Author Topic: Harvoni and Anxiety (Read 63604 times)

lporterrn · « **on:** January 03, 2015, 04:49:36 pm »

How many of you on Harvoni have noticed anxiety as a side effect? If so,
a) Is it worse at certain times (like x-amount of hours after you take your pill)
b) Does it feel like anxiety or more like rapid heart rate?
c) Are you having trouble sleeping?
d) Did your doctor tell you this was a side effect?
e) Do you have tips on how to reduce it?

I've heard a handful of reports about anxiety, and because it isn't listed in the prescription info, please consider reporting this side effect if you have it. To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

nicole_1234 · « **Reply #1 on:** January 03, 2015, 10:54:20 pm »

Thank you for researching this topic Lucinda. Here are my answers below.

A. Yes, I take the pill around 1 PM each day and feel anxiety come on more in the early evening. Sometimes it's great (my house is really clean because I can't sit still). But sometimes it becomes too much. The first 3 nights on the drug caused insomnia and I was up until 4am each night, feeling wired and nervous. I gradually began to be able to sleep earlier but the anxiety started to build up.

B. It does feel like rapid heart rate but also nervous energy and very "on edge". And one time a full-blown panic attack, after built up hours of this manic energy. Also the brain fog makes me feel very anxious because I'm searching for thoughts and my head is heavy and not responding sometimes.

C. No, only the first few days.

D. They gave me a questionnaire similar to one they would give to check on bipolar disorder before I begin treatment. It asked me if I had cried in the last week and how many times. It asked me if I had thoughts of suicide or had ever wanted to kill myself.and general questions about if I was happy or not, had lost my temper, etc.

E. Warm baths really help me to relax. Walks and cuddling with my dog. Meditation has been very hard because my mind running, but I'm forcing myself to sit for 20 min 2x a day and it's probably helping, I feel calmer after.

I should caveat all this with the fact that I have been diagnosed with anxiety disorder before. But this was after my first treatment with interferon/rib and that when I really started having anxiety. I feel like the drugs did something to me. And I've felt really good the last two years and not had any anxiety attacks until I began Harvoni, so for me it may be an extra sensitivity and these drugs just don't sit well with my delicate nature.

I will report to both my doctor and Gilead.

lporterrn · « **Reply #2 on:** January 03, 2015, 11:04:52 pm »

Just for the heck of it, try taking your pulse early in the day, and then when you feel anxious. Sometimes changes in heart rate feel like anxiety. It's good to know which is which.

dragonslayer · « **Reply #3 on:** January 03, 2015, 11:33:55 pm »

Lucinda, I notice no difference in anxiety level since Ive been taking Harvoni.

Lynn K · « **Reply #4 on:** January 04, 2015, 12:11:58 am »

No anxiety

Resting heart rate 51 BPM

Rubye · « **Reply #5 on:** January 04, 2015, 01:06:10 am »

On S/O I had anxiety and heart fluttering and extremely high BP (170/110) around week 4-6 and then it all stopped. During the last 3 months I always feel better within an hour after taking my meds. The worse time for me would be around 5pm. Still is, but I only have mild anxiety. I take S/O at 7pm. My PCP attributed my high BP to the meds.

kate0b1 · « **Reply #6 on:** January 04, 2015, 07:21:36 am »

I have not noticed any but I just replied to the other post about anxiety, Lucinda do you know if taking passion flower while on meds is ok? My daughter had crazy panic attacks last year after a car accident, I really did not want her on ativan, zanax, or even an antidepressant while she was away. Her therapist recommend passion flower and along with the gym and yoga she did really well.

lporterrn · « **Reply #7 on:** January 04, 2015, 12:45:21 pm »

I don't have a clue about passionflower and the meds. Personally, I wouldn't take it during treatment. Cognitive therapy is such a good resource, that I'd consider that first.

kate0b1 · « **Reply #8 on:** January 05, 2015, 06:30:20 am »

Lucinda, I have to agree with you on therapy vs meds. I would hate to have to take anything at all during treatment and am happy I only take a multi vitamin, there is also the possibility that my daughters therapist recommended the passion flower as a placebo effect. Many of of her friends at school were telling her to take a variety of different meds, I was pretty happy her therapist was not into meds at all. That being said, having a front row seat to someone falling apart in her senior year of college was hard and I would have grabbed at anything (except meds lol) to help.

rjrnj · « **Reply #9 on:** January 05, 2015, 05:57:03 pm »

Have been on Harvoni since 10/31/14 and have experienced anxiety. I also have trouble with sleep,very amped up. Should I report this to Gilead? This is my 4th time on treatment and I have to admit these are pretty mild side effects relatively speaking.

FRED220 · « **Reply #10 on:** January 07, 2015, 10:01:14 am »

Hello to all, I am very surprised that not that many people have replied to this topic. I have search in other sites and only a few have complained about anxiety, some of them had prior anxiety issues. When I start taking any new med I too feel anxious and worried as to how I am going to react to the new med and then as the time goes by and see that I will be okay the anxiety mysteriously disappears:)

nicole_1234 · « **Reply #11 on:** January 07, 2015, 02:19:48 pm »

Yeah, I'm starting to realize it's more in my head than due to the medication. Worry of starting treatment again after the brutal int/riba combo and some external factors and stress in my life piling on to the slightly agitated feeling from the medicine. I think it all just added up. I'm feeling much better now. 5 weeks in and vl undetected.

Lynn K · « **Reply #12 on:** January 07, 2015, 02:27:58 pm »

The only stress I felt on taking that first pill in my head thinking "well here we go I sure hope this works this time"

FRED220 · « **Reply #13 on:** January 07, 2015, 02:48:41 pm »

Hello ladies, I will share with you that on Oct. 2012 I was told that I possibly had bone cancer and was referred to UM Hospital. Before I made it to UM I developed high blood pressure and palpitations that I had never had before. My appt took 2 weeks and the palpitations along with the high B/P was so bad that I had to take Metropolol to calm it down. To make long story short, when I was told I have no cancer but a benign lesion my B/P and palpitations where gone and I stopped the Metropolol. Today I am real careful as to how I THINK after that experience.

nicole_1234 · « **Reply #14 on:** January 07, 2015, 02:54:29 pm »

Thank you for sharing that Fred, and I'm really glad you're okay. Yes the mind and "thinking" are a tricky thing. It's amazing how one thing can trigger another. And I do believe the mind and body are so intrinsically connected that when the body's off the mind can stop working correctly and vice versa.

Calico17 · « **Reply #15 on:** January 08, 2015, 08:42:55 pm »

Hello Calico17 here: I had some anxiety or really what was a very fast pulse rate with high BP, but all seems to have stabilized my third week almost complete. I feel like I have a lot more energy now, and I am more focused. Hope this treatment works for all!!!

Mugwump · « **Reply #16 on:** January 09, 2015, 01:43:10 am »

Quote from: lporterrn on January 03, 2015, 11:04:52 pm

Just for the heck of it, try taking your pulse early in the day, and then when you feel anxious. Sometimes changes in heart rate feel like anxiety. It's good to know which is which.

I did notice some increase in my general levels of anxiety and some kidney area aches and pains but being an old fart that is rather used to pain I did not panic and just carefully made sure I did not over react to things.

Here at just over 5 weeks of taking Harvoni settling into a routine of taking the med at 6 am has worked for me and now the headache, brain fog and anxiety are all beginning to ease off. So perhaps the anxiety is due to a sudden change related to an increase in water intake and it takes some time for the individual to adjust to drinking more water and passing more water.

I did immediately notice in the first week if I did not drink enough fluids I quickly became parched with a dry mouth. Now after over a month my mouth has returned to a more normal level of saliva.

I can see how one could easily become very anxious and dry mouthed on this medication if their system somehow does not hydrate well for any reason.

Just a thought but this is my experience to date.
eric

Calico17 · « **Reply #17 on:** January 10, 2015, 12:59:31 pm »

Hi Mugwamp! I agree, not with the "old fart" part (LOL), because I am approaching 60 years young (YAHOO!) the beginning of March, but for those of you just starting Harvoni, drinking tons of water is a must or at least as much as your system will allow. Individual needs are unique. I myself set out 4-5 - 16.9 oz. bottles everyday and make sure I drink all of it, sometimes more. I am into week 4. I do experience from time to time a headache upon awakening, but I start moving around and drink a full glass of water first thing. Since I cannot bear cold water first thing in a.m., I warm it up and squeeze a half a lemon (good cleanser for the liver, too) into it. My B/P seems to have gone back to normal (that could have been part of my anxiety as well). But, here is another thought. I do know from reading the "GIANT" label attached to the Harvoni bottle that Harvoni can interact with certain drugs, either increasing their potency or lessening them. I like my coffee strong in the a.m. but noticed my anxiety level did not ease until around 1:00 p.m., remembering the label, I cut back on the amount of caffeine I was ingesting. It worked...caffeine is a drug after all. So, far I feel fine. In fact, better than that.

mookie5150 · « **Reply #18 on:** January 11, 2015, 08:02:23 am »

I started Harvoni on Christmas day- my Christmas miracle I like to call it because I was one of the blessed ones who got the 5 dollar copay from Gilead. I take my at 5 am. I waited and waited for the headache and fatigue but they never came- instead I have not been able to sleep for the 18 days since I have been on it without the assistance of some type of sleep aid- which makes me groggy the next day. Taking Harvoni is like a taking a hit of speed for me- once it kicks in I am ready to clean and shop and do things I have put off for years. I have noticed some involuntary hand trembling when I am at work also. I also have dry mouth- have to remind myself and force my self to drink water. Also not much of an appetite- but that I am not complaining about. Took my first blood test and will find out in two weeks how well-or not the drug is working. I am hopeful.

lporterrn · « **Reply #19 on:** January 14, 2015, 12:09:35 am »

Thank you everyone for this great feedback. I appreciate it.

Calico17 · « **Reply #20 on:** January 14, 2015, 07:27:01 am »

You are welcome.

I am learning so much from this site. I am grateful. Thank you all.

pmm · « **Reply #21 on:** February 05, 2015, 06:17:50 pm »

I was completely fine for the first 4-1/2 weeks of treatment (I started 8 weeks of Harvoni on 12/27/14). Then I woke up last Saturday feeling dizzy and lightheaded. I checked my blood pressure (it has always been low-normal) and it was high. I don't know if that triggered the anxiety but I have been very anxious since. Even my 4 week results of undetected did not make me feel better. Maybe because when I went for my 4 week results she also said my ammonia plasma level was very high (148) and I looked at old blood test results and that has always been normal and was normal at the blood test just before treatment. I have never had anxiety before and I just hope it goes away at end of treatment (2 weeks and 2 days)!

Deborah · « **Reply #22 on:** February 12, 2015, 09:12:00 am »

I found myself with so much energy that I was almost bouncing off the walls in comparison to my normal self. It wasn't until week four, when I saw the doctor for my first blood work, that I learned my blood pressure was quite high (at least for me). I would suggest that those of you who are failing amped up and anxious might want to also check your blood pressure. This seems to be a side effect that Gilead doesn't know about or hasn't reported. We should be reporting this to our doctors and to Gilead directly because it is an important side effect. The good news is that I ended my treatment one week ago and my blood pressure is back to normal.

Mugwump · « **Reply #23 on:** February 12, 2015, 11:35:20 am »

Quote from: Deborah on February 12, 2015, 09:12:00 am

I found myself with so much energy that I was almost bouncing off the walls in comparison to my normal self. It wasn't until week four, when I saw the doctor for my first blood work, that I learned my blood pressure was quite high (at least for me). I would suggest that those of you who are failing amped up and anxious might want to also check your blood pressure. This seems to be a side effect that Gilead doesn't know about or hasn't reported. We should be reporting this to our doctors and to Gilead directly because it is an important side effect. The good news is that I ended my treatment one week ago and my blood pressure is back to normal.

Thanks Deborah for taking the time to tell us who are undergoing treatment that their bp should normalize post treatment!
I have at times had my bp up far too high and am at week 10 of 24 so I am a little concerned. But I have a good ticker so if I back off the caffeine, smoking and get some gentle exercise I shouldn't pop a gasket. Touch wood.

The anxiety went away in my situation back at week 5 but only after I found out my liver panel was the best it has been in 30 years! So there is definitely a high level of the anxiety associated with fear of the unknown with this med as well as anxiety issues cause by increased blood pressure at least for some in treatment.

I will link this back to the side effects thread

mario555 · « **Reply #24 on:** February 12, 2015, 12:01:35 pm »

Just a quick add-on for my "anxiety problem". My anxiety crisis come on real fast in a matter of seconds. They also didn't last long, maybe an hour. They are totally different from anxiety I might have suffered from in the past. On Harvoni, I have a sense of 'dread'. I am feeling kind of scared. I did have work related anxiety crisis in the past but I felt more like I was having a heart attack! No dread, scary feelings like on Harvoni. Good thing they don't last long...
The anxiety problems with Harvoni stopped after 7-8 weeks. As related in another forum, I only have shitty moods and impatience left ; not the best combination to have...

Islandgirl · « **Reply #25 on:** February 12, 2015, 01:18:10 pm »

Mario, you put into words what's been (unfortunately) happening to me lately - I just didn't have it at first but in the last couple of weeks your description is exactly what I've been struggling with. ...Islandgirl

Love · « **Reply #26 on:** February 14, 2015, 08:19:12 pm »

I have been on Harvoni for almost 2 months. My liver enzymes returned to normal and my viral load went to 40 in less than a month. My sides are : fatigue, insomnia, and anxiety. I am in amazement of this drug. I didn't know how bad my brain fog was until now that it is lifting. After interferon, this is a walk on the beach!
Anyway, I usually report to the Docs what I feel from the therapy.

Love · « **Reply #27 on:** February 18, 2015, 11:24:00 am »

This is second month and I have fast HR for about 6 days now. EKG is normal otherwise. HR between 85 and 100. They said I have anxiety. Duh! IKR! I have a PhD in pharmaceutical science. I think it is a side effect but I am not worried about my heart. It probably has to do with the rapid clearance of virions and the shift of cytokines and other immune responses the body is making to establish homeostasis. Just my educated guess. I was having a lot of extrahepatic manifestations from chronic hcv but my liver function was great. I have so much energy now and my brain fog is gone. This is nothing short of a miracle for me. I pray that everyone on this drug will be cured. And when MDs try to tell you it is in your head......just quietly say to yourself..."Bless his/her heart"
They are still practicing. LOL!

MEG · « **Reply #28 on:** February 18, 2015, 07:35:46 pm »

Quote

As related in another forum, I only have shitty moods and impatience left ; not the best combination to have...

@ Mario and Islandgirl. Thanks so much for talking about your moods while on Harvoni. Mario, did your impatience get worse while you're on Harvoni?

@Love, it's wonderful to hear you're feeling so well. I'm in week 4 since last night and if not for a string of underlying cold viruses I think I'd be feeling better than I am today. There's something deep inside that feels different----better--. Hard to put into words.

Do you mind sharing which extra hepatic issues you had? I do also. Mild kidney impairment, depression, brain fog, perhaps thyroid(I'm on synthroid)....along with lots of issues with fatigue.

Mugwump · « **Reply #29 on:** February 19, 2015, 09:14:06 am »

Quote from: Love on February 18, 2015, 11:24:00 am

I think it is a side effect but I am not worried about my heart. It probably has to do with the rapid clearance of virions and the shift of cytokines and other immune responses the body is making to establish homeostasis. Just my educated guess. I was having a lot of extrahepatic manifestations from chronic hcv but my liver function was great.

I edited your quote, please forgive.

Hypothesis here for me is that the sudden excess of bilirubin and in consequence hyper renal functions causes an increase in mean hemo pressure on the nervous system of the liver and kidneys could be causing anxiety. Because this change then triggers the adrenal system of the body in individuals to varying degrees. Much the same as when a boxer becomes too anxious and makes defensive errors in latter rounds of a fight when he has been hit by too many punches to the abdomen. Managers call this process "softening up the opponent" so it is very true that anxiety can be caused by nerve stress in the vital organs especially the liver.

I am on week twelve and the effect and my spike in blood pressure and heart rate is gone, which means that my liver must be almost clear of the excess of dead cells that needed to be cleared out.

To conclude the theory the side effect of anxiety while on Harvoni should ease and be gone by the end of a 12 week treatment by then the liver should be healing itself and be functioning normally to a level possible depending on the degree of permanent scaring to the vascular structure.

All in all a small price to pay for the real chance to rid oneself of the horrible disease IMO

Eric

MEG · « **Reply #30 on:** February 19, 2015, 10:05:24 am »

Quote

Hypothesis here for me is that the sudden excess of bilirubin and in consequence hyper renal functions causes an increase in mean hemo pressure on the nervous system of the liver and kidneys could be causing anxiety. Because this change then triggers the adrenal system of the body in individuals to varying degrees.

I apologize, Eric. But I'm not sure I understand....

Love · « **Reply #31 on:** February 19, 2015, 12:05:46 pm »

Good Morning Meg and Eric,

I really don't have any clue to what is causing the anxiety LOL!
But, the adrenal system is probably in the running.
I am making an effort to mentally relax and direct my new found energy into getting a job and having some fun!

I also have been diagnosed with fibromyalgia, arthritis, depression, anxiety, fatigue, neuropathy, IBS, and keratoconjunctivitis. Up until a month ago I was on hydrocodone, antidepressants, and various nausea pills. At one point I was having problems picking up things and walking. I was suicidal. I am not having ANY of these problems now. (my eyes are now responding to restasis; I have had three incidences of corneal ulcers in the past few years and they were constantly blood shot)

My history: Army Medical Lab 1991 dx, rebetron or intronA 1991, 1999 +ribaviron, 2009: responder but unable to complete due to side effects.
liver biopsy 1999 mild or minimal fibrosis. slight elevations of ALT/AST only

MEG · « **Reply #32 on:** February 19, 2015, 01:31:27 pm »

Quote

also have been diagnosed with fibromyalgia, arthritis, depression, anxiety, fatigue, neuropathy, IBS, and keratoconjunctivitis. Up until a month ago I was on hydrocodone, antidepressants, and various nausea pills. At one point I was having problems picking up things and walking. I was suicidal. I am not having ANY of these problems now. (my eyes are now responding to restasis; I have had three incidences of corneal ulcers in the past few years and they were constantly blood shot)

HURRAH!!!! That's amazing.......congratulations and thanks for sharing. It gives me so much hope!

Mugwump · « **Reply #33 on:** February 20, 2015, 03:09:36 am »

Quote from: MEG on February 19, 2015, 10:05:24 am

I apologize, Eric. But I'm not sure I understand....

That's fine MEG and that is just me, I read far too much and tend to over-analyze things. My level of liver pain and pain in the kidneys slowly increased in the first eight weeks of treatment. The natural reaction for me was to just say "oh well, just hope it is not cancer or some other monster out to eat me up!" (you see my liver blood panel is absolutely normal now and no other signs of problems are showing up). So hitting the panic button was not called for in my situation.

So the slow increases in blood pressure and pain and the onset of anxiety that it caused made me just think carefully about what is happening to my system instead of pestering the hep clinic nurse and my GI over the phone and getting meds to deal with a small amount of fear and pain.

My answer to the anxiety and stress was do things like study music, recording and fishing instead especially getting good exercise while keeping my mind and body very active. Obviously if I were to go into serious pain then I would just go to an emerge dept with a detailed history and contact info for the hep clinic and my GI. Panic is not a good thing to ease the stress of treatment and taking more meds might not be the best answer IMO.

Even before I started on this treatment I thought carefully about how to handle the worst scenarios but planned for the best!

So far so good with twelve weeks left in the treatment.

At week twelve the pain in my upper right quadrant and troubles with kidney area pain have gone. I am sleeping again, the tinnitus is backing off and brain fog has cleared. My sense of joy in life is back.

Even though I know that I will be needing to go back to work almost full time post treatment and will need to work off some debts, the knowledge that this time post treatment, not having to work in constant pain with the fear of every little cut, (I work doing food preparation so you get the idea!) has made see treatment in a very clear perspective.

To sum this up, those of us with advanced cirrhosis who undergo Harvoni treatment can experience slightly more hepatic pain, increases in BP, renal functions that can cause renal stress and kidney pain, bowel troubles, anxiety, sleep problems and other side effects to some degree. Obviously If these effects worsen suddenly to the point where one cannot cope then there is a need for close medical supervision and we should visit an emergency room.

Hope both you and Love clear the virus and find the treatment as easy as I have in the long haul. No use worrying about other things when you have the real thing to deal with ridding oneself from this horrible disease for good first!

Love that is fantastic. Being free of the treadmill and downhill spiral of this disease is so uplifting I am sure many of us with a new perspective on life and a new found joy, will with good ambition and gifts of spirit, be able to give more back to others in life because of finally being cleared of this debilitating disease!

Eric

MEG · « **Reply #34 on:** February 20, 2015, 11:46:34 am »

Hi Eric, Thanks for the thoughtful explanation. That was a beautiful post. I'm wishing for you all that is good and beautiful as you move onto the next chapter of your life.

Love · « **Reply #35 on:** February 20, 2015, 06:44:57 pm »

Hey Guys,

Just came across this information from Gilead: http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf

Anxiety and other symptoms were listed as side effects occurring at a low frequency.

Calico17 · « **Reply #36 on:** March 08, 2015, 11:41:17 am »

Thank you so much for the research Love. Good to know.

morning_glory · « **Reply #37 on:** March 10, 2015, 11:32:15 am »

BTW - I am not on Harvoni, yet...

Due to several things going on in my life, I have been experiencing more anxiety, than usual. My chest would feel pressure/discomfort, etc. (I thought it was my heart, at first). So I went to the internet, looking for 'answers'.

I was reading the posts here and wanted to reply. I hope this will be helpful to someone, whether you feel chest discomfort or not. I have tried it several times and it seems to work for me.

"The symptoms of anxiety attack will positively respond to anxiety-control techniques, like deep breathing and relaxation exercises. Here is one powerful technique to stop chest pain in a few seconds. It is best done sitting but can also be done standing or lying down:

1. Sit with your back straight and your hands in your lap or on your thighs. Close your eyes. While doing this keep the tip of your tongue touching the top of your mouth. When you inhale – do it through your nose. Exhale through your mouth. Ready?

2. Start inhaling slowly for 4 seconds (count them in your head not out loud). Push out your stomach and fill your lower lungs first like that. Then the rest of the lungs are filled.
Hold your breath for until you count to 7.
Exhale comfortably for 8 seconds.

Try to imagine that all the anxiety is leaving your body while you are exhaling. You are letting it go.
Pause for 2 seconds without inhaling (very important) and do this one more time."

http://healthworkscollective.com/frmeital/34420/how-stop-anxiety-induced-chest-pain-30-seconds

MG

Victori · « **Reply #38 on:** March 10, 2015, 04:14:26 pm »

Hi Lucinda. Just noticed this topic and am happy to be able to respond. YES, I am experiencing almost debilitating anxiety at irregular times. Life's difficulties have forced me to faith in God's help, prayer, deep breathing, chamomile tea, exercise, etc., etc. So I'm exercising all these a lot since starting an 8-week tx. of Harvoni 2/19/2015. The past 2 days have been the worst, having to call in sick and vegetate at home trying to comfort myself and pull myself together.
Since I had not heard anywhere of anxiety being a side effect, I've been pretty upset with myself feeling I'm overreacting totally to feeling lousy and being freaked out about hanging in there for the duration; remembering to take my pill on time (I have 3 alarms set & still almost miss it); having to carry such an expensive and vital pill in my purse (tomorrow I pick up a new 4-week Rx - God help me not lose my purse!); plus I've been afraid to say anything to my Doctor in case he might want to take me off the Harvoni (although I know he and his staff worked so hard to get it for me he would surely want to help me see it through).
So I guess it's pretty obvious, YES I am experiencing a lot of anxiety. Yesterday, day 19, I just cried all day. There are a lot of considerations - I've never been ill since my dx. in 1993, hence have really never dealt with having HepC - now it's uppermost in my thoughts and I really do feel sick, plus I am one of the world's oldest BIG BABIES!
I feel this is all so irrational - this is a wonderfully positive, miraculous opportunity for me. I should be so happy and grateful instead of freaked out and sick. Compared to what so many others have been through with various treatments, this is a walk in the park. Already had my first good report - liver enzymes down after just 2 weeks. I see my wonderful G.I. specialist tomorrow. I know he'll be very encouraging and I know with God's help I'll get through this, get stronger, be healed. Hallelujah!
Thanks so much for this opportunity to share my experience and God bless you.

Tpropane · « **Reply #39 on:** March 11, 2015, 04:01:53 pm »

Hi HCV Peeps.
Starting week 7. Will have 8 weeks down on St. Paddy's.
Headache check
Fatigue check
Now just starting to have anxiety / depression holding hands and skipping through my positivity garden. Day 2 in jammies, reading watching old movies and 0 energy.
Hopefully a short phase. Usually I'm tough as nails. Not a worrier, No previous history of anxiety, crying and feeling totally sorry for myself, Not a complainer. If my doctor suggests an RX that doesn't compound fatigue, I might ask to have (In case of emergency, break glass) some on hand. Also I've been in a REALLY grumpy mood!!!
49 days down only 119 more days to go...
Trying to stay grateful, grateful, grateful...
TPropane $:-\$

FreeofC · « **Reply #40 on:** April 14, 2015, 10:17:54 am »

Hi Lucinda,

Contacted HepC 1969 thru a blood transfusion
Interferon/ Ribavarin 1 year 1999 non- responsive
Diagnosed 1998 genotype 1a
As of 2014 ...stage 3 non cirrhosis
Started HARVONI 2/12/15 24 week treatment

4/6/15 undetected
Ast 32
Alt 25

Side affects the first month...headaches, fatigue, dry mouth.
Increased water intake to 12 glasses daily
Second month headaches gone and fatigue much improved! Dry mouth still an issue but using Biotene mouth products helping.
Exercising daily, eating clean, sleeping good and taking good care of myself.

But I am now having issues with my BP and anxiety. At this point not sure which one is causing the issues. Seeing hypertension doctor and they are working on a way to control my morning spikes in BP.
I take HARVONI at dinner and then my BP meds around bedtime. Lately When I wake i feel anxious, chest fluttering and BP is very high, 187/90 this morning! Docs added 2 more BP meds for the morning to help bring it down and it does but not enough.

I do not like to complain because HARVONI is a cinch in comparison to the treatment I took in 99! When I read your blog it made me realize,that the HARVONI maybe causing this Spike? Interestingly enough, the PENN pharmacy told me to keep an eye on my BP about 2 weeks ago! So I started taking BP daily and that's when I noticed how night it was! But when I told the doctor about the Spikes in the morning, they said that they think it is unrelated!!

BubbaT · « **Reply #41 on:** April 14, 2015, 05:06:59 pm »

while taking Harvoni,

Edited so I wouldn't sound like I know it all. Lol. Freeofc

before taking Harvoni I was anxious because I did not know very much about the long term success stories of patients... And I didn't know how sick I was...learned I was F4.

After starting tx and experiencing side effects, similar to those in the prescribing info,
I am thinking ok, I can handle this, and then I experience anxiety going thru fever and chills and feeling like I'm about to it cash it in, but other that that I'm good! Lol

but I have less anxious thoughts now at week 6 and I am feeling much better overall,
I have experienced a slow increase in Bp, but I have also went on a liver diet and lost 10 lbs. and I'm going to continue getting well...

So my anxious thoughts are gone...

FreeofC · « **Reply #42 on:** April 14, 2015, 09:35:15 pm »

No quite sure what Bubba means? I've done exstensive research on Harvoni prior to taking it and know the power it has and have faith that it will cure me. But ...hadn't any anxiety/ or BP issues prior to taking it ...Just appreciative and filled with pure joy! I do have immense Trust, and hope in HARVONI and I am grateful that I hardly have any side affects at all ...but I am also knowledgable enough to understand that all medications can affect people in different ways, which is quite evident when reading this Blog!

coloradogirl · « **Reply #43 on:** April 15, 2015, 01:30:18 am »

The first two weeks, I experienced a lot of emotion. I cried at the drop of a hat. It couldn't have been anything else but the medication. Since about 3 weeks into the treatment, it has subsided. I do feel some anxiousness, accompanied by fatigue. I go to the gym, drag my butt into a class, and feel much better within 10 minutes of activity. On days that I do not work out, I feel more tired and anxious. I also feel like I'm losing muscle mass, and when working out, I feel oxygen deprivation in my muscles.

ponygirl · « **Reply #44 on:** April 15, 2015, 06:06:47 pm »

2 hrs after taking the Harvoni, I have irregular heartbeat (arrhythmia and tachycardia) increased BP and rapid pulse. I normally have low to normal BP and although I had mild arrhythmia going into TX...un-noticeable symptoms managed by exercise, water and increased potassium intake and 7 hrs of regular sleep a night, there was none of the 3-4hrs of heart palpitations.
My Cardiologist and Gastro are tracking this. I was told that if my resting pulse is 100+ for one day I need to be seen.

I am taking hydroxyzine to decrease the anxiety that is caused by my irregular pulse at physician recommendations.

I hope the symptoms go away at week six like they did for a previous poster.

My normal resting pulse is 65-70, it is 80-90 on TX. I will do some BP checks before and after taking the Harvoni tomorrow. I was attributing this to the Ribavirin which I take with the Harvoni and 12 hrs later but I do not have the symptoms with my PM Ribavirin.

MEG · « **Reply #45 on:** April 15, 2015, 08:11:27 pm »

@ponygirl

Ah shux. I'm so sorry you're having problems with your heartbeat...

Which arrhythmia were you diagnosed with? Are you on medication for it?

I see that you're closely followed by your cardio and gastro. That's great...I can imagine how unnerving it must be, though. I get an occasional spurt of PVC's(most of my adulthood) and I know that feeling of wondering if your heart is going to get back to normal.

MEG · « **Reply #46 on:** April 15, 2015, 08:17:27 pm »

@ponygirl cont'd

What is your timing of taking the hydroxyzine in relation to the Harvoni?...this may be something to ask your cardio. Whether preempting the anxiety caused by the arrhythmia by taking the hydroxyzine within a certain window before taking the Harvoni.

Sort of like putting the brakes on the cycle of arrhythmia/anxiety which in turn increases your heart rate as a result of the anxiety. I wouldn't feel comfortable making recommendations without checking in with your doctors...

ponygirl · « **Reply #47 on:** April 16, 2015, 12:48:20 am »

Supra Ventricular but it is usually really manageable. I have never had to take medication. Cardio Doc says I have to do moderate exercise 1 hr a day. So I used to power walk the dogs in the hills but for the past week its been a slow crawl up those hills I get so winded. I am .5 above anemia level so I am attributing the lower H rates to the Ribavirin.

no idea as to which med is causing the blood pressure, rapid pulse, and arrhythmia.

The pharmacist and Gastro recommended prophylactic hydroxyzine 3x a day to manage the anxiety.

MEG · « **Reply #48 on:** April 16, 2015, 01:13:09 am »

Ok---you never needed treatment for your supra-ventricular tachycardia. That's great.

I forgot you were also on Ribavirin. That you're on the edge of being anemic makes me wonder whether your anemia is contributing---stress contributing---to your bouts of tachycardia. It's very common---increased heart rate, that is, to be one of a constellation of symptoms of anemia...Yet, it's happening within just a certain time frame after you take the Harvoni....This makes my theory less likely but I believe still worth asking your doctor. It's like all of us on this therapy have this delicate "dance" going on inside of our body---that's unique to each one of us. One of yours is your heart's sensitive nature re: increasing the rate at which it pumps.

How did you do today? How long did the tachycardia last? I'm just trying to pick my nursing brains and see if I can be of any help====>you're doing an awesome job managing yourself, though.

You're so right about adequate potassium intake. I take a diuretic(for this tendency of my legs to retain fluids----I also have lower than normal blood pressure all my life)...and I have to be very careful about getting enough. It's hard!

What foods do you concentrate on? I'm always looking for tips on how to keep my potassium intake adequate. without all the sugar-fillled electrolyte beverages out there...

I hope this all gets easier and resolves itself, pony girl. Hugs, Meg.

FreeofC · « **Reply #49 on:** April 16, 2015, 08:43:29 am »

First I want to say I that I am in my 64th day of HARVONI, with 104 days to go

FreeofC · « **Reply #50 on:** April 16, 2015, 08:57:54 am »

First I want to say I that I am in my 64th day of HARVONI, with 104 days to go

FreeofC · « **Reply #51 on:** April 16, 2015, 09:12:40 am »

Having issues with my last comment only one sentence got through!

This is my 64th day on Harvoni with 104 days to go and I feel very good! Sleeping well, no stomach issues, exercising, eating well, healthy otherwise, drink lots of water and progressing with my life so much that I leave for a trip to Rome in 3 weeks! (Approved by doc) I do yoga, and meditate to hep myself as well
But I am dealing with one problem, anxiety, which started a few weeks ago and then eventually triggering high blood pressure numbers especially in the mornings when it spikes very high. Whether the BP issue is a result of the anxiety is a puzzlement at this point. ( I take my Harvoni at 6pm each evening)
And like everyone else I hate to complain to my GI doc for fear they will take me off the medicine.
So I will do whatever necessary to get the numbers down. It has been suggested that I take Adivan to help with the Anxiety but I have chosen to wait to see if they BP can be controlled some other way.
Thanks to Lucinda Porter for beinging up this very important issue and helping me to understand that everyone reacts differently to medication.
Thanks to to LOVE for suggesting we contact GILEADs website on anxiety.

ponygirl · « **Reply #52 on:** April 22, 2015, 05:01:43 am »

Wanted to check in again and respond to Meg. I am still having higher BP and pulse rate but it is not spiking as high as it was for the first 4 weeks. They reduced the Ribavirin at week 4...and I am now able to manage the depression symptoms without antidepressants.

I still have anxiety 2 hrs after taking the Harvoni. It appears to have become more manageable at week 6. I take 1 hydroxyzine with my Harvoni and Ribavirin in the AM.

MEG · « **Reply #53 on:** April 22, 2015, 02:33:19 pm »

@ponygirl

Thanks so much for letting us know how you're doing. And delighted to hear that the anxiety and tachycardia are subsiding/becoming more manageable. Coming off antidepressants is awesome...

Keep the faith. You're midway thru and I hope your symptoms continue to even out for you.

ponygirl · « **Reply #54 on:** April 22, 2015, 09:43:39 pm »

I talked to the psychiatrist who is prescribing the anti-anxiety medication, He said, "Gilead and the FDA need to be aware that people are experiencing anxiety and sleeplessness on Harvoni. It is the only way that they can monitor side effects on new drugs on the market".

MEG · « **Reply #55 on:** April 22, 2015, 11:28:17 pm »

Ponygirl...your psychiatrist is right. Will this person be reporting this? If not, I encourage him or you to do so.

Here is a link to the FDA with forms you or he can download and fill out.

http://www.fda.gov/Safety/MedWatch/HowToReport/DownloadForms/ucm2007307.htm

CHepCFree · « **Reply #56 on:** June 13, 2015, 01:16:50 am »

Mood issues and irregular heart beat are side effects of Harvoni. See www.gilead.ca. Much more informative than the US information. Take care.

KimInTheForest · « **Reply #57 on:** June 13, 2015, 01:25:19 am »

Quote from: CHepCFree on June 13, 2015, 01:16:50 am

Mood issues and irregular heart beat are side effects of Harvoni. See www.gilead.ca. Much more informative than the US information. Take care.

Interesting. Thanks for posting this. I have had occasional irregular heartbeat since starting Harvoni+Riba.

kim

Mugwump · « **Reply #58 on:** June 13, 2015, 10:48:47 am »

Quote from: KimInTheForest on June 13, 2015, 01:25:19 am

Interesting. Thanks for posting this. I have had occasional irregular heartbeat since starting Harvoni+Riba.

kim

Yes I suspect that those of us who have long term liver damage are effected much more by this treatment than those who have less liver damage. It only makes sense that the sudden renal pressure changes created by treatment might cause stress on the cv respiration system and in turn take some time to normalize. My stamina is not back yet but does seem to be getting better and the heart beat irregularities though still noticeable at times are becoming less frequent.

As I progressed to F4 having momentary heart flutter became almost the norm so it is hard for me to determine how much of the pounding in my chest and fluctuations in heart rate were caused by treatment. Fortunately there has not been any indication that the stress that Harvoni put on my system has done serious damage and I have never had cv issues in my life other than what has occurred due to being overweight and smoking.

Then again being out of work for almost a year, not being able to exercise the way I normally do because of HCV related liver damage, most likely caused the issues I am experiencing.

All that being said I am going to insist upon a full cv work up in August when at UND 12 weeks!

I think it might be a very good idea to do a full ecg, blood gas, electrolyte, stress and lung capacity for those of us who experienced heart stress and heavy renal stress during and after Harvoni. I feel a full cv diagnostic should be done before and after Harvoni for those who needed 24 week or are at F4.

It all comes down to health, diet, exercise and a healthy sense of self worth. Indeed long term stress on oneself resulting in of a loss of self esteem because of what HCV has done to us, can become as damaging to the body as it is to the mind.

Take care and help your health care professionals learn how to deal with this important new treatment!

Eric

KimInTheForest · « **Reply #59 on:** June 13, 2015, 11:34:41 am »

Good suggestion, Eric, about getting a full CV workup at 12 weeks post-tx if heart stress was involved. I am also on ribavirin (as well as harvoni) so do have anemia kicking in now at Week 6, which places stress on heart. My resting heart rate is around 100 right now

And my hemoglobin and RBCs are below normal. Not sure at what point I need to worry about heart and ask to be dose-reduced. Don't want to wait til after the heart attack…

kim

tecgirlrn · « **Reply #60 on:** June 14, 2015, 12:59:02 pm »

a) I had anxiety for the first 3 days after starting the pill, it came on approx 4-5 hrs
after taking my pill. I have not experienced it since, I wonder if I might have been
anxious about starting the medication.
b) No rapid heart rate, not sure if it was truly anxiety, but I was restless and could not
sit still, almost as though I was hyper.
c) No problems with sleep whatsoever, I'm out within 10min of my head hitting the
pillow.
d) Yes, no advise given.
e) I started working out, that seemed to help.

I did report it to the FDA.

Mugwump · « **Reply #61 on:** June 14, 2015, 11:26:39 pm »

Quote from: tecgirlrn on June 14, 2015, 12:59:02 pm

a) I had anxiety for the first 3 days after starting the pill, it came on approx 4-5 hrs
after taking my pill. I have not experienced it since, I wonder if I might have been
anxious about starting the medication.

Thank you for posting about what you have experienced.

I rather expected to undergo some level of anxiety upon taking this drug so this part came as no surprise to me!

I truly think that the anxiety is caused by nervous tension from increased renal pressure. A sudden increase in activity and cell exchange in the liver without question will cause changes that are similar to a liver injury.
There were many times in the first four weeks of treatment that I was in a panic if I could not get to the John and have a good leak. I actually started to fear the morning when my wife needs to use our only bathroom for a long period of time getting ready for work! Sounds strange but it is true.

An analogy that I used on one post about this topic compared how a trained boxer will "soften up" an rival in a match with punches specifically to the liver and kidneys. This act then causes the trainer to tell "softened up" injured boxer between rounds not to drink too much water because of his kidneys might start to hurt as well as his liver!

Much seems to depend upon the existing level of cirrhosis with this drug. This should not be surprising. Those who have been through constant hepatic pain might even feel strange as the pain finally eases somewhat. For me this did not begin to happen until week 12 on the drug. Then the pain came back slightly at weeks 16-24 when both my wife and myself were hit by the flu virus that escaped this years vaccine release! The flu this year was terrible many seniors with compromised immune systems in care homes here on Vancouver Island BC "lotus land" had difficulty with this years flu outbreak. The worst it has been in years!

Welcome to this forum.
All the best and slay that dragon!

Eric

jules · « **Reply #62 on:** August 24, 2015, 06:53:42 am »

Thank you so much for the forum and everyone that participates. It has been such a help with my current treatment (Harvoni) and a previous failed treatment (Incivek prescribed with Interferon and Ribavirin). I can tell you my first treatment with Incivek was a nightmare. My treatment with Harvoni has been a cake walk taking into perspective my first treatment experience. I am very grateful for how my treatment is going so far, but it has not been totally without incident. I am just starting my last month of treatment with Harvoni. I have been very fortunate to not have any nausea or headaches as others have reported, but I have had other issues. After I take my dose I find I become extremely absent minded for roughly 3 hours. It does alleviate, but I still feel like I am not thinking as clearly as usual. Post it notes and helpful reminders from family are working to assist with that! The thing that I am struggling with quite a bit is an increasing amount of tension, anxiety and depression. Last night was the hardest. I was not grateful to see that others had experienced this, but I was relieved that I was not alone.

Espo2 · « **Reply #63 on:** September 02, 2015, 05:13:30 pm »

I took Harvoni at bedtime. Anxiety was very intolerable for me as higher blood pressure. I stopped treatment after 8 weeks. Thank God the virus is gone.

jag2455 · « **Reply #64 on:** November 02, 2015, 04:27:58 pm »

@Espo2 - I sent you a private message.....please check & reply.

Thank you!

Videobycarol · « **Reply #65 on:** November 06, 2015, 11:23:05 pm »

Hello. I just started talking Harvoni. I'm on day 5. I have GAD or General Anxiety Disorder and was bothered by constant panic attacks for years, day or night, for no apparent reason. I take klonopin which controls it 100%. I was worried about Harvoni causing anxiety problems. I only experienced the heart pounding and revved up feeling once in the first day, shortly after my 2nd cup of coffee that morning. So now I just drink one cup of coffee and have had no more problems. I'm a high anxiety person and if Harvoni does cause anxiety my guess would be the the klonopin I take handles it. I can't even take cold medicine without flipping out. But I'm ok so far.

Else · « **Reply #66 on:** November 07, 2015, 12:12:36 am »

I just saw this thread. Happy to say, no issues with anxiety. No issues with racing heart. Resting heart rate 80.

lporterrn · « **Reply #67 on:** November 08, 2015, 10:07:50 am »

Carol - what I really liked about your comment was that you were open-minded to possible solutions, and experimented by cutting back on coffee. I found that some of my anxiety on treatment was caused by or intensified by factors that weren't medication-related. This helped a lot. Good sleep and meditation helped me a lot.

Videobycarol · « **Reply #68 on:** November 11, 2015, 10:32:02 pm »

Thank you Lucinda. I was afraid to take such a new medicine initially. But Harvoni passed my one-dose rule. If I make it thru the first day OK on a med - I will continue to take it until done and believe I will be fine. Of course if that changes I will be re-calculating and try adjustments, such as less coffee, more sleep, etc. I had planned to knock myself out cold day and night with Klonopin if I had to so I could complete this 12 weeks! But there has been no need for such drastic measures.
I have been following this forum on and off for some time now and actually gained the courage to get treated from reading of everyone's experiences.
Thanks and hope all get the very best outcome!
Carol

BG · « **Reply #69 on:** November 14, 2015, 01:58:33 pm »

I also have Generalized Anxiety Disorder, and can't say if the increased anxiety levels I had were from the beta blocker I take for the varices or the Harvoni--I suspect he beta blocker. Nothing like with the Pegintron--that was bad. What helped was exercise, and acupuncture. The acupunture is expensive, but worked for me.

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