What next

[Rachel43]

Hi all

Since February 2014 my RA has not been controlled. I had rituximab last August (which failed) and in March of this year I started toxciclumab injection. Today I've received the news I didn't want to hear I have to stop it.

I had injection weekly for 4 weeks then my white count dropped. They stopped the injection & I've been having weekly blood tests. Although it wasn't within 'normal' range they let me have injection last week, had bloods yesterday & today phone call from hospital to say stop injection. I am now sat waiting to hear 'what's next'.

Feeling low & had a little cry. I'm struggling for money as I'm on half pay as I've been off work since November. Money stops in September. What the hell am I supposed to do?

Single parent with mortgage to pay feeling scared, sad & frightened about future 😪

[Hidden]

Hi Rachel43,

So sorry to hear that you are feeling so scared and sad. I don't know if you have been tried on any other biologics other than the ones you mention but I have put a link to the section on our website about medication which includes the biologics, of which there are currently 8. It may well be that you are able to try one of the other ones:

nras.org.uk/medication

It is difficult enough worrying about your condition without the added stress of financial considerations. I have put a link to our publications on benefits for you to look at but it may be helpful to ring the helpline so that we can talk in more depth about what help there may be out there for you:

nras.org.uk/publications/be...

nras.org.uk/publications/ho...

Helpline contact details:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

Please do give us a call

Best wishes

Beverley (NRAS Helpline)

[Livingston]

That's so crappy. Citizens' Advice Bureau are good on benefits advice & can help you with getting the wording right on the application forms.

[Metal-legs]

Oh Rachel that is just the news you didn't want to hear. Do they mean stop it for good or until your white cell count improves? If they change your drugs have you tried abatacept which I am currently on.

I can understand you are feeling really low. It puts enormous stress on you being a single parent as well as working and managing an illness. You may not want to look at benefits but if you are entitled to anything like working tax credit, pip etc go for it. You need as much help as possible.

I hope you can find a way forward. Take care xx

[Hidden]

I was in a similar boat in dec 2013. After 28 weeks statutory sick pay o was able to apply for employment support allowance.

Are you getting ssp?

[Rachel43]

I'm getting ssp at present. Been with my employer for 8 years so entitled to 6 months full pay then half pay for 3 months which is up. Had my last pay yesterday. Will look into esa.

Thanks