Emotional rollar coaster on Harvoni

[Nikki]

Hey there,
Have had hep C probably over 40 yrs diagnosed in 1986 when the test came out. My liver numbers are all within normal range. biopsy revealed no movement between 0-1. I was not in a hurry to go on therapy they pushed it on me in a very aggressive way. That said i am on day10 and the roller coaster of emotions is overwhelming

I am not a cry baby and now i find myself going from sever anxiety and rage, like my head is going 24/7 to extreme sadness. its scaring me. I live alone and i really wonder how much more control am i going to lose. i am miserable. I can't do 3 months of this, i am not willing to live feeling this way, not with normal liver numbers.

Its more annoying when people say its ride in the park, is there anyone else finding extreme emotional highs and lows? I mean i feel like i lost myself and some other evil twin invaded my space, its not funny, my lows are so sad, its not me at all i never get this depressed. Doc said to come in, or the NP did, said dint' just stop why they are FORCING ME To take this is even more annoying. Has anyone else stopped after 2 weeks. Sorry to sound so negative but that's how i feel, i am pushing people away and just want to sit and not be around anyone.

[KimInTheForest]

Hi Nikki. I too was on a massive emotional roller coaster with it. In my case I had harvoni+ribavirin for 12 weeks, so some of the emotional stuff (especially rage) was more likely due to ribavirin. But I certainly know what you mean and can sympathize. I was actually glad that I live alone and work from home. I felt my treatment would have been much more difficult if I was required to have daily contact with people.

With emotions like crying, I would say just go with it. When it is chemically induced like this, it will usually pass. With rage, I think the best thing to do is go for a walk. I tried to declare my home a rage-free zone, which meant my rule was to go outside when I found myself in the grips of an irrational rage - even if it was just to walk to end of block and back. The concept is like house-breaking a puppy. The body needs to be taught it can't do that inside. That helps keeps your home energetically clean and safe and healthy for you. And of course walking helps dissipate rage.

Deep breathing also helps. Square breathing is very easy and calming:

1. breathe in to count of 4.
2. hold it for count of 4.
3. breathe out for count of 4.
4. don't breathe for count of 4.
repeat multiple times

Basically, I just kept reminding myself: "This isn't really me, it's the drugs." And it really will be over soon. Ii think you will thank yourself in the end for sticking it out and getting rid of the Hep C.

best,
kim

[Nikki]

Thanks Kim I am on pain med and have PTSD so I can see where the rage comes in. I wonder if its the pain meds, the PTSD or this stuff. i can say i can't do it and work. I work close to people and it requires a LOT of patience. You are right i am going from rage to sadness in half hour. I am feeling nutty, calling Harvoni and feel like cursing them out. I mean this is not good.

I want this to end but its making me feel more powerless and now i feel exploited by the clinic because of the way they are pushing this on me. If i lose my hair i will go ballistic, i gave it a shot but i can't do 3 months and work its impossible. I wish the docs were more honest with the possibility of side effects first it was only one drug then i saw the bottle and yes its the one you mentioned. Awful stuff awful. What is it doing to us?

Timing is everything i knew the timing was off for this. I should have done it when i didn't have to work. Thank you, i know i am not the only one.

[KimInTheForest]

One thing I would say where Harvoni is concerned, is that almost everyone here who has done Harvoni has commented on the fact that side effects develop, last for a week or 2, then subside (as if the body is adapting to it somehow). It is possible new side effects will then develop, plateau and subside. But most people on Harvoni did not notice any one thing in particular lasting throughout treatment (except for the "Harvoni High", which was actually pretty nice).

So before you pull the plug, try to get through the first 3 weeks, and see if what you are currently experiencing has started to diminish by then. Because it might.

best,
kim

[Nikki]

Kim,
Harvoni high  thanks but i will pass. I feel like its reenacting the shingles virus. that was how i felt, like my nerves were on fire, hope its not happening.

I will see what the doc says on Mon they are dragging me in i appreciate your feedback.

Happy healing to all. 

[KimInTheForest]

I am glad you are getting into your doctor on Monday.

Good luck Nikki!

kim

[beto]

Hey Nikki,

I too have had some issues with PTSD.  I have found most helpful the work of Peter Levine and "Somatic Experiencing".  Profound feelings can come seemingly out of nowhere.  A mole hill becomes a mountain...I know the drill...peace

[Nikki]

Hey there,
I just saw this post sorry i didn't get back sooner. I really feel like I am losing me, the PTSD is awakened something more then regular symptoms. is it me or do you know where i am coming from? My moods and exhaustion are making my life a misery. I can't do anything i am either in the middle of a panic attack or want to sleep and crash. Not sure if its emotional or physical.

I want to go off of this stuff, i am not going to let my doc convince me other wise, i don't know where this is going to take me and i can't stand the feelings. I always said i don't do chemo why did they force this shit on me? my liver was fine.

[beto]

You are removing something that has become a part of your biology for years.  As for the drug itself, there is no being sure that the reactions are coming from the drug or the die off of HCV.  Indeed there are those that have had a rough time with it.  All's I can say (and it is just my experience) is to just allow the feelings to run there course.  Check out Perter Levine's books and web site.  It may help you with the PTSD arousal type manifestations.  There is also the dissociative "freeze" stuff that is just plain weird. Sounds like you may have exacerbated all kinds of old stuff and you are getting it all at once.  Believe me I know it is no picnic.  Work with your doc on the blood work.  The sudden drops in ferratin iron and many other issues...some thyroid...some emotional.  Folks have been reporting all kinds of things.  Perhaps "healing" from the HCV is far more complicated than just "slaying the Dragon".   It is a powerful medication that is for sure.  I can't gage your discomfort, nor should I try.  It is up to you, however, the first week or, two are doozies for a lot of people.  I had a fairly easy time on TX but those first few weeks had some challenges.  I know people who had a brutal time early and are coasting now.  Good luck and god bless.

[Nikki]

Thank you Beto i looked up that person on youtube and he was right, by using the slinky as a tool its zapping all my energy to keep the emotions in check. Running at 200 miles an hour and thoughts being shot into my head, constant thoughts like a tape recorder is making me feel i should be in a mental institution. Its not funny then i crash and begin to think i would be better off not here. That's scary. Its not me, i love the if you feel like you are going to hurt someone go to the ER stuff. It doesn't quite happen like that.

I also feel there is a huge monetary element to this and feel exploited, so i don't know if i can trust the docs at this point am i part of their "trials" or are they really concerned for my well being? The fact that they made and continue to push this 25 Billion dollar drug the same company had a person die in trials and didn't report heart attack from this. We are still learning. I just don't have time for any more pain in my life. In addition it is taking often months to recover from the recovery, not sure i am willing each day brings something new. I think its the agony of not knowing.

[BubbaT]

Hi Nikki, I read your story and felt compassion for you, I got thru the treatment and felt like you did in many similar ways you described, it was very difficult for me, my liver numbers were a lot worse than yours, but I would encourage you to hang on and get some emotional support. The first 3 weeks were the worst, then things got better,
I also have a lack of trust in doctors, I cleared the virus, and I did take off work until I finished the treatment. We know how you feel and offer you hope to get through it.

[Nikki]

Thank you to all who have been supportive. Just an update, arrived at docs with b/p 188/112 I am on meds and it has been stable, pulse 95. I always hear its white coat syndrome sorry NOT!

I think my issue was a bad mix of the pain med and Harvoni . Keep in mind this med is so strong it metabolized drugs in our liver much faster then other meds. Doc wanted me to stay on and adjust the other meds,  I was not willing. I did that once with something else and it was the definition of insanity. If I am having a bad effect from the meds why increase the meds? There is a black box warning on my pain med, this seemed to ramp them up or make me in a constant state of withdrawal. I only know for me each day was like a year. The mood swings and ringing in my ears and thoughts coming at me non stop was unbearable.

Its more difficult to determine what the cause is if you are not beginning with a blank canvas but I was concerned with stroke or a heart attack, how many meds are you gong to adjust for a zero viral load? For me and its just me, it wasn't worth it, the depression and rage had me worried I felt like I might have easily gone off as I became this "other person."

I discontinued at 14 days and feel like the old me, I have my feelings back, no mood swings, my body doesn't feel like a train wreck going 200 miles per hour.

My suggestion to newbies if you are on any meds or have a history of high b/p you might want to monitor your b/p and or adjust your med, this had me ready for a stroke. Not going to blame the doc but if I didn't push my way back in, this could have ended with a bad result. The med is still new and sides are coming in more and more. I predict a black box warning in time or there definitely should be.

To sum it up it wasn't my time, I should have had a better support team and all docs working together before I had this PUSHED on me and I mean PUSHED on me. To those who are doing well keep up the good fight, its better to have this behind you. I wish you healing and peace but don't just assume that because a side isn't listed its not real, we know our body's especially your heart. Be careful and happy healing. 

[FutureThinker]

Nikki, I've been thinking about you so was glad to see your post today.  You are absolutely correct in that all these DAAs are very new and there is an awful lot to learn about them! And, I believe it's extremely important that each person be very ready & totally on board to take on this treatment, as one does not know how they'll respond. That was one of my initial reasons to wait to treat, to try to get more info on these drugs and their effects.  But since I've had this ~ 40 years, I decided to take the plunge. I am so sorry you had this experience, but I am sure you are not alone. We are still on a learning curve. I can feel the relief in your words, so this sounds like the right decision for you. Just take care of yourself and you will know when it's time again to consider treatment.  Best to you, FT

[KimInTheForest]

Thanks for updating us Nikki. New Hep C drugs are coming on-stream almost weekly or monthly, it seems. It's like the floodgates have broken open after years/decades of nothing. I am sure there will be something that will work for you in the not-too-distant future.

Good luck!
kim

[Nikki]

Thank you all for your care,
Not sure what went wrong, I know it was a combo of meds. This happened to me with Prozac that was before the black box warning. It began great and went to some dark place of over stimulation where voices were saying hurt yourself? Really? I didn't feel that way prior to taking the med.

I am me again one day out, I don't know what the chemical reaction was, this just wasn't my time. It was two weeks of hell. glad its over.

Health and healing and watch your blood pressure