Anti TNF appeal...update....: moving on from my last... - NRAS

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Anti TNF appeal...update....

Mel_ profile image
Mel_
5 Replies

moving on from my last blog (moan) about my anti TNF rejection, I wrote to my consultants requesting an appeal against the decision. I listed my reasoning for the request. Got a phone call to say that I had an appointment with the senior consultant, I only get to see him once in a blue moon; which is fine as I get on with the other consultant much better. Any way the appointment was today and I got my husband to come with me (as back up!) it was discussed that my blood markers actually seem fine even though there is obvious sign of inflammation. It is nice and the primary health trust that give the guide lines on Anti TNF treatment and the consultants, obviously, have to follow these. Even if damage can be seen apparently the markers in bloods have to be high too. In order to try and start an appeal, with some sort of evidence justifying the need for Anti TNF I am being sent for an MRI of shoulders, spine, hips. So now it's a waiting came but at least it's a start.

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Mel_
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helixhelix profile image
helixhelix

Well done for perservering - keep it up! I did think that guidelines were just guidelines, so not an absolute thing. Hopefully that might mean they see sense, and you don't suffer for too long. P

susanh profile image
susanh

I have just started Cimzia a TNF drug no obvious signs of improvement yet but I am hopeful

You keep pressing the guidelines are there for a reason to help the people that really need it, and you sound that you qualify big time.

It can be daunting the injections and all the information but that's what the nurses and the doctors are there for

Keep us posted on your progress xx

julieporter profile image
julieporter

Well i suppose it's a step in the right direction - it's horrible to say but i hope your MRI can help with your appeal.Keep on at them it sounds that you could really benefit from these drugs

Let us know how you get on

Julie xx

You should be on your way now, soon as they do the MRI. Blood tests, etc can have variables affecting them, but the MRI will show everything. They can't argue with that! Good luck!

I had a whole body MRI and Nuclear Bone Scan which showed all the hot spots as bright lights on a christmas tree. It really is amazing what can be done., so I hope it all goes quickly and smoothly so you can get the right meds!

All the best, Loretxxx

Tricia-P profile image
Tricia-P

Hi Mel

sorry to hear you have not got the anti Tnf 1st try, which one were you trying for, I read something the other day about Pharmy companies will fund the A TNF if you were to agree to fill in questionaires give a bit of blood. If you speak to your dr or specialist nurse ask them if they have been approached. i will try and think where I saw the article.

I'm back on Humira weekly as its failing but I have to prove like you bloods scans etc show the markers, I have had my scans shoulders and elbows and I see my rheumy on Friday.

As always gentle hugs and keep smiling - oh! and pace your self grrrrrrrrrr

xTricia xx

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