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.

[dontworry_behappy]

I didn't much feel like going ANYWHERE during treatment.  The backyard
was like going on a trip.  It got better when off Incivek.  Your life wasn't
focused in on taking pills every 8 hours with 20 grams of fat.  I will never
eat a chocolate covered almond ever again.  

[juli4591]

THanks, idyllic, don'tworry and walkingshadow. The incivek really has been the worst - we were surprised because the dr said it really didn't add many sie effects except rash.  o.......kay......
walkingshadow, I'm hoping that hub can get out of the house farther than the back yard!

[Walkingshadow]

Yes, I think you are right. Some things that helped me were getting exercise, being around people, and just getting out of the house. Also, after 12 weeks my doctor decreased the ribavirin dose, and that also helped. For me, the Incivek was the worst.

[dontworry_behappy]

That's Great!!!

[Idyllic]

Glad you managed to find relief for your hubby. Treating can be anxiety provoking in a way little else we encounter in life rarely ever is. I have an addictive nature so meds like Ativan were never really an option for me - but I have seen them work for others so Best of Luck♫

[juli4591]

Update on my hub - dr put him on ativan 1 mg 2x a day. It is literally like day and night!  He went from feeling like he was dying to feeling almost normal.  Thank God!  THanks for all the good info and encouragement, everyone!  I didn't think he could feel this good while on treatment!

[juli4591]

That's a good suggestion dontworry - I know hub doesn't want to take an ssri but sleep deprivation doescontribute to serotonin loss.  Last time he treated he ended up sleeping all day and being wide awake all night.  It was like his natural rythmns for his sleep cycle did a 180.  

[juli4591]

Yes, that's part of the hell of it - you feel great before starting treatment and then you feel like dying while your liver is getting a rest! I hope you hang in there. It is a life-changing experience and good personal growth can come out of it, especially when on the other side. best wishes back at you!

[juli4591]

Carl I read hub  your reply and he chuckled - that's exactly what he feels like this afternoon.  This morning was good; PM not so much.  

[dontworry_behappy]

Make sure your hub gets something to help him sleep.  I don't know
HOW anyone can do this treatment without sleep medication.  I never
took sleeping medication before and did every night while on treatment.
You really need your rest to cope with all this.  I had a very successful
outcome and do believe getting rest greatly contributed to better health
during treatment.  FYI - just about everyone who went through treatment
at the same time I did - took something to help them sleep.  

[timothy141]

I am not as insightful as so many others, and being a 3a not sure my input would be of much help! Only that Friday I injected my 15th pegintrferon-alfa2a shot. This morning ingested what amounts to 197th dose of ribavirin (78800 mg total). This is my first "rodeo", am 54 years old and feel as if I have aged a 1000 years in the last 99 days,and look it too, scary realization.  I had not had a RVR, but was UND at week 8 and of course medical advise suggests I tx for 48 weeks. LOL At this point in time my sx are such that everyday I fight with idea of being healthier before I began this journey and desire the opportunity to make that decision again. After all I wasn't sick at all, on the surface, and hey in the scheme of things I am only a 3a! RIGHT!!
There is nothing good about this, other than an extension of life, and the gained insight of my own integrity and lack of at times. Bottom line so much time has passed and seeing what I have put others through thus far causes me to continue on and not focus on the moment but surrender to goal and let others carry me during that time comes. And has become almost daily, of course there are....good days, not many but I cherish them in laughter, joy and unconditional love. Without which I could not have come this far.      
Best Wishes!

[Carlhcv]

I'm on week five, triple therapy. Geno 1. The shortness of breath is terrible. Yeah, sometimes I feel like I'm going to die.

[juli4591]

Thanks so much for telling me of your experiences - it is very helpful to read what others have been through and know that there will be a finite time for these side effects! Hub is concentrating on remembering that the meds aren't the enemy; the virus is.  He's also been busy the last day or so planning some new musical projects and is finding that having a goal other than making it through the side effects does wonders.  His interferon shot is Mon night - after reading here we'll be more cognisant of thecorrelation between it and the nasty side effects.  Thank God research is progressing so rapidly - there is still hope if this goes bust.  Hope you have a wonderful weekend.

[Walkingshadow]

Hello there,

I am about the same age as your husband also have only mild cirrhosis that was asymptomatic (or nearly so). I am about half way through a 48-week tx course (ribavirin/incivek/interferon; serotype 1a, undetectable at 4 weeks and 16 weeks).

I found the 12 weeks of Incivek to be the worst part. I think the interferon sometimes makes me somewhat mentally/emotionally unstable, and I think the Incivek made this worse. The Incivek also seemed to worsen just about all the side effects.  

I think your husband's mental and emotional outlook will improve dramatically once the Incivek is completed, but he probably won't immediately bounce back to his normal self (I haven't at least).

Keep in mind that there are better solutions coming online over the next few years, and as I understand it, these are largely directed at those who have not attained SVR or have relapsed (i.e., treatment failures). The doctors I have talked to about this expect that in 2 or 3 years time, nobody will be taking interferon injections, and probably not Incivek either.

Keep the faith.

[juli4591]

Thank you - that would be most helpful!

[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.

[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.  

[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 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.

[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, 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]

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]

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!

[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.