Announcement by NRAS! Exciting: nras.org.uk/2021/06/1... - NRAS

NRAS

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Announcement by NRAS! Exciting

Madmusiclover profile image
Madmusiclover

nras.org.uk/2021/06/10/bigg...

As someone who was so poorly I was in a wheelchair before I was ill enough to access these drugs I’m thrilled!

31 Replies

Although I wasn't in a wheelchair I was very bad before I was prescribed a biologic.Thankfully I have really benefitted from it. I'm so pleased that others will be able to access the drugs earlier, with all the benefits that it will hopefully bring for them.

Thank you for sharing xx

If I could do a jump right now I would be jumping for joy 😂

Yay

Thank you NRAS

Yay!!! About time too. Thank you NRAS.

It took 4 years to get Biologics a further 12months to find the right one . Not quite getting the DAS28 score was partly responsible if only feet were included I would have started much sooner .

helixhelix profile image
helixhelix in reply to J1707

Not sure it would have made much difference...the more joints included the more that have to be tender/swollen to score points..

In the old days of DAS 44 it included feet, but didn’t make much difference in treatment options.

Interesting. Often wondered why feet aren’t included.

Apparently assessment of DAS 28 (no feet) against DAS 44 (incl feet) showed little difference in terms of people’s treatment. Plus takes longer to do, and feet have more room for error as don’t show swelling as easily.

Every day is a school day!

SamNRAS profile image
SamNRAS in reply to J1707

Thank you J1707! If you are interested in sharing your story in a news piece please email samuel@nras.org.uk. Bw Sam

Mmrr profile image
Mmrr in reply to J1707

Issues with my feet were my presenting issue, and completely ignored by my GP and I initially my rheumatologist. My hands didn't join the show for nearly a year. So many missed opportunities.

Fantastic news 👏

This is great news & thanks nras 😊 x

Thank you Madmusiclover! If you are interested in sharing your story in a news piece please email samuel@nras.org.uk. I hope you are feeling much better now. Bw Sam

I’ve been well for a good 18 months thanks but a miserable 5 years before that.

Great news.... I never manage to score over 5.1 as have naturally low ESR/CRP so was always something like 4.9. Soon after I arrived in France the rheumy wanted to swap me over as they make the decision on their judgement. When i did swap it made a huge difference!

Yes I’m not altogether sure it’s a hard and fast rule in Scotland. Maybe somebody knows….

This is fantastic news! Well done NRAS on your amazing work. This will be life changing for so many people. I have recently qualified in the last three months for biologics but had to qualify with DAS scores of 5.11 and 6.9. My disease activity became much worse in April 2020 and was finally approved for biologics in March 2021.

Thanks so much madmusiclover for sharing this amazing news with us all. Fingers crossed that access to biologics will be available for so many more people. x

Thank you for sharing Madmusiclover and thank you NRAS👏

👏🏾👏🏾

Wonderful news! Many, many thanks to NRAS and all those involved in making this happen

Certainly is good news! I've been reviewed and denied twice for biologic, "didn't qualify ", yet I'm on max meds for RA, go figure lol.

I am due a phone call this morning to discuss starting a biologic. My symptoms have not been under control but I still feel a little nervous of starting a new treatment. I just want to stop the pain and get back to doing some of the things I love.

Go for it it will change your life❤️

Pasjc profile image
Pasjc in reply to Gilliancheche

You won't be sorry be patient it won't happen overnight but they are such wonderful drugs xxx

I’m on triple therapy, but the baricitinib has made the difference So pleased I’m on it too

Now on my 7th biologic with no improvement. Sad thing is, I first went on Enbrel about 4 years ago and the improvement in both pain and inflammation was incredible within a couple of weeks. Then after 3 months I got switched to the biosimilar Benepali and went backwards within a month to worse than I was before. Steadily got worse ever since. Has anyone else had issues when switching to biosimilar variants?

Noodles43 profile image
Noodles43 in reply to Philjania

I had the same thing, was fantastic on Enbrel but got switched to Benepali to save money and went rapidly downhill, I’m now on Cosentyx and it’s good but I get frequent bouts of oral thrush 😕

I had to wait too long for biologics, just teetering on the edge of qualifying but apparently not quite suffering enough for at least a year 🤬.

Biologics have since given me back my life. This is fantastic news for anyone in the same position or who is newly diagnosed …. Hooray 😁

I seemed to have slipped through the net as far as treatment and I'm in constant pain, increasingly affecting my mobility and way of life, so this gives me hope. Thank you NRAS x

Great news I hope that Scotland will take a similar approach.

My consultant reduced my medication for 3 months to get get me to over the line. She reckoned that I would do well on a biologic therapy and she was right.

While my joints still clearly showed signs of active disease while on triple therapy my blood tests when plugged into the DAS 28 gave a score of 4.9. She told me at that time in Scandinavia the level was 3.2.

This will make such a significant difference to so many lives. Unfortunately I was one of those who had to deteriorate over a number of years in extreme pain Eventually having a shoulder replacement.

Now on baricitinib I wake up without trepidation and can get out of bed, unaided walk on grass again and feel human.

Please thank those who work so hard on our behalf- the silent quietly crumbling community ❤️

Thanks xx

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