Hep C Discussion Forum

truleejulie · Member

RE: side effects of interferon and ribavirin

Mike · Senior Member

Simplify, I had the same sores during treatment. No matter what I did to keep my mouth clean and how many times I did it each day the sores kept coming back. Talk to your doc and see if it could be caused by Gastro Esophogeal Reflux Disease (GERD), more commonly known as reflux disease. There are treatments and I found the one that worked the best for me was prescribed by the Veterans Administration is called ranitidine which is more than likely a generic name. My wife said it's probably close to a drug called zantac which can be purchased over the counter. I'm saying this assuming your from the States. At any rate it cleared the sores in my mouth quite well and as long as I kept taking it I never had trouble again for the remainder of my treatment. Something I also had come along with the treatment was some horrible rashes in some interesting places. I found that treatment with ointment that has a high level of Zinc (desitin) helped. I don't qualify as a 6-monther. I was on for 72 months. Good luck with your treatment and God bless. -Mike

Simplify · Newbie

Hello again.

The worst for me so far, and I have not read many others having this side effect, is mouth/tounge sores. I'm finding out that this may be where the weight loss comes into play. I have been gargling with salt water, using sensitive toothpaste and Orajel mouthwash. It seems to have lightened up in the last week but the first week was very painful. I am suppose to be on treatment for 6 months to 1-year. I trying for the 6-months. What are my chances at that? Any 6-monthers out there? I can hardly wait to see what comes next! Good luck to you all - Your all in my prayers.

God Bless,

Simplify

James10500 · Guru

Mike ,

Thanks for the heads up on the Ambein. I try to take half the tablet or none at all, but there are nights like last night I had to take the 10 mg.

Hope you're doing well today.

Peace,

James

Mike · Senior Member

Hi everyone, During treatment and since I've finished I've been having a horrible time with itching and sores that won't heal. 1 to 2 showers/day don't seem to help much and it's driving me a little bonkers. One thing I found for itching and rash that seemed to help was desiden baby ointment. It's 40% zinc in the paste form and really made a difference for me. Beyond that I just toughed it out. The only other drugs I took were a couple of drugs for tumors on my adrenal and my pituitary glands and my antidepressants for the PTSD.

Be very careful on Ambien. I lost my job and had a car accident because I would actually become very "out of it" on the drug and have episodes where I would do things and never remember what or where I'd been. They used to find me wandering around the factory with a "lost" look in my eyes and far away from reality. Because of the risk they fired me.

Recovery from the tx is very slow. I'm 2 weeks out and find myself making very small almost imperceptable improvement each day. As I said the eczema and itching is going to put me over the deep side and it doesn't take much to put me on my bed for a couple of hours. Yesterday was productive in the morning but from noon to 5:00 PM I was out. Today at 10:00 I'm ready to lay back down.

At any rate I hope this post finds everyone doing well with their respective sx and please take care of yourselves. Remember to drink a lot of water, get a lot of rest and do something each day to take your mind off the sx. God bless all, -Mike

dragonfly · Senior Member

Hi James,

I use zopiclone for sleeping, cohydramol for pain, domperidone for nausea and hydroxicline for itching (better than anything else I've tried). Hope this helps.

Dragonfly x

James10500 · Guru

Hi Dragonfly,

So the sx I use advil, and ambien to sleep. I am going to my new Doc on 8/31, i'll ask him what else I could use. What do you use if you don't mind me asking.

I never really knew Peg-interferon was considered a chemo drug until I looked on chemocare.com and saw it listed. Perhaps I under estimated the toxicity of these drugs.

Peace

James

dragonfly · Senior Member

Hi James,

The side effects go up and down, I have my last injection on Friday next week and I am still getting them! The important thing is to get on top of them and medicate then it's not so bad.

Hope everything goes well for you at work.

Dragonfly x

James10500 · Guru

I Annie,

I hope you are feeling better today. Y'day was a rough one for me too. Not as intense as round one but almost, and lasted about 12 hours. It was helpful for me to know that each week is different as I was told here by you guys last week. First shot sx within 5 hours that were very intense, second shot not to bad, third shot sx next day pretty bad lasted 12 hours. But I did sleep well last night feeling ok now. By ok I mean ok by sx standards.

I road my bike before the sx really kicked in Y'day, not sure if that made it worse . But I can't handle being inside all the time anymore. I teach skiing in the winter and the unfolding of the Hep C was a slow process in the spring and summer, I never felt I could look for a job. Although my savings is being used to live on I feel lucky to have it to get me through this. I don't think I could work and do this. Massive respect for people having to deal with working and tx.

At work in the winter they are pretty egotistical and mean. I already am at odds with a lot of people who have big egos and are without the skiing skills to back it up. Those folks will jump all over me I know it already. I'm not really planning on telling any more people than I have, but the word is going to get around. I plan on bringing the information and giving it to them. Then asking them is a disease that kills 12k people in the U.S. every year sounds like a joke. Or not....lol; I am confused about it. The stigma is a burden no doubt. Its so strange that there is stigma associated with a chronic disease that effects the liver. Now if it were West Nile Virus, the response would be "oh you poor thing"

medusa · Guru

Hi Everyone, and Welcome to the forum, Simplify! Yes it would be great if we were given some useful and accurate information about these drugs prior to starting tx. I was given a flimsy leaflet by the hospital, aimed at 5 year-olds, mostly humorous cartoons with a brief mention of 'flu-like symptoms' and feeling a bit tired. It gave the impression that life could carry on as normal, even if I wasn't one of the mythical 20 percent who apparently get no side effects! I would have liked some REAL information to prepare me for this ordeal. Luckily I was able to speak to 2 friends who had already done tx, and I found this forum. How long is your tx, Simplify? I think you are wise to not do it the same time as your husband. This way you can look after each other in turn, and you will know what he is going through. You are not alone, we are all in the same life-raft, being tossed on the stormy sea.
Have a good rant, James! I'd happily crack a few of those ignorant, bigoted skulls along side of you, if I could get up off my sick bed, that is, but they better beware of the TX gang all the same! They never know when they might meet one of us out on the street tanked up on legal drugs. I wonder how they would cope with the ordeal of finding out they have HepC, and doing tx?
Hi Mike, I hope you are getting your stength back, and enjoying 'normal' life again. smile

Love Annie xxxxx

BJ · Guru

Gidday James,

Let it all out mate, at the stage you are at in tx, you'd be copping it pretty hard. I remember that blur that was my first 3 or 4 months. Definitely a few rants in me in those days. Tell you what, if I could get my hands on a few heads at the mome they'd make a nice alternative on shot nights.

Pretty tired now, bigots and stigmatists will get their come-uppance. Any prick that gives me a hard time at the mome willget it in spades fuggem

night
Berndan

James10500 · Guru

Marijuana is something I used to smoke on a daily basis. I was pretty bummed when I found out chronic marijuana use was bad for your liver when you have hep C. NORML.org has some pretty good information on it with links to quite a few studies. I've stopped smoking just to play it "safe". The studies stress chronic use not occasional use. But if you have chronic pain I guess occasional doesn't really work.

Stigma, I pity people who don't have an open mind and LISTEN. I've already had people tell me a blood transfusion (two) in the late 60's could not give you a disease today. Then I tell them yes it can and it's not uncommon for Hep C to be inactive for 25-30 years, and by the amount of damage to my liver i've been living with active Hep C for @10 years. You did drugs and shared needles. My response is believe what you want. If you begrudge someone for getting sick through IV drug use, or sex (HIV) you're not even worth spitting on. I feel pity for them they're so terrible and they don't even realize it. I don't need anything from them not their support or understanding, they're pathetic.

Thanks for letting me rant. The sx are there for sure mild depression, splitting headache, can't sleep, major dehydration, fatigue. One minute you're good next minute you're overwhelmed. I've got to make a choice I can either sit around and feel sorry for myself, or I can cowboy up. Easier said than done for sure, but maybe something good will come of it.

Peace,

James

-- Edited by James10500 on Saturday 28th of August 2010 12:45:22 PM

DGiga · Senior Member

Hi Simplify, Welcome to the forum. I am glad that you decided to join us. I'm sure you will find lots of helpful advice here. (Much better than the literature you were received. They tell you basics but you will learn a lot more from your own experience and others on the forum. I just did wk 19 and I am so proud. Time is moving on and I don't feel nearly as bad as I did in the first 8 wks. It does get better and there is "A light at the end of the tunnel". You will see it. I'm not saying the side effects (SX) are going away but you will find them to ease up. Then sometime out of nowhere comes a new sx. These meds (TX) have a tendency to change from time to time but you can do it. We are here is you need a question answered or just want to talk about how you feel. Your husband is wise to start when the weather cools down. I guess you found out that the heat doesn't mix with tx. The best of luck to both of you. Dee

-- Edited by DGiga on Saturday 28th of August 2010 01:59:39 AM

Simplify · Newbie

Hi everyone,

This is my first time writing on this website. I have been reading some of the different posts and I found it pretty interesting so I've decided to join. I am in my 8th week of treatment and it sucks! I don't think the literature I received was as revealing as it should have been as far as the side effects. I'm making it though. My husband will be starting his treatment in a few months. He is really dreading it seeing what I'm going thru. He works outside in the heat so we thought it best for him to wait until the weather cools down.

Write again soon,

Simplify

Mike · Senior Member

Brendan, Annie and Collette. I find it interesting Brendan and Annie you've had back issues. I had my first back surgery in 1990, then 1994, then January 2008, Then in Feb 2008 I broke my leg by slipping on the ice. By Sept 2008 I was fairly healed then fell 15 feet down onto my back and broke the L2,L3,L4,L5 vertabrae. I lost the use of my legs until December 2008 at which time they did laminectomy on 3 of the 4 broken vert. Then at the end of December 2008 I underwent surgery again because the original incision wouldn't heal. Since then I've healed quite well and am able to walk fine. I wasn't easy to go from all the back issues right into 72 weeks of tx Mar 1 2009. However, looking back now I'm glad I was able to do it. Like you Annie I have a high threshold to pain. I don't use pain killers at all and seem to do fine.

Collette, don't worry about the stigma attached to the virus. I've known about my hep C for 21 years and have tried to explain why I'm on this chem every time I've been on treatment. I finally became immune to people thinking I was a horrible person or dirty or whatever because of the reputation this disease has. I simply tell them, if they ask, that it's a virus brought on by exposure to tainted blood. Sometimes it's because of IV drug use and sometimes it's because of an accidental or in the case of many medical personal purposeful exposure to blood. I recieved my gift while serving in Vietnam. People immediately equate my exposure to IV drug use until I tell them It's could have been from tainted blood in a transfusion (back in the seventies they didn't know what hep C was much less to screen for it in available blood) or it could be the exposure of blood while dealing with wounded soldiers and Vietnamese people.

Did I use drugs in Vietnam? Hell yes I did. You couldn't live in that horrible place without having some form of escape. Am I embarrassed? No, it was a long time ago and is my business. How many people know I did drugs? My son and I, and when I told him we both teared up because we were afraid the hep C was the result of the drug use and it may cause me to have a shorter life.

The bottom line is I don't care where the virus came from. It's really my business and my real concern is dealing with it now. So don't be concerned too much what other people think and hang tough. You're going to be alright and along with the support of all the people on this forum you're going to kick the buggers arse.

Love ya,

Mike

medusa · Guru

Hi Brendan and Collette, Just to clarify a bit what I mean by natural and aquired resistance to pain. Everyone has a natural source of pain relief in the form of endorphins, released when you experience acute or chronic pain. Like artificial painkillers, they take a short while to start taking effect. They are released when you reach a certain threshold of pain, and in the case of chronic pain are released continually/ repeatedly. Some people seem to produce them more readily than others, and some have a higher pain threshhold than others, that's obvious. Like you, Brendan, I have had some pretty bad spinal injuries dating back 32 years. I found that the medically prescribed pain-killers had no effect on me, so as the pain never stopped, I had to find other ways to control it and live with it. That is how I have aquired a high resistance to pain. There are 1000's of ways to do this, but they all seem to involve accepting the pain instead of running away from it, and concentration of the mind. Exercise is a good example of this, and has helped me a lot. My spine is now quite deformed, and on tx, has developed severe arthritis, which I never experienced before. I'm not at all against artificial pain-killers, but have found that they do nothing for me. I also like to hold the idea of the stronger ones in reserve, as a last resort, if I ever need it.
Love Annie xxxxx

BJ · Guru

Gidday Collette,

Firstly, I must apologise for not welcoming you to the Forum, when I wrote last week. It was the night before going in for my monthly bloods and visit to the clinic, hence my calling it the bat cave etc; Also, I work during the week and am a bit of a grump at times, and probably just jumped into the reply without putting my brain in gear

Sorry to hear that you are having problems with pain, don't worry if you don't have Annie's 'natural or aquired resistance to pain', many people bring conditions with them to undergo tx, and require different meds that are compatible with tx to control those, let alone the added onset of pain many feel once tx starts.

In regards to sx's easing as tx continues, it is not unusual to have problems with sx's at different stages throughout tx, but it would be highly unusual if you suffered a large range of sx's all the way through tx. Generally speaking, sx's do ease as tx continues, but it does depend on whether the sx is directly caused by tx, or perhaps just exacerbated or brought to the surface by it.

What sx's in particular are you thinking off or suffering from ? And if pain is one you can't get any relief from, my suggestion to you is you find a general practitioner who knows what you are being treated for, but is happy to supply you with suitable painkillers, to address your problems.

I was on codeine and oxycodone for about the first 9 months of tx, and they didn't harm my liver to any noticeable degree. When I began tx, my liver was not in very good shape, and despite claims these drugs can't or shouldn't be taken during tx, exactly why I don't know, because my liver has recovered heaps while on tx to the point all indicators say my liver is 'normal'.

Now, in the last month or so I got off the codeine and oxycodone, because I was starting to have to take too much to control my pain problems, and I was concerned it would start to affect both my liver and perhaps my kidneys. I have since been placed on slow release patches of a better and more effective drug, that will not place my liver under anywhere the pressure it may have been under before.

I should qualify this by saying I have spinal problems, broke my back pretty badly 30 odd years ago, and pre-tx meds clashed with tx meds and would have been antagonistic to both my liver and tx. They had to be changed to codeine and oxycodone, which I might add, didn't work properly 80-85% of the time, and if my improvement in how I feel and my readings have improved since changing to something that actually works more like 80% of the time is any indicator, it was long overdue.

It is ironic in a way, but pain is probably a key contributor to why I took so long to clear the virus and why my tx is now for 72 weeks !!! I also had problems with white blood cells, that has been the main problem, but massive pain and large constantly growing doses of supposedly damaging drugs, couldn't have helped.

I guess it's in a long way of saying if you have pain that is causing you problems and is made worse by tx, seek out another doctor who will give you something that will work with tx. It is important you do this with a doctor who is aware of you being on tx, to be sure it won't interfere with tx.

On the marijuana damaging your liver by adding to the fibrosis issue, I have only read that recently, and I have to admit finding anything that says marijuana damages your liver, is very difficult. In its' defence, I know of quite a few people who smoked dope during tx, about half of them quite heavily, all attained SVR (got cured) and other than dope and a few headache pills, required little in the way of any other medication to control sx's.

Hope you are doing OK Collette, and that the sx's aren't too bad at this time. Nobody judges each other here, we are all in this together to help each other through this. Once again welcome to the Forum, I hope you enjoy your stay here.

Cheers,

Brendan

medusa · Guru

Hi Collette, You have a very french sounding name and last name, do you live in France, or another french speaking country (I'm bi-lingual). Tx is an abreviation for treatment, and sx is side-effects. There is a full list of abreviations, I think in the New Users or Knowledge Base section of the forum. I've learned on this forum that tylenol is the american name for paracetamol ( european and australian), and my doctor said the same as yours, to use only if the pain became uncontrollable. He also recommended 500 to 1000mg of paracetamol to be taken at the same time as the injection. I did this for several weeks, but found that it increased the dehydration and migraine, I am better off just drinking lots of water. I agree with you that, sadly, this is a disease with a lot of stigma attached, and it is difficult being open and honest about it. We don't need the ignorance and prejudice on top of the illness and the tx! You do not have to be lonely, you have found this forum, and we are all here to help and support each other through this experience. Many people on the forum use a variety of pain-killers, sleeping pills and anti-depressants, and some find this helps with the sx. I think that my natural and acquired resistence to pain has increased on tx, but then it was quite high to start with. You need to find out what works for you.
Love Annie xxxxx

oddog · Member

hello; thanks so much for replying to me, i am not sure what the tx is i am guessing that sx is side effects? also what is paracetmol? i was told that i was only allowed to use tylenol when really needed, most times this just isn;t enough. I find that this is a lonely disease, I am loath to tell people the exact nature of my illness because of the horrible stigma attached to this disease. I will keep on keeping on and get through this, good luck to you in your journey and thanks again for the reply. colette

medusa · Guru

Just thought to add that the legality depends on where you live. It is illegal here in France, but has been 'de-criminalised' in other european countries, and is also legally prescribed by doctors in others, for pain control, and patients on chemotherapy (though not necessarily the tx we are on). I'm not recommending or advocating the use of any illegal drug, just passing on information!
Annie xxxxx

medusa · Guru

Hi odddog, There seems to be a divergence of medical opinion on this. My liver specialist stated that he has seen no evidence of cannabis/ marijuana or tabacco damaging the liver, while he states that all pain-killers are damaging, and paracetemol is only to be used in real need. A hospital matron in charge of elderly patients, many doing chemotherapy, recommended home-grown to me, for controlling the pain and other side-effects. I smoke tabacco, which helps me a lot, but I don't use cannabis, I'm too anaemic, and it would make me faint. If you are going to use it, then moderation is advisable, and avoid the chemically produced 'super-skunk' super strong varieties!
I'm 33 weeks into tx, and for me the sx have not diminished, but they do change and come and go. They seem easier to cope with now, as I have learnt to adapt and accept this as normal. I don't need to use any pain-killers or other pills.
Welcome to the forum, and good luck with the tx,
Love Annie xxxxx
PS. Hi Brendan, Good to see you found a Batman costume that is not so restricting. I'll call in at the batcave later to see how you're doing. xxxxx biggrin

BJ · Guru

Gidday oddog,

Yeh' nothin' would be better than to lie back and toke on a joint or bong to ease the ol' sx's away, but there is the illegal part of it which makes it a pain.

Unfortunately I have recently read, that smokin' dope actually speeds up the fibrosis damage to our livers, so it actually is as bad as alcohol if not worse, in damaging a liver affected by HepC.

So smoling dope might make you think your feelin' better while on tx, but it would actually be making take the drugs for tx, a waste of time. Not good news, but it's back to the painkillers I'm afraid:(

Anyway, I'm off to the bat cave to let them suck my blood, fingers crossed alls well there, see you 'round biggrin

Cheers,

Brendan

oddog · Member

hi nikki thanks for the response, this is a lonely disease and I was happy to find a spot to talk to someone,

twinmom · Member

a friend of mine smoked while on treatment. he said it helped his nerves and his appetite. i dont know from experience for im a recovering drug addict who doesnt want to walk that path. i wasnt offended by your post. everyone deals differently. to each is own.

im new to treatment also so im not the one to give you advice on the sides easing up. im sure someone will b along to answer your questions.

good luck and welcome
nikki

oddog · Member

I am new to this forum and am happy to have found it, I just read an excellent post on the side effects and how to deal with them. I just did my 15th injection and I wanted to know if the side effects will ease off as I make my way to number 48? I also wanted to know if anyone has found any benefit to marijuana in easing the side effects? I would appreciate any insight on this as «i am ready to try anything.....I asked my healthcare nurse and he said that they could not recommend any illegal drugs, but that he wasn`t saying that it wouldn;t work, just that he could not recommend it, I am confused and anxious to get any info on this from anyone or if anybody could recommend a site to visit, thnks and I hope that I haven`t offended anyone in this site. oddog

Hep C Discussion Forum

Legal Disclaimer: