Can't believe it

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 !!

62 Replies

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

    Have a nice celebratory evening!

    Paul

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

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

  • 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

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

  • Not as good as feetyfeet tho πŸ˜€πŸ˜‚

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

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

  • 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?

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

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

  • 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).

  • I have my pompoms all ready to go

  • 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! 😁

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

  • Brilliant news A. XX

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

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

  • 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 πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»

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

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

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

  • These have alcohol ! Very nice x

  • 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.

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

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

  • Me too NeonKitty I will refuse!

  • 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?

  • So far on Tcz .

  • Neonkittie

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

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

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

  • Fingers crossed...if we could lol!

  • Me too M xxx

  • Fantastic result allanah, I am so pleased for you .

    Marie

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

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

    Marie

  • πŸ˜€πŸ˜€

  • Em remission lol😁😁

  • 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

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

  • Wow Ruth!!!!

  • 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 😊

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

    Long may it continue for you!!!

  • It's amazing !

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

  • 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

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

  • Very good news for you!

    Wishing you the best luck for the future.

    Mx

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

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

    Jan

  • Brilliant news Allanah - so pleased. Jude x

  • 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..)

  • Congrats! Fantastic news!

  • 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!

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

  • Brilliant news nice too see it works for some people take care and good luck πŸ’•πŸ’•πŸ’•

  • Brilliant news for you. Hope it continues now xx

  • 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?]

  • 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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