I'm afraid that my consultant has failed in getting the funding for the new ra drug

No other options

No idea where we go from here

Going to surgery today
With no treatment I will be having a lot more

Jenni

Oh no - how can they possibly justify that decision - have they given any indication? So, so sorry.

Have you managed to get a bed? I'll text later

MUCH love xxxx

So sorry to hear this Jenni. Hope you can just concentrate on getting over surgery for a while and keep the rest on the back burner. It seems so unfair. Thinking of you and sending healing hugs xx Ailsa

Oh Jenni
How can they say that? Surely they can't just leave you without anything! Time to shout - once the op is over.
Hugs
Sue

Dear Jenni
I just don't know what to say you must feel terribly, terribly disappointed and frustrated. I do think as others have said that you should be entitled to an answer as to why the funding has been withheld and then you can prepare your defense. I know you will not, cannot, take this lying down, but in the first instance get your surgery done and get better from that.
.....eve xx

So sorry Jenni. Why on earth would they turn you down? How bad do things have to get?

Sheila x

Hi Jenni

I know how much hope was riding on this one Jenni and am sorry that the outcome is not what any of us would have wished for you.

I wonder why JAK inhibitors is something being considered by your rheumatologist at this stage? It's all in the pipeline in the States but it hasn't yet reached Europe shores and then all the licensing procedures and testing and NICE approvals will have to be gone through. I can't imagine any way that a trust will be able to get hold of this drug until it has all the appropriate paperwork with it acknowledging its safety and all other aspects. It's simply not yet available for use!

This is the one that doessn't have the proteins so does sound ideal for you Jenni. I hope things move very quickly and something can be found in the interim whilst the JAKs and SYKs arrive here.

Thinking of you

Lyn xx

Jenni

What awful news. However, if anyone can fight this you can. I do not think you are one to take things lying down (pardon the pun). Once you are home and recuperating from your operation, lots of internet research on funding is required. NRAS, Arc and any other charity or organisation you can think about should be approached.

You are a young woman with so much to give that you should not be left in the "can't help" pile.

I am waiting for the funding and drugs committee to approve the new medication for me coming into Shropshire soon (Simponi) but it has been weeks since I heard anything so I have been wondering if my funding is not going to be approved.

I am afraid it is easy to say wait until it comes into the UK but erosion of joints does not wait for anyone and the damage, as we know, is irreprable. If I fail on Simponi, which is highly likely, considering my previous record of failure, this will also be my only option as I will most probably need the non-protein variety.

Perhaps we should organise a cruise ship to the USA as there must be other UK residents with the same problem

Don't give in Jenny, we are all behind you.

Jackie
xx

Jenni

I don't know what else to add as the others have already added all my thoughts.

Just want to say that i'm thinking of you and i know you are a strong woman and wil fight for the right to get what you need and deserve.

Love Shirley x

Dear Jenni
I can't believe they have refused! you need and deserve this drug. I am so glad that NRAS are trying to help. I wish I could help in some way too. Let me know if you think of any way that I could. I remember what it was like to hardly be able to get out of bed and I feel for you.
Naomi X