Hep C Discussion Forum

Brian1412 · Guru

RE: My HARVONI side effects

Brian1412 · Guru

Or anxiety....common to peple going thru any trearments. You feel like heart is racing and you might pass out? Anxiety attack...::

Tig · Admin

My resting respiration (breaths) per minute is usually 8-10/minute, so that's not abnormal in my opinion Rudy. It depends on many factors though. Your health, including your heart and lung function, among other things, will affect your heart and respiration rates. As long as you're not hyper ventilating and you don't feel out of breath at your current breaths per minute, you should be fine. Your doctor should be monitoring your breathing and its impact on your health.

RUDY · Member

remenber breaths per min not beats sorry if I was miss leading

RUDY · Member

My sister is a nurse and even she knows that about 16 breaths per min is ok under that should be looked into

dharmabum · Senior Member

Rudy,

Are you saying that your heart rate slows down to 10 beats per minute? Here is a little factoid;

The official Guinness World Record for the lowest resting heart beat is 27bpm, held by Martin Brady, 45, of Guernsey. Current record holder Mr Brady took the title from five-time Tour De France winner Miguel Indurain, whose resting pulse got to as low as28bpm.

RUDY · Member

Heart Dr. doesn't have me on anything / Ever dose my heart slows down to about 9 to 10 breaths per min./ and then all hell breaks lose side effects / it feels like I'm going crazy...my hep Dr. says just keep going very easy for him to say,,, .. heart dr. says not related to heart most be the Harvoni,,,,, I am rock in a hard place...

-- Edited by RUDY on Saturday 9th of May 2015 04:32:03 PM

Tig · Admin

Hi Rudy,

I'm sorry to hear you're having these issues, and the cardiac difficulty isn't helping I'm sure. Are you on Amiodarone (heart medication) by chance? If so, its contraindicated during Harvoni treatment. What type of doctor is handling your HCV treatment? Since you are having these problems, I would be certain that your liver and heart specialist are working together. There is a possibility that you have a medication reaction going on and only your doctors can handle the adjustment. You might also contact your pharmacist and discuss these side effects. They will be able to determine if there's a problem. Even though you have been to the ER, those doctors may not be as current on medication interactions as your liver specialist.

PS: Your AST/ALT levels are right where we want to see them. They generally return to normal levels, as yours have, after starting Harvoni treatment. It's important to stay the course! Hang in there.

RUDY · Member

I have heart problems / I have bicuspid aorta valve w/ 55 % stenosis needing surgery now the surgeon wanted me to take Harvoni to get rid of the hep c / I am ready to bail the Harvoni after 21 Days because I am having all kinds of side effects that I just can't handle the only thing I can do is stay in bed with side effects ER 3 times already. My hep C vl is und enzymes 20 / 22.... Now what ???

Tig · Admin

Rudy,

It's a lower than normal heartbeat.

http://en.m.wikipedia.org/wiki/Sinus_bradycardia

RUDY · Member

Has anyone ever heard of

Sinus bradycardia

Gracie · Guru

I cannot wait to have Harvoni side effects. We are blessed and lucky to have this new wonderful treatment and others closely following it. If I have cirrohsis (which I now think I do) and it was 10 years ago, I would have no options at all.

This forum has given me the best and most up to date information, and had I not known about the information, I would never have gone and pressed for a new gastro doc, which lead to my fibroscan. With minimal symptoms, I most likely would have just waited for months, maybe years, and got sicker and sicker.

What I'm trying to say is... You forum guys rock and save lives!!!! So thankful for you all!

Jaded · Senior Member

Drinking too much water flushes your electrolytes . The electrolytes facilitate brain signal transfers...electrical signals have to jump synapses. It's a bit like electricity arching (the little spark you see sometimes when you plug something in). So without adequate electrolytes you will experience many of the symptoms you are complaining of. It can cause you to pass out as well. Try 2 liters a day...should be enough.

TazKat · Senior Member

i did 4 treatments. 2 with interferon & ribavirin.. one with the purple pill that u had to eat 20 grams of fat with each every 8 hrs & then continue the interferon & riba. relapsed.. did solvadi last yr along with the interferon & riba. I went thru hell. but... I stuck with it & mallani & tig & cinnamon girl & lots of others gave me great info & support. I am now hep c free. just calm down & do ur meds & the end of the meds will be here soon enough. I never thought it would end. but it did & I claimed victory. hang in there..

Peace

Taz

RUDY · Member

Thank you Doc, much appreciated!

Tig · Admin

Thank you Jo, much appreciated! smile

Tig · Admin

Rudy,

It appears sir, that you're becoming confrontational now. It's not necessary and can not be allowed to continue. I want to point you to our forum guidelines, here:

http://hepcfriends.activeboard.com/t59007208/forum-guidelines-required-reading-for-all-members/

Forum rules of etiquette, here:

http://hepcfriends.activeboard.com/t58916246/forum-etiquette-required-reading-for-all-members/

We simply pointed out that you have posted the identical information in multiple threads. Duplicate posts are not allowed and that should be easy to understand. We also pay particular attention to the individual first starting a thread. Just as you have started this thread, we respect that the subject and direction belong to you. It's not proper etiquette to "hijack" someone else's thread (changing the original topic).This is standard among all forums and request you follow the same here.

I would also like to point out that I am not a "Doc". I'm known as either Tig or one of the Forum Moderators. I am glad you're here and hope we can provide you with the help and support you seek. We will however not allow impolite disruption of our community. Thank you for your understanding and cooperation. (1)

RUDY · Member

SO I WAS RIGHT THE COMPANY THAT MAKES HARVONI RUNS THIS FORUM / HAHAHAHAHAHAHA I'LL BE A HORSES *** WHO WOULD HAVE GUESS MAKERS RUN FORUM TO KEEP US ON MED....

Profanity is not allowed on this forum.

-- Edited by Tig56 on Saturday 9th of May 2015 02:20:30 AM

RUDY · Member

Why does this brother you where I post,,, stock holder..Doc

Tig · Admin

Rudy,

You're right, I do have a personal interest in the people here taking Harvoni. That's because I want to see an end of this disease and the end of the continued damage it is causing. With SVR, the progression of liver disease stops as a result of HCV. A healthy liver allows the healing to begin. The extra hepatic manifestations caused by the disease also improve. I do not have any financial interest in Harvoni or any other pharmaceutical company.

You are most welcome to discuss your problems and side effects from treatment. All we ask is that you discuss them in one thread and not make duplicate posts in multiple locations. Thank you so much for your opinions and continued courtesy.

RUDY · Member

THERE IS NO CURE FOR HEP C

RUDY · Member

WOW,,,, DOC,,,,, YOU SEEM TO HAVE A VERY PERSONAL INTEREST IN WHETHER OR NOT PEOPLE REMAIN ON HARVONI,,,,,,,, I THOUGHT THAT IS WHAT WE ARE SUPPOSE TO DO SHARE SIDE EFFECTS AND OTHER THINGS..

dharmabum · Senior Member

Jill and Tig,

Thank you again and again for your invaluable advice and gentle spirit. You cannot know what it means to so many of us.

Jo

Cinnamon Girl · Guru

Hi Rudy,

Tig has just explained very carefully why the word `cured` is not used by doctors.

Would you mind not keep posting the same thing on other threads, please, there is no need to do that.

You`re welcome to ask questions but we can all see your posts here on your own thread, you don`t need to keep repeating your questions.

Tig · Admin

Correct. Forever is not used, sustained viral response is the term we see mentioned. Some doctors use the term CURE to put people's minds at ease. Once you have achieved SVR12, you can relax. The odds of a relapse after that are very remote, but first you have to finish all of your treatment. Just because you're undetected right now doesn't mean the virus has been eradicated. Your body must be exposed to the drugs for an extended time so all of the tissue is perfused (saturated). To do less or to skip doses will likely result in a relapse. Then you must start from scratch. Hang in there.

RUDY · Member

In other words no CURED forever records hun Doc ??

Tig · Admin

Rudy,

They don't use the word HEAL in the medical jargon when discussing the long term goal of a sustained undetected viral load or SVR (sustained viral response). The word cure is used, but it is debated whether the term is properly used. SVR is the reduction of the viral load or count to a level that is undetected and unquantifiable. It is believed that after a FULL course of treatment, and the viral load stays undetected 12 weeks after the end of your treatment, your own immune system is then able to maintain the virus at that undetected/unquantifiable level indefinitely and is called SVR12. The rate of relapse is said to be less than .5% after that and may fall even less over time. It's important to live a healthy lifestyle after that. Hope this helps.

RUDY · Member

DOES ANYONE HAVE DOCTOR RECORDS,NOTES, ETC.. NAME AND ADDRESS OF CLINIC OR HOSPITAL THAT CAN SAY HEALED NOT COMING BACK..... I'LL BE WAITING FOR THAT FOR A LONG TIME.....HEALED FOREVER... PLEASE SEND IT IF YOU HAVE IT !!!!!! I HAVE UNDETECTABLE VL,,,,,,,AND THATS ALL ANY OF YOU MAY GET,,, NOT A YOU ARE HEAL FOREVER.. THE END,, PROVE ME WRONG,,, MONEY MAKING DRUG COMPANIES,, YOU AND I, GINNY PIGS..

Tig · Admin

Hi Rudy,

Hello, I'm glad you're with us and hope we're answering some of your questions. Let us know if you need help finding anything here on the forum.

I'm wondering if you have obtained copies of your previous blood tests? If you did, feel free to post those results if you like. Knowing those results can help us provide you with knowledgeable opinions. You can get them from your doctor upon request, they belong to you and you have every right to a copy.

As everyone has mentioned, limit your water intake to 2-3 liters of quality water per day. That will be more than ample to keep you hydrated, even in the worst of times. I also had depression during treatment and was prescribed anti depressants. They eliminated the depression very quickly. It's worth discussing with your doctor. These drugs can cause some uncomfortable side effects but they can be managed through help from your healthcare team, friends you have here (and you do), as well as time. Many of these issues tend to decrease in time.

Do your best to take every dose of Harvoni, at the same time each day. Taking it at night can help you sleep through many of the side effects. You have received some good advice and if there are any other questions or problems, let us know and we'll try to answer them for you. Good luck!

WarriorWolf · Veteran Member

Hi RUDY,

I went through the same fears when I started Harvoni. I had a lot of similar side effects and I was terrified. I received negative feedback from this forum from one who said I was being negative by expressing my fears and then I stop being responded to all together. I have not experienced any changes in my blood pressure at all. I had flushing and sweating, weakness, joint pain, headaches, odd dreams, fatigue, anxiety. I am almost finished with week #3 and I am doing fine. I have mild side effects that come and go. I am truly surprised that I made it this far. I was terrified that I would become sick and depressed from the Tx. Which is not happening at all. I have been moody at times but I just relax and try to meditate and YES! by all means use your mind to try and control some of the things you are feeling. Your mind may not be the cause of the symptoms you are feeling but I don't' think anyone gives the mind enough credit. WE can do a lot with our mind that we have allowed to be disabled by the concept of modern western medicine. I am not a person who ever allows myself to take any kind of drug, so it was hard for me to agree to this Tx. I have continued training for a triathlon in August but I do everything in moderation. I eat right I drink water but not too much as I know that you can actually poison your system with too much water. I have been seeing my chiropractor more. I'm scheduled for massage therapy through out this Tx. Please take extra care of yourself. In my meditation I have found it hard to really connect with my inner-self on this Tx, but I do it anyway because it truly helps. I close my eyes and I imagine the medicine healing me by killing the virus, then I imagine other forces protecting me and healing the side effects. I do this every time I don't feel quite right. It helps a lot! I use food to help remedy the ailments I feel from the side effects. I don't use nothing else. I don't consume anything but natural food and water and I limit any refined sugars. The weeks are flying by for me. I am on an 8 week Tx. I'm almost finished. Stretch your body and get some movement going. it will help naturally release toxin build up. I hope the best for you. If there is anything I can do to help please don't hesitate to ask.

Mugsy · Senior Member

Yes, Rudy you need to finish all the Harvoni even if the VL is undetectable. I did 12 weeks of Harvoni (11/23 to 2/15) and I remember taking my first dose, waiting, and looking for the symptoms!! I'd suggest just relax and let the medicine do its work. Worrying won't help at all. Sorry to sound hard hearted but you are not thinking correctly if you are threatening to skip doses of Harvoni. Try more walks and relaxation techniques like bath/hot tub soaks, massages, meditating. And Cinnamon Girl is right, too much water isn't good either.

Hang in there..18 weeks will be over sooner than you think. Thank heavens we didn't have to do 52 weeks of interferon and ribavirin!

Mugsy

dharmabum · Senior Member

Hi Rudy,

Is it possible that you have lowered you sodium levels with too much hydration? Why not ask your doc for a BMP - basic metabolic panel... those labs come back in 24hrs, usually. I get low sodium all the time and have to limit water intake most of the time. Vision issues and confusion are my warning signals.

Jo

Cinnamon Girl · Guru

You must have had a detectable viral load before you started your treatment, Rudy, otherwise your doctor wouldn`t have prescribed Harvoni for you.

And even if it is now undetectable it`s important to complete the whole course of treatment that you have been prescribed, otherwise the drugs won`t have finished doing their work.

By the way, do be careful with the amount of water you`re drinking, too much can be as harmful as too little.

RUDY · Member

So if my VL is undetectable and all other levels normal should I be on HARVONI ????

Cinnamon Girl · Guru

Consumption of alcohol would cause anyone`s liver enzymes to rise, Ruddy, but the majority of people who have had Hep C and cleared the virus wouldn`t dream of hurting their liver by drinking again.

And of course no-one with a currently active Hep C infection should be drinking alcohol at all, under any circumstances.

You asked whether people `heal`...well the liver can heal and repair itself to a large extent over time once the virus is gone, depending on how much damage has occurred.

RUDY · Member

Understood But are all people ***"HEAL"**** or did there levels just get back to normal ? Because all my levels are normal only if I worse to drink alcohol then they may rise... And I bet all who have finish treatment if they drink at all there levels would go back up ,,, yes???? asking

Cinnamon Girl · Guru

We` ve seen many people completely clear the virus and reach SVR after Harvoni treatment, Rudy, and often their liver function levels are restored back to better levels than before the start of their treatment.

This is very powerful medication and some people have reported high stress levels at first, but usually when your system adjusts more to the drugs then it gets a lot easier.

RUDY · Member

DANGEROUS SIDE EFFECT ( Dehydration ) That you, yourself can not control...

RUDY · Member

are all people "HEAL" or did there levels just get back to normal ?

Cinnamon Girl · Guru

Hi Rudy, welcome to the forum.

I`m sorry you`re experiencing so many difficulties while on your Harvoni treatment, of course it`s different for everyone and no-one here can tell what you`re going through. I must say that your list of side effects is much longer than what we usually see your and is actually quite alarming, and so it`s natural that people are concerned for you.

I have to agree with Malcolm that skipping a dose is really not in your best interests and will decrease your chances of a successful outcome, so please do what you can to stick with it and don`t miss a day of medication!

The anxiety and panic you mentions can cause a lot of physical symptoms so it might be a good idea to talk to your doctor about prescribing something to help you with that. If you can get your stress levels under control then I`m sure you`d be able to cope with the treatment a lot more easily.

Wishing you all the best of luck... smile

RUDY · Member

WOW !!!! So I can make my blood pressure what I want, Doctors witness pressure, and all symptoms,, So who is crazy , HARVONI only gives you a headache and fatigue really ???? Hun ?? and another question Doc. are all people "HEAL" or did there levels just get back to normal ???? I guess I'm the Miracle Man and my Dr is stupid . Thanks for your input HARVONI stock holder or should I say Dr, Harvoni..

FOR YOU mallani dumb ass..

-- Edited by RUDY on Friday 8th of May 2015 10:23:19 PM

mallani · Guru

Rudy,

Normal daily fluid requirement is 2-3 litres. If you're drinking 14-16 bottles of water a day, that's crazy.

Am I reading you correctly? Are you really skipping a dose of Harvoni on some days? That is really bizarre and is inviting relapse.

Your list of 'symptoms' are almost certainly psychosomatic. I suggest you get some psychological help.

RUDY · Member

Thanks fourlocos

RUDY · Member

Thanks Ro

RUDY · Member

Look at my reply above,,, I'm on Day 21 I have to finish 18 weeks so they say but I think I won't need that long my first blood work up is in 1 week I had to go to the ER on day 7 and my levels were normal they have never gotten to high not more than 200 and viral at 30,000 which is really low ..

RUDY · Member

I am drinking about 14 to 16 bottles of water a day,, it's also giving me severe anxiety and panic, Dr. keeps telling me it's not the med,, I can only take 4 to 5 days then skip 1 day to regain myself .. my levels are already normal but they would always come down if I stop all alcohol for 2 weeks non detected I have had Hep 1a for 38yrs my immune system also bet Hep B by itself . I always stay away from Tylenol...

fourlocos · Senior Member

Ruby how long is your treatment for? How long have you been on treatment so far? I did have a laundry list of side effects. I was only on 8 weeks. I did have a spike here and there of my blood pressure which likes yours is normally low. I found that I had a bad headache with it. But it would return to my normal within a few hours and I didn't even contact my doctor about it. My high was still in a normal range.... just not normal for me. All I can offer to you is that treatment is over rather quickly. It took me 3 months post treatment now to feel like myself again. Well okay, closer to myself. I don't have much to base it on since it seems I had the virus for my entire adult life. 40 years. But I am feeling better. I know that telling my doctor was fruitless since he didn't seem to feel anything is treatment related but fatigue. That is where this forum helped get me through it.

Ro · Senior Member

Rudy,

Are you hydrating enough? Dehydration can be a factor in many of the sides you have experienced... thirst, dry skin,decreased sweating, muscle cramps, nausea. confusion, dark urine. and more.

Make sure you are eating, and hydrating properly. What does your doctor have to say?

Wishing you success in treatment

Ro

RUDY · Member

My blood pressure yesterday on HARVONI was 92 over 52 / Now at 4;40 pm today with no HARVONI pressure is 142 over 83 ..........

Yesterday dose was #20 at 6:00am

(symptoms that I've been experiencing since I started the HARVONI)

Thirst
Loss of Appetite
Fatigue or Weakness
Chills                                                                                                                                                              Anxiety and Panic
itching all over, especially the back of my neck, and shoulders   Dry Skin
Skin Flushing
Head Rushes
Face flushes
Increased heart rate
Increased respiration
Decreased sweating
Extreme fatigue
Muscle cramps
Headaches
Tingling of the limbs
Muscle spasms                                                                                                                                                   Swelling of legs,ankles,face, eyes,hands
Nausea
Racing pulse
Shriveled skin
Dim foggy vision
Low blood pressure
Confusion
Difficulty breathing
Chest and Abdominal pain
Dry mouth, skin, cracks on tongue, and dry eyes
Sunken dark under eyes
Low blood pressure
Rapid heartbeat
Rapid breathing
No tears when crying
Fever
Mental confusion
Darker then usual urination
Shriveled skin
Dizziness and confusion

-- Edited by RUDY on Friday 8th of May 2015 04:36:46 AM

-- Edited by RUDY on Friday 8th of May 2015 04:35:59 PM

-- Edited by RUDY on Friday 8th of May 2015 04:37:34 PM

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Sinus bradycardia

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