Are there any real bad side effects besides the norn example brain fog and the flu syptoms. Could taking pegetron injections have regretable effects, Im starting injections soon and want to know as much as possible about these injections. My doctor just gave me brochures about the injections and the info is basic at best. I want to know can the stuff kill you possibly put you in a coma things to this nature. I know the up side to taking the medication, but I would like to know if there are any down side to the injections. thank you Steve
I remember before my first shot I thought about making a will or something, I was so scared I was going to die or turn into a frog at the very least! I looked around and waited for something to happen. Nothing did until the next day when I had chills, aches etc. You never know how the shots will hit you. Everyone has different reactions to them. So while yes, there are sides (sx) with interferon, it is doable and not as scary once you get through that first shot.
I can relate to that fear as well. Well I started I thought I would do the shot and possibly die right after. I think we all think something dramatic will happen. I ask my tx nurse and she said in 15 years she has never heard of it. You are using
Interfuron which your body makes naturally (not quite the same)
so you should not have any immediate. Again depends on the person. I found I dont feel anything from the shot, it is the next day I have muscle aches and pain. Take whatever your doc recommends, tylenol or alieve and drink as much water as you can. The more water the better, it will help with the sx.
The side effects are tolerable for me. Just inconvenient with the fatigue, brain fog, & some body aches from time to time. Not unbearable.
I think the stress I put myself through BEFORE starting treatment was worse for me than the treatment itself.
I also want to add that the treatment beats the alternative.
Best of luck!
Fatigue, body pains, strangeness, and brain fog I could have handled better but I went into a depression unlike anything I have ever felt. By the 5 th week my Doctor tried as hard as he should to get me to take anti depresants. I said no mainly because I am an addict in recovery and did not want to add more drugs to my already fragil mind. It was very difficult
If the effects are mild at the beginning, they may get stronger as you accumulate the chems, similar to taking mood changing or anti depressant chems. It takes a while. My main recommendation is "listen to your body" don't try to do more than you can. I missed some work 4-6 months along and was a couch due every weekend, My yard looked like hell this summer. So what....I am alive and have got this done, Feels good not drinking beer too!!!! (40 years)
I know 2 people that have detatched retinas from it, and my husband has 2 patients that will be on antidepressents for the rest of their lives. The other HCV thread I'm on, the people seem to agree that if you have a weakness in your body, it will excentuate it. So if your thyroid is low, it will most likely go lower.
BTW, on doing research, one of the ingredients is the same stuff as antifreeze, polyethylene glycol. Eeks! I don't know how they make it 'safe' for human consumption, but I would like to know.
just tuned in. am starting treatment in March, a bit worried but will handle whatever comes cause it is definetly better than the alternative. All of your comments really help in understanding, more than all the paperwork I have accumulated on this. Thanx . Only thing that spooked me really, was reading of the 2 people having detached retinas, since I had one in my left eye at age 5, and have next to no sight in that eye.Would be just about right for my luck to have the right eye get one! Thanx again all. Kari
If, around week 8, you feel really sick - worse than what the side effects lead you to believe you should feel - I would recommend asking your doctor to do a blood test for ACE markers in your blood. It can be an excellent indicator of autoimmune diseases due to the interferon.
I fought the brain fog by playing online scrabble. It was interesting to watch my score go up and down over the week. The two days after the shot I always lost! But it seems to have worked. I only had to do 3 months of treatment but am still here the first Thursday without a shot, but feeling like there ought to be something. So I've been reading about the withdrawal from interferon but the evidence is sketchy. Well see what happens tomorrow.
I don't know the answer to your question about whether you have to be clean from drug use for a certain amount of time. That's a difficult and individulized answer, at least it used to be. I'm sure there may be certain guidelines that need to be followed especially if you are considering going through a clinical trial to treat HepC. Maybe someone else on this forum knows the answer. Also, are we talking about IV drug use, what kind of drugs etc. Here's a link, maybe it has an answer or like I said maybe someone knows the answer. You said you been clean for a little bit over a year, that's good and maybe you can get treated. later
I think the benefits of this therapy, (trying to heal your liver from this hideous and socially frowned upon disease), far outweigh the side effect illness.
I am in week 17 and have done a PCR viral load check 3 weeks ago, the virus is already undetectable. I have to finish the entire course of therapy of 48 weeks though. I do have side effects, mostly fatigue, anemia, sore muscles. I'm taking anti depressants which I recommend during this to try to keep your head on straight so to speak. The risks of not trying to find a cure are well documented. Liver cancer or cirrohsis are not pretty ways to die. I think the medicine does have side effects, but the chance of a cure is well worth the menace of the side effects. At least attempt it, and try to stay with it, the beginning shots are the worst, after it becomes easier, but the fatigue does stay on. The other side of the coin might be a lot uglier if you don't try to get cured.
I appreciate all of your comments as I must start these shots within the week or 2. The only thing that I am reading for the first time is "brain fog." I was an addicted backgammon player on line for over 9 years and having hearing the scabble story do people recommend to get yourself involved brain wise to keep the thinking straighter? If so I will do that from day one if misery allows me to or as soon as I can. Second someone share what the first week or two will be like as this whole thing has blown my mind away. The only reason I feel sane at this time is that I have a 18 month old grand child who is the love of my life and my immediate family is doing everything possible to support me mentally right now. I am seeing a physcologist already who has me on an anti depressant which I feel is helping me deel with the trauma ahead more easy. Someone just let me know what to expect. Thanks.
Email me at ***@**** or ***@****. Thanks all and hope that all of you find the physical help you need to get well from this ugly disease.
I just had my first shot this afternoon and I gotta say that rarely in my life have I been so sick. I think I could tolerate the aches and pains and the chills and fever but I have had a headache that is just a killer. It's fading a bit now after repeted doses of tylonal but I'm unable to sleep. I hope that these sx diminish in the comming weeks
Drink a LOT of water and it may help with your headaches. You can become dehydrated on Peg because its a strong diuretic. Best drink 2 cups of water in the morning and another cup with each visit to the bath room. That's enough to keep you hydrated. I found you also need to drink water in the evening to keep from getting the headaches. Nothing seems to be able to prevent the hourly or 2hourly visits to the bathroom. I'd stay off the Ibuprofen because you will have withdrawal but its effective for headaches and body pain.
Mental side effects I had were foggy thinking and crankiness. I'm still cranky 2 wks post completion of 48 wk treatment. Still a little foggy but I expect that to reduce.
It takes a while to recover your red blood cell count so you still feel weak for a while after the treatment.
I had no significant depression; I took anti-depressents. You can get some without sexual side effects. Depression gets you if you dwell on things and avoid exercise. Go for a walk and you will feel better. You may have to walk a little slowly but doing anything productive will improve your self-esteem during this difficult period.
Regarding being clean: Yes. Get clean and stay clean. Quit smoking and drinking. Bathe regularly too; it will make you feel better and helps with the muscle aches.
The people who are habitual drug users seldom seem interested in getting treatment; they are committed to self-destruction.
Steve 53 years old, a little overweight but negative at week 50
I completed 48 weeks of treatment. It failed. I attribte the failure largly to the fact that I was 100 lbs over weight and very unhealthy. The side effects were terrible. I did have a good support system in place, if not for that I would have bailed on the teatment. I suggest seeing a naturopath during the treatment, proper diet can play a vital role. Have a hobby you can do which requires little physical exertion, it really helps to keep the mind occupied.
I am now using alternative medicines which are keeping my infection in check.
I wish the best of luck to all on your journey
have been on pegetron since dec and went for a check up feb and said not showing a difference, have to go for another trip to hospital and bloodwork in march,
anyone know if this is common not to show after 6-8 weeks, hoping for better results after the 12 weeks
If this is any help...i have no side effects...just mild rashes at injection sites which i have under control....and im on triple therapy...boceprevir/peg/riba....i went UN at week 2 after taking the boceprevir...there was 4 week 'lead in" with the peg/riba..so i actually cleared at week from the start of the trial...MOST people dont get sides i have read
The brain fog really scared me. I am working on a combined BS/MS and really did not want that particular issue while working on my degrees. I decided to get it over with while I'm still an undergrad. Of course I will be taking my last 2 courses at the Masters level while I'm still on treatment if I make it that far. So far, I'm doing OK in my classes. Brain fog not an issue so far 4 weeks into it...
I am new to this support community. I've never heard of brain fog.... however, I did loose my eyesight at 10 weeks of treatment. that was NOV 08. It is Mar 09 and my sight isn't near normal. I am on predizone to keep the eye swelling down but every time they try to wean me off.... I go back 5 steps.
I know the harsh side effects of this treatment and if it wasn't for my loss of sight I would have completed my treatment. Since I got off the treatment my Thyroid is out of wack and am on pills for that. My virus load is higher then pre treatment. I tried and it just didn't work for me.
What's next for me??? Who knows, wait for a new treatment with no interferon.
I wish all the best and good luck.
I start this treatment on Monday March 30th. I am scared to death. I know I have to quit my job because I will not be able to move my Cancer clients around due to the possible body aches and mind foggyness. I can't help but to wonder if I will be able to still care after my 1 yr old and 2 and half month old. My doc. told me today that i probally won't be able to play with my childern for a while. I know the treatment is worth the side effects. Maybe I should be greatful my childern are young enough to not remember this. I have prayed like I have never prayed in my life that my side effects are minor and that neither of my childern have to go through this. My hep c wasn't found until my second pergnacy. I have been clean for almost 9 yrs now, and also learned today that my lungs are on the verge of cancer. This scares me even more.
Are you serious that your doctor said you couldn’t play with your children while on treatment? C’mon! You’re joshin’, huh? Of course you can play with your kids! You might get a little tired, but jeez…
The majority of the folks that undergo treatment continue to work; although a lot of them work on a reduced schedule.
Yes; the manufacturers can help with the cost of drugs if your income qualifies you. Tell us a little more about yourself; there are people here that can help you navigate through the maze.
Bill is absolutely correct... you can play with your kids and work. I have a 4 year old. I took my injections at night so I would sleep through the worst of side effects. After being on treatment for a few weeks I noticed that if I didn't drink A LOT of water I got migraines that were so unbearable. ONLY then did I need help caring for my child.
I had to stop treatment due to a side effect that is rare but I lost my eyesight. Plus I also have notable hearing loss. My eyesight loss from what a few Doctors have agreed upon was the interferon. So have your doctors keep watch of any swelling in your eyes. I noticed my eyes watering and red... Like I said, I would still be on treatment if it wasn't for my loss of sight. FOR ME, the treatment was working.
I wish you the very best.....and drink a lot of water!!!!!!!
I began treatment in September '08 and have probably had every side effect imaginable. I have had chills, fever, aches, fatigue, migraines, rashes - including one around my eye that had the doctors totally confused - losing my hair, body hair growth has almost stopped, sores on my tongue, things taste funny - sweet things and cold things burn my tongue - itchy skin, very erratic mood swings - one minute I'm laughing uncontrollably and the next I want to kill everyone I see then i start to bawl my head off over stupid things like t.v. commercials (my kids laugh about that) - I also have become extremely anemic - took folic acid for a few months - didn't help - am now on eprex injections once a week. I also have a really bad dry cough that doctors don't do anything about because there is no fluid in my lungs that they can hear. Right now the cough seems to be the worst side effect - the others are tolerable and somewhat manageable - but the cough makes me short of breath and most nights I can't sleep from coughing - I go through about 30 cough drops a day - anyone else have this problem? Oh I also have extreme vertigo off and on - had to quit my job because of it. I have found that the side effects come and go - sometimtes they aren't so bad but at other times they feel like the first week.
my viral load was over 2 million when I began treatment - at 6 weeks it was down to just 12 and at week 12 it was undetectable so all the side effects in the world are worth going through treatment and getting rid of this virus. I think that there are worse things than the side effects - one being the way people treat you. I have "friends" that don't speak to me right now. I don't do drugs - my ex became a user got abusive with me and I bit him - however, on a daily basis if I tell people that I am on treatment for hep c they automatically jump to the conclusion that I am some big drug user - even my own doctor told me to stay off of the IV drugs from now on - wow did he ever get an earful from me. I'm tired of being treated like I should be in hiding, I'm tired of being judged - I have nothing to hide and I have nothing to be ashamed of.
I know what you mean by everyone looking at you as tho you are a drug user because you have Hep C. I am in the medical profession... I am not sure how I got hep C and at this point, I really don't care. I have it and I have to deal with it. My husband and I have been married for over 5 years and together for close to 8 and he is HEP C NEG.
The fearful questions about peginterferon take me back. I've been on tx 20 weeks and my beginning fears seem silly now. The very worst thing that peg can do to you is not brain fog (odd term...you really just feel 'weird' and self-preoccupied. Everybody has dumb moments and we probably had them before tx, too). The worst thing that peg can do to you after continuous use for a month or 2 is destroy all of your neutrophils, the bacterial infection fighting white cells. Below 500 you are in trouble. Lower still you'll get a bone marrow infection, be hospitalized for weeks and dropped out of treatment. Always, always go for your bloodwork. Neutrophils can be easily brought back up with rescue meds but not unless you get the bloodwork to find out where you are.
Welllll....you might grow excessive body hair, get a liking for raw meat and howl at full moons...Oops! Wrong site...I thought this was the curses and hexes forum! JK JK LOL
Seriously, its okay to be concerned and weigh your options. I almost didn't follow through with treatment. I tried anything and everything before hand, just to be sure that the only thing that would/ might truly fix it was the Ribavirin/ interferon combo. It is pretty horrible stuff, but it worked for me. I am now clear of the virus and have been undetectable for a year, and I finished treatment 8 months ago. I feel really good and only had a problem with my thyroid that took a while to return to normal. Good luck with your decision and may health be yours...(((((HUGZ))))))~Melinda
I have been off the "poison cocktail" for nearly 2 months and I was only on it for two months.I thought I had done my homework as far as side effects and figured I would give it a try.I have never been that sick, experiencing nearly ever physical side-effect possible. I was so sick I didn't realize what was happening to me psychologically.
I am bi-polar but for the most part have had that under control for a few years now. There was no way I could have foreseen what this would do to me.
How serious? This serious I am waiting my first appearance in Court for "Unlawful Confinement" and "Assault"
I am a woman 56 years old with no history of violence or any other kind of aggression.
I was in the hospital for suicidal ideation when I snapped, I followed a nurse into the medication room and threatened her with a pair of scissors, demanding enough medication to kill myself.The whole incident only lasted
a few minutes but it has certainly traumatized the hospital staff and myself. No one knows quite how to treat me now as I am a very likable, friendly person and I don't know what will happen with my charges, if a judge will understand this was a residual result of my "chemo"
I spent nearly 3 weeks in the hospital in the psych ward getting me balanced and ready to tackle the world again.
I was delighted to find this sight, I wish I had known about it before my treatment.
I am anxious to find out if anyone has had this serious a consequence.
I’m sorry to hear about your experiences. You probably want to re-post this ion a new thread, by clicking on the ‘post a question’ green button near the top of the page. Your message might get lost mixed in with others in this thread.
Hi, I'm a 24 year-old seminarian and I will be undergoing treatment soon. Thanks for soothing my fears. As for the negative side effects and the horrible experiences posted, I'm simply trusting and believing God for healing, by any means necessary!
First i would like to say im from canada... i cannot find any rescources online for ontario... everything just keeps refering me back to the US :( I am a 21 year old female.My boyfriend that i have been with for 5 years has just been diagnosed as HCV Positive Genotype 1. Ever since i met him we have been looking into his health. He is turning 24 on May 11th. He is 6 feet and about 120 pounds. He eats alot...Since i have met him i knew something was wrong. He get severe stomach pain, Chest pains, Soar legs, diarrhea, constipation. No matter what we have done to make him gain weight absolutly nothing works. He is on a healthy diet. We have tried suppliments to fatty foods to everything. I would constantly force him to go to his dr. all his dr. ever said was that he had a fast metabolism and was experienceing growing pains. Back in 1989 he recieved a blood transfussion because he was very sick. which his family doctor was aware of. Last month he had a friend that works for a gastro (something dr. im sorry i forget the proper name) She booked him for an appointment to get a second opinion. When he went in there and was discussing his past history as soon as he mentioned blood transfussion in 1989 the dr immediatly sent him for a Hep C test which unfortunatly came back positive. This is all very new to me and him and right now he is really depressed about the situation so im the one trying to do all the research. Im just so angry inside because no matter what website i go to it states about the high risk of infection with blood transfusions prior to 1992. I cant believe that his family doctor would never even consider giving him a test.20 years later this exact year he just found out. He went for his Liver biopsy on April 7th. We have not recieved the results yet because he set up an appointment with the liver specialist right after his birthday because its so close. (which may i add his family dr. had no part in the referal to either Dr.'s) I have so many questions and I do not know anyone with Hep C to help me. I went out and bought a book, but the lady who wrote it had genotype 2 and it was acute hepatitas. I believe he has had it for so long and untreated it is probably chronic by now if not something worse :( the last appointment he went to the Dr had told him that he wanted to get him ready for pre-treatment as soon as possible. I dont know much about it other than he is Genotype 1 and its most likely Chronic by now and that is viral load was over 3 million. Would this be considered Patient negligence? We dont even feel like we can go to his family dr. because he is really useless. we went in his office for an appointment one day and was reading us another patients file until my boyfriend stated that he had never gone for any of the tests he was talking about. Is there certain things he should avoid eating? is Liv-52 and Milk Thistle any good? Does anyone in here have Genotype 1 and treatment has worked for them? how bad is treatment? thank you all so much for the time to read and respond to this i really have no one else and i need to help him as much as i can.
I started my treatment 8 hours ago and had no side effects at first ...about 6 hours into it I begain to shake and my joints were very sore .. hot bath really helped and then I covered up on the couch and the shakeing subsided . the worse was over in 3 hours and now im able to sit here and type this post .. small price to pay to be hep c free :)
I had the same experience.
I just Started treatment the day before yesterday. I was fine for about 8 hours after the first shot and pills (Riba/Peg). (Was even considering going for a run). Then in about a half hour time after that, I very rapidly developed a 102F+ fever!
I was shivering and freezing in a warm room, fortunately the worst was short lived. I have had a low grade fever about 100F since, very achy muscles, frequent urination at night. I am afraid to take anything for the fever as I don't want to interfere with any of the meds I am taking.
late 40's, and in good health.
HCV+ type1 for about 30 years, (just found out I had it 6 months ago)
light to moderate drinker that whole time, but somehow my Liver is realtively healthy according to biopsy.
I have been taking interferon for a high platelet problem and mostly experience bad headaches and muscle aches. It also makes me really tired all the time, although my platelet count has improved and is back to normal.
i just started my interferon treatment 2 weeks ago i need to be on the treatment for 24 weeks my side effects consist of headaches, loss of sleep loss of appetite, im really tired. i have a hard time eating healthy. i was a drug addict for 12 years. im very nervous and hope that this treatment will work for me. i have been able to work my full time job during my treatment so far but as for energy i have none.
You should be just fine you are only treating for 24 weeks so you have it very lucky. For now, just eat what you can you can always work on eating healthy again later when this is done. Make things as easy as you can for youself and it will be over before you know it and you can move on with your life.
hi, im doug, im blessed due to complete surrender.....sept. 2007..6ft4in...95lbs..cant stop...any of it...50,..days left only..into a typical 12step.... then...THEY...ATTACKED...all of em..treatment, doctors,hospitals,....and my most favorite...her name is CHERYL, she is.....umm..a therapist...yup, crazy head type...I..told CHERYL, YUP...EVERTHING....and its now Jan.2012, 1 injection left......never had pain that was so enjoyable, CHERYL prepared me, helped my mind tolerate swings..mostly towards self and earthly awareness..Advice.....1-Get talking to your resources at your care center....B4! you even consider this..then get your scrip...go2.. Safeway(7 times airmiles!).retreat from conflict..ALL of it...cant do this/? took 3 years 2 decide to go on to live(r)..in the meantime..DO NOT DRINK..its fuel for the virus..In closing..ive seen the effects of not being prepared and also doing nothing...IF i kin do it after 40yrs of hard drinkin..well i believe so can all..giver4liver.enjoy the exp erience..its worth it in the end....Good life to All....douglaseugene..Jan,2012..God bless.
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