Not sure what to make of this.: I am not in a very... - NRAS

NRAS

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Not sure what to make of this.

smithfield profile image
10 Replies

I am not in a very positive frame of mind or feeling very confident at the moment.

Yesterday I rang my Rheumy nurse to see if the funding had been agreed for my biologic yet ( it was applied for 5 weeks ago)

She was on leave however her replacement kindly phoned me back, having spoken to the Biologics Co-ordinator first. The message from her was " I will discuss it with ..... when she returns from leave.

I am reading all sorts of negatives into this.

As some of you are aware I had a negative TB spot which needs 3 months of treatment.I was however told I could start on biologics after 3 weeks ( I have been taking them for 5 weeks now) This was said my both my rheumatologist and more importantly the consultant at the TB clinic.

I am just stewing thinking is this going to affect funding.

Any views I have not ruled out the possibility I am being paranoid.

.

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smithfield profile image
smithfield
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10 Replies
nomoreheels profile image
nomoreheels

I know how this waiting feels smithfield, not for biologics but to hear what happens next for my h but it's hard seeing him in so much pain & unable to help & still equally frustrating, it leaves you too long with time to think & that's usually negatively isn't it? I can only say try not to read too much into it, I know it's natural but it's something you have no control over, so frustrating, I get that but what I would do, if you were told when she returns from leave, is ring that day, maybe not first thing because she won't have been updated but certainly the day she's back.

smithfield profile image
smithfield in reply to nomoreheels

Hi nmh, Yes I will call her they said she was back Monday but that is a Bank Holiday I believe.

The constant pain and tiredness does not help. I just keep thinking could whoever decides on funding overrule the consultant. But you are absoulty right I have no control over it and the negativity is wasting precious energy.

I hope your husband hears something soon, I know from what you have said he has his own health issues.x

nomoreheels profile image
nomoreheels in reply to smithfield

Sorry, I called you Wishy & I knew who I was replying to! Put it down to I was just going for a lie down & the avatars are the same colour, oh & that I'm just puddled. Yes, this coming Monday is a bank holiday but still she may still be starting back but maybe best to leave it til Tuesday.

H's Surgeon back on Friday, but his secretary says the CT scan was there in front of her so hopefully he's seen his colleague to discuss what next. Thanks though. x

smithfield profile image
smithfield in reply to nomoreheels

Finger crossed for him.x

cathie profile image
cathie in reply to smithfield

They work bank holidays here in Edinburgh so it might be worth trying

smithfield profile image
smithfield in reply to cathie

Fingers crossed it is the same here.

How is the knee.x

cathie profile image
cathie in reply to smithfield

Thanks for asking. It's more painful that first one. Physio wants me to do 15 lengths of hallway a day we'll ramp this up tomorrow I think. It's difficult getting back to normal after two years!

smithfield profile image
smithfield in reply to cathie

I am sure it is. Hallway today marathon tomorrow.xx

cathie profile image
cathie in reply to cathie

:-)

earthwitch profile image
earthwitch

It could just be the way they manage their case loads.  I had a doctor here tell me recently that ethically they weren't allowed to get involved in someone else's patient care (including reading their notes) unless specifically asked by that person to take over the care.  It was seen as a breach of patient confidentiality if they did so.   It may be that the temporary RA nurse just isn't allowed to make any decisions about your care, so you do have to wait until your regular care team are back on duty.

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