A question please …

[LemonZest11]

Since having a mini setback after getting to .5mg pred and pushing TCZ out to four weeks, I appear to be back on track. I went to 4mgs for 1 week, 3mgs and now I have been on 2mgs for 2 weeks. TCZ has been fortnightly for a month and my blood tests have stabilised. My next dilemma and therefor my question is, should I stay at 2mgs in the hope that it can be a maintenance dose for the future, and continue to push out the TCZ, or should I do what I think my doctor is going to suggest next week, continue to taper and try another drug such as leflunamide or methotrexate? I have sixteen doses of TCZ which, at 3 weekly jabs, should last quite some time, even longer if I try pushing them out further. What to do?

[DorsetLady PMRGCAuk volunteer]

Glad to hear you’ve settled things down after your blip.

Personally I wouldn’t be in any hurry to reduce from 2mg, nor add in another drug whilst you still are on TCZ…..continue as you are and see how things go over the next few months.

[LemonZest11 in reply to DorsetLady]

Yes, thanks, I agree. She doesn’t want to add in another drug while on TCZ, she is planning to stop TCZ and try something else. But I just feel like seeing how it goes.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Why is she stopping TCZ?

In UK it’s usually only authorised on an annual basis, and then has to be reconsidered for extension - is that the same in Australia?

One would hope that at such a low dose of steroids it wouldn’t be necessary to add in another drug, but it all depends on activity of your GCA.

So a bit of wait and see what happens once you come off TCZ, but guess you need to be aware of options.

[LemonZest11 in reply to DorsetLady]

Yes, and she thinks that I won’t be able to get another script. I think she’s planning for the future. I think I went too low with the pred, rather than the distance between TCZ jabs. I would be very happy if I could just remain on 2mgs pred, even forever!

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Well hopefully it won’t be forever, but as has been quoted on here a few times, Prof Dasgupta does keep some of his patients at 2.5mg for long periods, sometimes indefinitely - so it’s certainly not unheard of.

But most with GCA do seem to get off steroids completely in time.

….so don’t give up hope.

[LemonZest11 in reply to DorsetLady]

Thanks DorsetLady.

[Exflex in reply to DorsetLady]

Yes I’ve heard about Prof Dasgupta and 2.5mg, many times in fact. Only now have I stopped to think what this is doing to the HPA axis and the output of cortisol. It seems 7.5mg of prednisolone is referred to as the physiological dose, being equivalent to approx 30mg of cortisol. In proportion therefore 2.5mg of Pred is roughly equivalent to 10mg of cortisol, roughly 1/3 of ones daily need for the ups and downs in a 24hr period. Wouldn’t it be better to allow / encourage the adrenal glands to fully recover and perform the same function as a taking supplementary prednisolone? (As usual I could be completely off the mark here).

[PMRpro Ambassador in reply to Exflex]

At 2.5mg pred, providing it is taken as early as possible after midnight in the 24 hours, there is enough stimulation of the HPA axis for it to start the complex feedback process that produces endogenous cortisol in the morning - the trigger is a very low level of cortisocteroid at about midnight. It isn't just the adrenal function as you know - and it is as much the interactions of the rest of it that takes time to fine tune itself.

[LemonZest11 in reply to PMRpro]

I’m not sure what all of this means PMRpro, but I’m hoping that my adrenal function has returned. I take my 2mgs soon after midnight, at around 1.30/2am. I am not suffering any side effects that might suggest my adrenals are sluggish. Does this all sound OK to you? Would I know if my adrenals had not begun to function again?

[PMRpro Ambassador in reply to LemonZest11]

If they weren't functioning to some extent I think you would probably feel much more fatigued - although one lady felt fine at 2mg but the synacthen test showed no adrenal function! One of the London hospitals did some research a couple of years ago that came to the conclusion that 2-3mg was plenty for day to day function. So at some point it might be worth you asking for a synacthen test - or at the very least a basal cortisol - it is above about 350 they take that as a reasonable sign adrenal function is OK.

[LemonZest11 in reply to PMRpro]

Ok, good to know. I have written that down. My doc just returned from UK (father’s funeral) and is isolating, but I have a telephone appt with her next week. I will ask her about that. She didn’t want to know last time I asked, but things are very different now. Anyway, something else to think about. Thanks to you and the others for your information.

[PMRpro Ambassador in reply to LemonZest11]

Feel sorry for her - what an awful reason to have to traipse half way around the world. She needs a hug or two

[LemonZest11 in reply to PMRpro]

I’m very fond of her, even when she gets a bit jealous of all of you who arm me with the information I need to defend myself!! 😂

[PMRpro Ambassador in reply to LemonZest11]

Tell her I send my love Is she a Brit?

[LemonZest11 in reply to PMRpro]

Yes she is … Dr Nicola Cook. She’s been brilliant for me, unlike my first Rheumatologist, who couldn’t give a tuppeny flick. This one is a keeper, although I don’t want the other drugs!!!!

[Exflex in reply to PMRpro]

Thank you as always PMRPro!It appears that timing of the maintenance dose (2.5mg) is important, ie shortly after midnight. As someone who know relatively little, it seems to me, on the face of things, to be rather counterintuitive to hear that the body needs a ‘stimulant’ of Pred to cause the HPA to kickstart. Intuitively I would have thought the ‘stimulant’ would retard the HPA axis. I trust what you’re saying, have no doubt.

[LemonZest11 in reply to Exflex]

I’m not taking pred as a stimulant for “the HPA to kickstart”, I’m taking 2mgs pred because I need it for PMR/LVV.

[PMRpro Ambassador in reply to Exflex]

Exactly - taking pred is the deterrent to the return of adrenal function - so at low doses should be taken at a time that gets it as close to zero in the middle of the night as is possibl, The halflife of pred is about 3-4 hours - and it takes 5 half lives to clear a drug from the system, 15-20 hours for pred.

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

See it been addressed - thanks PMRpro

[SheffieldJane]

I really cannot see what added value Methotrexate or Leflumonide will be at your advanced stage of treatment. I prefer your plan to stay on 2 mgs of Pred for the foreseeable future and carry on with fortnightly Tocilizumab. That’s what I would do. Those two drugs bring their own side effects and are recommended when people are truly stuck at a much higher dose than you. From what I have read, they often don’t help either. There is stuff to read about Methotrexate on FAQs. As you were I think, on a harmless little dose. 🌼

[LemonZest11 in reply to SheffieldJane]

Thanks Jane. My doc is concerned that I won’t get another script and I think she is planning for when/if I need something else. As I mentioned, I really hope that I can hold on at 2mgs and spread the TCZ out, hopefully until I am off it. It’s such a fine line between pred and TCZ at this stage. Thanks for support, I think I’m going to decline any other drugs for now and keep the old fingers crossed🤞. How are you travelling?

[SheffieldJane]

I bet they’ll do the same with me. Still on 8 mgs.

[LemonZest11 in reply to SheffieldJane]

Keep going. I found getting under 10mgs was a milestone. Small steps forward. We’re in this together, helping each other and listening to each other. xx

[SheffieldJane in reply to LemonZest11]

That’s the life saver in all this! Xx

[LemonZest11 in reply to SheffieldJane]

Yes. ❤️ 😘 💪

[PMRpro Ambassador in reply to SheffieldJane]

Like nearly 50% of the patients in the trials.

[PMRpro Ambassador]

Suppose it all depends on what happens when you stop the TCZ doesn't it? I think some rheumies take this MTX approach because that is what they do in RA - TCZ and MTX together, In the clinical trials half of patients got off TCZ after the year and remained in remission (for some time, how long still remains to be seen) - when there were flares they then got a burst of TCZ and went back into remission I think - how long these booster TCZ courses lasted I'm not quite sure but it is clear that TCZ does induce an extended period of drug-free remission in many patients.

You need to know what the policy is going to be in the long term. I'd think that a patient who is doing really well on (say) 4 weekly TCZ with 3mg pred was something to encourage - but would they fund that?

And how do they think the MTX will work - if it doesn't work earlier. why should it work now unless the GCA is actually properly burned out as it does for the vast majority of GCA patients who stop pred and remain drug-free?

[LemonZest11 in reply to PMRpro]

Well I have read your opinion on TCZ and I have read the papers but what I am asking is this: do you think my proposal of staying on 2mgs is sustainable? I am hoping that I have hit my “good dose” (effective control of PMR), and that I can take some months to try to taper the TCZ.

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Don’t think anyone can categorically answer that…you’ll have to try and see what happens.

[PMRpro Ambassador in reply to LemonZest11]

As DL says - no answer to that. 2mg plus 3 weekly TCZ works - but as soon as you take either one out of the equation you don't know what will happen. That's why I wondered about less frequent TCZ and a spot more pred - it is all going to be a balance until you establish whether the IL-6 production has stopped altogether. After all, it does for everyone with GCA sooner or later, TCZ or not. The hope is that TCZ will speed that up.

[LemonZest11 in reply to PMRpro]

Makes sense. Thanks PMRpro. 🤞

[LemonZest11]

Thanks for your response and for explaining your journey. Yes, we are all different. My question was simple: remain at 2mgs and attempt to stretch out the doses of TCZ, or continue to taper the pred and then taper the TCZ. I won’t be able to get another script for TCZ so that will be over for me. I don’t want to introduce other drugs at this stage, I have a good supply of TCZ to keep me going for another year, all going well. So, after advice on here, I’ll just go with my instinct which is to remain at a low dose, ie 2mgs, and see what happens when I taper the TCZ. Thanks for contributing to my enquiry. xx

[LemonZest11]

My mini-setback was a flare when I got to .5mg pred. Since I can't stay on TCZ indefinitely, I would rather stay on a low dose pred, say 2mgs, than introduce another drug when the TCZ runs out.

[LemonZest11]

Haha, I began stockpiling when my weekly then fortnightly and now three-weekly jabs began. The script has a finite time for use and I was determined not to let it expire with repeats of TCX unused. In Australia, TCX can go on forever for RA, but not for GCA or PMR. It works brilliantly for me but, as I said, when I got to .5mg pred, I had a brief flare, brought quickly under control by increasing pred for a couple of weeks. It will now be interesting to see how far I can space the TCX out, that is the next test. I’m going back to three-weekly jabs for a while, and then I will attempt 4 weekly, while remaining at 2 mgs pred. It’s a juggle but I’m going to give it a go. 🤞 The experts on here are not keen on other drugs being introduced, so that’s my plan for now. Will let you know how I go in a couple of months.

[Estellemac]

I agree with DL that's what I would do stick at 2mg roll out TCZ and see what you feel like.

[LemonZest11 in reply to Estellemac]

That's my plan. 🥳

[LemonZest11]

I am proof that you can stretch them out ... hold on to the leftovers for safekeeping 😉

[LemonZest11]

Thanks for explaining your experience with MTX, it kind of reinforces my reluctance to introduce it while TCZ continues to work. As I have mentioned, I would be content to remain on low dose pred. I just need to see if that is possible by lowering the frequency of TCZ. Oh the juggle, but I always remind myself that it's not fatal and that I am fortunate to be in my position. 🥴