Can't believe it: Just in from seeing the Rheumy and... - NRAS

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Can't believe it

allanah profile image
62 Replies

Just in from seeing the Rheumy and after 6 years of various combinations my inflammation levels are right down

It seems Tocizilumab, hydrochloquine and leflunomide is the combination for me. I'm so delighted !!!!!

He says he's gonna use my inflammation chart as a teaching aid ! It starts so high and then the line just drops!

Gotta stay on my steroids tho too, but he knows my particular type of RA best .

Good news eh !!

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allanah profile image
allanah
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62 Replies
SoulmanPaul profile image
SoulmanPaul

Congatulations Allanah! Fingers crossed I don't have to wait another 4 yrs myself.

Have a nice celebratory evening!

Paul

allanah profile image
allanah in reply to SoulmanPaul

Well pleased Paul ..apart from having a bleeding septic fingefinger. Possibly getting it drained tomorrow sods law!

SoulmanPaul profile image
SoulmanPaul in reply to allanah

I think you just invented a new word! :-)

allanah profile image
allanah in reply to SoulmanPaul

Aw jeez! You will learn to guess my typos! I have fibromas on my fingers which make it difficult! Some of them r quite funny tho

SoulmanPaul profile image
SoulmanPaul in reply to allanah

Understood. For what it's worth I think fingefingers a great word! :-)

allanah profile image
allanah in reply to SoulmanPaul

Not as good as feetyfeet tho 😀😂

SoulmanPaul profile image
SoulmanPaul in reply to allanah

Lol! It looks like you've got your very own dictionary :-)

Mandy8175 profile image
Mandy8175

Congratulations! Even though I can't remember being a part of it, welcome back to the land of the living!!!!!

ITYFIALMCTT profile image
ITYFIALMCTT

You and that combination of medications plus your rheumy team can finally take a victory lap :)

I hope that this is more than just a blood test result and that you actually feel better for the reduction in your inflammation levels?

allanah profile image
allanah in reply to ITYFIALMCTT

Joints still have problems mainly due to being so inflamed for 6 years but yes I do FEEL a lot better I myself!

nomoreheels profile image
nomoreheels

Yay! Go A, go A. Star autoimmuner of the month. I think we should do that, what do you think inaugural winner?! x

allanah profile image
allanah in reply to nomoreheels

I would like to thank my parents , my Rheumy etc etc ...lol !

Sobbing whilst holding the trophy !!( whilst not using my septic finger ha ha).

Gnarli profile image
Gnarli in reply to nomoreheels

I have my pompoms all ready to go

Neonkittie17 profile image
Neonkittie17

Excellent .. It feels so good when you finally get the right med or combi to get rid of the inflammation. Mine has done very much the same as yours on Rituximab but I'm not on steroids. Keep smiling! 😁

allanah profile image
allanah in reply to Neonkittie17

It was lovely news. Now to keep it that way ...

Chappy1 profile image
Chappy1

Brilliant news A. XX

allanah profile image
allanah in reply to Chappy1

Isnt it. Been a bit of a long haul for us C!

Whoop Whoop!! I'm doing the happy dance for you!!!

allanah profile image
allanah in reply to

Might get back to dancing soon. Lol x

Absolutely fantastic! It took my team 14 years but they did have to wait for Rituximab to be invented

Whoop whoop! So pleased for you Allanah. Long may it continue 🙏🏻🙏🏻🙏🏻🙏🏻

Will have a cheeky G&T in your honour tomorrow!!!

allanah profile image
allanah in reply to

Go Aldi they have gin and tonic lollies ...they are amazing!

in reply to allanah

Do they? I've just ordered some cider lollies earlier. No cider in them it's apple juice!

allanah profile image
allanah in reply to

These have alcohol ! Very nice x

Neonkittie17 profile image
Neonkittie17 in reply to

Yes .. I'm all for a success story and someone feeling good..

Wish I had had Rituximab years ago and I would not have so much joint damage but glad to have it now since 2014. It's taken similar time to get me sorted as I was stable on another oral med for ten years then it lost its efficacy. However feeling anxious about the Biosimilar.

allanah profile image
allanah in reply to Neonkittie17

So I'm not the only one with new words tonight !

Neonkittie17 profile image
Neonkittie17 in reply to allanah

Sorry I amended it but it didn't update! It's a long thumb nail which needs cutting! 😁

in reply to Neonkittie17

Me too NeonKitty I will refuse!

Neonkittie17 profile image
Neonkittie17 in reply to

Have you told them yet Kiki? I responded to the standard letter and info booklet I was sent (not much use to be honest) and phoned and spoke to an admin girl who was taking details but she wasn't too knowledgeable, to say I didn't want to change) and will take a letter to my consultant next month. My next infusions are end of Feb/March so time to sort it I hope.)

Are you able to stay on your original med, Allanah?

allanah profile image
allanah in reply to Neonkittie17

So far on Tcz .

in reply to Neonkittie17

Neonkittie

I havnt had anything from the hospital yet and not due until Feb like you.

Neonkittie17 profile image
Neonkittie17 in reply to

Hi Kiki, I hope all goes well for you too. x

Matilda_1922 profile image
Matilda_1922

I'm so pleased for you. Hope it stays that way.

allanah profile image
allanah in reply to Matilda_1922

Fingers crossed...if we could lol!

allanah profile image
allanah in reply to Matilda_1922

Me too M xxx

Eiram50 profile image
Eiram50

Fantastic result allanah, I am so pleased for you .

Marie

allanah profile image
allanah in reply to Eiram50

Cheers Marie xxx not quite in recession but you never know !!

Eiram50 profile image
Eiram50 in reply to allanah

It’s a great place to move forward from though, isn’t it? I hope things continue so positively for you.

Marie

allanah profile image
allanah in reply to Eiram50

😀😀

allanah profile image
allanah in reply to allanah

Em remission lol😁😁

sylvi profile image
sylvi

Thats good news darling you needed some good news. Sorry you have to stay on the steroids,but it is working for you darling.xxxxxx

ruth_p profile image
ruth_p

That is great news! My CRP went from 179 to 0.6 after starting tocilizumab two years ago. 😊

in reply to ruth_p

Wow Ruth!!!!

ruth_p profile image
ruth_p in reply to

It literally started working 24 hours after my first injection. I had been on Humira previously but it had stopped working altogether and the mtx didn’t seem to be doing anything. The drop in CRP happened in the space of a month. I think I was very lucky 😊

in reply to ruth_p

You sure were Ruth. This happened to a friend with PsA when she went on Humira.

Long may it continue for you!!!

allanah profile image
allanah in reply to ruth_p

It's amazing !

cmtog profile image
cmtog

So glad for you Allanah. Enjoy the relief. Best wishes

Someonesmother profile image
Someonesmother

Yay what wonderful news. Hope you are feeling a lot more like a part of the human race now that your inflammation levels are down. So pleased for you

stbernhard profile image
stbernhard

Delighted for you Allanah. It wasn't long after I found the right combination, I was in remission. I hope you will be too. :)

Mandalou profile image
Mandalou

Very good news for you!

Wishing you the best luck for the future.

Mx

Riedenise profile image
Riedenise

This is great news! I'm really pleased for you lovely. Xx

Gnarli profile image
Gnarli

Oh wow! Brilliant fabulous news! I'm so thrilled for you and long may it continue. Hugs

Jan

Judetheobscure profile image
Judetheobscure

Brilliant news Allanah - so pleased. Jude x

allanah profile image
allanah

Here's a usual one you can believe. 7 am a and e . Finger drained cut and washed out pus . Iv antibiotics and a week of antibiotics. No swimming in my holiday doh!!!

Wonderful Allanah! Nothing like remission to make you feel like the old person you used to be (at least mostly..)

Hobbits profile image
Hobbits

Congrats! Fantastic news!

hatshepsut profile image
hatshepsut

Soooooo pleased for you Allanah, shows that toci can work for some people....just didn't work out for me!! You deserve it, it's been a long hard road for you. Onward to remission! Mavis xx

Excellent. Many congrats and long may it continue!

allanah profile image
allanah in reply to

So I had had enough now! when I got ill on my ritux..glad they tried Tcz !

DC56 profile image
DC56

Brilliant news nice too see it works for some people take care and good luck 💕💕💕

moomie profile image
moomie

Brilliant news for you. Hope it continues now xx

GranAmie profile image
GranAmie

Congrats -great news, so glad for you. long may it last. just wondering - how do they know if joint damage there - can they do printouts from hand held scanners. i think i have improved and meds reduced, via diet n exercise but still stiff esp mornings and diff to write, sew etc n ankles still swell [tho that no longer counts in DAS scores?]

allanah profile image
allanah in reply to GranAmie

So far only done blood tests but mine are normally so high it was amazing they have come down. Yr I still have lots of leg hip shoulder pain but I think my Rheumy only xrays every few years.

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