Aa
NOT AGAIN
I went threw the peg/rib treatment 2 years ago
The treatment sent me too the hospital 3 times
within a one month period. Blood transfusions
happened each time, plus the muscles around my
heart weaken.The treatment did help my numbers,
but now my Dr. wants me to go onto the next treatment
I'm really hesitant for obvious reasons.
I don't know what to do.
Does anyone know what the next program is?
Help!
Mitchw
The treatment sent me too the hospital 3 times
within a one month period. Blood transfusions
happened each time, plus the muscles around my
heart weaken.The treatment did help my numbers,
but now my Dr. wants me to go onto the next treatment
I'm really hesitant for obvious reasons.
I don't know what to do.
Does anyone know what the next program is?
Help!
Mitchw
I'd learn as much as ya can from the Doc's ,till you feel comfortable with yer discission.
Harry
Harry
I have be HEP free for 7 years. i completed the interferion treatment and now have issues....they are depression, weight gain,sleep alot, pain in my sides when i sleep ,pain up in my ribs and my feet and legs can hardly handle being woke up. By the end of the day they hurt so bad. are these long term side affects? sure hope sombody can help me
Who knows what mitchw has done since August 21st. Did you read his post where he stated the doctor thinks he is beginning stage 4? Resting for 3 years may not be an option for him with that degree of liver damage. He doesn't have alot of time to wait.
Trinity
Trinity
No! No! Don't treat anymore. Let your body rest for about three years until they come out with something better for you. Don't kill yourself. Wait, Wait. That's enough for right now. Let your body rest from those drugs. Something will come out in the future that will be better for you. bye, God bless !
I just made an appointment for the end
of Oct., and I'm printing your comment out
and bringing it with me!
Thanks for the info
mitchw
of Oct., and I'm printing your comment out
and bringing it with me!
Thanks for the info
mitchw
It IS possible to treat with riba and get the transfusions. Here is what I would do. If you want to treat and feel, with your doctor, that this is medically the best time to do it, ask your doctor to refer you to the BEST hematologist he knows. Create a treatment team in advance that includes your treating physician (and it would be kind of neato if your treating physician was a hepatologist, but if not, maybe you could get a hepatologist to oversee the "team." If you have other physicians for other specialized needs get them on board too so everyone knows what you're doing. They are usually pretty good at copying each on labwork, office visits, etc.
When you talk to your hematologist tell him in advance you are going to need procrit and make sure he will take you up to the maximum amount as quickly as you need it (many of us stayed on 40,000 units twice a week for the duration of our treatment), If he isn't willing to do that, I'd maybe talk to some other hematologists. Also, ask if he is willing to transfuse you as many times as necessary to support you during tx. Just to give you an idea, I treated for just a little over six months (probably about twenty-six weeks), and I was in the hospital fourteen times for blood transfusions.
After receiving that much blood there is an excellent chance that your iron / ferritin levels will be sky high and your hematologist will need to do either phlebotomy or chelation to bring them down. My ferritin was between 3k and 4k at its highest. Sorry you're having to go through the anemia stuff. On the plus side, I was so exhausted that I think I didn't notice how bad I felt as much as I would have otherwise.
When you talk to your hematologist tell him in advance you are going to need procrit and make sure he will take you up to the maximum amount as quickly as you need it (many of us stayed on 40,000 units twice a week for the duration of our treatment), If he isn't willing to do that, I'd maybe talk to some other hematologists. Also, ask if he is willing to transfuse you as many times as necessary to support you during tx. Just to give you an idea, I treated for just a little over six months (probably about twenty-six weeks), and I was in the hospital fourteen times for blood transfusions.
After receiving that much blood there is an excellent chance that your iron / ferritin levels will be sky high and your hematologist will need to do either phlebotomy or chelation to bring them down. My ferritin was between 3k and 4k at its highest. Sorry you're having to go through the anemia stuff. On the plus side, I was so exhausted that I think I didn't notice how bad I felt as much as I would have otherwise.
No.
"As the fibrosis worsens, it may extend from one portal zone to adjoining portal zones; this is called bridging fibrosis. Bridging fibrosis is the stage before cirrhosis and ranges from early to marked bridging fibrosis. Cirrhosis is characterized by serious scarring that alters the livers structure and its ability to function."
http://www.hepctrust.org.uk/hepatitis-c/The+chronic+phase/Assessment+of+liver+damage.htm
"As the fibrosis worsens, it may extend from one portal zone to adjoining portal zones; this is called bridging fibrosis. Bridging fibrosis is the stage before cirrhosis and ranges from early to marked bridging fibrosis. Cirrhosis is characterized by serious scarring that alters the livers structure and its ability to function."
http://www.hepctrust.org.uk/hepatitis-c/The+chronic+phase/Assessment+of+liver+damage.htm
Hey there! How ya doin? Was reading this forum and have a question..Is bridging and scarring the same? Ive been told i have both..
Yes, Dr put me on procrit(weekly)It put a
hurting on me. The next morning, I'd be on my
knees, vomiting, achy ribs, the whole bit.
I have scaring on my liver, and as my Dr puts it,
beginning of stage 4.
Thanks for the comeback
mitchw
hurting on me. The next morning, I'd be on my
knees, vomiting, achy ribs, the whole bit.
I have scaring on my liver, and as my Dr puts it,
beginning of stage 4.
Thanks for the comeback
mitchw
First I would be sure you have a liver specialist, creditable Dr. as you are not the 'norm' in any tx situation. You are only 46, to have had that heart issue is something to really pay attention to here. With that and other tx issues, I'm not sure you would even qualify for a trial. Triple therapy, much shorter tx is not too far off, discuss that with your Dr.
Your liver damage isn't listed, but if minimal,moderate that may be a better idea for you.
You have serious issues in treating, please be sure you have all the facts, a qualified Dr, and perhaps a 2nd opinion before you start on these drugs.
Best to you in all of this, LL
Your liver damage isn't listed, but if minimal,moderate that may be a better idea for you.
You have serious issues in treating, please be sure you have all the facts, a qualified Dr, and perhaps a 2nd opinion before you start on these drugs.
Best to you in all of this, LL
If you have needed so many transfusions it would appear that you have a big problem with your hemoglobin dropping down to much? If that is true - did your doctor try giving you weekly (or bi-weekly) procrit (epogen) to bring back up your hemo level?
MANY of us in here have suffered from the hemolytic anemia that we can get from the ribavirin. I personally could not have handled treatment without it but WITH it I was able to do 72 weeks.
If the doctor intends to treat you with the same exact course of treatment than most likely it would be a waste of time. You will need to either add a treatment drug, take higher doses of the inf/riba or do a longer course of treatment to succeed.
Of course you mention your heart and that scares me and certainly I don't know anything about that.
What is your biopsy results? What stage of the liver disease do you have? Because if you are in just the beginning stages treatment might not be the best course of action for you. You might have time to wait and see when the newer drugs come to fruition and are approved by the FDA rather than go through this again?
Sorry just don't have enough information to be of much help, but I wish you all the luck!
MANY of us in here have suffered from the hemolytic anemia that we can get from the ribavirin. I personally could not have handled treatment without it but WITH it I was able to do 72 weeks.
If the doctor intends to treat you with the same exact course of treatment than most likely it would be a waste of time. You will need to either add a treatment drug, take higher doses of the inf/riba or do a longer course of treatment to succeed.
Of course you mention your heart and that scares me and certainly I don't know anything about that.
What is your biopsy results? What stage of the liver disease do you have? Because if you are in just the beginning stages treatment might not be the best course of action for you. You might have time to wait and see when the newer drugs come to fruition and are approved by the FDA rather than go through this again?
Sorry just don't have enough information to be of much help, but I wish you all the luck!
Very good explanation.I'm just not the volunteering
type. I will ask my doctor about anynew trials.
But it's funny, I'm not on any med's right now and I
feel fine. My doctor says 40 years old on the outside,
90 on the inside.
mitchw
type. I will ask my doctor about anynew trials.
But it's funny, I'm not on any med's right now and I
feel fine. My doctor says 40 years old on the outside,
90 on the inside.
mitchw
There no dumb questions, only dumb answers. Here's mine FWIW -
Trials: FDA required study and testing of drugs seeking approval. These studies, or trials, are conducted by the drug manufacturers with the participation of medical researchers, usually at university or teaching hospitals. There are several stages for these "trials" before FDA approval. The earlier stages are simply verifying the feasibility and non-toxicity of the treatments. Later trials are conducted on large numbers of patients and seek to validate treatment effectiveness as well as monitoring of side effects. These later trials seek patients to enroll in the study. There are specific conditions for participating in the trials, but one benefit is that the medications are usually free. Some of the drugs in trials right now have shown some promise.
Trials: FDA required study and testing of drugs seeking approval. These studies, or trials, are conducted by the drug manufacturers with the participation of medical researchers, usually at university or teaching hospitals. There are several stages for these "trials" before FDA approval. The earlier stages are simply verifying the feasibility and non-toxicity of the treatments. Later trials are conducted on large numbers of patients and seek to validate treatment effectiveness as well as monitoring of side effects. These later trials seek patients to enroll in the study. There are specific conditions for participating in the trials, but one benefit is that the medications are usually free. Some of the drugs in trials right now have shown some promise.
can you talk to a cardiologist, as well maybe? what a tough choice, I would also talk to a good GI or hepatologist, or blood guy , maybe all three!
Let us know, will keep you in my prayers
Let us know, will keep you in my prayers
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