Either the Kenalog steroid injection is still working after 6 weeks (never experienced this much relief before), or the Tocilizumab kicked in straight away, or possibly a bit of both.
My joints are ok, no morning stiffness, even my eyes are a tiny bit better, still struggling with fatigue a bit, but I am not complaining. I honestly haven't felt this much relief for this long for 2 years. I even cleaned my fridge and cooker!!
I hope I am not tempting fate writing this... I hope this is the drug that gives me my life back but I am trying not to pin too much hope on it yet...
Go gently through this lovely day
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Brushwork
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So pleased to hear you are improving and hope it continues. It’s great to be able to do things again but cleaning the cooker is a bit rash! Don’t overdo it too quickly. 🙂
That is the best news. My fingers are so crossed for you. I have my first infusion on the 29th march (4 weeks clear of the second jab). They’re going to inject my knees at the same time so I can do a rapid taper of the steroid. Do you think the fatigue is a side effect ... could it be that it’s been so difficult and your body is relaxing after the onslaught of flares?
Thank you Bubblyalex, I hope the infusion and injections go well for you. I really don't know regarding the fatigue, some days I wake up feeling like I have endless energy and yet its gone by 2pm. My hope is that the fatigue will reduce as time goes on. I am keeping my fingers crossed too.
I have been on toci now for 3.5 years. I felt hugely better within the first 2-3 weeks and now 3.5 years later, I still feel better. I still over do it from time to time, then need a day or two to recover.
I love my toci! Enbrel was fabulous, but toci got me to full remission. Really happy for you. I do all the diet, sleep, etc stuff as well, but am always so sad that it took me so long to embrace biologics (though for me that only meant 3 months). My perspective is who knows what the future will bring - but why wouldn’t I try something that could help me have a better life now?
Tocilizumab was my 5th biologic in 4 years. None of the others worked for very long. I, like you had kenalog alongside. However, a word of warning- I started to get symptoms again after 8 weeks and needed another kenalog injection before tocilizumab finally kicked in (12 weeks). So don't give up too soon. Since then (4 years ago) I haven't looked back. I get minor flares (especially when work is stressful) but feel amazing. Good luck, I really hope if works for you.
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