Aa
Treatment SX
So I have read many posts about the sx of tx. I going to say maybe 98% sound pretty rough. Are there any people out there who have had little or no sx from treatment? Can i hear some of your stories?
I'm off to google 'stats on sx of hep treatment'...
I'm off to google 'stats on sx of hep treatment'...
Thank you for all the comments...I haven't done my biopsy yet, so i am not sure what condition my liver is in yet. I am pretty sure I will probably just go ahead and do treatment, but if my liver is at 0/0 or 1/1 or something to that affect, I may think long and hard about treatment. I am over 50 now, if there is no damage to the liver yet, I may be 70 or 80 before I have a problem, that's about as long as the women last in my family anyway...my mother is encouraging me not to do treatment, but she is against western medicine anyway and is developing a raging case of dementia, which I sometimes wonder if that is related to her liver starting to fail...
I have such a busy life, 2 teenagers, a sick mother in a nursing home that I have to take care of, there is no else but me to help her (and btw she has made a full time job of trying to break out of the nursing home, ha), full time work...I know somethings will have to be cut back and my partner has promised he will do everything in his power to help make this easier...also, I have insurance now and you never know what the work situation or insurance situation will be like in 5 or 10 or 15 years, I may not be able to afford it, I also hate the fact that I am hyper paranoid about bleeding now, that is an anxiety like I have never felt before... it seems like everysince I found out I cut my self like 20 times!
Either way, I know I have to wait for the biopsy results...I wish they would call me and schedule the appt...I hate all this waiting!
I have such a busy life, 2 teenagers, a sick mother in a nursing home that I have to take care of, there is no else but me to help her (and btw she has made a full time job of trying to break out of the nursing home, ha), full time work...I know somethings will have to be cut back and my partner has promised he will do everything in his power to help make this easier...also, I have insurance now and you never know what the work situation or insurance situation will be like in 5 or 10 or 15 years, I may not be able to afford it, I also hate the fact that I am hyper paranoid about bleeding now, that is an anxiety like I have never felt before... it seems like everysince I found out I cut my self like 20 times!
Either way, I know I have to wait for the biopsy results...I wish they would call me and schedule the appt...I hate all this waiting!
That was by far the best comment I have read on this forum , for myself, I am still in the pre treatmemt process with my hep c specialist and your post has really made me feel at ease . I too have many questions and haye posted since my diagnosis, some were good some not so, boy did I pay for it. Howeve,r you truly made me see things more optomistically. thanks for the encouragement .
Thanks eureka. I have read many of your posts and thought that they were a fine contribution to the forums. I am doing quite well at the moment all things considered. I am very positive and hopeful about the new treatments. I would not have found out about the new developments so quickly without people taking the trouble to post on these forums.
An excellent post, Odin, well-stated and meaningful. Sorry to hear that treatment was relatively difficult for you, and I hope things can improve for you.
Treatment seems to be tough for almost everybody but it is all relative. Relative to the demands of an environment, expectations, and medical history.
If someone had asked me in the first week of treatment (SOC) what the SX were like I would have focussed on vomiting, headaches, nausea repeat that ten times then rush to the toilet again. A few weeks later it would have been "I can't do my job because of brain fog added to those symptoms". After a couple of months low white and red cell count issues would have been the focus because I was used to the nausea, was too depressed to care about my job anymore and wasn't vomiting after the shots.
If I had been very sick or heading for cirrhosis before starting treatment I wouldn't mind those SX _during_ treatment in exchange for a chance to stop the progression of the disease. I was very healthy beforehand and had spent very little time in the hands of doctors. As a result the SX seemed very bad. I felt like I was hurting my body and I was't sure that TX was the right thing to do.
It is all relative. Everyone's perspective is tempered by their own experiences and condition. I think there is a lot of discussion about side effects because firstly they are quite unpleasant, even dangerous if not properly attended to by a doctor. But it is a shock to a lot of previously healthy people who aren't at all prepared for the full force of SX on their lives.
If you have no symptoms and little or no liver damage from HCV before treatment it is natural to be upset about SX. Those feelings are magnifiied by chemically induced depression and off we go through the roof.
If you start with a clear diagnosis of serious liver disease, and you are fully informed about SX both temporary and permanent, then you have chosen a better path despite some pain. You can be at peace with the decision.
So most of what people say on the forums is meaningful when considered in perspective. When I look at someone's post, if it seems extreme I look at their disease profile, previous treatments if any, and their other comments. Then what they say usually starts to make sense.
That's how I get my head around it all.
If someone had asked me in the first week of treatment (SOC) what the SX were like I would have focussed on vomiting, headaches, nausea repeat that ten times then rush to the toilet again. A few weeks later it would have been "I can't do my job because of brain fog added to those symptoms". After a couple of months low white and red cell count issues would have been the focus because I was used to the nausea, was too depressed to care about my job anymore and wasn't vomiting after the shots.
If I had been very sick or heading for cirrhosis before starting treatment I wouldn't mind those SX _during_ treatment in exchange for a chance to stop the progression of the disease. I was very healthy beforehand and had spent very little time in the hands of doctors. As a result the SX seemed very bad. I felt like I was hurting my body and I was't sure that TX was the right thing to do.
It is all relative. Everyone's perspective is tempered by their own experiences and condition. I think there is a lot of discussion about side effects because firstly they are quite unpleasant, even dangerous if not properly attended to by a doctor. But it is a shock to a lot of previously healthy people who aren't at all prepared for the full force of SX on their lives.
If you have no symptoms and little or no liver damage from HCV before treatment it is natural to be upset about SX. Those feelings are magnifiied by chemically induced depression and off we go through the roof.
If you start with a clear diagnosis of serious liver disease, and you are fully informed about SX both temporary and permanent, then you have chosen a better path despite some pain. You can be at peace with the decision.
So most of what people say on the forums is meaningful when considered in perspective. When I look at someone's post, if it seems extreme I look at their disease profile, previous treatments if any, and their other comments. Then what they say usually starts to make sense.
That's how I get my head around it all.
I cant have treatment, Im pretty sure I am Geno 2b that sound right idk,, i think i saw that on a paper. Not saying you cant get treatment for Genotype 2 I just cant. I asked about a person in the same situation as me who did have treatment and the Heptologist explained they blew up (swollen) went very yellow and they lasted 16 weeks before they were at risk of death so they put them on a transplant list.
I asked about the new meds and half the time treatment, but they said that regardless you still have to take the others. You will get worse before you get better.
I asked about the new meds and half the time treatment, but they said that regardless you still have to take the others. You will get worse before you get better.
If you have a hard time understanding what a huge range of reactions people have to the treatment consider how varied the virus itself is
( differing genotypes and sub-genotype) and how different we all are, chemically, physically, emotionally.
Please understand that many of the complaints mentioned here in the last few months have to do with the new PIs which you won't be doing.
What I've been seeing concerning low hemoglobin, severe rashes, blood transfusions, are mostly related to the triple treatment.
( not that it can't happen with SOC)
Yesterday, I did shot 10 of 24.
I don't drive because my mind gets fuzzy.
I've had days when I'm tired and achy but then there's the good days too. Every week I walk several miles.
I've had a few manageable canker sores, achy muscles, dry skin, and emotional irritation.
HepC and liver damage zaps your energy.
If it develops to cirrhosis there are more complicated ill side effects, ESLD ( end stage liver disease ) and a transplant.
OH
( differing genotypes and sub-genotype) and how different we all are, chemically, physically, emotionally.
Please understand that many of the complaints mentioned here in the last few months have to do with the new PIs which you won't be doing.
What I've been seeing concerning low hemoglobin, severe rashes, blood transfusions, are mostly related to the triple treatment.
( not that it can't happen with SOC)
Yesterday, I did shot 10 of 24.
I don't drive because my mind gets fuzzy.
I've had days when I'm tired and achy but then there's the good days too. Every week I walk several miles.
I've had a few manageable canker sores, achy muscles, dry skin, and emotional irritation.
HepC and liver damage zaps your energy.
If it develops to cirrhosis there are more complicated ill side effects, ESLD ( end stage liver disease ) and a transplant.
OH
My husband is doing his third treatment. 1st: SOC, some cold/flu symptoms after weekly interferon, some upset stomach around wk10-12, fatigue, otherwise pretty good. Had to stop at wk 12 because he was a partial responder. 2nd: daily infergen injections with 1400 mg. riba daily, cold/flu symptoms, extreme fatigue, rash, anemia, low white count, required rescue drugs, had to stop at wk 12 because he was a partial responder. 3rd: triple with incivek, cold/flu like symptoms for 1-2 days after weekly injection, major incivek rash wks 2-3, major anal/rectal pain/bleeding wks 4-present, itching without rash wks 9-10, increasing fatigue, no anemia, white count is OK, no rescue meds as yet (ending wk 10). All sides have been somewhat difficult but manageable through all 3 treatments. Daily infergen was the most difficult and made him the sickest, but he managed. As I said, he is just finishing wk 10 of triple and doing pretty well (knock on wood).
Advocate1955
Advocate1955
I am on triple med treatment with Incivek. I have had some side effects but nothing that would stop me from finishing treatment. (I have a total of 48 weeks of treatment.)
I had some rectal issues but I have solved those now. They were from the Incivek so you won't have to worry about them. I also had pretty severe nausea and bloating but now I am on Zofran and that is taking care of the nausea and bloating (and several other symptoms). Those were my worst symptoms/side effects. I do feel tired and I do not have much energy. I do have some muscle fatigue and some general malaise. I don't have much energy or motivation.
My labs are pretty good. Nothing is in the danger field. Yes, my numbers all dropped, but they are either still in the normal range or very close to it.
For me, the anticipation was the worst. I expected to get all kinds of horrible side effects. I did not. I got some, but none that have not been manageable.
While I am on treatment, I think it would be difficult for me to try to hold down a physically and mentally demanding job like I used to have, but I am 65, not 20 or 30 or even 40 or 50. I was already retired when I was diagnosed. Even if I was not on treatment, I would not be able to continue to do my former job.
I agree with the others that most people who are posting are posting when they do have problems and when they need some suggestions and remedies for managing the side effects. Most people are not posting how great they are doing. Many people who are doing fine, just don't come to forums seeking help.
I have 10 1/2 weeks done and 37 1/2 weeks to go. Luckily the Incivek is finished in 1 1/2 weeks. Barring some life threatening side effect, I am going to continue treatment for the full 48 weeks and hopefully be rid of this virus. I don't want it to do any more damage than it already has done.
You can do it too. While everyone reacts differently and has different side effects, you surely will not have all of them and they won't all be severe. Maybe none will be severe. Regardless, everyone here is ready and willing to help others get through treatment.
I wish you the best.
I had some rectal issues but I have solved those now. They were from the Incivek so you won't have to worry about them. I also had pretty severe nausea and bloating but now I am on Zofran and that is taking care of the nausea and bloating (and several other symptoms). Those were my worst symptoms/side effects. I do feel tired and I do not have much energy. I do have some muscle fatigue and some general malaise. I don't have much energy or motivation.
My labs are pretty good. Nothing is in the danger field. Yes, my numbers all dropped, but they are either still in the normal range or very close to it.
For me, the anticipation was the worst. I expected to get all kinds of horrible side effects. I did not. I got some, but none that have not been manageable.
While I am on treatment, I think it would be difficult for me to try to hold down a physically and mentally demanding job like I used to have, but I am 65, not 20 or 30 or even 40 or 50. I was already retired when I was diagnosed. Even if I was not on treatment, I would not be able to continue to do my former job.
I agree with the others that most people who are posting are posting when they do have problems and when they need some suggestions and remedies for managing the side effects. Most people are not posting how great they are doing. Many people who are doing fine, just don't come to forums seeking help.
I have 10 1/2 weeks done and 37 1/2 weeks to go. Luckily the Incivek is finished in 1 1/2 weeks. Barring some life threatening side effect, I am going to continue treatment for the full 48 weeks and hopefully be rid of this virus. I don't want it to do any more damage than it already has done.
You can do it too. While everyone reacts differently and has different side effects, you surely will not have all of them and they won't all be severe. Maybe none will be severe. Regardless, everyone here is ready and willing to help others get through treatment.
I wish you the best.
i'm a G1a treated with SOC for 48 weeks. for the first 7 months or so, my sides were manageable. mostly nausea (took zofran), fatigue, dry raspy cough, itching (clobetasol ointment) and shortness of breath (i have asthma). i generally took monday off as i did my INF on fri nite. but i was able to work the rest of the week. i cleared at 12 weeks. as i went on, the anemia got worse; much worse and that was the start of my fall. i did the procrit thing until i needed 3 pints of blood. after that i felt GRRRRRRRRRRREAT. but then my WBC tanked and i got ear, throat, chest and kidney infections. so i limped across the finish line at 48 weeks. but i kept a positive attitude and forced myself to do the things i did prior to tx. the one good thing from treatment is brain fog, cuz it's all a blur now....bwahahahaha....you can do it..just believe in yourself and don't let the horror stories sway you...good luck
Remember that what you *see online* may not be representative of the treatment population as a whole. There are plenty of people who never have serious enough issues to need symptom relief or a support forum ... there is some truth that folks who write usually do so to complain, not to commend.
I've seen many people come to to forum, ask lots of questions, but post less as treatment goes on because they have few issues. What I do hear most frequently is that the anticipation is far worse than the deed. I actually remember one recent member saying they felt better, rather euphoric since starting treatment, and felt a bit guilty posting it :).
There's probably a fair number of people who feel fairly normal on treatment, but you can imagine it's not routine for people to pop in to support forums such as this and start a post "Hey, I'm on treatment, and everything is so normal..." and go on to describe their day ;). You might find a constant here and there, but I'd hazard to say it'd be much easier to find the variables :).
Hopefully some feel-pretty-normal folks will pop in. :) ~eureka
I've seen many people come to to forum, ask lots of questions, but post less as treatment goes on because they have few issues. What I do hear most frequently is that the anticipation is far worse than the deed. I actually remember one recent member saying they felt better, rather euphoric since starting treatment, and felt a bit guilty posting it :).
There's probably a fair number of people who feel fairly normal on treatment, but you can imagine it's not routine for people to pop in to support forums such as this and start a post "Hey, I'm on treatment, and everything is so normal..." and go on to describe their day ;). You might find a constant here and there, but I'd hazard to say it'd be much easier to find the variables :).
Hopefully some feel-pretty-normal folks will pop in. :) ~eureka
Do you have a start date planned or have you already begun trt?
As OH stated, side effects can vary greatly. I've never had the flu like chills/fever reaction from the interferon injection. Some breeze through trt with very few sides and others have a very rough time. You are fortunate that you'll be on SOC for only 24 weeks, so it will go relatively fast. You'll likely feel increased fatigue which is very common, but I've been able to continue to work, exercise, and do most tasks. Some days I look forward to hitting the couch.
You noted that 98% appear to have a rough time with sx. Remember that this is forum of those undergoing trt that are looking for support, guidance and help while having a difficult time. Many that have no problems or need no guidance don't both coming here.
Also, there's been a flurry of post from individuals focusing on the adverse effects of interferon. This is meant to share information, but can be overwhelming to new members that don't understand the length of some of those trts.
As OH stated, side effects can vary greatly. I've never had the flu like chills/fever reaction from the interferon injection. Some breeze through trt with very few sides and others have a very rough time. You are fortunate that you'll be on SOC for only 24 weeks, so it will go relatively fast. You'll likely feel increased fatigue which is very common, but I've been able to continue to work, exercise, and do most tasks. Some days I look forward to hitting the couch.
You noted that 98% appear to have a rough time with sx. Remember that this is forum of those undergoing trt that are looking for support, guidance and help while having a difficult time. Many that have no problems or need no guidance don't both coming here.
Also, there's been a flurry of post from individuals focusing on the adverse effects of interferon. This is meant to share information, but can be overwhelming to new members that don't understand the length of some of those trts.
yeah, I am type 2. I know that this seems to affect every person differently, which is hard for me to wrap my head around, ha...just too many variables I guess...but yet I keep trying to find a constant...I guess I have worked with engineers for too long!
You are genotype 2, right?
Most of the people on the forum currently on treatment are genotype 1, doing triple therapy.
As a genotype 2, you would be doing standard (SOC) therapy, not the triple therapy.
( I'm geno 2 doing SOC,)
Speaking only of SOC, I can say side effects vary greatly.
Please be aware of the differences when you look for information.
The new oral meds being tested look very promising and some have had 100% success rates for genotype 2 & 3 in trials.
OH
Most of the people on the forum currently on treatment are genotype 1, doing triple therapy.
As a genotype 2, you would be doing standard (SOC) therapy, not the triple therapy.
( I'm geno 2 doing SOC,)
Speaking only of SOC, I can say side effects vary greatly.
Please be aware of the differences when you look for information.
The new oral meds being tested look very promising and some have had 100% success rates for genotype 2 & 3 in trials.
OH
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