Wrist is swelling again, an ache in my right eye (sjo... - NRAS

NRAS

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Wrist is swelling again, an ache in my right eye (sjogrens, I think)...

Brushwork profile image
Brushwork

It is early days on Tocilizumab though, only 4 doses in. On the plus side; morning stiffness hasn't returned.

Naproxen today... it will help my eye.

It's a gorgeous looking first morning of British summer time here on the Moray coast.

Go gently through the day

20 Replies

🤞🏻 it’s a temporary blip 💕 I start it tomorrow ...

Brushwork profile image
Brushwork in reply to bubblyalex

Good luck. I haven't had any nasty reactions to it, or notable side effects... hope it goes well.

bubblyalex profile image
bubblyalex in reply to Brushwork

Thank you. Super crossed the fingers are and for you too 🥰

Good luck ba, hope it works and works well for you. xx

🥰 very hopeful I am. Thank you springcross. I’ll hopefully be around more again too. 🤞🏻 keep well 💕

You too ba. xx

I hope it settles down soon Brushwork. x

Hopefully just a wee minor set back 🤞 and things settle for you.

I really hope it is a blip and your meds start to work their magic for you. x

Great news thinks are starting to improve in mornings but dont ignore a sore eye .If it gets red or vision is worse or its painful get checked asap.

Been on toci for 3+ years now. It is the only Med that has worked for me. It has made me retain water for the first 2 years so I took furosemide for 3 days after each infusion. I no longer need to take the furosemide. Feel much better as a result of the toci. I still have morning stiffness, I think it is because my bed needs to be replaced.

Cheers

I will stick with it. It does seem to help and it is early days. I am self injecting with a pen, my nearest rheumy dept is 2 hours away, so infusions would be a pain. Fingers crossed that it will all settle down.

Thank you

I have heard from some of my rheumy's other patients that they did not get the same relief with subcutaneous self inject as they now do with the Infusion. 5 hour return trip to have a 1 hour infusion is a bit excessive I do agree. Is there a medical office near where you are that could do the Infusion for you?

I guess I will have to give it time and then have a discussion if things don't improve. I am still crossing my fingers.

Maggsie profile image
Maggsie in reply to dwsurquhart

How interesting about the water retention, I'm having the same issue but never really connected it with the tcz. I'll need to speak to my rheumy nurse.

Beautiful there. I have family in Elgin. They own the Sunninghill hotel.

Brushwork profile image
Brushwork in reply to Sarahg62

I do love this area. The weather is mild and the views are stunning. I see the Aurora, dolphins and whales, deer and red squirrels regularly. It's just wonderful. I wake up to a view across the firth to the mountains of the highlands. My dream retirement home...

It took 4 months of weekly injections to work for me but wow does it work.

Today I took my 12th monthly infusion of TCZ (450mg) and my rheumy says I am on remission, it took like 4 to 5 months to feel the difference, my CRP dropped from 80 to 4. I felt really lousy by the second month on TCZ, like you, my left wrist was hurting so bad I couldn't sleep properly. I totally recommend it, TCZ was the life changing treatment for me! I don't even need prednisone anymore, just the monthly infusion. No side effects.

I hope improvements continue. Saturday was beautiful down in Dumfries & Galloway but Sunday much less so; windy and wild and wet. I am in contact with a few folks up there eg Portsoy, Gardenstiwn and Cullen. Must visit when I’m fully recovered; Dundee first though, my youngest has lived there since Uni days. 💐

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