Flare or Anxiety attack

[Eileanach]

Been tapering Prednisolone with Tocilizumab for PMR and GCA for three months. Got down to 8mg but suffered two infections and ended up in hospital for IV antibiotics. Home after four days on oral antibiotics. Tocilizumab injection stopped in meantime. Four injections missed. Now feeling as though the GCA is flaring, no serious pain just a strange sensation in my temples. Still feeling rotten after infections so not sure if this is a flare or just anxiety because injections have stopped. Impossible to get appointment with GP. Wondering if anyone else has had similar experience?

[SnazzyD]

Hello, I can’t see when you were diagnosed in your bio and how your GCA was diagnosed and what your symptoms were.

Can you described the sensations in more detail and when it happens and if anything makes it better or worse?

[Eileanach in reply to SnazzyD]

Diagnosed in November 2022 by ultrasound scan. Had already been diagnosed with PMR. Started on 60mg prednisolone immediately. Symptoms were pain in temple area and pain in jaw. Usual painkillers like paracetamol don’t seem to help. All seemed fine until I got my infection and Tocilizumab stopped. When I was admitted to hospital the doctor mentioned following sick day rules for steroids but didn’t really explain and nothing changed.

[SnazzyD in reply to Eileanach]

To have got to 8mg in 6/7mg months is very fast; I took 18m or so (without TCZ) and that was without complications. As PMRPro says, TCZ can take a while but it isn’t always the big solution. There are a number of inflammatory mediators and TCZ deals with just one of them, Interleukin-6. Whilst this is the one that has usually been found to be holding the smoking gun in GCA, there may be other ones at play. If this is the case, the Pred being a generalist clears those up. Another reason for 0.5mg drops as it helps distinguish between flares and withdrawal symptoms. I was offered TCZ “when” my tapering failed. Due to troubles with getting appointments I was left to my own devices for months and reduced slowly enough for me and managed without problems, but not before one doctor, a harbinger of doom, foretold dire consequences but so still refused to go his speed. He couldn’t not prescribe the Pred as that would be dangerous. Although it might be fanciful I felt something shift when I was on 15mg some 8 months after diagnosis and then again at 18 months (I think). Prior to that GCA never felt far away.

From 8mg I reduced 0.5mg every 6-14 weeks because the lower I got the slower I got. This was because of the need to adrenal function to be re-established and TCZ has no role to play there.

It would help enormously if you can put your extra info in the bio for next time so you don’t have to repeat yourself.

[PMRpro Ambassador]

What dose were you on when you started TCZ? Your tapering seems to me to be rather fast - my rheumy told me to give it up to 2 months before even trying to reduce the dose.

[Eileanach in reply to PMRpro]

Was on 35mg.

[PMRpro Ambassador in reply to Eileanach]

Then I would consider you have reduced far too quickly. Too many rheumies think that TCZ works instantly - it doesn't and can take a few months and sometimes more. My rheumy - who is regarded as a world expert in the field and has participated in a few clinical studies with TCZ in both GCA and PMR - insisted not only on a wait before starting to taper but also a slow approach. I did get to 6mg a few months ago but it didn't feel right, I went back to 9mg and tapered again and this time it's fine at 6mg. I have PMR and have been on TCZ for well over a year now. It still takes time.

In the original clinical trials, only half of GCA patients were able to get off pred altogether. GCA has at least 3 mechanisms underlying the inflammation and only 1 of them is dealt with by TCZ, biologics are very specific in their action. If they are part of your GCA, you may require 8-10mg pred despite the TCZ. TCZ is not always the entire answer.

[Sharitone]

I've had a similar experience - missed 8 out of 10 injections, and every little headache was a bit scary! But so far, so good. However, you haven't had TCZ very long, and after 3 months I had only reduced by 4mg. So if you are unsure, is there not a rheumatology helpline that you can call?

[Eileanach in reply to Sharitone]

My rheumatologist is on holiday but back tomorrow so hopefully be able to speak to him then.