After listening to me my Rheummy has agreed something has to be done as the RA meds are not working he has started the ball rolling from his end getting me a bed in hospital a.s.a.p. to start several tests all under supervision and after discussion with his superiors will sit round the table with the Respiratory Team who will object strongly to any Biological Agents, But has said they will have to discuss it at least as it's my decision and i know the risks as any chest infection could and would probably be fatal. will keep you all posted.Matt
Rheummy Agrees Biological is the way to go. - NRAS
Rheummy Agrees Biological is the way to go.
At least you've got someone to listen to you at last --'- just been reading your posts-'must be horrendous for you. Let's hope things will improve soon x
I'm pleased things are moving for you Matt. Hopefully they can meet somewhere in the middle once all the tests are done. Nobody chooses to be in hospital but I hope they realise why you need some relief & accept, to a greater degree, it is your choice to make. An awful position to have to be in but as it is there's not much option if you're to have something of a life. I wish you well.
Glad there is a response finally. I am going down that route too. All the best and hope it happens soon for you
What a difficult situation. Really good that the different consultants are going to consult each other though - won't it be brilliant if they decide the risks are not nearly as high as initially thought? Keeping my fingers crossed that that's how it works out.
Fingers crossed for you Matt, hope you get what you need & it works for you x
Hope they can reach a conclusion which will help you Matt. It must be soul destroying living as you are at the moment. Thinking of you.
Hi mattcass,
glad to hear that things are at least moving forward for you. Hope that you finally get some treatment that helps you.
Regards
Beverley (NRAS Helpline)
Thanks Beverley There is meds out there but its getting the one with the less risks, and to get the Rheummy Doc to admit none of the RA meds have worked for a long time we all know our bodies.matt
Hope you find a bio that suits you. My pulmonary fibrosis is stable and had my first Rituximab Infusions in November/December and still ok. Missed my appointment with the pf consultant yesterday but have a new one for Feb. I'll follow your post so I can see how you're doing. Good luck. Marie
Thank you Marie, I might pick your brain a bit later once things kick-in.Matt
Not much of a brain but will help if I can Marie
Well a half a brain between two ain't bad.matt
This is great to hear that finally some progress is being made and they will discuss your options keeping in mind that it's your body and your decision. I hope they all keep an open mind and understand you want to be able to live your life instead of just suffering. I wish you all the best!
Let me know how things are Matt? Thinking if you x A
Matt are you talking mapthera