LVV Relapse Update: Good news … after 2 weeks at... - PMRGCAuk

PMRGCAuk

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LVV Relapse Update

LemonZest11 profile image
14 Replies

Good news … after 2 weeks at 25mgs pred, my markers are back to “normal”, ie CRP at 2 and ESR is 8. I have had two TCZ jabs a week apart, so could this have already created the masking effect, which had waned with the 4 weekly jabs? Now to begin the taper: 20mgs for 2 weeks and then 17.5 x 2 etc. Do you think it would be OK to drop to 15mgs and skip the two weeks at 17.5? The Bactrim is making me a bit constipated so going to stop it at 20mgs, ie tomorrow.

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LemonZest11
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PMRpro profile image
PMRproAmbassador

As we always say - only one way to find out!!! But that is a good start even though you do have to wonder if it is the TCZ working already or the pred bringing it down. You're lucky it is constipation in some ways, usually it is the other way round!

LemonZest11 profile image
LemonZest11 in reply to PMRpro

Yes, I read that, but between the Bactrim and the Risedronate, something is giving my guts a work over. It takes something like food poisoning to give me the other 😂. What do you think about the taper? Go from 20 to 15, or do the 17.5?

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

Try it - you can always go back up. If it works - notably less pred.

LemonZest11 profile image
LemonZest11 in reply to PMRpro

Thanks. I'm usually compliant, but it just seems an unnecessary step on an otherwise quite conventional taper. Will go to 15 after these two 20mg weeks.

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

It is unusual for the DOC to be the reluctant one to taper - does she know something she isn't telling us?

LemonZest11 profile image
LemonZest11 in reply to PMRpro

Ok. We'll I have the CT-angiogram on Friday, but that's before the taper. Let's wait and see. You are always the VOR, voice of reason. Wise one, thank you.

PMRpro profile image
PMRproAmbassador in reply to LemonZest11

Reason appears to be my middle name - or maybe boring ...

LemonZest11 profile image
LemonZest11 in reply to PMRpro

❤️

GivenUp24 profile image
GivenUp24 in reply to PMRpro

What is TVZ?

GivenUp24 profile image
GivenUp24 in reply to GivenUp24

TCZ..

LemonZest11 profile image
LemonZest11 in reply to GivenUp24

Tocilizumab, Actemra. A biologic steroid saver.

GivenUp24 profile image
GivenUp24 in reply to LemonZest11

Ok thank you.

Exflex profile image
Exflex

Having been on the site for over four years, one thing I picked up (amongst an array of other helpful things) is to decrease at no more than 10%. In your situation I would follow the guidance. I’ve been there and done exactly that. The other tip I picked up and used is ‘the lower the dose, the slower the taper’. But I realise you’re on TCZ, and I wasn’t.

LemonZest11 profile image
LemonZest11 in reply to Exflex

10% when below 10mgs.

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