Ok saw my Rhumy consultant and nurse today ... the Rhiximb not work following in the steps of Humira and Ifliximib so now he want to try the Tocilizumb with reservation as have trouble with access to my veins and it a monthly treatment . But I am tired now after all these years ,wit hthe lung problems now and possible eye issus going along with stroger glasses .I have had it with hospitals ,blood tests and then having to cope with people who want ot judge us with this condition. Has anyone else had a text message from the DWP saying to let them know of any changes in circumstsnce . or may be prosicuted..........I dont have a change in curcumstances as far as I know , has some said something , is my trying to look normal been taken as being normal, that 40 years of pain should show in my every move after years o not trying to show it . we will see but feels like pressure i dont need . So any one else on the new wonder drug and does it have any sucess ..
Tocilizumab woozer another drug to try ....so thats 4... - NRAS
Tocilizumab woozer another drug to try ....so thats 4 and counting and hoping as 3 not work .
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Not sure about the drug thing but DWP ... regardless to the text message if nothing has changed and you have nothing to hide you have nothing to worry about so stop fretting.
Hi
I too am due to start this drug soon this will be my fifth wonder drug so I'm not really excited even though I've read good reports on the drug its just hard to get hopes up after so many fails.
Good luck x
Julie X
All I know is that NICE has approved it in a more positive way that some of the others (ie not that you can only have it if you jump 45 hurdles and convince an army of doctors) so they must have confidence in it... Hope it's the one for you both. And as for DWP it's probably just a new campaign so done automatically to every 10th person or something similar. Try to ignore it. Polly
THanks all , think it just my mind in melt down mode over the DWP thing ... I am not feeling well at all at mo and it seems to affecting my emotions and causing painic lol. sorethroat that will not go away and they will not start the new treatment if got an infection. but my throat could be just a result of the new inhaler i have as my mouth sore too, But I hate going ot the doctor , prefer my rhumy any day . he listens ....He was going to give me this drug last year but went for Rhumxiib as do not need so many infusions due to my problems with getting to my veins . Hope your treatment works for you RA but i like you am not really excited or expecting too much ,just have some hope ..
Hi there! Just read your comment and I am with you all the way! I have zero neg and due anytime soon to be admitted as day patient for above infusions, just waiting for the bed space at the hsp. Like you I have already tried 3 biologics and all those drugs before them. Nothing seems to have worked up to now (over 4 years diagnosed) apart from slight improvement with injection methotrexate but had to come off because liver/kidneys etc getting damaged.
It is so upsetting when we are the people with genuine diseases, not abusing the system but the systems and society abusing us!!!!!!
Most people wouldnt last a day with the pain,swellings and brain fog we have to contend with on a daily basis.I reckon we all deserve medals putting up with what life has thrown us!
Well lets hope we have good responses from this wonder drug as I read it has a high success rate ! So best of luck and dont let the system get you down, we all know how disabled we really are. We just need to stick together as always on this site and we will get through it in the end. Let us know how you get on with the treatment and I will too.
Take care BFN xx