Thoughts from the coast

[cityman62]

Hi to all,just a few observations about the new harvoni/Rib treatment which I've done 10 days of.(Hep c geno 1a),no big drama so far,thick head of a morn/disturbed sleep pattern,no huge change in old symptoms- itching/insomnia/spasms etc.However,a huge positive change-after a wicked strange fever last xmas,massive hip pain issues suddenly occurred+knee aches,which have got much worse over the last 8 months-in spite of living on a daily dose of diclofenac,pre treatment,bursitis mysteriously flared up in one elbow for no good reason.basically,I've been living in a world of joint pains for this year.X-rayed,some wear+ tear in hip/knees fine.I work as a landscape gardener,and couldn't function really-hobbling/huge pain etc.First morn after commencing treatment felt SL.better.Now,if I say I was suffering Daily pain of all lower joints of say 8/9.Now its more like 4/5.Hugely more manageable,I'm convinced my joints were being attacked by hep c/immune system.Though the gp etc blamed wear and tear.I think I've received this treatment just in time-weird and unpleasant things were starting to happen to me.I think after 30 odd years of carrying it,it was starting to 'bite'-big time.

[Tatjana]

Well done cityman62! xx

[cityman62 in reply to Tatjana]

Cheers Tat,I hope youre coping OK,and sticking up 2 fingers up at any side issues x

[rickyrocket1]

hi city man are you on the sovaldi daklanza riba and are you on 3 riba twice a day thats what im on riba seem to be the ones that give me the problems

[cityman62 in reply to rickyrocket1]

No mate,I'm on 400mg of ribo in the morn+a diclofenac-for hip pain,then come say 7pm,its another 600mg of ribo+the harvoni tab,I think it's important to line your tummy bfore the ribo tab,with something fatty,milk/food etc.The ribo is doled out according to your body weight-Im 10.5 stone Max,but it still seems a big daily dose to me.I reckon I'm getting a nasty mix from the ribo-on the one hand,it fatigues you hugely-evening dose,but also it stops you from sleeping/disrupts your sleeping pattern too-get back to me for other thoughts,best,Andrew.

[cityman62 in reply to cityman62]

Just other thoughts too,I seem to remember reading/researching that ideally,if your at the cirrhosis stage,really 24 weeks of just harvoni would be the best option,but understandably we're talking a massive cost increase,so possibly,the ribo is just a blunt instrument to help the 12 week harvoni course?success with 12 week harvoni course=92℅,with ribo=96℅,whether the grief it brings to the party given an already impressive success rate,I just don't know......

[rickyrocket1 in reply to cityman62]

yeah same with me on the sleeping side its 5.20am at the moment and ive had about an hours kip so come 9 ill probably be tired then sleep crazy just be sweet with out the riba happy days ricky

[rickyrocket1]

yeah i also read up on it and they said same thiing 24 weeks but like you say cost etc im still gonna ask my professer/consultant though just gone be honest and say the riba are doing my swede in

[cityman62 in reply to rickyrocket1]

Try and stick it out mate if possible,however you may be suffering more than me,so only you can decide.Its funny how all these cures make all the problems you already had even worse-insomnia,lethargy,itching,fatigue etc.Me,I'm just glad I turned the old interferon/riba treatment down....

[rickyrocket1 in reply to cityman62]

yeah nice one ill try my best with the riba the other two tabs are a walk in the park by the way i did interferon twice back in 2000 and 2003 not nice and didnt work first time second time couldnt complete side affects devastating anyways down to the new stuff now take cre ricky

[cityman62 in reply to rickyrocket1]

Good on you,I was offered it praps 18 months ago,and said no thanks,asked about (then),new treatments on the horizon.Consultant emphasised how lucky I was to be offered interferon etc,and how much it cost the health service,told the new treatments would be FAR too late for me.Now,he admits how 'dirty' those old drugs were,and how embarrassed he now feels about patients ending up on intensive care.I guess you have to use the tools available to you,no matter how imperfect.We are all lucky.Stay lucky.

[bunny2be]

Had the same response on sofosbuvir ribovirin all joint pain dissapeard skin cleared amazing what this stuff does.Fibroscan from19.6 to13.5 and expecting to drop further

[cityman62 in reply to bunny2be]

Very interesting,kept being told 'wear and tear',Gp/physio/bone clinician etc,and indeed the evidence was there in my face looking at the xray showing my hip.But it offended my sense of logic that I go on holiday at xmas-no hip pain,then a wicked fever over hols,then back to work, and woah!I'm suddenly crippled,and now,after 2 weeks on harvoni/ribo after ,9 months of pretty much unbearable daily pain,I'm miraculously 60% better,that is obviously the hep c being 'knocked back'...The learning issue here for medical professionals is-liver experts aren't interested in your hip/joints,and also orthopaedics aren't interested in your liver issues.Never the twain shall meet.Consequently, there's a lot of people living in (posdibly) unnecessary pain,best to you,and chuffed that you too are now better

[bunny2be]

Must be some serious anti-inflammatory in those pills