Hi Sandcountry and welcome
your not the only one who struggles with forum and chat room protocol but I don’t think it matters much on here
congratulations on starting treatment sounds like you had a hell of a lot to deal with in the last few years I’m sure you’re now making a step in the right direction.
With regard to Tinnitus the scale I use is just my own way of measuring the noise level out of 10. The increase came on so suddenly and corresponded to the kick in of Riba l wondered if there was a connection, Did you notice any changes In volume during your previous treatments with Riba?
from what little I know about the condition there never used to be any cure or treatment
I did read recently that you can now get noise cancelling hearing aids that work like in-flight head sets but that sounds a bit extreme
there is also a forum I’ve been looking at that gives a lot of information that I’ve yet to try and understand If I find out anything interesting I’ll let you know
Best of luck with treatment
Keith

Hi Coral
I’m all sorted now after talking to Dr James on Sunday
I’m changing over to 12 weeks Viekira+ Sof after 4 weeks of Sof+Dac+ Riba
I thought you were in the UK. That’s why I aimed the questions that you
Cheers Keith

Hi 2b
thanks for your message. I feel I shouldn’t be too hard on the NHS as they are helping me and in fairness it’s all as new to them as it is to us so they don’t have protocols in place to deal this
The. 1st consultant I saw was somebody’s cancelled appointment and at couple of hour’s notice so he didn’t know what I was going to ask and was probably not prepared I expect I was the 1st one to ask but hopefully not the last
he was sympathetic but couldn’t do it on the grounds of the cost of nurse services and blood tests I didn’t argue the point at that time.
I then went to my GP who said it was a no-no but she did write to the hospital I think we stirred it up enough between us to get them thinking resulting in a change of attitudes.
I stalled at this point because I just didn’t know how to go about testing with private labs perhaps if we ever get a thread going for friendly hospitals and GPs perhaps it could include private labs that undertake testing their charges and maybe people’s comments I saw one post where they said the results took weeks to come back
I have to say that all the nurses I’ve seen both 1st treatment and now have been excellent, they are kind, supportive and genuinely caring
I now have all test results email to me as a hard copy of the report.
So take care and keep on ranting

Hi Susie yes I finally got there thanks for getting me started and yes Riba is via NHS I got 12 weeks supply so at the moment that’s what I’ll do I don’t know what the thinking is on taking Riba one nurse said take it for a couple of weeks and also heard just take it at the end so I’ve got 12 weeks to think about it and it’s not causing any real problems at the moment
I don’t know if you remember but I thought originally the hospital was on board but when I saw one of the doctors it was a no no then recently at one of their area liver meetings it was decided that it wasn’t such a bad thing to support people with testing and monitoring who were self funding their own medication.
I’m not sure if the decisions lie with the heads of department of each hospital or it’s an area decision anyhow they should be ashamed of not offering support considering how many hundred grand we are saving them
I want to find out more about how these decisions are structured and then maybe start a thread listing which hospitals/areas are willing to support us it may be helpful for people wanting to start treatment . Then there’s doctors GPs willing to support but they may not want their names out in the public domain . Perhaps there’s a way of doing it with emails privately.
Cheers best of luck
Keith