Stiffness/sore muscles: I have been off... - PMRGCAuk

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Stiffness/sore muscles

LemonZest11 profile image
21 Replies

I have been off prednisolone for 60 weeks now, and on TCX for 4 years, but on 4 weekly jabs for 40 weeks. That fourth week before the jab I usually experience a bit of fatigue, headache and sore muscles, which seem to go once I have that jab. This is that 4th week and I have been taking ibuprofen 2 x 200mgs in the morning and it works!! I haven’t needed to take any more, although by bed time I’m feeling the muscles again. So the last two nights I took the ibuprofen quite late, before bed, and woke with no muscle stiffness. I’m wondering, gurus, could this be something else to do with IL6, which can be alleviated by ibuprofen? I have been physical, in the garden etc., but I’m always like that and I only feel it in the week before the TCZ jab, which restores me once again. 🤷‍♀️

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LemonZest11
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PMRpro profile image
PMRproAmbassador

Now you're asking!!!!!

PMRpro profile image
PMRproAmbassador in reply toPMRpro

Try this for size to start with

pubmed.ncbi.nlm.nih.gov/338....

LemonZest11 profile image
LemonZest11 in reply toPMRpro

I KNEW you’d know. So it looks like good news. So TCZ is keeping what under control? PMR? LVV? Or is it fulfilling the role of placating my older muscles?

LemonZest11 profile image
LemonZest11 in reply toPMRpro

What I’m asking is, does IL6 play a role in “normal” muscle soreness in older people after exercise? Not huge exercise, but walking, pruning, lifting logs, you know, keeping yourself busy? And does TCZ help with this? If so, we should all be on it!!!

PMRpro profile image
PMRproAmbassador in reply toLemonZest11

It sounds like it from that paper doesn't it? Must read it more closely. Bit pricey compared with ibuprofen though

But you are doing so well!

LemonZest11 profile image
LemonZest11 in reply toPMRpro

It does. I will see what info I can find, but yes, a pricey tonic. My point was more about taking a risk and seeing if 2 x 200mg ibuprofen each day might replace the job of TCZ, that's if the ugly sisters have gone into remission, but I'm always wary. We're heading to Greece in 3 weeks so I'll leave experimentation till I return. I'll be seeing my lovely Rheumy's replacement the week we get back so perhaps I'll run it by her. Food for thought. You know how cautious I am. You are also doing well!!

PMRpro profile image
PMRproAmbassador in reply toLemonZest11

How is the new rheumy or will that be the first time? Hope the weather in greece improves by the time you get there - the Med has been a bit disgusting recently!

LemonZest11 profile image
LemonZest11 in reply toPMRpro

It will be the first time. She's much younger but I have more confidence in myself and in my previous Rheumatologist's notes, which probably read, "this one is trouble!". Disgusting weather? Hey, I live in the land Downunder!! Droughts and flooding rains!! 💪

PMRpro profile image
PMRproAmbassador in reply toLemonZest11

Sounds like here ,,,

PMRpro profile image
PMRproAmbassador in reply toPMRpro

Except there was snow in sight overnight!

LemonZest11 profile image
LemonZest11 in reply toPMRpro

Four seasons in one day??? East coast of Australia, we're I'm from. We live on the west coast ... hottest summer on record. In the last 3 days, we're all complaining about the cold. Mind you, it was 24C today 🥶 😂

PMRpro profile image
PMRproAmbassador in reply toLemonZest11

Monday last week I sat on the balcony because it was sunny and about 18C I think. The Sunday had been 26C. Since then it hasn't made it into double figures and next to no sun to take the edge off. There are snowflakes all over the forecast for today. Next Monday is supposed to be mid-20s again after Sunday just manages to be average for the time of year so the rest of the week here is still cool. Even Lake Garda is barely into double figures today.

LemonZest11 profile image
LemonZest11 in reply toPMRpro

Sounds like Oz, but at least you're heading into warmer times. Snowflakes sound lovely.

PMRpro profile image
PMRproAmbassador in reply toLemonZest11

Not at the end of April they aren't!!!!!

LemonZest11 profile image
LemonZest11 in reply toPMRpro

Haha 🥶 ❄️

OilyWiggles profile image
OilyWiggles

What is TCX/TCZ?

LemonZest11 profile image
LemonZest11 in reply toOilyWiggles

Tocilizumab. Sold as Actemra. A biologic steroid sparer for those with troublesome GCA/LVV.

OilyWiggles profile image
OilyWiggles in reply toLemonZest11

Thanks, I know about Tocilizumab (I work in cancer trials), but never seen it abbreviated like that,

PMRpro profile image
PMRproAmbassador in reply toOilyWiggles

The number of times we write it we need an abbreviation - and TCZ is the usual abbreviation used in papers about it

pubmed.ncbi.nlm.nih.gov/376...

is just one example. Maybe you just haven't read enough papers. Google "TCZ in PMR" and see how many appear with TCZ used as the abbreviation.

OilyWiggles profile image
OilyWiggles in reply toPMRpro

No that's true. I've seen the drug in the fridge but haven't read any related papers!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toOilyWiggles

See this - healthunlocked.com/pmrgcauk...

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