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  • in reply to: Undetectable at 12 weeks! #26657
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Thanks Coral, good to hear that you’re traveling so you’re obviously feeling well. I can’t believe the difference since I’ve stopped taking the meds. My energy levels are way up, I don’t wake up feeling depressed and have to force myself to face the day. Also I can now eat whatever I want without stomach upsets, I still do my best to eat healthily but I’ve so missed grilled cheese on toast and hadn’t eaten it for years until recently. Also I pulled my back earlier and took some anti inflammatory medicine which my tummy never used to be able to tolerate.

    Since I’ve felt better my social life has really improved, and it’s great to be able to plan things without worrying that I won’t be well enough to do them. I feel truly blessed thanks to all at fix hep c!

    Thanks again for all your lovely mails, have the best time traveling and enjoying life to the full x


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: Undetectable at 12 weeks! #26592
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Thanks Keith,

    I see that you relapsed after your first course of treatment, that must have been so disappointing for you, however you seem to be responding quickly to the meds now, and like you say we’ll get there in the end. Will keep my fingers crossed for you and look on here to see how you get on. Bye for now.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: Undetectable at 12 weeks! #26591
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Thanks Mnem, and for all your lovely messages to me throughout these past 16 weeks!

    In one way I’m glad that I couldn’t access these meds through the NHS as although it would have saved me the cash which would have been more than handy, I wouldn’t have had this forum and the support it’s given me, not to mention being able to email Dr. Freeman and have his speedy response to any worries or concerns that I’ve had. Instead I would have had to wait for a hospital appointment and hoped that I got to see one of the few doctors who I actually get on with. I also doubt that I would have been given an extra 4 weeks treatment after being detected at 8 weeks due to the high cost of the tablets to the NHS.

    Anyway it’s good, and I’ll keep you posted with my next blood test results. Fingers crossed I’ve got rid of hep c forever! And I hope things are still improving for you x


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: Undetectable at 12 weeks! #26580
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Thank you, do I ask my GP for a liver test after 4 weeks to check it’s function? Oh and do I need any other tests at 4 weeks or do I wait until 12 weeks after treatment?


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: 2B HERE #26475
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi Mnem – yay! That’s brilliant news, very very happy for you!


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hiya,

    Take the meds they do work. My friend who put me on to this site had geno 3 and it was undetected at 4 weeks. She finished the course though as it’s important to make sure it doesn’t come back.

    I’m taking the same drugs for geno 2b and it’s working for me.

    Good luck.

    2bornot2b


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: RNA detectable at 9 weeks :-( #26473
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi Coral,

    I was doing great until about a week ago and then took another dive. Stomach pains/feeling sickly/bloated tummy/zero energy, no pains today but have all the rest of the side effects. I feel hungry but find it hard to eat as I don’t know if the food will settle my stomach or make it worse. I’ve lost a few pounds in weight so now have skinny arms and legs with a distended tummy – not a good look!

    I’m 3 days into the last 4 weeks of the meds. Dr. Freeman said it’s preferable to take 8 weeks at this point with being a slow responder, but understood that I’m not rolling well with them and figured that 4 weeks would be enough. I’m going for my 12 week blood test in a couple of days and I’m trying not to dread the results, probably because of previous disappointments.

    So I’m feeling fed up at the moment, I stopped taking my herbal HRT medication 12 weeks ago so that isn’t helping my frame of mind. The hot flushes are back some nights and I’ve tossed and turned so much that I’ve triggered my old back injury so am headed to the chiropractor again this week.

    I’m still taking the reduced dose so no idea why I’m feeling so awful, maybe it’s just the build up of chemicals in my system and my body really doesn’t like them. I know it’s just to give my head a shake and keep taking the tablets, I’m very lucky to be in this position and don’t have any right to complain and I keep reminding myself of this when things start to overwhelm me. My landlord has sent various workmen round to do maintenance on my 300 year old house which has been really disruptive, and I could have so done without all the dirty boots and bags of plaster traipsing through my home. Hey ho! At least the work is done now and it’s just to clean up the mess, slowly I might add.

    So my dear I bet you’re sorry you asked! :-) Thank you for your concern though. I hope I don’t sound too miserable as I do my best to be as upbeat as possible and don’t want to put years on you!

    The good news is that I’m going to stay with some friends up north in the Lake District next week and hope that the break will do me the world of good. I’ll message you when I get home and hopefully tell you that I’m doing good again.

    I hope all’s well with you, bye for now x


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: Constipation with Daclatasvir/Sofosbuvir #26387
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi heatherlou 30,

    Sorry to hear that you’re suffering ……. I’ve had digestive problems for years which I’ve always put down to the hep c. I’m week 10 on the same meds as you, the first few weeks I did have a problem with constipation. I was still managing to go but just not as much as usual, so nothing like as bad as you. However it was unusual for me as I never get constipated. After about 3 – 4 weeks my digestive system got back to normal, so with a bit of luck yours will too. Just hang in there, it will be so worth it when you’ve got rid of this horrible disease. You could try squatting on the toilet seat as it’s a much better position to have a poo, if you can’t cope with that then just lean forward as much as possible while sitting on the seat. Hope it helps and you feel better soon.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: RNA detectable at 9 weeks :-( #26386
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi Coral,

    Thanks, yes it’s all sorted and the meds are on their way, and looking forward to taking my last tablet in 5 weeks time.

    The side effects have definitely decreased on the lower dosage, my son keeps remarking on how much energy I’ve got and I feel so much happier in myself.

    I’m thanking my lucky stars for finding out about Dr Freeman and this site, and for having the money to buy the drugs. I am truly blessed!


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: Hep C saved my life !!! #26343
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi sumblues,

    Glad that you’re doing well on the meds. I too have had side effects, not so much headaches but feeling fluey and upset stomach, disturbed sleep. Dr F suggested I reduce my dac dose to 45mg due to my weight which has helped a bit. Like yourself I’ve avoided taking pain killers/antibiotics etc for fear of harming my liver and upsetting my already upset tummy which has plagued me for years. What you say about adjusting the ph to your water is interesting as ph is so important. How do you do this to water please? Are their kits in the pharmacy that I just haven’t noticed?

    Oh I’ve just read further down this page and see that you’re undetected – yay! That’s brilliant! I’m just over 10 weeks into sof/dac, still detectable on a very low level but on Dr. F’s advise have just ordered another 4 weeks of meds that should do the trick. I certainly hope so as the side effects have eased but some days I feel really crappy, and I’m so looking forward to the end of treatment, but that day will come. So glad for you though. I know what you meant about wanting to spread the word, I feel like going to the liver clinic waiting room in the hospital and letting people know that they can do it for themselves, if like myself they weren’t eligible for the treatment on the NHS. I won’t though as I’m sure it would go down like a lead balloon with the hospital staff.

    Anyway if you could let me know about the ph thing that would be great. Wishing you a lovely brand new life, hep c free and happy.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: RNA detectable at 9 weeks :-( #26325
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi,

    I had a chat with Dr. Freeman last night and I’m having a 4 week extension with sof/dac. And yes, it will b nice to see undetected one day. Thanks for your input and your message, hope all good with you.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: keith’s retreatment #26312
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi Keith,
    Good to hear that your experience with the NHS was so much different to mine. I totally understand the constraints and concerns the NHS has regarding generic medicine, and everyone is entitled to their own opinion, however it wasn’t so much what they wouldn’t do for me, but the way that this was conveyed to me. One Registrar at the hospital went ballistic when I told her that I had looked into buying the meds for myself and really wiped the floor with me,she wouldn’t even let me have a copy of my latest blood tests which I’m legally entitled to, but insisted that I contacted an agency, pay a fee and wait 6 weeks for it to come through, rather than press the print button on the computer whilst I was there. I was feeling so ill that day and was sobbing my heart out as she ranted on and on about why I should on no account buy the meds myself. I think she panicked then and tried to cover her back by accusing me of being rude and aggressive. This really shocked me as I had been nothing but polite, I think she must have been trying to cover her back in case I made a complaint against her. This is just one of the horrible experiences I’ve had the the hospital.

    I realise that the NHS offers a wonderful service, they are underfunded and under terrible pressure doing their utmost under the circumstances. It only takes a national disaster like the recent terrorist attacks in London to see the dedication and selflessness of the medical profession at it’s best. It just saddens me that after so many years of doing my utmost to help myself health wise (as there was nothing the doctors could offer me other than interferon which I knew I wouldn’t be able to tolerate), that I am met with such opposition and grief.

    Anyway the good news is that I am here now and 10 weeks into my treatment. I don’t like to dwell on negative stuff and just wanted to make myself clear that I’m not having a go at the NHS as a whole, just the way I’ve been so deeply hurt by the attitudes towards myself when I was too poorly to stand up for myself and didn’t have the strength of mind to let it go. I also feel for other people who like myself are not eligible for the treatment on the NHS and are unaware that you can take your health into your own hands.

    I hope your treatment is going well and you are having a good day.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: RNA detectable at 9 weeks :-( #26311
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Thanks Coral, yes it is going in the right direction thank goodness. I guess I was just surprised at my slow response as 2b is meant to be the easiest to get rid of, but we’re all different I suppose. I’ve a phone call booked with Dr. J later today so no doubt he will fill me in as to how much longer I have to take the medication. The past 3 days I’ve had an upset stomach, it comes and goes during the day and night but it’s really getting me down this morning. Hopefully it will pass soon as I’m invited out to a lovely birthday lunch and I’d really like to go but no point if I still feel like this. Western medicine always has this affect on me so it’s just to get on with it, but some days it’s harder than others. I have really good days too so I’m not complaining, just struggling a bit at the moment. Anyway thanks again for your kind words of encouragement, my friends are lovely and supportive but no-one understands properly what it’s like to have this disease unless they have had it themselves. As you say the outcome will be so worth it.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: RNA detectable at 9 weeks :-( #26291
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Thank you Hazel, I had no idea it was low to nothing so that’s brilliant news!

    Smiling now ….. :-)


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

    in reply to: keith’s retreatment #26289
    2bornot2b
    • Topics: 5
    • Replies: 40
    • Total: 45
    • Recovery Champion
    • ★★★★
    @2bornot2b

    Hi Keith,

    I’ve been reading your posts and meaning to write and wish you luck with it all. You are in very good hands now and I’m sure you will rid yourself of this horrible disease at last.

    It’s interesting what you say about the response you’ve had from the various attitudes of the doctors regarding the generic medication, and your idea of maybe starting a thread to give more information about those hospitals who are more willing to help is a good one. I’ve had nothing but opposition from the hospital and my GP very reluctantly agreed to monitor me as “if anything happens to you then I didn’t write the prescription” – how encouraging! So yes she is monitoring me – but I use the term loosely as basically all she’s done is provide the various blood forms, and on one occasion rang me with some of my results, leaving another GP who wasn’t aware of my situation to phone me with the viral load result. For my latest 9 week check I just picked up the printed forms from the surgery – no phone call at all.

    I used to dread going to the liver clinic at the hospital for my yearly check and would do my utmost to see the one doctor there who didn’t upset me or try to scare me into taking interferon which I made abundantly clear wasn’t an option for me. What really surprised me that it was clear from my records that I’d got my ALT levels down from 150 to 49 by taking prescribed Chinese herbs, and instead of showing some interest in this I would get the usual speech about side effects (none) and potential long term health problems, even though my liver has no scarring after decades with this disease, and I’m certain that this is down to 8 years of Chinese herbs and acupuncture.

    I found out about the new drugs sof/dac on my last yearly check at the hospital, but was then told as I’m 2b and treatment naive I wasn’t eligible, unless of course I wanted to try the interferon first, and if that failed then I would be eligible for the new drugs. Knowing that there was an alternative to the interferon and being denied it really rocked my world. Then through a friend of a friend who was on this redemption trial I joined it myself and am now 68 days into my meds, still RNA detectable unfortunately but I’m a slow responder and am certain I will get there eventually.

    The friend who put me on to this site has now completed her treatment as has got rid of the hep, she was fortunate in that her local GP surgery incorporated a liver clinic and she was dealt with in a much more positive way than in my experience. In fact I feel very let down by the NHS as I’ve paid privately for various treatments for years in an effort to improve my health which has taken up most of my disposable income, and as you say we are saving them grands by buying the medication ourselves.

    So thank God for all those who set up and run this site, I would have been lost without the words of encouragement and the patience I’ve been shown in how to negotiate this site. Not forgetting the fantastic feed back to my questions and concerns from Dr. J and everyone else who has written to me.

    Anyway Keith, rant over about liver clinics and GP’s – I know that everyone is different and I’ve just been unlucky with who I’ve had to deal with. I wish you all the very best of everything in your journey to good health.


    2b diagnosed about 10 years ago
    Alt was 150 but got it down to a consistent 49 with Chinese herbal medicine
    Started dac/sof 27/03/17
    4 week test – liver function normal – alt 31
    full blood count normal
    RNA detected 26 IU/ml Log = 1.42
    9 week test 26/05/17
    bloods and liver function normal – alt 27
    RNA detected <10 IU/ml

Viewing 15 posts - 1 through 15 (of 40 total)