Medical Forum / Diseases and Disorders / Hepatitis / September 2006
Newbie: treatment side effects?
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Caesar - 17 Sep 2006 03:07 GMT Ok, you've been diagnosed with Help C and the doctor wants to begin the accepted method of treatment of Interferon, so what is one to expect? Is the shot used in conjunction with something else and I have read posts where people say they go "crazy" and all of that during treatment, some must stop it and so on.
Would someone take the time to explain all of this to us newbies, both who post and who are afraid to, so that we get a general idea of what to expect and/or could happen, in detail?
I will be seeing the doctor in a few weeks, I hope. I would like to know some of this so that I can ask the right questions and have some knowledge before I see him again.
Thanks, Caesar
Burke Gilman - 17 Sep 2006 04:04 GMT > Ok, you've been diagnosed with Help C and the doctor wants to begin > the accepted method of treatment of Interferon, so what is one to [quoted text clipped - 12 lines] > Thanks, > Caesar Standard of care today is subcutaneous injection of interferon once weekly (pegylated interferon is good for a week) and oral administration of ribavirin (pills) twice daily. Both of these powerful antiviral drugs together comprise the intensive antiviral chemo now used to treat chronic hepatitis-c (HCV) infection. Both drugs are associated with numerous possible adverse events.
Some side effects are common to most HCV patients receiving Tx. Some side effects are quite rare. Other side effects occur maybe half the time. Fatigue is probably a universal experience, for example. Death is extremely rare, for example. Clinical depression that requires antidepressant medication is not unusual, for example.
Both interferon and ribavirin normally cause mental side effects and both normally cause physical side effects. It took me a while to better understand which drug was causing which side effect, but it doesn't necessarily matter very much. The topography of the reactions can vary a great deal from individual to individual, depending in large measure on your genes -- it's a genetic roll of the dice as they say.
Chances for successful treatment strongly correlate with the particular genotype of the virus you are infected with. Also, the treatment duration and dosages ordered for you will depend a lot on the genotype. Your medical history can also help predetermine what you might expect, and to help you and your care-provider choose appropriate adjunct therapy for dealing with side effects.
Bottom line, it's good to hear you are planning to go after this. I believe its generally best to get started with Tx as soon as possible. I recommend you do some Google searches on HCV keywords to learn more as you approach your Dr. appointment. Others who post here will probably chime in with more info for you.
Welcome to ash-c. -bg
anonymousone - 17 Sep 2006 04:06 GMT > Ok, you've been diagnosed with Help C and the doctor wants to begin > the accepted method of treatment of Interferon, so what is one to [quoted text clipped - 12 lines] > Thanks, > Caesar Side effects can range from almost nothing to very severe.
You need to do a lot of reading. Here is a site that I like that can answer a lot of questions.
http://janis7hepc.com/
flifla - 18 Sep 2006 22:57 GMT I am one of those people who always gets the "Possible Side Effects" listed on the package. Long read here:
At the beginning of treatment, I was unable to perform the most basic tasks. My first shot I came down with a terrible headache and feeling of sadness and tiredness. I felt that just opening my mouth to talk was itself a huge task. I felt just AWFUL. I needed help to do the most basic of household tasks. I had a funny taste in my mouth. I sweated at night and felt hot and cold. I became nauseuous. My body hurt all over, in a weird way. I felt as if I had been exposed to Uranium! As the months went by, I was able to make do and got my energy back. Then new sides started. Hair loss- big hair loss. Itching. Crying (anti depressants- get on them now! before it starts!) Rage- get on something like Ativan or else you could get into major fights- not kidding. Pale pale skin. You will turn "blue-ish" and look 15 years older. You will have aches and pains. My headache and backache have never gone away. I simply got "used to it". Extremely dry skin. Your teeth might fall out. Not kidding. I have seen major teeth changes since TX. Sleep with your mouth closed. Use Maalox as a mouthwash- the chemical reaction helps the moister content? in your mouth. I have been on treatment now for 6 months and my side effects have changed. You will find that each month or so the complaints will range from one thing to something new. I now have horrible leg cramps, fungal issues on the skin (got an RX called Alcortin, a cream) the fungus gave me sores on my scalp and itchy-ness all over (nice, thinning hair with SORES) and my eyesight has gotten blurry. Forgetfullness: you will forget what happened yesterday, last night, or entire conversations. You might get lost driving on a familiar road.
I have to say, I took temporary leave from work. I have since gotten "better" and returned back to my same old job. I am debating as to whether to get on disability again. The frequent Dr appointments you have to show up for are a real drag, and sometimes your Dr might call you to "come in rught away! Your white blood cell count is low and you need a Neulasta shot!" try telling your employer you suddenly have to leave. It's hard. I HAVE read from some on treatment that they have little to no side effects. I really don't know how this is possible! Not with what I am going through, and the very nature of the medications. Good luck asn STICK WITH IT. Although I have been through real hell here, I am determined to go throught the whole year.
> Ok, you've been diagnosed with Help C and the doctor wants to begin > the accepted method of treatment of Interferon, so what is one to [quoted text clipped - 12 lines] > Thanks, > Caesar BlownAway - 18 Sep 2006 23:46 GMT I am on my 5th month of tx. I lost 65% of my hair and 12 lbs. l feel leg and muscle pain more than ever. I started the first 2 weeks with very mild effects.. I thought the whole treatment process was going to be like placebo side effects. Then at week 10 or so I started to feel the harsh reality of the treatments. I am gradually feeling better with diet and mild excercise. On the 10th week I was tested and found undetectable for that test. genotype 1a 10 million viral load. .
Wish you the very best.
> I am one of those people who always gets the "Possible Side Effects" > listed on the package. Long read here: [quoted text clipped - 56 lines] > > Thanks, > > Caesar elmoemerson@webtv.net - 19 Sep 2006 01:20 GMT Great news, Bugsy!! elmo ////////// I am on my 5th month of tx. I lost 65% of my hair and 12 lbs. l feel leg and muscle pain more than ever. I started the first 2 weeks with very mild effects.. I thought the whole treatment process was going to be like placebo side effects. Then at week 10 or so I started to feel the harsh reality of the treatments. I am gradually feeling better with diet and mild excercise. On the 10th week I was tested and found undetectable for that test. genotype 1a 10 million viral load. . Wish you the very best. flifla wrote: I am one of those people who always gets the "Possible Side Effects" listed on the package. Long read here: At the beginning of treatment, I was unable to perform the most basic tasks. My first shot I came down with a terrible headache and feeling of sadness and tiredness. I felt that just opening my mouth to talk was itself a huge task. I felt just AWFUL. I needed help to do the most basic of household tasks. I had a funny taste in my mouth. I sweated at night and felt hot and cold. I became nauseuous. My body hurt all over, in a weird way. I felt as if I had been exposed to Uranium! As the months went by, I was able to make do and got my energy back. Then new sides started. Hair loss- big hair loss. Itching. Crying (anti depressants- get on them now! before it starts!) Rage- get on something like Ativan or else you could get into major fights- not kidding. Pale pale skin. You will turn "blue-ish" and look 15 years older. You will have aches and pains. My headache and backache have never gone away. I simply got "used to it". Extremely dry skin. Your teeth might fall out. Not kidding. I have seen major teeth changes since TX. Sleep with your mouth closed. Use Maalox as a mouthwash- the chemical reaction helps the moister content? in your mouth. I have been on treatment now for 6 months and my side effects have changed. You will find that each month or so the complaints will range from one thing to something new. I now have horrible leg cramps, fungal issues on the skin (got an RX called Alcortin, a cream) the fungus gave me sores on my scalp and itchy-ness all over (nice, thinning hair with SORES) and my eyesight has gotten blurry. Forgetfullness: you will forget what happened yesterday, last night, or entire conversations. You might get lost driving on a familiar road. I have to say, I took temporary leave from work. I have since gotten "better" and returned back to my same old job. I am debating as to whether to get on disability again. The frequent Dr appointments you have to show up for are a real drag, and sometimes your Dr might call you to "come in rught away! Your white blood cell count is low and you need a Neulasta shot!" try telling your employer you suddenly have to leave. It's hard. I HAVE read from some on treatment that they have little to no side effects. I really don't know how this is possible! Not with what I am going through, and the very nature of the medications. Good luck asn STICK WITH IT. Although I have been through real hell here, I am determined to go throught the whole year. Caesar wrote: Ok, you've been diagnosed with Help C and the doctor wants to begin the accepted method of treatment of Interferon, so what is one to expect? Is the shot used in conjunction with something else and I have read posts where people say they go "crazy" and all of that during treatment, some must stop it and so on. Would someone take the time to explain all of this to us newbies, both who post and who are afraid to, so that we get a general idea of what to expect and/or could happen, in detail? I will be seeing the doctor in a few weeks, I hope. I would like to know some of this so that I can ask the right questions and have some knowledge before I see him again. Thanks, Caesar
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Caesar - 19 Sep 2006 01:40 GMT Will the hair loss return after treatment?
Caesar
greyhackles - 19 Sep 2006 03:19 GMT >Will the hair loss return after treatment? > >Caesar I don't know if my case is prototypical or unique (well, I know it's not "unique") but it's not like I actually lost hair follicles. Rather, the hair shafts became so thin over time - and desiccated, no doubt - that the "coverage" was not only reduced (due the thinness) they also broke easily. Heck, a restless night on the pillow about 4 months into therapy could result in dozens of helpless victim hairs. Not to mention what was left of my naturally very curly hair went dead straight in the offing.
But...In a little more than two weeks, it'll be one full year since End of Therapy for me. And all my hair is back to exactly where it was at the beginning of my little adventure. That doesn't suck :-)
If you start at it early, there is a hair shampoo/treatment that can be beneficial (and damned if I can remember the name right now). And switching to a silk pillow case doesn't hurt. And avoiding obvious aggravating factors (hair dryers, repeated washings, harsh shampoos) will all help reduce the impact...
Cheers
/greyhackles
Waterspider - 23 Sep 2006 08:15 GMT > Will the hair loss return after treatment? No. The hair loss will END after treatment.
elmoemerson@webtv.net - 19 Sep 2006 01:18 GMT Sounds par for the course, Flifla. Your description of tx so far is much the same as mine was. Hang in there, the best is yet to come. You've only got 5 months left, you're more than half-way thru. elmo /////////// Re: Newbie: treatment side effects? Here are MINE Group: alt.support.hepatitis-c Date: Mon, Sep 18, 2006, 2:57pm (CDT-2) From: kmakhl@yahoo.com (flifla) I am one of those people who always gets the "Possible Side Effects" listed on the package. Long read here: At the beginning of treatment, I was unable to perform the most basic tasks. My first shot I came down with a terrible headache and feeling of sadness and tiredness. I felt that just opening my mouth to talk was itself a huge task. I felt just AWFUL. I needed help to do the most basic of household tasks. I had a funny taste in my mouth. I sweated at night and felt hot and cold. I became nauseuous. My body hurt all over, in a weird way. I felt as if I had been exposed to Uranium! As the months went by, I was able to make do and got my energy back. Then new sides started. Hair loss- big hair loss. Itching. Crying (anti depressants- get on them now! before it starts!) Rage- get on something like Ativan or else you could get into major fights- not kidding. Pale pale skin. You will turn "blue-ish" and look 15 years older. You will have aches and pains. My headache and backache have never gone away. I simply got "used to it". Extremely dry skin. Your teeth might fall out. Not kidding. I have seen major teeth changes since TX. Sleep with your mouth closed. Use Maalox as a mouthwash- the chemical reaction helps the moister content? in your mouth. I have been on treatment now for 6 months and my side effects have changed. You will find that each month or so the complaints will range from one thing to something new. I now have horrible leg cramps, fungal issues on the skin (got an RX called Alcortin, a cream) the fungus gave me sores on my scalp and itchy-ness all over (nice, thinning hair with SORES) and my eyesight has gotten blurry. Forgetfullness: you will forget what happened yesterday, last night, or entire conversations. You might get lost driving on a familiar road. I have to say, I took temporary leave from work. I have since gotten "better" and returned back to my same old job. I am debating as to whether to get on disability again. The frequent Dr appointments you have to show up for are a real drag, and sometimes your Dr might call you to "come in rught away! Your white blood cell count is low and you need a Neulasta shot!" try telling your employer you suddenly have to leave. It's hard. I HAVE read from some on treatment that they have little to no side effects. I really don't know how this is possible! Not with what I am going through, and the very nature of the medications. Good luck asn STICK WITH IT. Although I have been through real hell here, I am determined to go throught the whole year. Caesar wrote: Ok, you've been diagnosed with Help C and the doctor wants to begin the accepted method of treatment of Interferon, so what is one to expect? Is the shot used in conjunction with something else and I have read posts where people say they go "crazy" and all of that during treatment, some must stop it and so on. Would someone take the time to explain all of this to us newbies, both who post and who are afraid to, so that we get a general idea of what to expect and/or could happen, in detail? I will be seeing the doctor in a few weeks, I hope. I would like to know some of this so that I can ask the right questions and have some knowledge before I see him again. Thanks, Caesar
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Waterspider - 25 Sep 2006 23:13 GMT > Ok, you've been diagnosed with Help C Waaaay better than being diagnosed with Hep C <g>
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