Latest report …: Hello, just reporting the latest... - PMRGCAuk

PMRGCAuk

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Latest report …

LemonZest11 profile image
6 Replies

Hello, just reporting the latest which is a bit disappointing. I am down to .5mgs pred, have been on that for a couple of weeks. My Rheumatologist has extended my TCZ jabs out to 4 weeks. I received my blood tests today, taken just before the first 4weekly TCZ jab. These blood tests are all about checking my white blood cells before the jab, but they were great, it was the extra week to 4 weeks that seems to have impacted on my inflammation. My CRP has increased to 14. I’m still feeling well, did a long walk today delivering flyers for my local politician. I returned from that feeling quite stiff, but not sore. I am thinking that the TCZ being stretched out to 4 weeks might be the reason. This suggests that I am not out of the woods. It’s a bit of a bugger really. Over to you friends …

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LemonZest11
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Rugger profile image
Rugger

Sorry to hear that the longer interval between TCZ doses seems to have allowed the inflammation to kick in. I suppose 0.5mg pred isn't enough to handle that either.

What does your Rheumatologist say?

I'm tapering from 5mg to 4mg pred and back on weekly TCZ, having been on fortnightly doses for a while to eke out my allocation, which has now been extended to March 2022.

It is a proper carry on, isn't it! We'll get there one day, all being well.....

SheffieldJane profile image
SheffieldJane

It’s clearly a stretch too far. I heard this before from someone else. It is a shame they are guided by money rather than what is actually best for the patient. 3 weekly intervals might be ok. Even a slight cold could have impacted on your blood test results. Hang on to the fact that you feel good LemonZest11. 🍋

LemonZest11 profile image
LemonZest11 in reply toSheffieldJane

Thanks Jane, I think so. I’m wondering if I need to adjust, as we do when we taper the pred. I’ll give it another 4 week stretch and see. I have the bloods done just before the jab, so I’ll get a pretty good idea from that 🤞. Thanks for your endless positivity 😘

SheffieldJane profile image
SheffieldJane

My husband would beg to differ I fear. 😉

LemonZest11 profile image
LemonZest11 in reply toSheffieldJane

Ha, introduce him to me!! He knows. ❤

SheffieldJane profile image
SheffieldJane

😘

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