant regression of myeloma was also observed: 24 h proteinuria fell into the normal range, although free k light chains were still identifiable by immunofixation. Serum monoclonal IgG-k component was also still present although reduced to 1.5 g/dl, while all the other hematochemical parameters were normal.
Sixty-eight months after discontinuation of antiviral treatment, the laboratory picture of the patient is unchanged, being compatible with an M-GUS without any bone lesion nor any clinical symptom; HCV-RNA is also negative, with normal liver function and serology (Fig. 1).
Fig. 1
Fig. 1
Simultaneous decrease of HCV-RNA copy number and Bence-Jones protein after treatment with Peg-Interferon and Ribavirin in a patient with HCV positive micromolecular Multiple Myeloma.
Although an epidemiological association between HCV and NHL is demonstrated,1 a similar association is not clearly evident in the case of myeloma: indeed, in a case-control study, Bianco et al. described a similar proportion of HCV positivity in myeloma cases and controls.5
In HCV related NHL an antiviral treatment demonstrated a high proportion of complete or partial response of lymphoma: in 2002 Hermine et al. documented lymphoma regression in 9 patients with HCV-related splenic lymphoma with villous lymphocytes (SLVL) 3; in 2005 Vallisa et al.2 reported respectively 58% and 16% of complete and partial hematological response after the antiviral treatment with IFN and ribavirin.
Recently, a case control study revealed that HCV chronic infection is also a risk factor in acute myeloid leukemia, but no mention about regression of leukemia after antiviral treatment is reported in literature at the present time.7 Although a not significantly higher prevalence of HCV correlation was described in hematological disease other than NHL,5 no other reports about disease regression after antiviral treatment were described.
Finally Arcaini et al.4 reported in 2011 the effect of antiviral treatment in a large cohort of indolent HCV-related lymphomas confirming response in 77% of patients.
No experience on the effect of antiviral treatment in HCV positive MM is reported to date. The clear response obtained in our case suggests a possible role of chronic HCV infection also in MM, and a possible relationship between viral response and regression of a SMM to a condition of M-GUS. IFN exerts a documented intrinsic anti-myeloma effect, as well as an anti-lymphoma effect: it is impossible to exclude, therefore, a direct effect of the drug against SMM. Limited improvement in terms of overall survival (7 months) and relapse free survival (4.4 months)6 was demonstrated in a meta-analysis by Fritz et al. about IFN as single agent in maintenance therapy, while the efficacy as mono-therapy in induction is limited.8 Moreover, in SLVL Hermine3 evidenced no response in patients treated with IFN without HCV infection; in other experiences the hematological response was correlated to the viral response, but not to the interferon treatment. In conclusion, to our knowledge, this is the first case of regression of MM in an HCV positive patient following antiviral treatment; nevertheless, further studies are needed to confirm this evidence."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3850378/
Just wanted to let some of you know hat I chose to cancel my colonoscopy so now I need to find a new GI. Im just waiting to see what the hepatologist has to say and hoping they will give me good news.
On another note, I recently found out I had some abnormal lab work have M protein, PCP is sending me to Cancer & Hematology Center because of the Bence Jones Protein (what my Dr. called it).Does anyone know if you can have this from Hep C or RA ?
Happy New Year to all!
Mona400
On another note, I recently found out I had some abnormal lab work have M protein, PCP is sending me to Cancer & Hematology Center because of the Bence Jones Protein (what my Dr. called it).Does anyone know if you can have this from Hep C or RA ?
Happy New Year to all!
Mona400
I agree with nan535 and ceanothus. This doctor is uninformed and arrogant. He didn't like that you had some good questions and good information. You have to feel comfortable with your doctor, even for a colonoscopy. It's your decision, of course, but I'm glad to hear that you will be seeing a hepatologist at UM.
Advocate1955
Advocate1955
I'm in agreement with Nan. I've just read this whole thread and have to add my own comment too: I personally would not want to let that particular doctor do the upcoming colonoscopy. In most cases these are sort of routine things that only need to be done at very widely spaced intervals, so unless there is something unique about your situation regarding your colon, there is probably no reason to treat it as an urgent test that MUST be done in January. Have you had a colonoscopy in the past? I've had two now, and I would be extremely uncomfortable having that test performed by any doctor with such a creepy attitude as yours has. For me, it is important that the doctor is comforting and inspires trust. Mine are done by a doctor who specializes in just colon things, and is as easy to talk to as any doctor I've ever met. It doesn't cost me any more than having it done by any regular gastroenterologist. Maybe it's just me, but it totally creeps me out to think of your current doctor doing it. I think everyone deserves to have as good a doctor as I have. Once you get to see a hepatologist at a liver transplant clinic you may find they can refer you to a better doctor for the colonoscopy. Maybe none of the attitude stuff matters to you, but if it does, then don't hesitate about changing to someone else! Good luck with the upcoming hepatology visit at U of M, and keep us all posted. You will very likely learn that your current (or should I say previous?) gastroenterologist had a few things wrong.
I have a colonoscopy scheduled already with him on the 3rd of Jan so I decided to still have that done.
Words escape me on what you experienced at this doctor's appt.
Shame on him! The only question I have is why is this relationship over only after Jan 3rd?
I am very happy to read you have an appt at U of M hopefully with a good hepatologist who will take your concerns seriously and "know" whether or not you have cirrhosis.
I wish you the best.
Nan
Shame on him! The only question I have is why is this relationship over only after Jan 3rd?
I am very happy to read you have an appt at U of M hopefully with a good hepatologist who will take your concerns seriously and "know" whether or not you have cirrhosis.
I wish you the best.
Nan
I went to my Dr. and am now have many thoughts, fears and unanswered questioned that I don't even know where to start but will try. After the nurse saying it was cirrhosis and the rest he said he can't say whether it is or isn't cirrhosis. He said I have prominent veins but not varices, said my portal veins were enlarged so I asked if I had portal hypertension which he said he was unsure. He said not to worry that he was going to start the new treatment as soon as it came available in a couple months. I told him I had been doing a lot of research and reading articles and that it wasn't available for me and I didn't feel comfortable waiting for it to become available for me. That is when his arrogance and condescending attitude really came out. Told me that was called treatment naïve I said yes Im aware of that, said I was over reacting and shouldn't read so much. I told him I wanted another liver bio since I haven't had one since 2001 he said there was no need to do that til new tx was available. I then said I don't want to wait that long so he had the audacity to ask me how long I thought I had to live. Of course I told him I had no idea and I was shocked he even asked me this of course he asked me in a way assuming that I thought I had all the answers. I have a colonoscopy in Jan with him and of course he said any surgery for heartburn or other surgery in the stomach area is out of the question because of the "prominent veins". So this Dr./ patient relationship is over after Jan. 3. I a good note I shared this devastating Dr. visit with my PCP and he has referred me to U of M, I go on Feb. 5 I am also confident that if it is cirrhosis it is in the beginning stages since he said the scan wasn't a clear answer either way.
Mona
Mona
I too am very sorry that you are going through this. While my wife does not have Hep C she does have cirrhosis and she had a vein that was bleeding and she started throwing up blood. She is fine and getting better. May I suggest a book called "Hepatitus C cured". If nothing else, it may give you hope that this thing CAN BE beaten and you can do it. Be strong have faith IN YOURSELF that you have what it takes to turn this all around!
Good morning everyone,
Got my CT scan results over the phone and I posted a new question. Sorry I wasn't sure whether to comment on this post or make a new one.
Mona
Got my CT scan results over the phone and I posted a new question. Sorry I wasn't sure whether to comment on this post or make a new one.
Mona
COMMUNITY LEADER
Mona we are really glad you found us too, In the beginning there is a lot of information to absorb and it is important to learn, it's been nearly four years for me and I still read daily. Were glad to share what we have learned along the way and to make sure you are going in the right direction. I hope you CT results came back good and also remember to request a copy for your records as well. Below is a list of transplant centers in Michigan, I hope it helps. Take care and good luck today!
Randy
University of Michigan Transplant Center
1500 E. Medical Center Drive Floor 1, Reception G
Ann Arbor MI 48109
734-936-7491
Toll-Free
1-800-333-9013
Henry Ford Transplant Institute
2799 west Grand ave.
Detroit MI. 48202
313- 916-8865
Beaumont Hospital
3601 W 13 Mile Rd
Royal Oak, MI 48073
248-551-1515
Randy
University of Michigan Transplant Center
1500 E. Medical Center Drive Floor 1, Reception G
Ann Arbor MI 48109
734-936-7491
Toll-Free
1-800-333-9013
Henry Ford Transplant Institute
2799 west Grand ave.
Detroit MI. 48202
313- 916-8865
Beaumont Hospital
3601 W 13 Mile Rd
Royal Oak, MI 48073
248-551-1515
Hi Advocate1955,
I did have a liver biopsy in 2000 that showed scarring but haven't had one since then. My Dr. did suggest treatment in 2011 and I declined because I was deathly sick from first treatment Dr. stopped treatment after 2 months. When I went back in 2012 and said I was willing to try treatment he said he wanted me to wait until the new treatment was available in 2014. I have my appt. on the 26th of this month and I am going to ask him if he can recommend me to hepatologist.
Mona
I did have a liver biopsy in 2000 that showed scarring but haven't had one since then. My Dr. did suggest treatment in 2011 and I declined because I was deathly sick from first treatment Dr. stopped treatment after 2 months. When I went back in 2012 and said I was willing to try treatment he said he wanted me to wait until the new treatment was available in 2014. I have my appt. on the 26th of this month and I am going to ask him if he can recommend me to hepatologist.
Mona
Good morning, thanks for the encouraging words! Im so glad I found this community because it makes it a little less lonely talking with others that are or have gone thru the same thing. An yes I have already got great advise.
As of right now my husband an oldest daughter are the only ones who know a little about what's going on. Until I have all the results I chose not to worry my loved ones even then it's hard for others to know how it feels and what a rollercoaster ride of emotions you have. Once more Thank You!
Mona
As of right now my husband an oldest daughter are the only ones who know a little about what's going on. Until I have all the results I chose not to worry my loved ones even then it's hard for others to know how it feels and what a rollercoaster ride of emotions you have. Once more Thank You!
Mona
Good morning. I came on to check Hector's update and saw you..
Honey, I was in the same shape. My varices have been banded. I had treatment and survived. Life will be good again.
All of the experts have chimed in. You'll get great advice and support here. I sure did.
xo Karen:)
Honey, I was in the same shape. My varices have been banded. I had treatment and survived. Life will be good again.
All of the experts have chimed in. You'll get great advice and support here. I sure did.
xo Karen:)
Mona,
You probably have Genotype 1, as that is the hardest to treat. Since you treated with Interferon and Ribavirin in the past, you won't be able to use the new treatment that is coming out soon, first of 2014. But there are other new treatments being developed.
Some of your symptoms may be related to your Cirrhosis (fatigue, difficulty eating and getting nutrients from your food - upset stomach, vomiting, diarrhea) - and the mental confusion - forgetfulness, disorientation, things like that COULD also be from your Cirrhosis. Only a hepatologist will be able to tell you what stage of liver damage you have. It's very important to follow up with a hepatologist in a transplant center. Yes, transplant centers are kind of far and few between. We have one in the state of Washington.
Going to a transplant center doesn't mean that you would need a transplant right away, it would depend on a full evaluation by a hepatologist, trying other treatments to help with some of your symptoms, and basically the stage of liver damage.
It's unfortunate that your gastroenterologist didn't recommend a liver biopsy much sooner as there have been newer treatments for Hep C available since 2011 that you could have tried then.
Hang in there. I don't want to cause you to feel pessimistic. Just follow up with a hepatologist in a transplant center as soon as you can.
Advocate1955
You probably have Genotype 1, as that is the hardest to treat. Since you treated with Interferon and Ribavirin in the past, you won't be able to use the new treatment that is coming out soon, first of 2014. But there are other new treatments being developed.
Some of your symptoms may be related to your Cirrhosis (fatigue, difficulty eating and getting nutrients from your food - upset stomach, vomiting, diarrhea) - and the mental confusion - forgetfulness, disorientation, things like that COULD also be from your Cirrhosis. Only a hepatologist will be able to tell you what stage of liver damage you have. It's very important to follow up with a hepatologist in a transplant center. Yes, transplant centers are kind of far and few between. We have one in the state of Washington.
Going to a transplant center doesn't mean that you would need a transplant right away, it would depend on a full evaluation by a hepatologist, trying other treatments to help with some of your symptoms, and basically the stage of liver damage.
It's unfortunate that your gastroenterologist didn't recommend a liver biopsy much sooner as there have been newer treatments for Hep C available since 2011 that you could have tried then.
Hang in there. I don't want to cause you to feel pessimistic. Just follow up with a hepatologist in a transplant center as soon as you can.
Advocate1955
Hi Advocate1955,
I don't remember what type it is (I was told in 2000) but I do remember my Gastroenterologist saying it is the hardest to treat. Won't find out what stage Im in until I get the results of my CT scan. Im only aware of esophageal varices at this time,
My symptoms got worse after I was on a high protein diet at the beginning of this year. I came back from Vegas where my daughter got married and was sick for about 2 wks. Now I have more bad days than good and have a lot of pain under right rib. I have become more forgetful (use to be good at spelling now I forget how to spell things and I have left my burner on twice in the last couple of months) but I just figured it was part of getting older (I will be 48 next month). I did have rectal bleeding this summer and called my gastroenterologist and they said don't worry about it unless it is severe that it was probably hemorrhoids even though I had no of the other symptoms of hemorrhoids.
I live in Michigan and when I looked for Transplant Centers the only one I found was on the other side of the state in Detroit, does that seem accurate to you?
Thank you so much for the info.
Mona
I don't remember what type it is (I was told in 2000) but I do remember my Gastroenterologist saying it is the hardest to treat. Won't find out what stage Im in until I get the results of my CT scan. Im only aware of esophageal varices at this time,
My symptoms got worse after I was on a high protein diet at the beginning of this year. I came back from Vegas where my daughter got married and was sick for about 2 wks. Now I have more bad days than good and have a lot of pain under right rib. I have become more forgetful (use to be good at spelling now I forget how to spell things and I have left my burner on twice in the last couple of months) but I just figured it was part of getting older (I will be 48 next month). I did have rectal bleeding this summer and called my gastroenterologist and they said don't worry about it unless it is severe that it was probably hemorrhoids even though I had no of the other symptoms of hemorrhoids.
I live in Michigan and when I looked for Transplant Centers the only one I found was on the other side of the state in Detroit, does that seem accurate to you?
Thank you so much for the info.
Mona
Hi Mona,
You've received great advice from Randy. Your Cirrhosis is caused by your Hep C and we are entering the best time in history for treating Hep C. You are probably Genotype 1, but your hepatologist will want to confirm that. The new treatments that are coming out soon will not be available for Geonotype 1's who have treated before, bit there is a currently approved treatment called triple therapy that you can try. It is a difficult treatment and isn't recommended for people with decompensated Cirrhosis, so much will depend on the exact stage of your Cirrhosis. Do you have edema or ascites? Do you have Hepatic Encephalopathy? These combined with esophageal varices could be signs of decompensated Cirrhosis. Basically, if your liver is compensated, you may be able to do triple therapy, but if your liver is decompensated, you probably won't be able to. If you are Genotype 2 or 3, you will be able to take the new meds that will be available early in 2014. It will be an easier treatment and will take about 12 wks, with a high rate of success. But if you are Genotype 1 and have previously treated, these new treatments won't be available to you.
As Randy said, you need to be treated by a hepatologist in a transplant center, so you can be monitored for signs of decompensation, liver cancer, etc. My husband sees his hepatologist every 3 mo and gets ultrasounds every 6 mo.
No need to panic. If you can treat your Hep C, you can stop the progression of your liver damage, but even if you can't right now, new treatments are in trial studies right now. In the meantime, don't take meds not approved by your doctor, no alcohol, fresh and organic fruits and veggies, no supplements, no iron, and limit red meat. Also reduce sodium.
Follow up with your hepatologist.
Advocate1955
You've received great advice from Randy. Your Cirrhosis is caused by your Hep C and we are entering the best time in history for treating Hep C. You are probably Genotype 1, but your hepatologist will want to confirm that. The new treatments that are coming out soon will not be available for Geonotype 1's who have treated before, bit there is a currently approved treatment called triple therapy that you can try. It is a difficult treatment and isn't recommended for people with decompensated Cirrhosis, so much will depend on the exact stage of your Cirrhosis. Do you have edema or ascites? Do you have Hepatic Encephalopathy? These combined with esophageal varices could be signs of decompensated Cirrhosis. Basically, if your liver is compensated, you may be able to do triple therapy, but if your liver is decompensated, you probably won't be able to. If you are Genotype 2 or 3, you will be able to take the new meds that will be available early in 2014. It will be an easier treatment and will take about 12 wks, with a high rate of success. But if you are Genotype 1 and have previously treated, these new treatments won't be available to you.
As Randy said, you need to be treated by a hepatologist in a transplant center, so you can be monitored for signs of decompensation, liver cancer, etc. My husband sees his hepatologist every 3 mo and gets ultrasounds every 6 mo.
No need to panic. If you can treat your Hep C, you can stop the progression of your liver damage, but even if you can't right now, new treatments are in trial studies right now. In the meantime, don't take meds not approved by your doctor, no alcohol, fresh and organic fruits and veggies, no supplements, no iron, and limit red meat. Also reduce sodium.
Follow up with your hepatologist.
Advocate1955
Thanks Randy and I will have to mention the 3 mo. lab work because I only have mine done once a year. I must admit Im a little overwhelmed by all the information to taken in, I just have to remember to take it step by step one day at a time.
I had my CT scan today and they said the Dr. should have the results Wednesday so Im hoping They will tell me the results when I call later this week.
I had my CT scan today and they said the Dr. should have the results Wednesday so Im hoping They will tell me the results when I call later this week.
COMMUNITY LEADER
Hi Mona,
I don't know much about Hep C but many of our other members do. I have heard great things about the new treatments and their effectiveness. It is very possible Hep C has caused liver disease and it sounds like your doctor is taking good care of you. Sorry I somehow missed you mentioning you had HCV but the same rules apply, remove the cause to stop further progression.
Your liver is a vital organ that carries out roles such as the detoxification of blood, metabolism of nutrients, the storing of vitamins and the production of glucose. Liver health and liver function are routinely assessed by measuring liver enzyme levels -- mainly aspartate aminotransferase, or AST, and alanine aminotransferase, or ALT. Normally, liver enzymes reside within the liver. A high level of liver enzymes in the blood indicates liver injury and a compromised liver function. For persons with liver disease it is important to have blood labs ran every three months to monitor the progression of your disease. Observe your ALT/AST/Bilirubin levels. These three are the key ones to watch.
Norco tablets: http://www.norcos.org/norco-tablets.html
Norco tablets are administered to treat moderate to moderately severe pain. They are taken orally in every 4-6 hour intervals or 'as needed' for pain. Care should be taken to not exceed the daily recommended dosage to avoid overdose or acetaminophen poisoning which may lead to liver failure.
Tramadol: http://www.drugs.com/disease-interactions/tramadol.html
Tramadol is converted by the liver to several metabolites, one of which (referred to as M1) is pharmacologically active and a more potent analgesic than tramadol itself. The metabolism of both tramadol and M1 has been shown to decrease in patients with advanced cirrhosis of the liver, resulting in increased exposure to tramadol as well as substantially prolonged elimination half-lives for both tramadol and M1. Therapy with tramadol should be administered cautiously in patients with impaired hepatic function. The recommended dosage for patients with cirrhosis is 50 mg every 12 hours.
Since your doctor is prescribing these drugs for you I would say you are okay to continue using them at your own discretion. Minimal dosages should be considered. You should always seek the approval of your liver specialist before agreeing to any other medical treatment/prescriptions.
Learn all you can about liver disease so that you may better communicate with your doctors and decide what treatment options are best for you. Request copies of all lab results and become familiar with how to read them. Hang in there Mona, 2014 is right around the corner.
Randy
I don't know much about Hep C but many of our other members do. I have heard great things about the new treatments and their effectiveness. It is very possible Hep C has caused liver disease and it sounds like your doctor is taking good care of you. Sorry I somehow missed you mentioning you had HCV but the same rules apply, remove the cause to stop further progression.
Your liver is a vital organ that carries out roles such as the detoxification of blood, metabolism of nutrients, the storing of vitamins and the production of glucose. Liver health and liver function are routinely assessed by measuring liver enzyme levels -- mainly aspartate aminotransferase, or AST, and alanine aminotransferase, or ALT. Normally, liver enzymes reside within the liver. A high level of liver enzymes in the blood indicates liver injury and a compromised liver function. For persons with liver disease it is important to have blood labs ran every three months to monitor the progression of your disease. Observe your ALT/AST/Bilirubin levels. These three are the key ones to watch.
Norco tablets: http://www.norcos.org/norco-tablets.html
Norco tablets are administered to treat moderate to moderately severe pain. They are taken orally in every 4-6 hour intervals or 'as needed' for pain. Care should be taken to not exceed the daily recommended dosage to avoid overdose or acetaminophen poisoning which may lead to liver failure.
Tramadol: http://www.drugs.com/disease-interactions/tramadol.html
Tramadol is converted by the liver to several metabolites, one of which (referred to as M1) is pharmacologically active and a more potent analgesic than tramadol itself. The metabolism of both tramadol and M1 has been shown to decrease in patients with advanced cirrhosis of the liver, resulting in increased exposure to tramadol as well as substantially prolonged elimination half-lives for both tramadol and M1. Therapy with tramadol should be administered cautiously in patients with impaired hepatic function. The recommended dosage for patients with cirrhosis is 50 mg every 12 hours.
Since your doctor is prescribing these drugs for you I would say you are okay to continue using them at your own discretion. Minimal dosages should be considered. You should always seek the approval of your liver specialist before agreeing to any other medical treatment/prescriptions.
Learn all you can about liver disease so that you may better communicate with your doctors and decide what treatment options are best for you. Request copies of all lab results and become familiar with how to read them. Hang in there Mona, 2014 is right around the corner.
Randy
Thank you Randy for the information I really do appreciate it. Wow I didn't realize it could be caused by so many things. Like I said I do have hep c and my Dr. plans on starting me on the new treatment that is suppose to be available early 2014. I do not drink so that's not a problem but I do take tramadol daily due to pain from Rheumatoid Arthritis. I was told this is safe to take and occasionally do take Norco 5/325 when I cant control pain with tramadol. Are these not safe to take? I was told to not use antihistamines if possible.
Mona
Mona
COMMUNITY LEADER
Hello Mona and welcome to MedHelp.
I am so sorry you found out this way and I sure understand what this waiting period is like. Most of us here at some point have had to go through the same thing. Since you have esophageal varices this means there is a large increase in portal pressure (portal hypertension).
Portal hypertension is an increase in the blood pressure within a system of veins called the portal venous system. Veins coming from the stomach, intestine, spleen, and pancreas merge into the portal vein, which then branches into smaller vessels and travels through the liver. If the vessels in the liver are blocked due to liver damage, blood cannot flow properly through the liver. As a result, high pressure in the portal system develops. This increased pressure in the portal vein may lead to the development of large, swollen veins (varices) within the esophagus, stomach, rectum, or umbilical area (belly button).
The most common cause of portal hypertension is cirrhosis of the liver. Cirrhosis is scarring which accompanies the healing of liver injury caused by hepatitis, alcohol, or other less common causes of liver damage. In cirrhosis, the scar tissue blocks the flow of blood through the liver and slows its function.
Other causes of portal hypertension include blood clots in the portal vein, blockages of the veins that carry the blood from the liver to the heart, a parasitic infection called schistosomiasis, and focal nodular hyperplasia, a disease now seen in people infected with the AIDS virus. Sometimes the cause is unknown.
Cirrhosis is a life threatening disease if the cause cannot be eliminated or if it has advanced too far. Eliminate the cause and you can stop further progression at which point it is possible to live a full life. Treatment is very important, often persons with cirrhosis receive treatment from a gastroenterologist and though they may do their best to manage your symptoms they are just not qualified. It is important your PCP refer you to a liver transplant facility. There your disease will be managed by a liver specialist (Hepatologist). This does not mean you will need a liver transplant just that the best treatment to manage your disease will be made available to you.
Hang in there Mona, you still have a lot to find out. Oh in the meantime it is important you avoid using pain medications and alcohol since this will only cause further damage. If you have any more questions along the way we are here for you and glad to help! Take care and good luck.
Randy
I am so sorry you found out this way and I sure understand what this waiting period is like. Most of us here at some point have had to go through the same thing. Since you have esophageal varices this means there is a large increase in portal pressure (portal hypertension).
Portal hypertension is an increase in the blood pressure within a system of veins called the portal venous system. Veins coming from the stomach, intestine, spleen, and pancreas merge into the portal vein, which then branches into smaller vessels and travels through the liver. If the vessels in the liver are blocked due to liver damage, blood cannot flow properly through the liver. As a result, high pressure in the portal system develops. This increased pressure in the portal vein may lead to the development of large, swollen veins (varices) within the esophagus, stomach, rectum, or umbilical area (belly button).
The most common cause of portal hypertension is cirrhosis of the liver. Cirrhosis is scarring which accompanies the healing of liver injury caused by hepatitis, alcohol, or other less common causes of liver damage. In cirrhosis, the scar tissue blocks the flow of blood through the liver and slows its function.
Other causes of portal hypertension include blood clots in the portal vein, blockages of the veins that carry the blood from the liver to the heart, a parasitic infection called schistosomiasis, and focal nodular hyperplasia, a disease now seen in people infected with the AIDS virus. Sometimes the cause is unknown.
Cirrhosis is a life threatening disease if the cause cannot be eliminated or if it has advanced too far. Eliminate the cause and you can stop further progression at which point it is possible to live a full life. Treatment is very important, often persons with cirrhosis receive treatment from a gastroenterologist and though they may do their best to manage your symptoms they are just not qualified. It is important your PCP refer you to a liver transplant facility. There your disease will be managed by a liver specialist (Hepatologist). This does not mean you will need a liver transplant just that the best treatment to manage your disease will be made available to you.
Hang in there Mona, you still have a lot to find out. Oh in the meantime it is important you avoid using pain medications and alcohol since this will only cause further damage. If you have any more questions along the way we are here for you and glad to help! Take care and good luck.
Randy
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