Aa
For those who want start treatment with interferons.Be aware of side effects!!!
hello.Doctors often ignore patient side effects ,assuming that they are benign and reversible.I done full 48 week interferon treatment ,now I am 13 months post tx ,but I still suffer from some of side effects(sexual dysfunction,low energy...).I felt it was my duty to explain possible side effects for newcomers who want start treatment.namely:
1.Flu-like symptoms,
2.Fatigue (a feeling of tiredness and having no energy)
3.Feeling sick, vomiting and loss of appetite
4.Skin irritation may occur at the injection site
5.Dizziness
6.Depression and emotional changes
7.Pins and needles in the hands and toes
8.Hair loss
9.Fertility: (Interferon may affect your ability to have children. In women it may affect the menstrual cycle and in men there may be a lowered sperm count. These effects may be temporary but for some people can be permanent).
10.Temporary reduction in the production of blood cells by the bone marrow
11.Effects on circulation: (Interferon may alter the rhythm of the heart or affect your blood pressure, but this will go back to normal when the drug is stopped).
12.Brain toxicity
References:
This section has been compiled using information from a number of reliable sources including:
1.Martindale: The Complete Drug Reference (33rd edition). Sweetman et al. Pharmaceutical Press, 2002.
2.British National Formulary (50th edition). British Medical Association and Royal Pharmaceutical Society of Great Britain, September 2005.
most of these side effects will do improve,and some of them may remain permanet.
with best regards,Abbas.
1.Flu-like symptoms,
2.Fatigue (a feeling of tiredness and having no energy)
3.Feeling sick, vomiting and loss of appetite
4.Skin irritation may occur at the injection site
5.Dizziness
6.Depression and emotional changes
7.Pins and needles in the hands and toes
8.Hair loss
9.Fertility: (Interferon may affect your ability to have children. In women it may affect the menstrual cycle and in men there may be a lowered sperm count. These effects may be temporary but for some people can be permanent).
10.Temporary reduction in the production of blood cells by the bone marrow
11.Effects on circulation: (Interferon may alter the rhythm of the heart or affect your blood pressure, but this will go back to normal when the drug is stopped).
12.Brain toxicity
References:
This section has been compiled using information from a number of reliable sources including:
1.Martindale: The Complete Drug Reference (33rd edition). Sweetman et al. Pharmaceutical Press, 2002.
2.British National Formulary (50th edition). British Medical Association and Royal Pharmaceutical Society of Great Britain, September 2005.
most of these side effects will do improve,and some of them may remain permanet.
with best regards,Abbas.
fyi. as someone who has been part of this forum since feb./05, i have found you to be one of the most intelligent, caring, wise, polite, informative people on this board (one of very many) and you are a constant support of inspiration to all. and you're funny too! i came here for information about the treatment i was about to undergo, and stayed for info on the side effects i was experiencing, now have finished 48wks of tx and am still svr 6months post tx. i foung a good friend in cuteus as well as many others, we shared a bond and the incredible experience of hep-c and treatment. i, for one, am very glad there was an intelligent, informative, caring, and open-minded group of people when i came aboard. thank you cuteus.
i have to say that i have seen you be mean and very nasty in most of your notes and i agree with those other ones that say you need to be nicer.maybe you need some loving and that is why you are mean.sending you some loving but the beauty kalio has my best loving.slow
Scott, it goes way back, to when she attacked Mikesimon and I showed my displeasure with that. Then she shows her displeasure with my words to Rocker. simple. As the world turns in MH, the usual.
How are you feeling lately? and the wife and kids? I am going bananas with college applications!
How are you feeling lately? and the wife and kids? I am going bananas with college applications!
please get over it, MH does caution people in the disclaimer, take the time to read it, it clearly states that this site is patient to patient, common people, not professionals, no one trained to deal with the fragile as you call it. It is a forum, not a counseling center. And as a forum with a diversity of personalities and styles, you will get the ones that are direct in their approach and the ones that beat around the bush. No one is scoring anyone here on the tactfulness, but you. And no one can.
Your words have been as abrasive as you have accused mine to be, but you fail to see that. No where does it say that we have to run things by you to make sure that they don't sound wrong. Perhaps you perceive them one way and others don't. You think your perception is the only one correct? This is a patient to patient site, regular people!
What makes you the appropriateness expert? We are all not going to sound the same. Someone might sound rude because of his/her directness, and that might not be the intention at all. Regardless, you got to stop trying to tell people how they should write or you will be very unhappy in MH!
take care
Your words have been as abrasive as you have accused mine to be, but you fail to see that. No where does it say that we have to run things by you to make sure that they don't sound wrong. Perhaps you perceive them one way and others don't. You think your perception is the only one correct? This is a patient to patient site, regular people!
What makes you the appropriateness expert? We are all not going to sound the same. Someone might sound rude because of his/her directness, and that might not be the intention at all. Regardless, you got to stop trying to tell people how they should write or you will be very unhappy in MH!
take care
no cuteus, this doesn't have anything to do with Rocker, it has to do with your lack of compassion for people who are having a hard time whether it be sx, tx or anything else. Not that you haven't been helpful to some, but your moodiness in answering people concerns me. Remeber some people are at a fragile point in their life due to this disease. I'm surprised MH hasn't cautioned you in your approach.
you are hilarious!!
but don't quit your daytime job just yet!
feel free to try and push my buttons, it really is funny!
but don't quit your daytime job just yet!
feel free to try and push my buttons, it really is funny!
Well, congradulations Abbas, you can diagnose very well from such a distance as Iran. I hope you see this post and it doesn't get buried.
You are right,,,this girl calls people names, insults anyone who doesn't agree with her and thinks she the Hepitiuts C GURU. She may have learned alot from research and personal experience, but she totally shuts her eyes as to how to deal with people who have concerns or who are "stressing," as everyone does at some point with this disease. She needs to take a course in psychology before she answers any more posts. Take a look at how she answered jb above. I guess she is trying to intimadate people from posting,because she may feel there are too many posts....The reason I feel there are so many more posts is because some of these new people posting were so afraid to post because they see certain someones always jump down people's throat if THEY FEEL the question is insignificant or bothersome. But now these new posters,who have been watching from the sidelines, not posting, are now seeing that more and more people are standing up to people like Cuteus, such as me, you, Rocker has and others. This makes the new posters feel as if these people are not as TOUGH as they would like people to believe. It all comes down to certain people come here ONLY FOR THEMSELVES, THEIR PLATFORM AND WHAT THEY CAN GET OUT OF IT. if your question doesn't please them, or help them in any way, they try to cut you down. Pretty sad to think some think giving advice from an invisible platform is prestigious.When you look at it that way, it causes problems. People who have "unrecognized" low self estemm can be problems to be around. Abass, hopefully your sx will pass soon, but it may take years before Cuteus recognizes the SX TO LIFE IN GENERAL THAT SHE HAS. I don't know what kind of problems she faces in her day to day life, but whatever it is, is making her unhappy and it shows. She definitely needs to go to a support group for council, I agree. She will chase many from posting here because of her being the school bully.
Well good for you Abass, you too stood up to Cuteus. I don't have to say "don't leave, don't let her insult you to the point you leave, " because I can see you're not a runner. Good for you, neither am I. Notice she said to you "IF you continue to post here," she gave herself away in that statement, she has her agenda, always has for those who have eyes to see. It's so funny,,,,I have never pushed God down anyones throat, but NOW I WILL SAY,,,isn't it funny the people in life,those who are the most miserable are the ones who want no part of God. Abass you are praying for her and so am I.
Cuteus, if you want MH to look at what he posted as far as calling you mad,,,,,let them look at all the name calling you have done. Your post on Rockers thread, oops never mind, you can't look, it was removed.
Stop being such a mean person, These frustrations, fears, sx that people feel are real and doesn't matter if someone made the right or wrong decision to tx knowing what may lie ahead. That is not the issue anymore.They DID tx, so you can't point them back.That can only make a person feel worse when you do that. The issue is people are having REAL SX, fears and concern and IF YOU CAN'T ANWSWER WITH KINDNESS, DON'T ANSWER.
You are right,,,this girl calls people names, insults anyone who doesn't agree with her and thinks she the Hepitiuts C GURU. She may have learned alot from research and personal experience, but she totally shuts her eyes as to how to deal with people who have concerns or who are "stressing," as everyone does at some point with this disease. She needs to take a course in psychology before she answers any more posts. Take a look at how she answered jb above. I guess she is trying to intimadate people from posting,because she may feel there are too many posts....The reason I feel there are so many more posts is because some of these new people posting were so afraid to post because they see certain someones always jump down people's throat if THEY FEEL the question is insignificant or bothersome. But now these new posters,who have been watching from the sidelines, not posting, are now seeing that more and more people are standing up to people like Cuteus, such as me, you, Rocker has and others. This makes the new posters feel as if these people are not as TOUGH as they would like people to believe. It all comes down to certain people come here ONLY FOR THEMSELVES, THEIR PLATFORM AND WHAT THEY CAN GET OUT OF IT. if your question doesn't please them, or help them in any way, they try to cut you down. Pretty sad to think some think giving advice from an invisible platform is prestigious.When you look at it that way, it causes problems. People who have "unrecognized" low self estemm can be problems to be around. Abass, hopefully your sx will pass soon, but it may take years before Cuteus recognizes the SX TO LIFE IN GENERAL THAT SHE HAS. I don't know what kind of problems she faces in her day to day life, but whatever it is, is making her unhappy and it shows. She definitely needs to go to a support group for council, I agree. She will chase many from posting here because of her being the school bully.
Well good for you Abass, you too stood up to Cuteus. I don't have to say "don't leave, don't let her insult you to the point you leave, " because I can see you're not a runner. Good for you, neither am I. Notice she said to you "IF you continue to post here," she gave herself away in that statement, she has her agenda, always has for those who have eyes to see. It's so funny,,,,I have never pushed God down anyones throat, but NOW I WILL SAY,,,isn't it funny the people in life,those who are the most miserable are the ones who want no part of God. Abass you are praying for her and so am I.
Cuteus, if you want MH to look at what he posted as far as calling you mad,,,,,let them look at all the name calling you have done. Your post on Rockers thread, oops never mind, you can't look, it was removed.
Stop being such a mean person, These frustrations, fears, sx that people feel are real and doesn't matter if someone made the right or wrong decision to tx knowing what may lie ahead. That is not the issue anymore.They DID tx, so you can't point them back.That can only make a person feel worse when you do that. The issue is people are having REAL SX, fears and concern and IF YOU CAN'T ANWSWER WITH KINDNESS, DON'T ANSWER.
thers lots more side efects then that, but hep c its self has worse! some thing about a compleat body shut doun was much wors then treat mont, treament gave my body time to heal a bit 3years latter and i wouk up to day, the sun shine feels good!!!! im treating again as soon as the doctars let me
wow! I did not know about those mutations! I guess it could be true for any transmissible disease, even hep c. Interesting!
I also wonder what happens to those who experience no more bouts with the viruses of the common cold and influenza, due to hep c and/or tx. Could the small amt of IFN due to hep c infection effect the first change and tx completes it? or is it just the tx that modified the immune system to the point of rejecting these viruses? and what other ornanisms are not getting through that we don't know about? Long term effects are not all negatives, in some of us.
I also wonder what happens to those who experience no more bouts with the viruses of the common cold and influenza, due to hep c and/or tx. Could the small amt of IFN due to hep c infection effect the first change and tx completes it? or is it just the tx that modified the immune system to the point of rejecting these viruses? and what other ornanisms are not getting through that we don't know about? Long term effects are not all negatives, in some of us.
There are risks in even vaccinations.
Does that mean if one suffers from a vaccination he/she should heed to all not to use them?
The human body is incredibly diverse and am glad that it is for its long term survival. For example there are those that have natural mutations stopping them from catching HIV.
The point is everybody reacts differently to treatment and medication. One should not generalize for the entire population.
Does that mean if one suffers from a vaccination he/she should heed to all not to use them?
The human body is incredibly diverse and am glad that it is for its long term survival. For example there are those that have natural mutations stopping them from catching HIV.
The point is everybody reacts differently to treatment and medication. One should not generalize for the entire population.
hello friend.what is your problem with my postings? everytime I posted one subject quickly you denounced it.however here is a public board and anyone can offer his or her comments as if I have accepted you as a negative thinker that you are allways looking for negative points of my posts.I pray for you to regain your sanity of your mind.Untill that time please not interfere with my postings.In generaly I have accepted you as a "MAD".I have tomuch problems to think of you boalshitting.I advise you go to MA(mads anonymous)12 step recovery meetings.there you will find much more friends.....
I'm the mental case? re read your last comment.
And, unless your name is Cindy or Phil, you do not have the right to tell people where to post.
If you or I post anything here, it is open for anyone to scrutinize and respond to in whatever manner they wish, as long as it is not against the rules. Right now, you are calling me MAD, which is against the rules, but to me, that is mild compared to what I have been called before. I can take it, and you should be able to also, if you are continuing to post here. If you can't take as well as give, then, don't give. At least, I have not called what you post BS.
And, unless your name is Cindy or Phil, you do not have the right to tell people where to post.
If you or I post anything here, it is open for anyone to scrutinize and respond to in whatever manner they wish, as long as it is not against the rules. Right now, you are calling me MAD, which is against the rules, but to me, that is mild compared to what I have been called before. I can take it, and you should be able to also, if you are continuing to post here. If you can't take as well as give, then, don't give. At least, I have not called what you post BS.
Thanks for sharing. We have had much discussion on this, and it's disturbing that doctors often don't tell us what we might expect either during or after treatment. I pretty much lost a year and a half out of my life. For some others it's been worse.
Be well.
-- Jim
Be well.
-- Jim
Anyone with a seizure disorder - Please be aware that interferon and/or infergen can lower your seizure threshold.
It did for me when I was 5 weeks into Infergen + 1000 Riba. Having learned from this experience, I asked my neurologist about this. He agreed to increase my dosage and/or give something in addition to my current meds.
Be aware of this possibility. I will no longer drive while on treatment.
God bless -
Carolyn
It did for me when I was 5 weeks into Infergen + 1000 Riba. Having learned from this experience, I asked my neurologist about this. He agreed to increase my dosage and/or give something in addition to my current meds.
Be aware of this possibility. I will no longer drive while on treatment.
God bless -
Carolyn
Life is not without risk. Maybe, abbas, you didn't research enough before you started, but there is no new information in what you posted. I had a brother-in-law who treated about 1992 or 93 - right when they were starting the combo treatment. It was a horrible treatment for him and left him with depression and probably resulted in the dissolution of his marriage. He didn't clear either. I too was infected and tried to research but there wasn't much out there. I chose not to treat.
Fast forward to 2005 - meds have improved. The treatment is not as hard as it was. And there are so many places to research. The internet is invaluable. I chose to treat, cleared (so far) and am almost side effect free.
Yes, many have those symptoms you listed, but that does not mean all will get them.
Fast forward to 2005 - meds have improved. The treatment is not as hard as it was. And there are so many places to research. The internet is invaluable. I chose to treat, cleared (so far) and am almost side effect free.
Yes, many have those symptoms you listed, but that does not mean all will get them.
Abbas-I agree with you totally. I was diagnosed, totally ignorant of Hep.C. I panicked and sought out a Gastro Doc.,who literally did not know much about the disease, other than the type of interferons. I did 48 wks.of Peg-Intron/Riba, responded & relapsed. The side effects were horrendous. Everytime I tried to get something for relief, I was told by the Doctor that "I have never heard of that side effect." I took a 6 mth. break, doing alot of research on the disease, and found a Hepatologist, who was up to date on everything, willing to try anything, and has a definite desire to eliminate this disease. Unfortunately, after 52 weeks of Infergen, having 6 straight non-deductibles, I once again relapsed.(Infergen/Riba) The sides were also bad, but the difference is that I had the support and necessary drugs to help. I then went on 3 mths. of Pegasys maintainence & had to stop because of sides. I will not treat again unless some form of non-invasive
treatment comes down the pike. I am F, 63 yrs. 1B, grade 3, stage 4, with starting cirrhosis. I guess the point I am attempting to get at is that the meds have robbed me of 3+ yrs.
Thank God, I don't remember much of it. My short term memory is gone, I have Neuropathy of the legs & feet, causing 9 falls. I continue to ache, am incredibly sore, fatigued, depressed, have purpura, cryoglobulin,etc.
and I just showed a tumor marker.These Interferons are extremely toxic and have left me with a multiple of problems. It has become obvious that my body just will not tolerate the interferons, which is why I have stopped. Many people do reach SVR and I am very happy for them & I would never tell anyone not to treat. Just do your home work before you start.
SUSAN 400-7 rounds of therapy? I cannot inagine how you have done this. I do not come on-line much so I do not know your history, but I would certainly like to, if you would be willing to share?
Sandy
treatment comes down the pike. I am F, 63 yrs. 1B, grade 3, stage 4, with starting cirrhosis. I guess the point I am attempting to get at is that the meds have robbed me of 3+ yrs.
Thank God, I don't remember much of it. My short term memory is gone, I have Neuropathy of the legs & feet, causing 9 falls. I continue to ache, am incredibly sore, fatigued, depressed, have purpura, cryoglobulin,etc.
and I just showed a tumor marker.These Interferons are extremely toxic and have left me with a multiple of problems. It has become obvious that my body just will not tolerate the interferons, which is why I have stopped. Many people do reach SVR and I am very happy for them & I would never tell anyone not to treat. Just do your home work before you start.
SUSAN 400-7 rounds of therapy? I cannot inagine how you have done this. I do not come on-line much so I do not know your history, but I would certainly like to, if you would be willing to share?
Sandy
Believe it or not - most of us are educated adults who understand that even ASPIRIN can have severe side effects. We've all come here to gain MORE knowledge and understanding of what treatment is about and therefore - are fully armed as we strive to kill this disease with the ONLY proven cure that there is.
For most of us, knowing that it is a cure is enough and we have good doctors to advise on the side effects.
I'd prefer to treat and live a long healthy full life.
For most of us, knowing that it is a cure is enough and we have good doctors to advise on the side effects.
I'd prefer to treat and live a long healthy full life.
they can also read the drugs inserts and should before tx, or read the PDR, but, if after doing their reading they choose to tx, respect that.
and abbas, contrary to what you might think you are not enlightening most of the members here, we have done our reading, knew of the documented symptoms and of the possibility of unforeseen events happening as with any drug or new foods, we knew that these were powerful drugs and those of us who chose tx over living with hcv did so informed. yes, there are unfortunate souls that just do what their drs tell them, or are hasty in their decissions, or listened to someone online and nothing else, and are now sorry for their ignorance, but they are not the majority I do hope.
i hope you feel better soon, stress is a major contributor to many illnesses and conditions.
and abbas, contrary to what you might think you are not enlightening most of the members here, we have done our reading, knew of the documented symptoms and of the possibility of unforeseen events happening as with any drug or new foods, we knew that these were powerful drugs and those of us who chose tx over living with hcv did so informed. yes, there are unfortunate souls that just do what their drs tell them, or are hasty in their decissions, or listened to someone online and nothing else, and are now sorry for their ignorance, but they are not the majority I do hope.
i hope you feel better soon, stress is a major contributor to many illnesses and conditions.
In all of my treatments, I had side effects to varying degrees. I also had post treatment problems. This last treatment that I just stopped in June has had more post treatment side effects than any of the previous 6 times I treated. But, I do think that treatment is the way to go for a lot of people. Many people do get SVR and handle their side effects. But, you are also right that they should be making an informed decision. These treatments are a 'chance' at a cure, but not a definite by any means. Each individual has to weigh the risks versus wanting to be rid of this nuisance virus. I've had several friends who tried to treat w/the interferon/Riba thing and couldn't deal with the side effects and they stopped before completing the treatment. They're doing fine, they've had no progression in their disease (that they know of). Of 2 of them, 1 never goes to doctors anymore, but he's feeling great. The other one, a woman, has normal LFT's and low viral load, w/o ever clearing and without ever completing her treatment. So, I think it's more in God's hands than most people want to hear about, but it's the way I feel. I've treated 7-1/2 times and never cleared.
Susan
Susan
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