I have an employee that will start a six-month course of Interferon shortly. She has been diagnosed with Hep-C.
I did some Googling on the subject, and frankly; I’m horrified by the side effects reported by patients on the Hep-C messageboards. Many of the people posting their Interferon stories were unable to work during the course of treatment. The side effects mentioned most often were: dreadful headaches, dizziness, extreme fatigue, aching bones and joints, nausea, lack of appetite and itching skin. Oh, and lest I forget, hair loss just to sweeten the pot.
I would be very grateful to any Dopers that could relate any first- or second-hand experiences with Interferon therapy. Is it always horrible? Do the symptoms last for the entire course of treatment? How did you cope?
Secondly, if my employee (whom I value as a friend and a right-arm in my business) is unable to work for six months or longer, how can I help her to manage financially? Does anyone have links to some resources she could avail herself of? She is a single mother and the sole source of income for her household. Should I just “lay her off” for six months so she can collect the pittance that is known as “unemployment”? Or are there any other options?
I’ve been scratching my head over this for two weeks. She has the strength and positive will to get through the treatment, but I don’t want her to have the added stress of worrying about paying her rent and utility bills. Any advise would be greatly appreciated.
First let me thank you for being a decent human being and thinking about your employee.
I have been treated for Hep C, in fact I have been through treatment twice. Once with interferon alone and once with interferon and an anti-viral drug.
Different people react differently. I can tell you that it made me sick as a dog both times. It was like giving myself the flu three times a week. First for two years then for 11 months. I am not saying everyone reacts the same, we are all different. Some people I know seemed to adjust to the treatmwents over time and weren’t as ill, some didn’t. Yes my hair thinned horribly and I got a few strange rashes but those can be treated as/if they occur.
Depending on how she schedules her treatments and her reaction to them, and on the type of work she does your employee may be able to keep working, at least part time. Laying her off may not be the answer what will that do to her medical insurance ? These treatments are not cheap and without insurance there are many people who can’t afford them.
To learn more about Hep C (and the other flavors of hep) follow the link in my sig line, and feel free to have your employee email me at dkohb@yahoo.com if she needs someone to talk to, this is a scary thing to go through alone !
Violet, You can’t get disability with Hep C unless you are a non responder to treatment and reach end stage liver disease. Sadly by the time that happens many people die before the benifits are started. That sucks. But they are having better luck with people responding to the newer treatments.
Ayesha, thank you so much! I will direct my employee to your links. Kudos to you for surviving the treatment. I most sincerely hope that all is well for you.
May I be so bold as to ask if it effected a cure for you? I do hope so! From what I gleaned from the net, the six-month course has a high rate of (Gee, it makes you sick as a dog for six months, but it didn’t seem to work!) The stats I read said 78% of those undergoing the six-month treatment did not see an absence of the virus after treatment. The rates were much higher (favorably) for 12 month treatments. But, of course, the insurance companies don’t want to pay for that. And I have no control over that, unfortunatley. I do what I can, but I feel so helpless in her case.
I did reach remission with the 11 month bout of treatment, but then too I have a geno-type of Hep C that responds well (it’s not bad enough that there are several different types of Hep. C at least comes with different sub types topo. Some respond better to treatment than others) , As of July I was still clear, that was 6 months after the end of treatment.
Your employee will probably be put on the new pygelated (that is probably spelt wrong but it sounds right) interferon and there are some good reports out on that.
From what I understand (I could be wrong, that has happened before) 6 months is the recommended treatment with this new treatment.
For me treatment was 3 shots a week and several pills everyday. This may not be true of the newer treatments. If not then maybe she can do her treatments on Friday night and be able to work on Monday.
I think the harderst thing for me was dealing with peoples ignorance and stupid ideas. One former neighbor actually told people thay should not allow me to hold their babies. Grrrrrrr.
I can not tell you how wonderful it is to see someone willing to educate themselves about this and to try to be a help to someone else. You deserve a big pat on the back for that.
I worked with a woman who had it and did the 6-month treatment. Her hair fell out, she lost a ton of weight (she was 6 ft and dropped down to around 120 lbs.)and she was sick all the time. Ditto with my male friend. He was so sick from the treatment that he couldn’t work, and I think he finally quit the treatment because he was so miserable. It was devasting to his marriage.
Hepatitis C treatment is not for everyone. The risks should not outweigh the benefits. 4 of 5 people with Hep C tend to do ok if they avoid drugs and especially alcohol. Therefore one must be very selective about who to treat. I’m a firm believer that a liver biopsy should be done first to demonstrate that fibrosis is present, before interferon and ribavarin are started. Among a host of other criteria.
In the right patient, treatment can be life-saving. In the wrong one, it can be an expensive way to feel horrible for a long time without much purpose.
My SO is currently going through a similar problem, although his was caused by Hep B he got from a blood transufsion in an operation over 20 years ago. He has acitis(sp?) and they say the next step might be a TIP procedure for his liver. I have tried to find info on how helpful this TIP will be - but I can’t seem to find any info other than it is a commonly done procedure.
You can add depression and irritability and insomnia; I had those, along with the aforementioned symptoms; the worst prolonged sickness I’ve ever had. Actually, I just yesterday quit treatment with Pegylated Interferon and Ribavirin (an anti-viral drug) for Hep-C. My company turned me down for short-term disability, in spite of my obvious illness; so I was left to choose between personal leave (a month without pay, with no guarantee of keeping my job) or quitting early. In my case, the virus had dropped to zero (or at least, to undetectable levels) in my blood at the six-month mark, so it was probably okay to quit early.
Of course, the patient shouldn’t have to choose between keeping his job or completing the course of treatment.
I forgot to add: chills and fever, and a feeling of mental fuzziness and forgetfulness. Put them all together, it’s a pretty annoying package of side effects. Also, all the curl went out of what remaining hair I have.
My dad took interferon for a while and said it made him feel worse also. He didn’t go into much detail but he certainly was tired and irritable and felt flu-like much of the time. The treatment wasn’t working for him either so he quit. He just take vitamins and tries to exercise and watch his diet. There’s not much more he can do now. Best of luck to your employee/friend.
Qadgop, my biggest fear is that she will undergo treatment and not get the hoped-for results. She has had a biopsy, and it showed fibrosis, but not cancerous. This employee was ordered by her doctor to stop drinking, which she did two weeks ago. She began using Humolog(sp?) two months ago to control her diabetes. So she’s simultaneously trying to get the hang of injecting herself with insulin, and facing giving herself injections of Interferon on top of that. The poor woman also tested positive for TB. This just hasn’t been a good year for her.
However grim her test results and prognosises might be, I’m proud of the fact that she has started taking care of herself. She sticks to her diet, checks her blood sugars often and is taking responsibility for her health. I will support her in any way I can, because this is a life-or-death issue for her. Her liver values are very, very bad. I remember the day her doctor called her at work with some test results. She started sobbing while still on the phone with him and then broke down all together. I sent her home for the rest of the day. And I felt so helpless and impotent.
To all that responded to this thread, Thank You! You have been very helpful, and I am most grateful to you all for your input. Especially to Ayesha. Your links have been most helpful.
Well, I hope she does well. Needlesticks aren’t so hard to deal with, once you start. The most important thing she must do (at least as important as complying with the interferon/ribavarin regimen) is avoid alcohol. Hep C can be terrible for livers. Alcohol can be terrible for livers. Together, they are not double the risk, but an increase of an order of magnitude.
I forgot to mention, when you’re on the combination therapy (Interferon and Ribavirin) you have to drink a lot of water. Best of luck to your employee.
I was diagnosed with Hep C several years ago. I have decided not to go with interferon, since there are alternative treatments. I have been helping my liver with herbs, acupuncture, and healthy diet. I have not touched a drop of alcohol in 18 years. So far, it looks like this approach is helping. Since I started the acupuncture and Chinese herbs, my liver enzyme levels have dropped to near normal. (The liver enzyme levels are a measure of distress to the liver; when a liver cell is degraded, it breaks open and its stuff comes out, which elevates the liver enzyme levels in the blood. If a lot of them are degraded and you have a patch of busted liver cells, that causes fibrosis [scarring] which if it builds up too much becomes cirrhosis [seriously damaged liver].)
I had a biopsy three years ago; the diagnosis was “bridging scars,” which is not too bad but definitely not good either. The hepatologist I was seeing was one of the team that developed combo therapy which he was pushing on me. When I asked about my genotype, he said that didn’t matter, the only thing that mattered was to get me on the combo therapy. He was so pushy and arrogant about it I didn’t like his attitude and quit going to him.
Reading this thread has convinced me more than ever that I do not want interferon. I will try anything else before that. Oh, and I was turned down for long-term disability. I’m pretty well screwed as far as missing work. No, I need to keep working, no way around that. My family depends on me to work to support them. If I had interferon, I’d be a useless wreck. You need a year of it—but you won’t be able to hold down a job while on it—and your insurance won’t pay for it—so in other words, you’re screwed, plain and simple!
I seriously urge people to check out alternative treatment before resorting to interferon.
I don’t know all that much about this, and I defer to the divine Ayesha (Hi honey!) on this issue. All I can tell you is that we have had three patients in our practice (I work for a dentist) who have done the interferon thing, and all three of them have had VERY good results. I don’t know about any side effects…if any…but they all three seem to be “cured”, healthy and completely well. FWIW.
Jomo, if you have fibrosis on a biopsy, and if you have a genotype which tends to respond to combo therapy (2 or 3), you could be one of those people for whom peg-intron can truly make a huge difference.
I understand your reluctance to use interferon, but I’d urge you to find a doctor you feel you can trust, and discuss this with him/her. It’s all about risks versus benefits, and there are situations where, IMHO, the potential benefit truly justifies the risk. YMMV.
You are most welcome truthbot. I do not mind sharing about my experiances with the dragon at all. That is how we get the word out there by talking about it.
My geno-type is 3a so I do respond well thankfully. ** Baldwin ** is right about how icky it is but for me at least it was worth it. And should I relapse I would probably do it again. BTW hi ** Baldwin ** keep fighting the fight the best way you can !
I didn’t have a biopsy. The thought of it scared me too much so my doctor let me get away with just a full body scan. It showed that I was in the early stages of liver disease. Both the liver and spleen were affected. There is hope with this disease and thankfully it is a slow acting disease. Sadly it isn’t usually tested for unless something else is going on with a person and a set of test on the liver values is done. By the time it shows up there has usually been a bit of damage done.
My Uncle had it for about 30 years, never recieved treatment. He did develope liver cancer but as I said he had it for a very long. And he didn’t stop drinking until it was too late.