Home › Forums › Main Forum › Patient Stories › DAA Side Effects › on tx “pulsating, heart beat, speedy feeling”
- This topic has 52 replies, 19 voices, and was last updated 8 years, 5 months ago by Stephen-Powell-facebook.
-
AuthorPosts
-
12 December 2015 at 2:13 pm #6066
I stareted today Twinvir,
But interferon/riba before 10 months contributed to these symptoms ten fold. I had them before treatment too.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured12 December 2015 at 2:26 pm #6067Good luck Enkel – I look fwd to you starting to feel better.
My ‘consultant’ dismissed the pulsating heartbeat thing as ‘nothing to do with the liver’ But followed on with ‘We Are not concerned with symptoms’ and shut down the conversation. Mine Is in the liver area, Your theory would fit, but I do believe heart / BP should be checked when on tx, especially for those tx experienced, have carried the virus many years or have high fibro/cirrhosis and Of course those known with heart issues. Why not? It doesn’t take much and used to be part of basic observations for all things according to my friend and nurse of over 40 Yrs. Prevention is better than cure springs to mind, but hey, as they say ‘I am not a Doctor’
Edit : ps my previous lovely consultant checked heart, BP, eyes, réflexes, lungs, ears and abdomen -and noted in records – Good old fashioned ‘Dr-ing’ – It made me feel more confident in him and confidence in your Dr is a Great thing and can lessen stress. As my GP said ‘You need to have faith in those Who are treating you’ – I agree, it makes better relations for Dr & patients, has to be a good thing.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC12 December 2015 at 2:30 pm #6068Thats right. A check to the doc is a good idea.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured12 December 2015 at 3:01 pm #6069Bill,
Make sure you drink plenty of fluids, to the stage of ‘flushing’ your body by the evening. Seems to help.G
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
12 December 2015 at 3:04 pm #6072Yes especially pure water too at least three glasses or 750 g a day.
Male, Fibro F1. Geno 1b. ALT 67 before treatment Viral load 5 million. My huge viral load replicates in my nervous system as I suffer anxiety.
Started Twinvir 12/12/15.
Two weeks
ALT 17 at 2 weeks
Viral Load UND at 2 weeks
ALT 13.5 at 7 weeks EOT
ALT 10.5 at 15 weeks EOT
ALT 13 at 27 weeks EOT, VL UND, Cured12 December 2015 at 4:20 pm #6077At least 2-3 litres for me. But only other drink is coffee in mornings and no soft drinks etc
Melbourne has very pure water almost like rainwater, filtered through forest and very low gh & kh hardness.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
12 December 2015 at 11:36 pm #6105hi Billy & welcome to the forum,
Sorry to hear you’re having all those problems.I don’t have any answers rather more questions arising daily, but one thing I’m sure of is if I don’t sleep at least 8 hours at night I feel seriously unwell the next day on so many different levels, including mental/emotional. My blood pressure would rise as a direct result of sleep depravation. Others might need more or less sleep to fell OK, as each body’s needs are slightly different.
I believe that establishing a good & regular sleep pattern that works for you, as well as good nutrition is the most important base for any type of healing to take place & even more so when attempting to cure serious illness with toxic meds.
All medicinal drugs are toxic, all have body effects, some of those effects are curative & positive some are not so & are called “side effects”.
Our marvellous & super intelligent bodies are able to cope & make good use of those healing toxins & to help along the process our bodies need enough sleep & good food, to create the best conditions for the healing to be most successful, it seems a common sense to me.Now being the recent proud owner of Omron BP monitor & couched by a nurse I can see my BP is slightly high but nothing to be panicky about.
I don’t know if this is the cause of the tinnitus pulsatille I’m experiencing at night, but most probably as this is one of the multiple possible causes.
Are the HCV drugs contributing to it ? most probably, as I noticed the problem started the first night of tx, but I’ll never know for certain as it seems the meds affect people in different ways, as GAJ so eloquently explained earlier.I’ll monitor my BP for my own peace of mind & hope by the end of tx the problem will be gone too along with the virus.
Those who responded in this thread have reported slightly different experiences, we’re not all experiencing the same or similar symptoms.
For example I don’t experience any anxiety or panic attacks rather the opposite I feel much calmer since I started the tx. a “side effect” I rather like.
A few reported pain in the heart & some distinctive sensation in the heart area, again this is not happening in my case, the sensation I have is a sound of beating heart in my head & some strong general body pulsations.Not sure if this is helpful but most probably the great majority of all those reported problems will go away by themselves once the virus & the meds are eliminated from the body, it might take a while or not.
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA – UND. – down from 2 ML
9 weeks HCV PCR RNA – UND.13 December 2015 at 3:49 am #6122Hi Jolie and thanks for replying, along with all the others who are offering their stories and advise. You are right, everyone experiences different effects from the virus and the meds. For me, I was lucky to live the last 30+ yrs with HCV almost symptom free, except for some recent pain over the last few years in the gall area and a feeling of swelling of the liver (which has disappeared since starting the meds) but I rarely felt unwell through the years even though my VL has been over 10 mil. Ive known about having the virus for 25 years and feel the way I have treated my body since finding out has helped me; diet, exercise and no alcohol. After reading the comments on this thread, especially the one from Enkel, I have come to realise that my sides may in fact be related to some nervous system issues which are probably caused by the virus and also possibly amplified by the meds. As I mentioned, in a lot of ways these symptoms Im having; palpitations, vibrations, anxiety, muscle twitches, etc, since starting treatment mirror the benzodiazepine withdrawals I had 10 years ago, which is a nervous system reaction. This occurred after only taking a very low dose of temazepam for a relatively short period of time. Doctors were surprized I was suffering so much for what I took. I now put that easy addiction down to possibly having a compromised NS from HCV to start with. I have also noticed over the years, an increasing sensitivity to stress, some foods and and most drugs. Sleep has also been a problem since starting tx and I’m sure it doesn’t help with the symptoms and the symptoms dont help with trying to sleep, a vicious circle. And even though I have been taking the occasional half dose of temazepam to deal with it, something I thought I would never go back to doing, Im very wary about doing so and dont wish to aggravate things with another benzo addiction. I’d rather do my best with meditation techniques most nights and just deal with not much sleep. I think the main thing is to keep your eyes on the prize and hopefully things will turn around again once treatment is over.
PS: GAJ, I have been drinking 3 liters of purified water every day. Any more and I feel I’ll spring a leak!
Thanks again to all who replied. It’s been a most informative thread for me.
Billy
Gen 3a 30yrs plus
F3-F4
VL 14,000,000
Treatment Naive
Sof/Dac 20.8.15
EOT 18.2.1613 December 2015 at 4:08 am #6124This sounds like paroxysmal atrial fibrillation. An ECG at the time proves it, but if you know how to take your pulse and have a smart phone when it happens do this
Start a voice memo recording
Make a short noise for every beat you feel at the time you feel itNow play that to your doctor.
YMMV
1 January 2016 at 3:02 am #7653Just a nurse. I won’t tell you how many years because it will make me sound old
So now you know your blood pressure is a little high but nothing to be concerned about. A blood pressure of 150 is not going to cause a stroke.
But I found you something that can help. The song that has in studies proven to lower blood pressure a little. Just don’t listen to it when you’re driving.According to Scientists, This is The Most Relaxing Tune Ever Recorded
Here’s the 10 hour version in case you want to play it all night. It’s very relaxing…
https://www.youtube.com/watch?v=nKsEqFgKhoA
P
1 January 2016 at 3:50 am #7657Great track, thank you Price…will download if my dodgy net connection handles it lol
On BP – you can definitely withstand high levels over time. When I was in my early 20s I had readings of around 220/110 over at least 2 years, based on excessive stress levels (was in the process of realising I had PTSD at the time) Amazing what your body can withstand, really….so I wouldn’t be too concerned about minor elevations unless it indicated another underlying clinical condition.
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 261 January 2016 at 5:52 am #7662Its been great to read these posts. I too have a strong heart beat. It started around 2-3 weeks into treatment (Sof Dac). I can feel my heart beat very strongly its not beating fast but I feel it pumping away. It comes and goes during the day. Thats the only symptom. I had my BP taken at the clinic when I had my 4 week bloods done and it was the same as before tx. I didn’t mention it to the nurse at the time but at around week 5-6 I rang and mentioned it to her. She passed it on to my specialist and he suggested if I am concerned go to my GP as its not related to tx.
My feeling is that it is related to tx although I am not sure how. I am on week 8 today and have had broken sleep most of the time. My sleep has improved but still broken just not waking up as often. I figure that puts a stress on my body. Also I have a foreign drug in my body and that is impacting in many ways. I am hoping that the strong heart beat will go once I finish meds. I have decided not to go to GP. If my BP was noticeably high then it would have been picked up at 4 weeks test.
There is comfort knowing that others are experiencing this as well even if their symptoms vary from mine.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.20151 January 2016 at 7:25 pm #7731Price, what a beautiful music track, thanks! it’s really relaxing & reminded me of other “yoga/meditation” music I used to listen years back.
Thanks for your reassurance. I got myself a quality BP machine with well fitted & correct size cuff for my arm & am not worrying for now.
The BP is on the higher side of 140-150/90-95 since the beginning of tx, so if I can I’m trying to reduce it by natural means.Joan, I agree the strong heart beat for me is also somehow connected with tx. It might affect different people in different ways but def the heart muscle is working harder to pump the blood, that’s my feeling. Like you it can intensify for a while then get quieter then stronger again.
It could be something none looked into like the chemistry of the drugs affecting some nutrients necessary to support the heart, for example things like amino acid Taurine could be knocked out/ reduced on tx just like the B vitamins, esp that Taurine is manufactured with the help of B6.
Of course I am not a doctor nor biochemist, so just some ideas I looked into .For interested if you google; Taurine, HCV, Liver, Heart, you’ll get more info as to it’s function & connections.
Maybe a good nutrient to take as supplement to help the heart & liver to heal? esp for people who are older &/or vegan/vegetarian? who are not able to get it or absorb it from natural food sources.
It supposed to help the liver to heal from injuries caused by Steatosis & Fibrosis as well as lower BP – there has been some good studies done on both animals & humans, on the subject.http://bodyecology.com/articles/deficient_in_taurine.php
https://en.wikipedia.org/wiki/Taurine
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 – Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 – down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA – UND. – down from 2 ML
9 weeks HCV PCR RNA – UND.2 January 2016 at 2:20 am #7755Hi Jolie
thank you for that information. I read the link you sent and it was very informative. I do eat eggs and fish but I haven’t eaten meat mainly because I just can’t stomach it. I suspect I may have candida which could also impact on the lack of Taurine. I have taken B complex vitamins for years and when I started treatment I stopped taking them. This could be the reason I have the strong heartbeat…I have 4 weeks on tx to go and I will start taking the B’s again just to see if there is any difference.
The information you have sent is really helpful. All the best for the New Year.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.20152 January 2016 at 1:26 pm #7808h Hi Jolie – Very interesting, thanks
Hope you’re feeling better & flu has subsided.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC -
AuthorPosts
- You must be logged in to reply to this topic.