hub's side effects - physical or mental?

[juli4591]

good morning to everyone, and thanks for taking the time to read my post.  My husband is in week three of triple therapy with incivek.  He's had issues with rash, (which is currently under control ) as well as tiredness, shortness of breath,etc - a lot of things that seem to pop up and change daily and that many of you have posted about. My biggest concern is that he feels like this treatment is poisoning him and that it is going to kill him before the hepC does.  He treated once before with interferon/riba and responded well but relapsed.
Have any of you experienced this overwhelming feeling that you won't survive the treatment? This morning he had a very difficult time taking the Incivek, almost feeling that is was suicidal to take the pills. He is 58, has early cirrhosis but never had any symptoms/side effects from the hepc. He is taking welbutrin 2x a day as part of his regimen.If anyone can offer an encouraging word or advice I would surely appreciate it.  This is such a scary process, and how can you know what to be alarmed about and what to try to work through? Thanks.

[Reidmusic]

When I was on Incivek I had the rash, extreme fatigue, and shortness of breath and I could barely stand up long enough to take a shower. I was totally incapacitated and I only went out to go for my labs and appts. I hated bright lights, noises, music, phone calls, and could not stand to talk to people because it was too much effort. I felt like the drugs were killing me along with the virus but I knew this was to be expected. I got depressed but I didn't get so bad that I wanted to add an anti-depressant to the mix of drugs I was taking. Maybe your husband should look into an AD since he sounds a little deeper into depression.

Things got better for me the further I got away from the Incivek. My hemoglobin went from 9 to 11 in a few weeks and I started to feel half human.

[Advocate1955]

Triple with Incivek is a very tough treatment.  My husband had all of the side effects, and it was really day to day and week to week for him.  It is both physical and mental.  There are physical side effects and there are psychological side effects.  My husband took Citalopram throughout his triple tx, and it helped a lot.  I also tried to get him to drink extra water and go outside for a walk every day.  That seemed to help.  Insomnia can also be a problem, so when my husband couldn't sleep, he got more anxious and depressed as well.  His hepatologist added a small dose of Trazadone at bedtime.  It's rough, and it's important to do whatever is needed to get through the treatment.
Advocate1955

[Advocate1955]

Ooops, just saw that he's on welbutrin.  You might ask his hepatologist to consider whether the welbutrin is effective, needs something added, or the antidepressant needs to be changed to something else.
Advocate1955

[cheflady]

hi wecome! I second everything reidmusic as just said. My hubby 61 and it totally floored him he to felt the same before he found out he got hep c he felt perfectly well and he to struggled having to take something that made him so ill.He is now on wk 18 and been und since wk 4 so please try to encourage him to carry on hopefully he to will be und wk4 and that should really give him a boost.Hubby counted down his 12wk so instead of saying on wk 3 he would say only 9wk to go. Dont ask me why but mentally that seemed more encouraging! Also he must remember it is a very strong and powerful drug but the difference when finishing incivek was unbeleivable!! so there is a light at the end of the tunnel. Best wishes to you both and good luck

[Linda5758]

Tell your husband I'd give my eye teeth to only have to do 24 weeks, I was not undected untill week 12 so have to do this for 48 weeks,and am not tolerating it well, I too am bed ridden and will be probably till Sept.  Started thearpy in Oct. and I"m on week 21.

[gopkrs]

Yes it is tough and probably harder because he is older now and cirrotic. I almost hate to mention it but I suppose it is possible he is having side effects from from the Wellbutrin. You might ask the doctor about that.

[cheflady]

im really sorry that you have to do 48wk i hope it starts getting a bit easier for you

[christinatas]

i am not doing treatment yet but dr's hav tried in the past to put me on several AD's and they made me severely depressed,wellbutrin made me almost suicidal-just adding u a note to consider

[dontworry_behappy]

I agree with Advocate 1955.  I took Welburtrin through treatment.  
I now question if that was a good medication for someone to be taking on
treatment.  I believe it my have add to some of the problems I was having
treatment.  Harder time sleeping, obsession in addition to other mental
effects that cause focusing in on things maybe you shouldn't.  I did start
feeling better when I stopped taking it.  What Advocate 1955 is saying is
very true.  I never took Valium before I treated last year.  Treatment was
Very hard on my mental state and that really got to me.  Valium was my
Doctors suggestion and worked wonders.  I question if Welburtrin is a
good choice for anyone on treatment. I had taken Welburtrin  at different
in my life before treatment.  The effects were different on treatment and I
would've stopped taking sooner if realized I might have felt better without
welburtrin during treatment.

This is no easy treatment. hang in there.  Turn over every rock to find the
answer.  Relaxation is very much needed during treatment. It helps the mind and body.   Your doctor can give him something to help make this not so
stressful.  

[juli4591]

Thank you everyone for your comments! So appreciated.  i am making notes to take to our next drs appointment. Reidmusic, your side effects sound very similar to hubs.  It truly is day to day, sometimes minute to minute.  Hub is better this afternoon and is determined to soldier on. INteresting about the Welbutrin dontworry_behappy - I will talk with dr about that.  I think if we get good results from his week 4 labs next week, it will make a difference - like he is winning this war raging inside of him.  So thankful he doesn't have to go to work through this. Cheflady, good tip on counting down the weeks. I hope thatfinishing the incivek will make a difference also.  thanks again for your help  - I'll be hanging around here for the next few months and hope I can be a help to others too.

[juli4591]

Thanks for the information on the drugs used to help your husband's symptoms.  especially the insomnia, which has begun to rear its ugly head. it always helps to know what is helping others get some relief.

[Idyllic]

I was on Wellbutrin during treatment with Incivek. It stopped the deep, black hole depression I was afraid that might be triggered and even the feelings of doom and all that. Having said that I honestly believe Incivek comes with its own share of malaise and saps the ability to feel pleasure or interest. I can't explain it and of course there are no studies to support this but that is what I think. It lifted within days after I was finished with Incivek.

The thing is I don't know what stage of fibrosis you husband is or his history with psychoactive medication or possible prior experience with depression. Treating again comes with its share of fear and doubt whether all this is going to work and we are taking these heavy duty meds (again) for nothing. It can be overwhelming without support from others. I am glad you are on line doing this and I also think it would actually help your hubby if he were to participate. My husband wouldn't if he were treating. It just wouldn't be his nature. He would read and understand the basics but that is about it.

The thing is lots of us who treated before thought we knew what to expect with Triple and I for one was shocked when I realized what a "game changer" is for the whole treatment experience. The first time I treated I could work and even traveled. I thought Triple would be like that. So, there is that shocker to contend with.

Lastly in my opinion Wellbutrin does zero for anxiety and some people think there is a difference between the brand name and the generic. I discovered I did not need a 2X day dose and one dose of the 150 was enough for me. It was an efficacious therapeutic dose and worked better than a higher dose. I take a few other meds unrelated to Hepatitis C so it could be how they were metabolized - just thought I would throw that out there.

** You know your hubby better than anyone and I hope after reading some of our experiences you can determine what is what. I hope you do mention this to the doctor and I hope this works out. I honestly think Incivek could be a huge factor though

[orphanedhawk]

Well you husband is right, he is poisoning himself and hopefully the poison will kill the virus.

It's not easy and one big side effect is the mental one. It's important to try and exercise, get out in the fresh air, and stay as upbeat as possible. Remember, it's just for a period of time and it will end.

However, he should have a good support team treating him. He should be able to contact someone to help reassure him or to be alert incase real problems do occur, as they can. Tx is tough.

Good luck

[coeric]

lots of great advice from the previous posters.   my experience is that the emotional side effects got worse after stopping the incivek.   hopefully he has a treatment team that will address his mental/emotional side effects.   i used marijuana liberally through treatment,  but i may have also benefitted from antidepressants.  
blessings
eric

[BoceprevirGal]

  Well, I treated for 28 weeks, with the other protease inhibitor, Victrelis, and I did not take any antidepressants. But I did have the exact same feeling that your husband is describing. I was terrified the whole time I treated, so afraqid it would give me a terrible, life threatening infection.  Towards the end of my Treatment, I did catch the 24 hr flu, 3 times. I would wake up at 4 am, with a horrible head-ache, and have to rush to the bath-room, I felt extremely poisoned.
   What I did to make myself feel better, was I was very careful with my health. I avoided indoor crowded places, full of coughing babies, etc. And I avoided restaurant food, and I stopped riding my bike, I was so frail and dizzy. I treated mysef with kid-gloves, yeah, I was very worried.
  I did manage ot obtain SVR, so tell your husband to hang in there, and treat his symptoms as they come. Once the 12 wks of Incivek areover, he should feel much less poisoned. My Victrelis "sentence" was fpr 24 weeks!

[pooh55811]

I was on Wellbutrin when I started Tx and I stayed on it throughout Tx. I had zero depression and zero emotional issues. I was fine.

I think if I was having the mental problems your husband is having, I would see the psychiatrist immediately. If he has no psychiatrist, perhaps his treating doctor can get him in to see one ASAP on an urgent/emergent basis. He may need a different antidepressant or perhaps another needs to be added to the Wellbutrin. Either way, he should be evaluated by a psychiatrist who is knowledgeable in treating this type of problem.

The Interferon can cause severe depression so you want to get on top of this immediately.

Best of luck.

[juli4591]

You hit it on the head with what a game changer the triple therapy is!  Since we had gone through the interferon/riba treatment about 1.5 yrs ago, we prepped for the new treatment based on our last experiences.  Last time hub was extremely nauseous, could barely ride in a car to the drs, had to wear wristbands the entire time, etc.  So we got all our ducks in a row.  This time, very little nausea and motion sickness.  Felt lucky until the rash bloomed like an invading army in one night and none of our OTC treaments seemed to do anything. Started on the Welbutrin weeks before treatment, but a different type of depression this time.  So it's constant tweaking, constant vigilance. This board is a godsend, and I read hub the responses to my post and he was so moved that people would share so much to help him.  he's very private and probably won't post, but very appreciative. Dr did mntion anxiety, and said she could prescribe something like ativan to take just in times when it was overwhelming ( like this morning.)  Husband is very much better this afternoon - he spent some time visualizing the Incivek wrapping around the virus and kicking it to the curb. Tomorrow is another day and hopefully the sun will shine outside as well as in his heart a little bit!

[juli4591]

Thanks for your reply and it is so true - this is a med that you have to hurt yourself in order to help yourself.  Hub tries to get out every day and fill the bird feeder, the birdbath, etc.  He is feeling better tonight and hopefully can ride that wave a little, but if not we'll be calling for an appointment sooner than his next scheduled one ( next week ).

[juli4591]

Thanks, and we'll be watching very closely to  make sure things don't get worse.  WHEN is medical marijuana going to be available everywhere??

[juli4591]

Ugh those 24 hr bugs sound terrible!  on top of everything else!  Hub pretty much stays home, and we are big on hand washing and using sanitizers, etc.  Congratulations on your SVR!

[juli4591]

Thanks pooh55811 - his liver dr has been the one prescribing the antidepressants but is very good about meeting our needs.  If hub gets worse I'm sure she would be responsive to his seeing a specialist.  I think I'm seeing a pattern - the first 48 hrs after his interferon shot seems to be when he bottoms out.   He's feeling much better tonight and we'll see what tomorrow brings.

[Advocate1955]

Juli, I'm not a doctor.  I think Welbutrin is an OK antidepressant for treatment, but it may just not be the right one, or may just not be enough for your hubby. It is normal for people who are doing treatment to feel really sick for a day or two right after the injection.  That is due to the side effects of Interferon.  And Interferon can cause anger, irritability, depression, anxiety, etc.  I would definitely get in touch with the doctor and ask if it would be helpful to either switch the Welbutrin for something else, or add something else to the Webutrin.  My husband was on Welbutrin for a short time during treatment, and it just wasn't a good med for him.  It made him feel "funny", so she switched him to Citalopram.  There are so many choices of ADs and anti anxiety meds, so talk to the doctor.  Your hubby doesn't need to struggle this much with the psychological side effects when there are so many options.
Advocate1955

[juli4591]

thanks Advocate1955. Hub was on an ssri the last time he was on treatment ( sertraline), and doesn't want to go on it again. it helped with the symptoms but made him feel sort of zombie-like.  I'm beginning to see that like the side effects the treatments for them are different in everyone.  Whew - what a rollercoaster ride.  hub is better again today, and  I'm keeping a few notes for the dr - maybe he could use an anti-anxiety med for the first couple of days after interferon.   I really think he is having the mental side effects from the interferon - different than last time when the riba seemed to take him down.  

[rivll]

There have been a number of posts in the past by people post incivek where they describe increased anxiety. Apparently, it does level of within a few weeks. I will try to find the links and send them to you.