Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Howdy folks. I started tx on 8/23, and it was bad. I expected some discomfort, but not like I had. Mornings were terrible, massive headaches coupled with extreme tiredness. Interestingly enough, the Pegasys shot seems to have minimal effect.
I finally decided to try going off the gabapentin I'm taking for restless leg syndrome. Even though my RLS is severe, I feel so much better. I was keeping a diary of side effects courtesy of my pharmacy, and I was rating the previous discomfort at a level 8 out of 10. It was so bad I called my doctor last week. The nurse was sympathetic, but never once asked me about other medications. The last three mornings, Id rank my side effects as a 3 or 4 since I stopped the gabapentin. Still not feeling great mind you, but well enough that I think I can make it now.
I spoke to my pharmacy (mail order) at length before starting tx. I told her about the gabapentin, but she never once batted an eye. Well, at least for me, it had a horrible interaction with the HVC meds. So I guess the moral of this store is not to give up, and be very careful about the other meds you might be taking.
My RLS was so bad last night I couldnt get to sleep. Since you only have 8 hours between Incivek doses, that adds to a whole new set of problems. But Ill trade my current symptoms any day for the previous ones. Tomorrow I will call my primary doctor and see if she has another recommendation for the RLS meds, but for now I am grateful that I at least feel like enjoying this holiday a bit. Even if part of the enjoyment will be to take a nap.
Happy Labor Day everyone! (well, at least to those in the US)
Bob
I finally decided to try going off the gabapentin I'm taking for restless leg syndrome. Even though my RLS is severe, I feel so much better. I was keeping a diary of side effects courtesy of my pharmacy, and I was rating the previous discomfort at a level 8 out of 10. It was so bad I called my doctor last week. The nurse was sympathetic, but never once asked me about other medications. The last three mornings, Id rank my side effects as a 3 or 4 since I stopped the gabapentin. Still not feeling great mind you, but well enough that I think I can make it now.
I spoke to my pharmacy (mail order) at length before starting tx. I told her about the gabapentin, but she never once batted an eye. Well, at least for me, it had a horrible interaction with the HVC meds. So I guess the moral of this store is not to give up, and be very careful about the other meds you might be taking.
My RLS was so bad last night I couldnt get to sleep. Since you only have 8 hours between Incivek doses, that adds to a whole new set of problems. But Ill trade my current symptoms any day for the previous ones. Tomorrow I will call my primary doctor and see if she has another recommendation for the RLS meds, but for now I am grateful that I at least feel like enjoying this holiday a bit. Even if part of the enjoyment will be to take a nap.
Happy Labor Day everyone! (well, at least to those in the US)
Bob
I also have RLS and this seems to help for me.
Glad to hear you are feeling better though. Have a great day:):)
Glad to hear that YOU figured out what the problem was and are feeling better.
One thing that I discovered, almost immeditately, was that you have to be your own advocate. This is what happened to me the first week:
1. I took about a few days of the tx and felt like I had a stuffy nose one day. I used Ocean (saline solution) nose spray like I always do when I'm stuffy. A BIG no no which I wasn't told about. It created huge post nasal drip, which gave me the sore throat from HELL.
2. Also at about the same time, I was told to keep my mouth and teeth very clean or I could develope cold sores at my initial counseling session. To use a gentle tooth brush and regular toothpaste with no whitening, scope, etc in it. I chose Colgate Reg toothpaste and proceeded to brush my teeth EVERY time that I ate or drank something. Well...this created the sorest mouth I have ever had in my life! It hurt to drink water!
Both of these things, I had no idea was causing the trouble. I thought " OMG! I'm allergic to one of the drugs!"
So I call the on call doctor who is NOT a HCV doc but a Gastro guy (they all work together. digestion is digestion I guess) and he told me to quit taking the drugs. This was a Saturday night. I thought this over and since I basically had 1 week under my belt, I wasn't going to stop. The next morning I go to the Urgent Care first patient in there. My BP was 81/54 and the nurses all masked up when they saw me! I told the doc what I was taking and why and he proceeded to tell me that he knew NOTHING about HepC or the treatment. He looked in my mouth and went "Wow! I bet that hurts bad! But I don't think it's an allergy to the drugs. I think you may have the flu in addition to the sx of the meds you're taking." anyway long story short, got pain meds and bought Biotene toothpaste and NEVER used saline solution again for a stuffy nose. Use a humidifier with distilled water only and stick yuor nose right where the vapor comes out. Breathe deeply and it will clear your sinuses pretty quickly. Also, no netipots with saline solution!
Within a day or two, my mouth was much better and the throat cleared up a day or two after that.
My HCV doc (saw him that Monday) was very angry that that gastro guy told me to quit and wanted his name. I bet someone's head was going to roll!
Bottom line is find out who can give you solid advice about your HCV and drugs in case you have a problem. Most docs other than HCV guys don't know enough to help you.
Hope that helps you be aware of some pitfalls. Know who to call!
Take care,
Kelly
I'm only few weeks ahead of you (started 6/29). I was ok for the first 2 weeks, but have been off work since week 3. Weeks 3-5 were the worst, and the side effects have been mostly manageable since then. My I.D. doc told me to stop taking anything I didn't absolutely need. I have been ok lately. I'm waiting for my 8 week lab results. Was undetectable but anemic at 4 weeks, but no dosing change. The members sharing their experiences are so valuable. They give us hope for the future, and validate our current experiences. My short term goal at this minute is to get to the end of Incivek tx, if for no other reason than to cut out 2 of the 20 gm fat snacks.
Hang in there and keep on posting! - Kevin