Forum Replies Created
-
Fantastic news Irma – So very pleased for you
Fantastic reading over my morning coffee Fitz –
Delighted for you
Hey Beaches
Pretty much as soon as I started Tx my sleep patterns became so wonderful,omg that made me so happy!
I know how that felt, I slept like a dream on the meds – and now a little erratic in sleep patterns again
I’m more tired than I was on Tx and sometimes feel a bit vague, which freaks me right out.
Yes, vague here too, very vague – I am thinking my brain wants to shut down about it all, ie have a rest, am hoping this is the reason. Short term memory loss and not interested in anything ‘organised’ or ‘necessary to do’ etc almost like I was when very young with no responsibilities ! Could do with having nothing to do , listen to music, gardening, walking in beautiful places, that kind of thing – Trying to do this as much as possible. Shame to miss the friendly dolphin – I would have loved that!
Like you I believe I carried the virus a long time, through all its ups and downs, not wonder we’re tired
Since EOT I’ve been craving carbs.Now carbs are not my friend although I wish they were. Normally I can ignore the call of the carbohydrate but I guess I have been in celebration mode and cutting myself some slack. Will have to go back to being serious about the nutrition again dammit
I hear you – What else can I say
will be tested at 12 weeks, on 02 September, but who’s counting. No point at all in getting tested before this but I wish that date would come quickly.
Not so long now Beaches, I have until end Oct , but may test a little sooner, but not just yet.
Not crazy on the yoga this end, but into the beaches and swimming big time – Hope you get some more in
Well, as I sit here munching on a coffee and a BIG FAT pastry
I send you big 
and you know where I am if you ever fancy a natter.Love LG xox
Good luck top you too Bob
You guys are a little further behind me, I’m in week 4 post tx. Have felt moments of sever tiredness, but also days where I feel totally ‘normal’ (if I can remember what normal is !) – Definitely feel like I needed a rest physically and mentally.
Be kind to yourselves as much as possible
LG
Good on David, he was helpful to me when I first came across this site.
and the Daily Mirror too, I believe this is a first for that paper? Great work .
Thank – you nads
almost got teary then ! So pleased you’re getting treated. I have found it is often helpful to mention to GPs that you are aware of the cost of the tests, followed by giving them a reason to do them. My GP likes this anyway. He’s also quite happy to request ultrasound at the hospital too.
Anyway, do seek advise re anything from Dr Debasis, he cares about every little symptom as has quite a refreshing holistic attitude. I still talk to him regularly now regarding supplement support now I am post tx and intendt to keep him on as my Dr for as long as I can to back up my NHS as a second unbiased & caring professional opinion. (actually the other way around!) ? Dr Freeman has also been very helpful regarding my slower response and my 3rd med. Luckily, I now have a really lovely supportive nurse here in the UK too
but things have improved dramatically since Jan 2016, thankfully !Are you taking Vit B12 and Vit D? These are recommended as fine on treatment.
Have your meds arrived yet? I remember the nervous excitement so well ! UK Debs fand I were having a little race ha ha Debs is now SVR 16 – Fantastic news
Looking forward to following your journey, you know where I am
Hey Nads – So pleased you found your way here
I used to be under Prof Dusheiko at the RF, lovely man & great Doc. The day before my next appointment, he emailed me personally to apologise that I wouldn’t be seeing him any more, I was upset as I felt supported by him and had asked my GP to refer me to the RF because of the Prof being there.
Like you, I was reallocated to a Dr T , is that the one you saw? What a waste of my time, travel costs & hope. He blithely lectured me on how I shouldn’t expect to get treated before those with cirrhosis (This after stating a few mins previously that they had now treated all those with cirrhosis), I was suffering with some symptoms, possibly similar to yours and he refused all diagnostics, refused to even do any basic checks etc and said a pulsating feeling under centre ribcage was nothing to do with my liver and to see my GP. Later I had a new LiverMultiScan which showed my worst fibrosis in this area. He told me I could wait for treatment. I told him this was no good and I would consider taking the new generic medicines. He said I would have to pay privately for all consultations and all blood tests (thousands of £) IF any Dr would do this and he very much doubted and anyway they were all too busy.
Having waited for that appointment in hope of addressing my rather severe symptoms, I left angry and depressed, my ‘consultation’ was just a lecture on how selfish I was, how I wouldn’t be treated any time soon and how I was ‘fine’ and didn’t need any diagnostics, this had a negative effect on my mental and therefore physical health.
Prof D suggested I ‘push’ for treatment and request an Ultrasound scan which I did, Dr T reluctantly agreed to the latter. My next appointment came around, but as he had said I couldn’t hope for any treatment until very earliest June 2016 and he couldn’t guarantee that, I cancelled through the Royal Free telephone appointment thing. Dr T then wrote to my GP telling him I hadn’t shown up. So that’s on my records . This can prevent future treatment, if you are listed as a no show. The Royal Free have apologised and suggested I take it up with PALS, but at the time I was trying to avoid stressful negative influences, so didn’t but may well do that now out of principle.
Anyway, pleased to say I treated with generic medicines via MonkMed / Redemption and am currently waiting for post treatment tests.
Do you now have monitoring? I can highly recommend MonkMeds Dr Debasis, he has been a tower of strength to me and extremely helpful throughout my treatment, but he can’t order expensive Viral Load tests on NHS more’s the pity.
If you need any advise re monitoring, GP support etc please do not hesitate to PM me.
Meanwhile, I wish you the very best for your treatment and regaining good health
I’m sure you will start to feel better very soon
LG
Hey RSf – At last – Wishing you the very best of luck and indeed it is a beautiful morning.
Delighted to read this happy news this morning Honker – Congratulations and Cheers to you mate
LG
Thank-you Ariel and Coral,
Yes Ariel, my sleep pattern is messed up. I seem to be staying up too late, but not sleeping late enough in the morning to make up for it and waking up grumpy.
I am mostly fine, but have moments of panic if I get any symptoms that my memory associates with the virus. These are usually overcome without too much stress as I am also have some lengthly periods of feeling more ‘normal’. Not sure what ‘normal’ should really be at this age as Coral says as been managing & living with this disease for so long, but I am having spells where I am ‘interested in life again’, so I guess it’s a thing of the mind. Having said that, I’m not feeling very sociable regarding people at all, feeling hermit-like and just want peace, quiet and rest, I’d be happy if I didn’t have any responsibilities at all for a few months and just well, be free ! Do you know what I mean? I’m sure you both do
Dear Coral, I am thinking of you and whatever the outcome of my next tests, will be around here to try and support you in your next journey. I hope you’re not feeling too bad physically and are keeping your spirits up as much as you can. From what I’m reading, there are some very hopeful new options on the horizon. We are so lucky to be in this new super-duper phase of new medicines and having access thanks to good people like MonkMed & Dr Freeman. as poor Ariel had to experience before. Also I feel blessed to have my treatment buddies on this unique forum, what would I have done without you guys
Still hoping to keep away from testing until after my little break, but the curious, impatient me is battling with my sensible me. I know I need a few more weeks rest from the whole damn thing, mentally, you know?
We shall see which one of me wins, hey
Big
to you both.LG xx
Hey all, For what it’s worth, I think this topic is interesting and looked into it myself, but am also aware that as Gaj says, someone may come along and not read the whole thread, so if we are unsure about something and it’s a debate, we need to make it clear so there’s no confusion.
Talked to a Dr re this med, he said there were some significant sx, as has been discussed already, ie serious drowsiness and you can’t drive or operate machinery etc. I vaguely remember Phenegan (spelling? ) were they blue? having always suffered from allergies and we have in the UK Piriton – I can only take a quater of one of one of those off the shelf easily accessed medicines – and at night only, they act well as a sleeper! I find a quarter works the same for any hives or itching as a whole one, give me nightmares and I look ok like I’ve drunk a bottle of whiskey or taken a handful of sleepers ! How anyone can take the recommended 3 a day and be normal I have no idea
hmy: Maybe these meds come from the same ‘era’? Interesting though, in relation to HepC. It will be interesting to see what comes of it.
