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  • 24 December 2015 at 4:18 pm in reply to: Jolie’s party #7241
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi, hope everyone is well today,
    Been absent for a few days & it’s incredible how fast this forum has grown in that time, so many new members & new posts.
    Am looking forwards to do some readings to keep up with all the interesting stories here.
    This must be the fastest growing HCV forum I’ve ever known, excellent.
    I just pass the 3 weeks point & will have some bloods tests done after Christmas.
    I noticed some small improvements here & there but energy wise am feeling rather tired in general.
    My mood is also a bit sombre & blue for the last few days, could be Christmas & stopping very busy work period up until yesterday.

    Wanted to wish everyone here healthy & joyous festive season !

    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 4:49 pm in reply to: Jaz’s Sof/Dac Journey Gen 3a #6167
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Hi Jaz,
    I take my meds in the evening, but away from meals for better absorption. I sleep better then before as I did have insomnia for years, so this has improved greatly. I noticed that about 1-2 hours after taking the meds I feel a bit more “druggy” & relaxed, so I think that helps me to sleep better & fall asleep easier.

    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.

    12 December 2015 at 11:49 pm in reply to: HCV-Related Nervous System Disorders #6108
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    the question is will all those extra HCV caused problems be gone when clear of HCV ?
    if so when? at 1 week ? 2 weeks ? 4 weeks ? 12 weeks after tx?
    I suppose we’ll be the first to find out & that will probably depend on individual bodies ability to heal & repair the damage.

    Als do you feel well ? now you’re free from the virus?

    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.

    12 December 2015 at 11:36 pm in reply to: on tx “pulsating, heart beat, speedy feeling” #6105
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    hi 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.

    12 December 2015 at 10:32 pm in reply to: Jaz’s Sof/Dac Journey Gen 3a #6097
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    welcome Jaz, fellow 3a

    I only just started tx 12 days ago & is going OK, am able to work & had a few really good days. This treatment is really so much easier then the old regime, Well done for getting it organised for your self & finding this site,
    I wish you smooth sailing & am looking forwards to hear of your progress,

    jolie xxxx

    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.

    12 December 2015 at 10:13 pm in reply to: Jolie’s party #6095
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Thanks everyone for your thoughts & good wishes,
    Nadia, sorry you feel tired towards the end of the tx, is that constant tiredness? or comes & goes?

    In my case the progress is not linear, the tiredness comes & goes, it’s like 2 steps forwards & 1 step back kind of war dance.
    Today for example I do feel rather down & significantly more fatigued & brain foggy after really good couple of days.

    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.

    10 December 2015 at 11:54 pm in reply to: Jolie’s party #5845
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    It’s been 10 days today since I started tx & there is not really that much to report, the tx seems easy, very easy as compared to what I went through 10 years ago on Interferon & Riba, even remembering it makes me feel unwell.

    I’m able to carry on working full time, I did not have to stop, something I had to do on the old tx.
    I noticed I have a lot of more physical energy & stamina & carry on doing things well into late evening where for the last 2 years my day finished at 4-5 PM & after that it was “relax time on my sofa”, as too exhausted to even talk with friends over the phone.
    My phone was mostly off the hook in the evenings.

    My mood seems to be much more positive, I appear to be more patient where before I’d easily get irritable or upset, calmer with sort of strange sense of feeling “content” rather then the habitual restlessness.
    A sense that “everything is OK”, something I have not experienced for a very long time.
    As others reported I have to be careful not too do too much when I feel well.

    There is still a bit of brain fog that comes & goes, but before the tx the brain fog was constant, it never went, even after many cups of coffee.
    That’s another thing, I completely stopped drinking coffee & black tea 10 days ago, I just don’t need it anymore, where for months I drunk 2-3 coffees per day as without it I was not able to work or function at all. Coffee & all sorts of “healthy stimulants” like Ginsengs, etc. was part of my daily diet before.

    The first few days on the tx I felt a bit druggy & foggy, to be expected, now it all feels a bit lighter with long periods of feeling well…& occasional tiredness, but it’s a different type of tired, like being tired after working all day & doing other things.
    It’s still early days, but so far I’m very happy with the way the tx unfolds, in general I do feel better then before treatment, I sleep better, where before I had chronic insomnia.
    My first bloods are scheduled in 1.5 week time, but I already do somehow “know” this is really working, this stubborn virus is being hammered.

    I wish everyone on tx an easy ride,
    jolie xxxxx

    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.

    10 December 2015 at 11:13 pm in reply to: Viral Load Results #5842
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Excellent news Paul, congrats ! :cheer: It’s so great to hear yet another person joined the Undetected Club, esp a fellow G3a.
    The G3’s supposed to be the “most difficult to treat” – the experts told us, maybe difficult to treat with the old toxic Interferon & RIba, but not with this amazing new DAA’s.

    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.

    10 December 2015 at 12:09 am in reply to: Dan’s Twinvir story #5714
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    “I got no no, from consultant for monitoring on generics. I was told it is not allowed, as the quality of drugs is not great”

    Dan, am sorry to hear this,
    what does the consultant know of the quality of the generic HCV drugs ? not allowed ?? total rubbish,

    Anyway, hopefully you can have some bloods done at your GP and/or privately, there are at least 2 brands of clinics doing it online in the whole of UK.
    I know of people who did use their services for other health problems & they were happy with it.

    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.

    9 December 2015 at 11:32 pm in reply to: Swollen Feet #5709
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Hi Panamajo,
    Congrats on your PCR results & sorry you’re feeling a bit low.
    I remember when I had the old tx with Riba added, I was all over emotionally, either crying a lot or most irritable & sensitive.
    It also makes you feel very weak due to anaemia, you do need some comprehensive blood tests, as doc James said, to make sense of what’s going on with you.
    Riba does mess with your body chemistry in a big way.

    Do watch your salt intake, as overdosing with sodium can cause feet oedema as well:
    http://www.livestrong.com/article/361296-salt-swelling-in-the-feet/

    Hope you feel better soon,
    jolie xxxx :)

    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.

    9 December 2015 at 11:18 pm in reply to: on tx “pulsating, heart beat, speedy feeling” #5707
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Out of curiosity last night I did some digging on the subject of “hearing heartbeat in your head” & find out it actually has a medical name! pulsatile tinnitus :woohoo: “pulsatile tinnitus is a rhythmical noise that usually has the same rate as the heart” – so this is what’s going on in my head with pulsations radiating throughout the body < night, more info link : http://www.tinnitus.org.uk/pulsatiletinnitus
    I always thought tinnitus is some kind of whistling noise in your ears, I had not idea of another type of pulsating tinnitus.

    The good news is it has nothing to do with BP, the meds, the tx or HCV, it's something most likely unrelated.
    Bad news, needs investigating further probably soon.

    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.

    9 December 2015 at 1:55 am in reply to: Thank you to our newest moderator #5594
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Excellent , thanks Paul, you’re the Man :)

    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.

    9 December 2015 at 1:23 am in reply to: Dan’s Twinvir story #5590
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Best of luck tomorrow at the doctors Dan, :)
    In the last few days I get few hours here & there of more energy & sense of better well being, kind of “calmness”, but it does not last , usually followed by the more familiar fatigue & foggy brain.
    This is a positive change from experiencing only fatigue & fog, now there is some brightness coming through from time to time , like sudden blue sky appearing from behind heavy dark clouds….& then it vanishes again,

    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.

    9 December 2015 at 1:01 am in reply to: on tx “pulsating, heart beat, speedy feeling” #5588
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie
    Price wrote:

    Jolie, try putting the blood pressure cuff on the lower arm where it fits better. We do that in Intensive Care when we can’t use the upper arm.

    Also, if your blood pressure is high you don’t want to make it go up by exercising. Take it easy, relax.

    Thanks Price for this suggestion, I did that & the BP was still high but not so much, 158/88 & then when repeated with the larger cuff but on the lower arm it came to 140/83. So size does matter after all.
    Am not sure if any of this is accurate & not much luck to get to surgery before it closes at 5PM here & I finish work at the same time.
    Anyway, I did some reading as to what’s the most reliable BP machine I can get in the UK & have ordered one online.

    Exercise moi ??? no way, me & exercises don’t agree, although I do a bit of walking, hiking & swimming, that’s about it. I wish I could do more but for the last few years after finishing work I’m so wiped out I don’t have the strength to do anything but relax on the sofa, never mind exercising.
    Price are you a doc or a nurse ?

    LG, yes there is a free BP huge machine at my surgery with a hole in the middle where you insert your arm & then the machine squeezes it & at the end prints out a piece of paper with your BP, I have no idea how accurate or hygienic it is. The problem in a small town is that doctor’s surgeries are opened only during normal office hours & are closed at 5 PM & at the weekend, so if people work like me they don’t have a chance to see their doc unless they take half a day off work which is not always possible.
    Good system for the NHS to save money, they must have concluded that if someone works then hey must be well enough & don’t need to see a doctor….. :unsure: Gaj, thanks for your interesting thoughts,
    Personally I try not to give too much attention to any thoughts that leads to extra stress or too much excitement, anticipation, as that brings the BP up amongst other things.
    Calmly focusing on the task at hand is about all I can manage at present & even that is hard with low energy. :)

    Tina, glad to hear you’re sleeping better now, sleep is so important in trying to heal our bodies on & off tx.
    I don’t have a problem so far with sleeping while on tx, I sleep 10 -11 hours every night, but it does take a while at times to fall asleep.
    I do take the meds at night, at 8PM, so maybe this plays a role in sleep pattern ? don’t have a clue.
    Before tx I did have a insomnia & sleeping was difficult even when exhausted.

    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.

    8 December 2015 at 2:28 am in reply to: on tx “pulsating, heart beat, speedy feeling” #5455
    Avatar photoJolie
    • Guardian Angel
    • ★★★★★
    @jolie

    Thanks everyone,
    To answer prior question , yes I was aware of Dan’s thread talking about this & also I remember few others over the past few weeks but could not find it now, so thought maybe this topic needs it’s own thread – so is easier to find.
    Then again, maybe this pulsating, throbbing sensation is not as common as I thought.
    It also appears some folk here had similar symptoms & sensations before tx, interesting, as I only noticed this since taking the meds, almost from day 1 but intensifying as the tx progress.

    Anyway, what happened after I left earlier to find somewhere in a small UK town to have my BP taken at the few pharmacies we have here, hmm…no luck !, such service was not available. I managed to buy bigger cuff size for the BP machine as advised by yet another pharmacists only to find when brought home that the machine is not powerful enough to inflate the bigger cuff, it only works with the small size cuff – which gives off the wrong reading.
    When I pointed out about the cuff sizes she was not aware of it & surprised, just as myself assumed that the cuff size was universal on all BP machines, so we’re all a bit wiser now.

    O well… the saga continues…we’ll see what I can do tomorrow to have my BP taken, I don’t feel panicky on in danger, just want to know what’s going on so I can do something about it, if I can.
    Since I had that brisk walk this evening in town I feel much better for it.

    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.

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