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

NRAS
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Update, another change of biologic 😑

Hessie5
Hessie5
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. 😌

12 Replies
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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😊👍🏻

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Hessie5
Hessie5
in reply to Simba1992

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!

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LancashireRachel

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....

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Hessie5

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

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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

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Hessie5
Hessie5
in reply to Amy65

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. 😊

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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. 😊

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Amy65
Amy65
in reply to Hessie5

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

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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

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Hessie5
Hessie5
in reply to Shalf

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

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Shalf
Shalf
in reply to Hessie5

Exactly and thanks! Xx

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Hessie5

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

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