How long might it take for anti TNFs to be approved? - NRAS

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How long might it take for anti TNFs to be approved?

Annielou profile image
9 Replies

Recent ultrasound scans have proved to my rheumatologist that my RA has worsened over the past 6-8 months in spite of my ESR levels remaining fairly normal throughout. I have been refused kenaolog injections during this time because my ESR levels were low in spite of horrible pain in my hands and feet.

I have been on methotrexate injections, hydroxy, naproxen and had several joint and kenalog injections over the past three and half years but the consultant has finally decided to put me forward for anti TNF treatment. This fills me with a mixture of both relief and dread. Does anyone have experience of how long it might take to get approval and for the treatment to start? I was given a kenalog injection yesterday to tide me over (I'm already feeling the effects thankfully) and my next appointment with the consultant is due for March.

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Annielou
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9 Replies
Trulyfedup profile image
Trulyfedup

Hi, I waited about a month before 1st appt at hospital with infusion. I am on infliximub as well as MTX...I think it was about 2 to 3 times when it all started to work...I go every eight weeks for infusion...it will be good!!!!!! Maryx

Annielou profile image
Annielou in reply toTrulyfedup

Thank you, I hope so but daren't get my hopes up - I have convinced myself I'm an awkward case, the number times I have had to pester/beg to be seen but the evidence is finally now there on the scans.

Annielou profile image
Annielou

Thank you, could be quite soon then hopefully. Humira was mentioned by the nurse but he did say I will have to wait until he has put request in etc.

francherry profile image
francherry

Hi there, they sent off the request for anti-TNF at the end of September. It was approved fairly quickly because I had the first injection in mid-November, I think about 6 weeks later.

Scottishlad profile image
Scottishlad

Normally approval for ANTI-TNF is based on your DAS 28 score and having tried dmards including methotrexate and your RA not being controlled.

nras.org.uk/about_rheumatoi...

Basically if your das28 is over 5.1 you should be eligible for anti-tnf treatment.

I had low esr so needed lots of tender/inflamed joints before I qualified. The first time I was assessed was over 4 but 3 months later I hit 5.2 and was approved.

After approval delivery of the drugs to your house and arrangements have to be made for a nurse to train you to do the injections.

I hope this helps

Cecil

Annielou profile image
Annielou in reply toScottishlad

Thank you, sounds just like me - it's annoying also that they don't count feet in the DAS score but even without my painful feet, my score was still 5.27. Are the injections different to methotrexate injections? I have had no problem with those, nor any side effects - but sadly they just don't work.

Scottishlad profile image
Scottishlad in reply toAnnielou

Can't comment methotrexate injections as I managed okay on tablets. If you are used to injecting hopefully you should be okay. My Cimzia is a tiny amount. Some people get freaked out as the plastic outer on the syringe acts like a magnifying glass making it look bigger. I like to have the syringe out of the fridge for a good 30 minutes before I inject. Some people have reported reactions I hope you are not one of them.

Cecil

Wildschonau profile image
Wildschonau

I was approved at the end of July and started my first injection of enbrel in early October. I had to have a tb test before I could start. It has been great and I am now in remission , it started to work within 24 hours.

Hi, completely understand the dread and relief....I had my first Anti TNF injection within 1 month of the decision being made.....it will be fine and hopeful as with many others you will have a fairly immediate response

P

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