LVV Does a flare come on suddenly?

[Devoid]

Hi I have been doing really well down to3mg pred and weekly tocilizumab. Felt fine until midday today, I was bending over and suddenly felt nauseous, stood up and nausea subsided but pain / numbness in left side of face and crawling sensation under scalp. I took 40 mg of pred when it was still the same after 1 hour

[PMRpro Ambassador]

I suppose the tipping point as inflammation builds up can be sudden...

[SheffieldJane]

That is the difficulty I am having. I understand Pred and it’s symptoms. Tocilizumab seems less logical and quite weird at times. My inclination would be to stop tapering Pred and seek medical advice on these symptoms. The drug is only 3 years old in our world. The positive side is, it really helps us to get off steroids.

[Devoid in reply to SheffieldJane]

I’ve not been tapering since discontinuing methotrexate as the rheumatology team definitely wanted me to continue with it and come off pred . Due to how ill and incapacitated I was on methotrexate I refused to continue and the plan was to stay on 3 mg of pred until my next consultation in November. I rang my GP today and he agreed that taking 40 was the right thing to do , but was unable to get hold of a consultant today, the plan is to take 40 again tomorrow and contact consultant. And contact a and e if any problem overnight

[SheffieldJane in reply to Devoid]

I am glad they confirmed that your instincts were right. I would have felt quite challenged by your symptoms and deciding what dose to increase to. Those really are GCA symptoms aren’t they? Please let us know what happens next and good luck with this. I never read anything that made me want to agree to Methotrexate, unlike Tocilizumab, which seems to do what it says on the jar for me, but it’s early days. ( around 4 months) 10 mgs Pred and weekly Tocilizumab injections.

[Devoid in reply to SheffieldJane]

Thanks Jane, it’s so good to have this for support, it frightened me as much as anything and unfortunately just felt so familiar to how it started. I have had a good nights sleep, which surprised me as on high dose pred I was literally awake day and night. And feeling fine so far , now to try and speak to the consultant as if I feel okay not sure about what to take today. Just hope he doesn’t want to lecture about methotrexate as I am not prepared to feel like I did for months on that . Will let you know how I get on , tocilizumab has been a game changer for me , but I’ve always had this concern on how they can monitor any inflammation whilst you are taking it, and so far nothing I have read answers that question

[PMRpro Ambassador in reply to Devoid]

Prof Mackie says "symptoms". Which isn't a bad thing - by definition, no symptoms is what you are aiming for whether it is with tcz or with pred. When you are taking tcz and pred in parallel at the start then any return of symptoms has been taken as a sign of stopping reducing for the time being.

[Devoid in reply to PMRpro]

Hi sorry not sure what you mean by that last bit ?

[PMRpro Ambassador in reply to Devoid]

Which bit? Monitoring of tcz must be with symptoms. But GCA can be caused by 3 different mechanisms, tcz deals with the main and most common one but not the other 2. If your personal version of GCA involves either of these other two you will continue to need some pred. Being on tcz doesn't guarantee you will get off pred entirely - just that you will need a much much lower dose. And the only way you find out is when symptoms return.

[Devoid in reply to PMRpro]

Oh I’ve re read it and I see what you mean, I am happy to stay at 3 mg at the moment, I have occasionally perhaps once a week done 2 , but I had done 2 on Saturday then this all came on yesterday so perhaps 5 over 2 days just doesn’t do it , Won’t do it again or will try at beginning of week when I’ve had tocilizumab. Haven’t heard anything from consultant so considering what to take today, also having a quiet day, think I was beginning to think it was all done and dusted, which is obviously not the case 😩

[PMRpro Ambassador in reply to Devoid]

tcz doesn't get the adrenal function up and running any faster so that is also a consideration. How long you have been on pred also is a factor there - the longer it has been the more "steroid withdrawal" will figure too.