Update, another change of biologic 😑: Hello All... - NRAS

NRAS

37,852 members46,837 posts

Update, another change of biologic 😑

Hessie5 profile image
12 Replies

Hello All,

Wanted to provide my ongoing update re my journey. It's been 2 years since diagnosis, where I had dreamt of remission.

So I visited my Rhemy today at his request, only to be told:

- inflammation has increased two fold having been on this xeljanz, tofacitinib since 5th September 2018. Things seems to have only got worse with inflammation spreading rapidly. So what was the point in having me continue with these tablet, ! My Rheumy said it should have kicked in after 7 days!

He exclaimed, I don't understand why nothing is working for you.

- yet another biologic! Sarilumab (never heard of this one, sounds too new). It's an injection I need to take every two week. It is an IL6. Is anyone taking this one? Do share your thoughts please.

I am so perturbed with RD and all this medication - is it doing more harm than good I am left thinking. I eat healthy, and seem to do all the right things only to end up worse than ever. This is so disheartening. I know I need to persevere for future longevity health wise.

As of now, off all RA medication and on a month’s worth of Prednisolene to tackle this wretched inflammation, that is going no where fast.

Hope everyone is coping well. Look after yourselves, that’s all we can do. Keep the faith. 😌

Written by
Hessie5 profile image
Hessie5
To view profiles and participate in discussions please or .
Read more about...
12 Replies
Simba1992 profile image
Simba1992

The fact that you have not been reacting to the above mentioned biologics may have to do with that they block the tnf cytokines that cause inflammation. Your new med targets the IL6 and may have a better effect. Studies have shown that IL6 are more abundent in some, especially in older people. So there is hope😊👍🏻

Hessie5 profile image
Hessie5 in reply toSimba1992

Simba you are lovely. Thanks for such a speedy response too. I guess my reservation is that it looks new. But hey ho one step at a time!

My rheumatology nurse told me that with biologics it's finding the right one that's the issue - then like her mother apparently you can be whizzing about everywhere. If of course you can get an appointment to see a rheumatologist and they get to the point quickly in the very short appointment times....

Hessie5 profile image
Hessie5 in reply to

Thanks Rachel - I am sure I shall get there. Hope you are well.

Amy65 profile image
Amy65

I think the biologic u mean is secukinumab150mg. I was on this it didn't work for me so was allowed to start Enbrel injections again these work for my joints but not my eyes they are now treated separate by my eye consultant .both my consultants rheaumtoglist and consultant communicate with each other to c what works .so hopefully u will get the right biologics it takes time to get it Wright amy

Hessie5 profile image
Hessie5 in reply toAmy65

Hi Amy. It called ’sarilumab’, it is an injection biologic. It sure is taking time, but one day it shall all click together nicely. Hope the Enbrel works out for you. 😊

Hessie5 profile image
Hessie5

Hi Amy. It called ’sarilumab’, it is an injection biologic. It sure is taking time, but one day it shall all click together nicely. Hope the Enbrel works out for you. 😊

Amy65 profile image
Amy65 in reply toHessie5

Thankyou hope u get sorted soon to and it helps u amy

Shalf profile image
Shalf

Hi Hessie, this is undoubtedly disheartening. Why, why, why!!! We try to do all the right things and the inflammation gets worse!! It's enough to make you scream!! So, 3 months on biologics and it's worse?? What a flamin shame! I've never heard of this other drug Hessie - Sorry. Xx

Hessie5 profile image
Hessie5 in reply toShalf

I think I am going to do all the things we ought not too at this rate - I mean what's the point in doing good for no good!

Rant over now Shalf .... Thanks for listening 😊 I shall press on with good faith and hope. You take care. X

Shalf profile image
Shalf in reply toHessie5

Exactly and thanks! Xx

Hessie5 profile image
Hessie5

Sorry all, not sure if anyone has experienced posts being duplicated ... I have unfortunately deleted the duplicate - sorry for anyone that commented!

Not what you're looking for?

You may also like...

Update and new biologic is TOFACITINIB

I shared with you all that I was off Baricitinib due to white blood cell count being too low. My...
Hessie5 profile image

About to start my first Biologic/Biosimilar - Amgevita

It's come to having to self inject for the first time. Frankly, I am dreading the whole thing. I'm...
Brushwork profile image

stopping biologic rather than Dmard

I was on leflunimide and my rheumatologist said I also needed a biologic as I had too many swollen...
smilelines profile image

Biologic not working after a 2 week break

Hi all, I started on Benepali in March after 2 years of non-biologic medication not working. After...
Aperson99 profile image

Biologic or not to biologic

I got diagnosed in January this year with RA. I've was prescribed MTX but unfortunately after 5...
Jaxine profile image

Moderation team

See all
Maddy-NRAS profile image
Maddy-NRASAdministrator
Nicola-NRAS profile image
Nicola-NRASAdministrator
Donagh-NRAS profile image
Donagh-NRASAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.