First tx results in disaster. Can we start again?

[Tombstoner]

My husband had his first shot of peg-intron on Friday night. In the night he woke me up and told me that he was cold. Then he started hallucinating. It was bad. I had to take him to the emergency room and they gave him an IV of salt water and he also had a fever of 104°F. They took him off of his treatment. Tomorrow I am expecting a call from his HCV doctor about his treatment. I hope we can continue with it because we want to get rid of the disease. I am thinking that maybe his Methadone helped cause these hallucinations because when he takes it alone he gets somewhat confused. In the meantime, he has taken no ribavirin. I am really worried about this because the doctor told me that starting and stopping the treatment is not good because you can become immuned to it. What do you think the next steps will be for him? I am just scared to death he won't be able to have his treatment anymore.

[desrt]

It sounds like your husband might have other health issues going on besides HCV. Why does his methadone cause confusion? Is he in end stage liver disease, and if he is, why is he treating? Is he on a transplant list? True allergic reaction to interferon is very rare these days and usually manifests more like the type of reaction some people get to bee sting. Why did the hospital administer saline? Was he dehydrated, and if so, why?
Too many questions

[Tombstoner]

My husband is bipolar and has depression. However, mental health cleared him for treatment. Also, he has a bad back and takes the methadone for the pain. He is between stage 1 and 2. No, he isn't on the transplant list. He doesn't even have any symptoms of Hep. C. He didn't get a bee-sting type of reaction, just high fever and confusion. I called Be In Charge and asked them about it and they said it's not common to have confusion but it is heard of. They told me they gave him the saline to dilute the interferon so he could handle it better. Also he was sweating a lot.

[mremeet]

My first shot gave me terrible chills, shivering, shaking and fever. I never took my temperature but I know it was at least 103 deg F, and for all I know it might have gone as high as 104F. But I don't believe I hallucinated, although I went through the worst of it alone so I guess it's possible I could have said some strange things had I been asked. So maybe the methadone is playing a role in the hallucinations, but I really know nothing of it, so I can't comment on that part.

But I would think twice about quitting treatment, his second shot should go much easier. He should not get a bad fever like that after the second shot. That's the typical pattern of things anyway, the first shot tends to be the worst for most people, then the later shots are much less eventful. And the ribavirin shouldn't be causing him any problems in the sense of hallucinations, unless he is allergic to it or for whatever reason is having a bad reaction to it. Over time ribavirin does cause anemia in most people, and if it gets bad enough it can cause light headedness and mental confusion. But there are drugs that can be used to help alleviate the anemia if that happens. Make sure the doctors treating him know what they're doing, they shouldn't be shocked at a high fever on the first shot, that's pretty typical. And the fever should have subsided by the next day or so. Did his mental confusion continue after that? If it didn't, with your doctor's concurrence, I'd seriously think about continuing on and giving it a good solid try before throwing in the towel just yet. Good luck...

[desrt]

He's 'bipolar and has depression' but was 'cleared" for treatment? What type of meds is he taking to control the depression? Hopefully he has a top notch psychiatrist who is monitoring his treatment very closely. I can't see any other way he would be allowed to do treatment. This is the first I've heard of saline being given 'to dilute IFN so it could be handled better'. Please keep us posted on what the doctor tells you. I would think he would be anxious to examine your husband.

[zazza]

"I am really worried about this because the doctor told me that starting and stopping the treatment is not good because you can become immuned to it."

Interferon boosts the immune system. Neither interferon nor ribavirin attack the hepatitis virus directly, and therefore we do not develop resistance to them. I have read studies where it has been stated that after interferon and ribavirin treatment, if one relapses, the virus will return to its wild life form, i e the form it had prior to treatment. No difficult-to-treat mutations left here. So I would not worry about becoming immune to treatment even if your husband has to stop and start again. Just look at all the people who have done more than one round of tx and cleared!

There is however a resistance issue with the newer polymerase and protease inhibitors since they attack specific parts of the virus itself. But since these drugs only are available on trials so far, and only for geno 1s (in the US at least), your husband must just be on regular SOC, ie pegylated interferon and ribavirin. So nothing to worry about as far as resistance issues then!

[zazza]

That said about resistance, stopping tx means giving the virus a chance to get back to full force. So make sure you get things sorted out, so there will be no need to stop tx again.

[HectorSF]

First let me say I am no doctor and I only have my own personal experiences with HCV and treatment to share. So for a true understanding of what happened to your husband talk to your doctor.

It sounds like a very frightening experience. Thank for sharing it will us.

You say your husband's biopsy indicated stage 1 and 2 liver disease. That is good news. It means there is no immediate need for him to be treated for his HCV. It sounds like he has other health issues that need to be taken care of first.

What is important right now is for his doctor to figure out what happened to him Friday night. An allergic reaction? Bad mix of medicines? (This is the first time I have ever heard of someone having such a reaction. This is NOT a normal reaction to PEG).

There are also several things I don't understand... Why didn't he take his Ribavirin? He should be taking one dose in the morning and one at night. Is he on meds for his bipolar illness? Treatment can cause serious mood disorders and depression which can stop someone from completing treatment. "They told me they gave him the saline to dilute the interferon so he could handle it better". The Peginterferon is injected subcutaneously (into the layer of fat under the skin) so I'm not sure how hydrating him with saline would affect the absorption of the med? Again I am not a doctor...

Anyway...The main thing now is for his doctor to figure out what happened. Then, if it is possible, for him to tolerant the treatment. This treatment is a serious commitment and in order for it to be successful your husband must comply with the amount, time, and duration of the treatment. Which can last up to 48 weeks or more.

The good news is he only took one dose of PEG so it is not like he is in the middle of many months of treatment and has to start over. When he is healthy and ready then he can restart the treatment.

I wish you and your husband all the best.
Hector

[Becky102]

My husband treated twice.  The first time for 21 weeks and the second time for 48 weeks.  He was on methadone for pain both treatments.  Both times he treated he woke in the middle of the night of the first shot with his teeth chattering, shaking like a leaf.  I don't remember if he had a fever and I don't think he was hallucinating.  
I'm telling you this to let you know that he never had that reaction after any of the other shots.  It was only the first shot, both times he treated.  The second shots were non events both times.
I don't know about the bi-polar medications