Hi again all and firstly an apology for the repeat plea for help. Its about the petition to get NHSE to follow the original guidelines laid down by NICE so people like me who need this drug now can be prescribed.
Whilst I realise most on this site have already signed as of now we have 5576 signatures so we need another 4425 to force a response from the government. Please have a think who else you can ask to sign and ask them to ask family and friends. We really need to push it now else it wont happen.
Again thanks for the support.
Brief update on me. They are still treating the symptoms but are now reducing the steriods and I can tell as I feel really ill. I'm back on the 24th July and hopefully there will be news on when/if this trial will start as I can't carry on much longer as I am, or I will be too ill to have any treatment. The good news is I only have to make a phone call and they will see me straight away. The plan then is IV steriods on a Monday Wednesday and Friday again just to boost me.
Stay well folks.
Here's the petition link again.