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.

[sparra]

A high fever alone can cause some hallucinations especially when you just wake up from sleep. There's been a few times when I've had a fever of 103-104 and had some minor hallucinations waking up from sleep. My doctors told me that the hallucinations were from the fever either increasing temperature or dropping temp so fast in a short period of time.

I was basically still sleeping but was freaking out - the hallucinations lasted around 5 minutes until I woke up all the way. For some odd reason I freaked out and told my girlfriend that I needed to be upside down or I was going to die... must have been still in some crazy dream, lol

[comeagain]

If this doc has said "that starting and stopping the treatment is not good because you can become immuned to it" and that isn´t true she obviously dosn´t no what she is talking about, so its probebly wise to get a sec opinion.

I know a guy who just recently got a sec opinion and that probebly saved him from getting a  stoma-bag.He had been having bleedings in his gut for three years due to a prostata cancer tx.  The first doc wanted him to get stoma-bag and said there is no other option. But this guy didn´t want such a bag so after three years he went for a sec. opinion. the new doc said thats no problems we have meds that quickly will stop the bleeding and when stoped the gut will must likely heal by it self.

Thats only one story about what could have happen if just trusted one docs opinion.

Your husband has the best geno nr2 and has very good chances of clearing the virus in a relativ short time-period, i think thats another big reason to check twice.

Be like a terrier
good luck
ca

ps if there were any incorrect information in the abowe example I`m sure zazza will correct me because it was here father i was talking about

[mremeet]

I agree with the others. Not trying to be an "internet doctor", but I would definitely seek a second opinion, and do so before the second shot is scheduled this coming Friday. I'd also follow up very quickly with your current doctor and inquire exactly WHY she thinks it was an allergic reaction? Is the evidence simply that he hallucinated? If so that sounds like very weak evidence. Get copies of all his lab work from her as well.

On the other hand, anything's possible and maybe he is allergic to the drugs. But the only time I've heard of people having allergic reactions to the drugs is when...well, people have allergic reactions. Like wheezing (asthma) and especially skin rash. And even that is rare, most people do not get severe reactions like that (although it WILL irritate most everyone's skin over time). Did your husband experience any obvious allergy-like reactions?

No, I would go for a second opinion ASAP and follow up with the current doctor to see why she's convinced it's an allergy. Don't give up the fight without a fight.

[zazza]

I would go for a second opinion - to a hepatologist. Aren't hallucinations consistent with high fever rather than with an allergic reaction?

[desrt]

a) What type of doctor is she? Gastro, hepatologist, MD ?

b) This is the first case of true allergic reaction I've heard of in 6 years. Is she sure that's what this was?

c) The symptoms you listed are not consistent with the allergic reaction I've heard of.

[Tombstoner]

Well the doctor called us last night. She said he cannot continue treatment. She said he is allergic to the medication and if we tried it again he could have a heart attack or stop breathing on me. I am so disappointed but if he can't, he can't. I asked her what we will do now and she said she is going to monitor him. I asked her what his prognosis is and she said people can live long with the disease and I asked her if he could live a long life with it and she said yes. I hope that means a normal life. She said NO alcohol (of course). So I guess now we just hope and pray for the best.

[zazza]

"I told her that he hasn't been taking his ribavirin (because that ER doctor told him to stop) and she said it is ok since it was his first shot. (hmmm)"

Well, since it was the first shot, one could think of it as restarting the treatment at shot nr 1 again. Then perhaps add an extra shot at the end of tx to get a full 24 weeks, or if he gets to undetected quickly, perhaps feel satisfied that 23 weeks is enough, considering he has such a good genotype.

[dranurag]

chills and fever after peg is not rare. It usually goes off after 3-4 doses. Since your husband had such a horrifying experience, next time start witha lower dose and garadully build up to his 1.5 mg/ kg in 4 weeks.Also give him paracetamol every time you take the inj, may be for 2 days after each injection without waiting for the fever to come. Chills and rigors happen because the thermostat in the hypothalamus gets set for a higher body temperatures by some medicines and then the body produces lot of muscular activity ---shivering---to raise the body temp demanded by its thermostat

[NashPred]

Shot 1 was no fun. My first shot of Peg Intron came with severe chills and a temp of 102. I did not have any hallucinations, but I can see where a temp of 104 may cause this. Adults can’t handle a temp that high as well as children do.

My second shot I only had a temp around 100 and just a few chills.

Third and fourth shot came with more aches and pains than anything else, but overall, a lot easier to deal with than shot #1. So each shot has been easier to deal with so far.

Hopefully your Dr can figure out something and he’ll be able to see if shot #2 is easier on him. May try taking Tylenol before the shot to help with the fever.

He has a good geno type to treat and stands a good chance of clearing.
Best of luck. I hope everything works out.

[Tombstoner]

First off, when I said he was cleared for treatment, I meant that the psychiatrist said it was ok for him to start. He had to make sure she said it was ok before the hepatitis doctor gave him the treatment.
We do not want to give up on the treatment by any means. We just are hoping that she (doctor) doesn't say that we have to stop.
I just called the Be In Charge program and asked them if it is possible for him to start over after this and she said yes, but the doctor has to make that decision. But at least she said it is possible to restart. I told her that he hasn't been taking his ribavirin (because that ER doctor told him to stop) and she said it is ok since it was his first shot. (hmmm)
I asked the nurse on the phone if this a known side effect that he had. She said it is rare but it is not unheard of. They gave him a blood test at the hospital. All his results came back fine. So basically he just had that bad reaction and the high fever. I asked the nurse on the phone how to deal with the fever and she told me to give him cold drinks and put ice on him. I can deal with the hallucinating, as long as he doesn't do anything dangerous.
Thank you everyone, for sharing your stories and advice with me.

[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, but being on methadone shouldn't preclude him from treating successfully.

[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

[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.

[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!

[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.

[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...

[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.

[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