Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Luna7 on September 07, 2016, 11:24:59 am
-
I was having scary heart abnormalities after taking DAA's (Sovaldi/Daklinza) -- missing heart beats, hard heart beats, irregular heart beats -- and managed to stop all this through adding more electrolytes and deep breathing.
Through research I discovered that heart irregularities don't always mean the heart is seriously damaged, and that often the culprit is a lack of minerals/electrolytes and oxygen deprivation.
Avocados especially helped, and whenever I feel a skipped beat I immediately start breathing deeply to add more oxygen.
Some good drinks to increase electrolytes:
The Lip Twister - tart and sweet
1/4 cup of lemon juice
1/4 cup of lime juice
1 teaspoon of salt
1 whole squeezed orange (or one frozen can of orange juice)
1 liter of water
Easy Sweet - not too sugary
2 cups of coconut milk
1 teaspoon of salt
1 teaspoon of Stevia (natural sweetener) or honey
1 liter of water
Mix It Up - use a blender
2 bananas
3 cups of coconut milk or 2 cups of strawberries
1 cup of water and ice
1 teaspoon of salt
Juice of 1/2 of a lemon
Fast and Dirty #1 - bare bones approach
2 lemon halves squeezed into a glass
2 orange halves added
Squirt of honey
Four shakes of salt
Fill the glass with water and gulp down
Fast and Dirty #2
1 bottle or can of V8 vegetable juice (any flavor)
1 cup of water
1 cup of orange juice
Foods
In addition to making your own electrolyte drink there are many foods that will help with replenishment as well. These include: avocados, broccoli, yogurt, tofu and apricots.
-
Thank for the info. Great recipes! I had scary heart palpitations and other heart irregularities quite frequently (almost nightly) while on harvoni+riba, and have continued to experience the same infrequently ever since, although my heart checked out normal on my pre-treatment screening tests. Will try these strategies.
kim :)
-
same here guys but no loss of breath or panting etc. usually associated with heart problems
-
and the right flank under rib discomfort still persists for a few days at a time I just hope it goes away before svr 48
-
Thank for the info. Great recipes! I had scary heart palpitations and other heart irregularities quite frequently (almost nightly) while on harvoni+riba, and have continued to experience the same infrequently ever since, although my heart checked out normal on my pre-treatment screening tests. Will try these strategies.
kim :)
Hi Kim
Didn't you have issues with low HGB post treatment from the Ribavirin? Unless I maybe thinking of someone else. Anyway being very anemic can cause heart rhythm irregularities.
Symptoms
Anemia signs and symptoms vary depending on the cause of your anemia. They may include:
Fatigue
Weakness
Pale or yellowish skin
Irregular heartbeats
Shortness of breath
Dizziness or lightheadedness
Chest pain
Cold hands and feet
Headache
Just a thought about anemia being a possible reason for heart rhythm problems
-
Hi Lynn. Yes I did have anemia post-treatment. What I experienced in terms of heart racing wildly and pounding very hard at night in bed did not feel like anything connected to the anemia. Nor was it stress related. It came out of nowhere when I felt otherwise relaxed. I was aware of the anemia giving me a rapid resting heart rate. But that was rapid, shallow and constant. This other problem is like an electrical storm interfering with the heart's pacemaker. So many people have commented about experiencing that on Harvoni - and with no ribavirin involved...
kim
-
OK Thanks for the clarification
Hope you are feeling better these days :)
-
OK Thanks for the clarification
Hope you are feeling better these days :)
I am feeling quite a bit better now. Have really been working on diet and health restoration. Seems to be working. :)
kim
-
kim have u had your heart checked out since treatment finished??? I'm going to primary first week of November to see about getting that and lungs checked out...
-
kim have u had your heart checked out since treatment finished??? I'm going to primary first week of November to see about getting that and lungs checked out...
No I haven't but have thought of having heart checked. Will probably do so at some time. My heart palpitations (rapid pounding and racing) are now very infrequent. I think that problem that developed during treatment may finally be going away for me. But I do think anybody with persistent post-tx problems with heart or lungs that were not there pre-tx should have heart and lung functions checked.
Good luck and let us know how your own check-up comes out.
kim :)
-
Even mild portal hypertension can be a cause of irregular heart beats. My bilirubin is still high and my level of cirrhosis is still dangerous. This is why regular ultrasounds with attention paid to the portal vein and spleen are called for if you have even the beginning signs of cirrhosis.
My incidents of thumping in the chest are much less frequent than they were before treatment, however there are still the odd weird drum sessions happening seemingly out of no where.
Here is hoping that my plumbing holds up for a few more years. A GI bleed caused by years of portal hypertension is not the way I want to go out from this world. At least DAA treatment has let me live long enough to possibly see the sane population of the States say "YOUR FIRED" to a certain Republican next month.
Cheers
the Mugwump
-
Re: heart palpitations -- there is a connection between ribavirin and anemia and tachycardia, with the tachycardia being related to the anemia. FT
-
I had a faint heart murmur caused by the anemia I experienced being on ribavirin. The murmur went away after my anemia resolved once I stopped treatment with ribavirin.
-
Magnesium supplementation might be the answer. Worked for me. Many folks are deficient. Magnesium glycinate.
-
Magnesium supplementation might be the answer. Worked for me. Many folks are deficient. Magnesium glycinate.
Hi Northfork,
What made you choose this particular form of magnesium over others?
It's very confusing when trying to decide which kind to take. Right now I'm taking Magnesium L-Threonate or Magtein that more readily crosses the blood-brain barrier.
And upping my intake of greens, organic of course because magnesium has been reduced in traditional agricultural practices (depleted soils).
-
I had read that glycinate was more bio-available. But whatever works is my motto. :) :)
-
I suffered from nightly leg cramps due to magnesium deficiency in my diet. I told my primary care physician and his reply was " Aren't they painful." I learned on my on to consume 1/2 to 1 cup of chopped walnuts a day and one tablespoon of black strap molasses a day. The nightly leg cramps no longer occur! Foods rich in magnesium like the aforementioned are good for maintaining good health in general.
"Let food be your medicine and medicine be your food." Hippocrates
-
In my experience with night leg cramps, I have found foods rich in Vitamin E or even Vitamin E supplements will make the leg cramps go away and stay away.
I never heard about Magnesium deficiency causing leg cramps. However most foods rich in Vitamin E have some Magnesium in them as well.
-
Hi everyone,
I'm new here getting ready to start Epclusa. reading these post tx chronic problems related to Harvoni are concerning to me, as you've all said it's a new drug and these are the first reports of adverse post tx effects that are coming out.I've called the epclusa nurse educator who are clueless and only have limited knowledge or just what Gilead feeds them to say..theres an FDA report that DAA's can reactivate HBV which has been out for a month now and they have no idea what i'm talking about , I think that's an important detail they should know ..I'm going to see my MD tomorrow so I'll run these concerns by him but doubt he'll know that much either.Epclusa has only been out since June 28th so I'm sure there aren't any negative sides to report as yet so I have to think this through carefully..If anyone has any feedback I'm all ears.. thanks for listening..I'm grateful to have the opportunity to be approved for these meds but I'm also cautious about what I'm putting in my body as we all are here.
-
Sammantha,
I think most of us have have appropriate concerns when starting a medication, especially when it is new. One thing that helped me was to also consider the potential harm that would occur if I didn't take the medication. So often we look at the potential risks of medicines without considering the risks associated with living with hepatitis C. For me, the increased risk of all-cause mortality coupled with a 15 to 21 years of premature death convinced me to take a chance.
-
Thanks Lucinda ,you're right,have thought that through as well just have concerns about feeling worse and having the last of chronic problems that are mentioned ,ive had this for 30yrs and it's amazing that I'm F0 and feeling pretty good and asymptomatic but I do realize it can turn ugly and risk of cancer also.how are you doing after your tx ,any problems ,thanks for your support!
-
Thanks for asking. I am doing great. However, I am 63 years old and didn't expect that freedom from hep C would turn me into a 30 year old. That helped, along with consistent, but not perfect, attempts to take care of my health.
-
Glad to hear you're doing well Lucinda,wouldn't be great to go back to age 30 but I could do without the bad B.F choices I made then HA!!! ::)
-
It's very confusing when trying to decide which kind to take. Right now I'm taking Magnesium L-Threonate or Magtein that more readily crosses the blood-brain barrier.
Hi Luna, where is the country of origin of your Magnesium L-Threonate? I can only find products from China.
Hope your regime is working for you and your daughter :)
-
I strongly recommend that people get their health problems, especially all cardiac issues, checked out by a medical provider.
-
Hi Luna, where is the country of origin of your Magnesium L-Threonate? I can only find products from China.
Hope your regime is working for you and your daughter :)
Hi Jazz,
Did you check out the Jarrow brand of Magtein? I can't find where it's sourced but good to know that yes, with the lead I've heard is in some imported products.
My chiro really likes the Pure Encapsulations brands, though they are quite a bit more expensive.
Luna
-
I was having scary heart abnormalities after taking DAA's (Sovaldi/Daklinza) -- missing heart beats, hard heart beats, irregular heart beats -- and managed to stop all this through adding more electrolytes and deep breathing.
Through research I discovered that heart irregularities don't always mean the heart is seriously damaged, and that often the culprit is a lack of minerals/electrolytes and oxygen deprivation.
Avocados especially helped, and whenever I feel a skipped beat I immediately start breathing deeply to add more oxygen.
Some good drinks to increase electrolytes:
The Lip Twister - tart and sweet
1/4 cup of lemon juice
1/4 cup of lime juice
1 teaspoon of salt
1 whole squeezed orange (or one frozen can of orange juice)
1 liter of water
Easy Sweet - not too sugary
2 cups of coconut milk
1 teaspoon of salt
1 teaspoon of Stevia (natural sweetener) or honey
1 liter of water
Mix It Up - use a blender
2 bananas
3 cups of coconut milk or 2 cups of strawberries
1 cup of water and ice
1 teaspoon of salt
Juice of 1/2 of a lemon
Fast and Dirty #1 - bare bones approach
2 lemon halves squeezed into a glass
2 orange halves added
Squirt of honey
Four shakes of salt
Fill the glass with water and gulp down
Fast and Dirty #2
1 bottle or can of V8 vegetable juice (any flavor)
1 cup of water
1 cup of orange juice
Foods
In addition to making your own electrolyte drink there are many foods that will help with replenishment as well. These include: avocados, broccoli, yogurt, tofu and apricots.
I too have been having what feels like a heart issue since treatment. My blood pressure went off the charts and last week I awoke at 2 AM with what felt like a stroke, I got up and took my herbal supplements for high BP and then resorted to a high PB med i had not had to take for many months. My dr said I had the symptoms of a mild stroke. My daily head aches are getting more severe with evenings being the worst. I still suffer from Brain fog, tinnitis, feet and leg cramps and pain,,my hands and wrists give out on me , I still can not eat much at a time or I suffer with GI pain like i did on tx. I am so very miserable and sure hope there is light at the end of this tunnel. I will be getting an MRI soon of my brain to see if there is fluid on the brain causing head aches.
I really need some empathy and prayers to all you who pray and maybe some reiki (SP?) for those who don't
morab
-
I too have been having what feels like a heart issue since treatment. My blood pressure went off the charts and last week I awoke at 2 AM with what felt like a stroke, I got up and took my herbal supplements for high BP and then resorted to a high PB med i had not had to take for many months. My dr said I had the symptoms of a mild stroke. My daily head aches are getting more severe with evenings being the worst. I still suffer from Brain fog, tinnitis, feet and leg cramps and pain,,my hands and wrists give out on me , I still can not eat much at a time or I suffer with GI pain like i did on tx. I am so very miserable and sure hope there is light at the end of this tunnel. I will be getting an MRI soon of my brain to see if there is fluid on the brain causing head aches.
I really need some empathy and prayers to all you who pray and maybe some reiki (SP?) for those who don't
morab
So sorry to hear about the awful severity of your ongoing problems post-treatment, morab! You have my total empathy and prayers. (I'm an athiest, but I believe in the Universe and in each body's ability/tendency to heal itself if we don't get in the way too much.)
Hugs,
kim
-
... Sorry to read of your troubles, Morab.
I will pray for you - yes.
Hoping you feel better soon.
Best wishes,
A.
-
sorry to hear about your troubles Morab, sending you love. Have you sought out a good TCM practitioner? Their herbs are very good with digestive probs, and acupuncture is excellent for everything, achey joints as well. Try to find a calm place in your mind amongst all this upheaval and in your body with gentle walks and stretching.
Sending love and peace,
Jazz
-
I really need some empathy and prayers to all you who pray and maybe some reiki (SP?) for those who don't
morab
~~~~
THE UNIVERSE SENDS LOVE
The curve, the line, the beauty in terrain of unknown lands.
Warm soft shape of love.
~~~
Haha, morab, I'm a sculptor like you this morn!
Did you know there are places where you could sculpt online using software, while your hands are healing?
Luna
-
Hi Morab,
I am thinking about you - and reflecting on what you wrote above.
Thanks for being so open.
Hopefully you are feeling a bit better - but if not - please know that I am keeping up the prayers!
It's an odd mixture of a day here in Auckland (New Zealand).
Summer is coming on, and I live next to the harbour, so I might try for a swim [again] today.
There have been jellyfish in the water, lately!
Hoping you are doing OK today.
Best wishes,
Andrew.
-
andrewj
thanks for checking on me and thanks luna for the being so kind. My head aches have eased up some the last couple of days. But the heart palpitations come and go. I am beginning to think it may be afib or atrial flutter. when i read up on those 2 things it sounds like what I am experiencing. Also the waking up at 2AM with a BP of 169/113/103 sounds like a stroke, although it must have been mild or I would be in the hospital right now or have some paralysis
I will try to see my PCP again next week to get an apt with a cardiologist, but when paying out 20% of anything I have done tends to make me ignore the complications I am dealing with.
I did read on another forum about a woman in Canada who has had a debilitating stroke after taking Harvoni, so that makes me a little fearful.
There is no one in my family with a history of heart problems on either side.
I am trying to stay calm and do a little work in clay in the early morning hours when my energy level is the best.
The clay heals my soul and when I ever get enough to fire it will really make my family, friends, and buyers so very happy
Opening a kiln load of pottery is always like Christmas, only better
It brings a joy to my life, and kitchen
morab
-
Hi Morab,
Strangely enough, my brother is a potter. Or was.
He's an artist now (if there's a difference) - but he started out in pottery and ceramics.
He describes the process (of making / creating) very similarly to the way you do.
I think it is, or was, a healing thing for him, too.
I suppose you are trying to think of anything you can, in conventional and alternative medicine, to explain and deal with what's going on?
It's outrageous that you should have to worry unduly about the cost of seeing Drs.
(From here - that health system in the U.S. looks positively draconian).
Good on you for trying to stay calm.
... Relaxing your body? ... 'Conscious' breathing?
Please don't ignore those symptoms.
Thinking of you.
A.
-
Andrew
yes art, clay, taking photo's cooking
there are so many forms of Art,,,,,and Art is a really good way to heal ones soul and body............... from the inside out.
That rough patch is easing up to the point no expensive testing would help now....
So I begin each day in a little clay, take a photograph
A healing from the inside out,,,,writing,,,playing an instrument ,,,even going to a museum
Art is something we all have,,,you just have to find out what your's is...
Everyone is an artist
And you are an artist with your healing words for others across the world
To everyone finding the art in ones self
morab
-
That's sweet of you, Morab. Thank you.
I am trying to find the time / let myself do a bit of painting (I bought some water-colours a while ago, and there are some skanky acrylics lying around the place) -
It's just - 'Priorities'!
Aagghhh!
-
Hello, just a quick update on my health, its still horrible. Pains and aches in legs, back, hips. My digestive system is a mess cannot eat without feeling nausea's,achey,bloated. constipation, diarrhea. Exhaustion even if i sleep 10 hrs. Insomnia. Now really depressed never never have i been this unhealthy in my life..... i am overwhelmed with sadness and fear.
Morab i guess we are the two unlucky ones .....
But i'm glad everyone else is getting to live a happy, healthy life.
-
Hi Morab. I too believe the creation of art or any form of creative manifestation is enormously healing. Creative energy is the antidote to energy of destruction. I also believe, like you, that everyone is an artist. We all have the potential to manifest our creative energy in some way.
Re: the heart palpitations, heart racing, feelings of afib... these are also classic hallmarks of electrosensitivity when exposed to wireless radiation. Of course we are all exposed most of the time because of the ubiquitousness of wireless devices transmitting radio frequency radiation. But if you have a new source of it in your home or life, say a new cordless phone or next gen of cell phone or a recently installed wireless smart meter on house... these can be causes of 'mysterious' development of heart palpitations, and for many people are.
Even if yours began as a side effect during DAA treatment (and I certainly experienced that), it could be they are continuing so long after because of a different trigger such as wireless rad. Just a theory. (For several years I have been researching risks of wireless rad and interviewing electrosensitive people for book I am working on.)
am holding you in my thoughts, morab!
hugs,
kim
-
Hello, just a quick update on my health, its still horrible. Pains and aches in legs, back, hips. My digestive system is a mess cannot eat without feeling nausea's,achey,bloated. constipation, diarrhea. Exhaustion even if i sleep 10 hrs. Insomnia. Now really depressed never never have i been this unhealthy in my life..... i am overwhelmed with sadness and fear.
Morab i guess we are the two unlucky ones .....
But i'm glad everyone else is getting to live a happy, healthy life.
From the timing of your treatment and what you are currently going through I feel that very soon you should turn the corner. I felt like crap for at least 3 months post treatment. It took at least six to see any improvement in my bilirubin levels!
It took a long time before I could even go back to work productively but then again I have cirrhosis.
Please don't ignore your symptoms if they do not ease off soon.
All the best to you and everyone who are having a rough time post treatment
Eric
-
Thanks to you all for the support!
Karin I pray that you begin to feel better soon, Hopefully Mug is right, and it may take more time for our bodies to adjust to our new form without hepc.
Mug aren't you the one who is a fisherman? That is another Art form!
andrew, start painting!
I always say there is no failure in Art, I have made pieces I did not like, only to watch someone at an art show come into my booth and love my least favorite piece.....
You make me want to invest in acrylics and try my hand with painting!
I am going to try to make it until my Dr apt on Dec 13th to get further testing, my head aches are not severe right now, joints, feet, and hands are still cramping up.
The heart thing does have me a bit worried though
Kim, I am pretty old fashioned when it comes to the electronic age, so no new items in that category and I don't live for my cell phone like so many these days, my old flip phone for emergencies works for me. Also I have always been sensitive to electrical household things, If any one was going to get shocked by a faulty electric cord of any kind it was me so I try to stay away from electrical impulses.
Let's all make Art and help to heal ourselves
morab
-
Kim, I am pretty old fashioned when it comes to the electronic age, so no new items in that category and I don't live for my cell phone like so many these days, my old flip phone for emergencies works for me. Also I have always been sensitive to electrical household things, If any one was going to get shocked by a faulty electric cord of any kind it was me so I try to stay away from electrical impulses.
Let's all make Art and help to heal ourselves
morab
Me too. I am old-fashioned in that regard and deliberately low-tech.
Let the art-making begin/continue always! :)
kim
-
Magnesium supplementation might be the answer. Worked for me. Many folks are deficient. Magnesium glycinate.
northfork
What brand of magnesium do you purchase? Some have side effects that keep me on the toilet all day, so I am trying to find that perfect brand to help me with my cramping body.
Morab
-
Sorry to butt in ...
Something else I was wondering:
Do the relevant pharma co.s know what you are going through?
There must be a number of people by now who have experienced significant adverse reactions?
Certainly there have been a few stories posted here.
These symptoms of yours (and Karin's) sound serious to me.
There is another guy who has posted here. I think his name is Mike Conwell.
He has obviously been going through hell, and for quite a while now.
You can't just be left to flounder around in sh*t like this!
(... unless, of course, you can feel some sort of progression going on?) ...
If it was me, I'd be attending to it sooner rather than later!
-
Hello Andrew, I have left my info about my post tx health issues with every Dr. i have seen. Also I am more than sure since they are advertised all over this forum they must be part of it in some respect. I would think they have seen our posts. ::) I am not sure what you mean by sooner or later?? I have been to a gastrenterologist 2x , the last thing was the ultrasound of all my stomach organs spleen, kidneys, liver,pancreas... Not sure why probably looking for cancer but i was ok. He does not know why i am so sick, i do have gastritis and that can be pretty awful, which it is. They can only see the results of what has happened to me, but of course can not just blame it on tx although i was fine before tx. Also my GP ran some blood tests on my immune system, he knows me and knows other than the cancer in 2010 i was a healthy woman and lived a healthy life. The constant aches and pains,nausea and fatigue was NOT me before tx. What would you do at this point? I am out here like you said on my own, except for a few others that have the same issues. I feel like some think we are making this up and lack compassion for what we have become because they have moved on and feel great..... I can tell you are not like that, and i pray you never have to deal with this horrible way to live God Bless
-
I am out here like you said on my own, except for a few others that have the same issues. I feel like some think we are making this up and lack compassion for what we have become because they have moved on and feel great....
Hi Karin :)
I hesitated posting the following links awhile back because you seemed in so much pain and perhaps didn't need anymore!
https://www.lawyersandsettlements.com/articles/harvoni-denied-insurance-claim/harvoni-lawsuits-denied-insurance-claim-3-20791.html
http://www.medschat.com/Discuss/harvoni-side-effects-282546_p1.htm
And I have read all the reports flooding the FDA (at least the ones from a few months ago, and I'm sure there are more).
I caution you about going to these websites though when you are feeling bad. It is like being sucked into an emotional vortex of pain, and best read in phases even if feeling well.
I think you will see from these websites that you are not alone, and that people believe you!
Everyone suffering these side effects need to show this to their doctor. However, the doctors are not educated in the mitochondrial damage that some drugs cause. When you read the studies where they tried to determine if various antivirals are safe you will see that in some studies they do test for this, and that they discontinue some drugs when mitochondrial damage is too great.
(unsubstantiated drug claim edited) Harvoni is drug that has side-effects and complaints, and should involve serious discussion with a medical doctor, and treatment monitoring, as with all of our Hep C treatments.
If you notice now, there are very few complaints about the new DAA's, and they are usually minor. This for me is proof that they got something very wrong with the Harvoni combination.
The good news though is that for most people these effects subside, and there are specific nutrients you can take to speed recovery of mitochondria.
Keep up the faith, and know your body is healing!
Luna :)
-
andrewj
thanks for checking on me and thanks luna for the being so kind.
The clay heals my soul and when I ever get enough to fire it will really make my family, friends, and buyers so very happy
Opening a kiln load of pottery is always like Christmas, only better
It brings a joy to my life, and kitchen
morab
Hi Morab :)
Isn't it amazing what creativity can do!
I remember when I could only create a bit each day due to feeling so bad from the HCV, and how I cherished that small bit of time, and how it grew. And I wish that for you!
Your phrase there, "like Christmas only better"...I love that! It sparked some poems for me.
Luna :)
-
Sorry, claiming a drug is good or bad for you is very reasonable thing, but fitness of purpose for the public at large needs to be left to MDs, the FDA and lawyers. Hep C is a serious disease, and the drugs we take to cure ourselves are not a 'walk in the park' - educate yourselves, talk to expert doctors, and be in a treatment program that carefully monitors your results and reactions to treatment.
jack
-
jberlin
The professionals who are prescribing Harvoni in my area? Don't do followup, are not interested in reporting any side effect making it very hard to have a good follow up team.
The prescribing Dr. offered me NO counseling and No follow up.
I had to resort to my PCP for all testing once I got the drug in hand. Thank god, my PCP is a compassionate physician who actually cares, yet he is even at a loss as to why I had such a sever reaction while on tx and continue to have debilitating issues after which are
severe leg,hip, back arms and hands pain x 10 off the charts pain mostly at night when I try to sleep.
My head aches never went away, some days are better than other where the head ache is concerned,
And now out of no where I have this heart issue, I have medical coverage but not near enough for me to pay for expensive testing.
I have tried to get the prescribing physician to report my symptoms and they refuse.
When I call Gilead to report they act like I am crazy and tell me no these are definately no symptoms of Harvoni.
I would like to see Gilead admit that in some rare instances, this drug can be very detrimental to some people and start listing these side effects and long term side effects on their TV adds and prescribing information so that the general public can then make the right decision for them based on whether they really want to take a chance of taking this drug
I had no liver damage or symptoms of HEP C going into this and had I known about these rare side effects?
I would have waited for treatment,
now i am left with a lesser person than I was before, this has affected my ability to do so many things that I was able to do before tx.
Our voices should be heard and No longer ignored!
Because that is the right thing to do and not leave people in the dark thinking otherwise.
The system in the US is broken, leaving patients debilitated without any help after tx.
We can't make a good decision when we don't have all the facts even if these sides are at a 1%!
Morab
-
I am sorry for how things worked out for you. But my advice and warnings stand.
I too did my first treatment under a GI reading from the drug detail manual, and the treatment failed. And I got very sick during those painful 48 weeks! But, it was my fault for not doing more homework and checking out my options. Some years' later I met with a specialist at Duke, then went to a Hepatolgist at LifeLink and asked hard questions. I weighed my options and chose, and if I had any discomfort during the treatment, they had me in there within 24 hours.
No drug is for everyone. No treatment will work the same way for everyone, and actually is pretty different patient by patient.
Share your experience, good or bad, but leave the medical advice to the professionals. It is perfectly fine to advise members here of questions to consider and ask, but don't make blanket statements that are either unsubstantiated in the face of facts, or just blatant opinion based. Doesn't help anyone here at all.
Let's be helpful, and let's be courteous.
thanx,
jack
-
Thank you Luna i will read that when I am emotionally able, at this point I am so depressed I cry a LOT.
Morab what u just wrote hit the nail on the head, i get it all. But you see those who are not suffering like us really do not, and also seems do not care about out reality of tx and post tx. Kinda sad I feel compassion and empathy for anyone not well because of any disease they are fighting, have fought....
-
And Morab yes it does help to hear your experiences,opinions, and feelings for other like you so we do not feel ALONE..... Please do not stop you are quite respectable, courteous and appreciated.
-
jack
I personally have never said Harvoni is a bad drug.
It cures many people and this forum is proof.
I have only relayed that I am still symptomatic and unhappy.
Yes I should have found this and other forums before taking said drug
.
I was blinded by the advice of a specialist I trusted.
I accept that I was uninformed and that is on me as so many people on this forum have made that very clear!
But it is high time we were taken seriously, right now my heart is an issue and I am frightened to death. I have no way to pay for expensive testing that only works when I am having a spell during said testing.
All that is in itself so very depressing, on top of feeling so bad for so many months and seeing no light at the end of this tunnel for me and others in my shoes.
morab
-
morab,
I hope you find some peace. As I said, I too wished I had this board before blindly going into my first treatment.
You are taken seriously, but all this forum can do is listen and converse. Change or justice as you describe requires filings with the FDA, or perhaps an attorney, or both.
Thanks for doing what you can to help people.
jack
-
jack
I personally have never said Harvoni is a bad drug.
It cures many people and this forum is proof.
I have only relayed that I am still symptomatic and unhappy.
Yes I should have found this and other forums before taking said drug
.
I was blinded by the advice of a specialist I trusted.
I accept that I was uninformed and that is on me as so many people on this forum have made that very clear!
But it is high time we were taken seriously, right now my heart is an issue and I am frightened to death. I have no way to pay for expensive testing that only works when I am having a spell during said testing.
All that is in itself so very depressing, on top of feeling so bad for so many months and seeing no light at the end of this tunnel for me and others in my shoes.
morab
Unfortunately we cannot at all be certain that what you are going through is a side effect of treatment with Harvoni. Persistent heart flutter is something which none here are qualified to talk about. The problems you describe if persistent go well beyond the scope of what Harvoni or any of the current DAA treatment are know to cause.
I would be shocked if your PCP does not just simply order a good old EKG or even a complete CV workup including blood gas chem and the works. I would absolutely insist upon one if my palpitations had continued in the way you are describing. THEN if a doctor refused saying that the problem was in my head I would report them to their association and pay for one myself if necessary. DON'T mess with heart flutter get it checked out please!
-
Luna i did just read some of that article you posted for me and YES it scares me !!!! OMG i am not alone, i cannot even believe the people suffering and dying from post tx. I have been taking the supplements, will continue but have not felt much better but thanks for your info and the article ,will copy it and bring to my dr.'s
-
It grieves me when we attack each other rather than tolerate each other's differences. We are all in the same boat here, trying to row to health.
Here is how I hope we can conduct ourselves on this forum:
1) That we know the difference between facts and personal experiences.
2) That we never shame, judge, or mistreat someone because their experience isn't typical.
3) That we don't let emotions cloud evidence.
4) That if we disagree, we do so kindly, gently, and with facts.
Here's how I see it. Some people have a hard time. We don't know why. Is it their DNA, comorbidities, bad luck, something else that explains why they had an adverse event to that drug? We can try to figure it out together, but it is likely guess work. We aren't yet at the day when we will have a blood test to find out how our body metabolizes meds, although that is coming.
In the meantime, I think it is critical that we tell the entire story. The entire story is that more people die from hep C than all 60 infectious diseases COMBINED. And as awful as some side effects are, they rarely are as hideous as end stage liver disease, which is about one of the worst ways to die. So what happens if we paint a picture that treatment is hard, when in fact it rarely is? For me, if I hear "hard," I might shy away from it and never hear that most people find it relatively easy and they end up feeling far better as a result.
Many of us come to this forum for our own needs, but in the process, we create a community, hoping to help others find the right path for them. We need to be compassionate with those who have a hard time, but we also need to keep our perspective and the facts. The facts are that more than 20,000 people die from hep C every year. Death from treatment is in the single digits, and these occurred to people with very advanced disease who would have died without treatment.
-
I do agree we need to be respectful of everyone and not dismiss what others are going through. I wish to see that more. I think we should all be able to speak of our tx side effects, good or bad. We are all going to experience our tx different. I also believe we should be diligent on posting it, because people should be able to know what they may have to live with post tx. If i had known i would have waited. I do have cirrhosis and yes it could kill me, but had i been given a chance to know what this tx would have done to me and how sick i am now like i said i would have waited. When people come on the forum they will find most people are fine, but they should also know that other percentage that are struggling, its only fair. If people are at deaths door then I am sure they would know how to choose. I have been at deaths door and chose to have a mastectomy and tx that was not that nice BUT i knew the facts and decided for myself. I thought this time around i was being told the truth when the Hep Dr.s told me " little to no side effect" If our Dr.s are not knowledgeable or just not telling us the facts where else would a person go,but to others who have been there and that is us, ALL of us the healthy breeze through tx peeps and us, fighting to get out of bed peeps......
-
The problem is, even if you were told about the side effects some people are relating to the treatment, you have no way of knowing prior to treatment, if you'll be one of the sufferers. Its not like two sides of the same coin, where heads and tails come up roughly evenly. Folks who say, 'if I only knew what could happen, I wouldnt have taken the drug' might have made a terrible decision based on a remote possibility that they may suffer, vs a much greater likelihood they would have been cured and suffer nothing more bothersome than a headache or two.. You just dont know in advance. As has been said, all drugs have some ill effects for some people. While its very unfortunate if youre one of them, you just cant go making book on odds like that. I agree 100% with what Lucinda and Jack have said.
-
http://www.medschat.com/Discuss/harvoni-side-effects-282546_p1.htm
PAUL,Are Lucinda and Jack in pain? has there lives been forever changed? How cruel are you people out there living happily, healthy ever after????? take a look at the page i posted here and PLEASE try some compassion. But i think if i have to ask you to do that you probably just dont care.... good luck , i wish nobody anything bad BUT i do believe in Karma
.
-
Karin, why are you attacking me? Did I say something cruel to you? I said essentially the same thing Jack and Lucinda said. Why the hate?
-
This is what I hoped to avoid. For reasons that are unclear to me, Karin you seem to see something in Paul's words that I don't.
I am locking this topic for now. I hope we can move on.
-
Hi Karin
Of course we have sympathy for the pain and suffering you all have experienced. In my situation I have had liver cirrhosis for the last nine years if Harvoni hadn't been approved and I have been cured of hepatitis C with this my fifth treatment I don't know how much longer I would have lived. Thankfully my treatment was relatively uneventful and I am now cured of hepatitis C however I still bear the scars of my 37 year battle with that virus and likely my life has been shortened even though I am cured. So I really can't say that I'm living happily ever after post treatment.
Even though some of you have experienced serious symptoms during and post treatment that the majority of us did not as of this time there has not been a link established between what you guys experienced and whether it was directly related to your treatment.
I urge all of you who have symptoms that are concerning you from treatment or post treatment to contact the FDA at the number provided on the prescribing information sheet that came with your prescription. That way your concerns can be investigated and if found to have a direct relationship to Harvoni that information can get out there for everyone beyond the confines of this forum.
https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf
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
Wishing everyone here health and happiness