Tocilizumab - looks like it is working

[Chezis21]

Had first infusion last Thursday, this was after having Rituximab late Feb then early March.

On Friday I helped my daughter move into her own flat, hauled boxes, went up and down stairs, Saturday went out for a lovely lunch with son and a drive down the stunning Ayrshire coast.

Sunday went north to the Highlands of Scotland with my friend, left home at 9.30am got home at 9.30pm walked around the Highland town of Pitlochry then headed for the Queens view where I took this stunning photo of Loch Tummel ,walked uphill to get there then drove home via Loch Lomond.

Today I have been food shopping, and spent 30 mins in garden.

I was diagnosed 2 years ago with RA and last year and first 4 mths of this year my life was on hold, I was virtually housebound, could not drive, barely managed to dress myself and suffering pain off the scale some days - many of you know the feeling - could not even open a bottle or a tin of tuna and so forth.

I have an absoultely great team at my local hospital, could not wish for better. the care is outstanding.

For all of you out there suffering - which is most if not all, then take heart.

My life is turned round. Long may it continue.

Chez x

[cathie]

That's lovely and great to have a positive story. We're off to Loch Broom (further north than Tummel) next week after a rituximab infusion. Cant wait.

[cathie]

Can you clarify for fellow suffers. Are you having rituximab and tocilizimab together? Unclear from your message.

[Chezis21 in reply to cathie]

Hi Cathie,

Loch Broom - love it up there and further up too!

I had second lot of Rituximab but I responded to it marginally, first infusions were last Sept/Oct and I got little or no relief. Had agreed with consultant to give it another go but after 9 weeks which took me to beginning of May we agreed it was not helping they way he had hoped.

I am now having 4 weekly infusions of Tocilizumab - no more Retuximab. Hope it keeps doing the job for you.

Hope that clarifies things.

How is your new knee?

chez x

[cathie in reply to Chezis21]

It sounds as though your Rheumy has their eye on the ball! I'm glad it helps.

I'm waiting for the second dose of the third cycle of rituximab. The new knees are doing ok, or would be if my RA was more under control. I am walking further than before but have inflammation in foot and am valiantly waggling it to help!

After next dose were off to our wee hoose by loch broom for the long days! There's even a sea eagle with chicks there.

[Chezis21 in reply to cathie]

sounds idilic, I've got a highland coo named Broome after the loch, he's not real bought him in a gift shop in Ulapool.

So is the Rituximab working?

Keep wagging the foot works wonders, have done a fair bit of that with my right foot, went over on my ankle very hard back in 2006 and it is weak.

xx

[cathie]

Say hello to the coo!

Rituximabs keeping me going but the last dose wasearly September and so it's got quite a lot to do!

[Caspiana]

Hello Chez. That picture took my breath away. 😊 I am so glad things are going well for you. It's pretty amazing that you did all that and feel good! I am so pleased for you.

*hugs* 🌸

Cas xx

[Chezis21]

Hello Cas,

Thanks, it was and still is great weather here, blue skys and temps in the 20s. Took loads more but did not want to be a bore

Since Sunday I have been in work for half a day, spent 2hrs weeding and clearing out in my garden and today spending time with a friend at her house socialising with a a wee glass of wine - not too much as need to watch liver due to MXT.

Cheers!

Chez

[charisma]

How incredibly good that you can do all that! Still in my dreams… I still have to pace myself anc avoid overdoing things although only managing a fraction of ‘full life’ activities. And I have deformities in my hands and feet after four plus years of trying different drugs.Rituximab finally gave me huge relief from constant severe pain, and some life back. But that took infusions from Dec 2019 to Feb 2021.

I’m sure you are thoroughly enjoying life right now, and deservedly so. Pic is so beautiful. Long May your freedom continue. xx