Prednisolone/MTX increase

[Katiecatweazel]

Hello, I'm worried what an increase from 2.5 Pred straight up to 10 for a month, after which down to 7.5mg, might do to my adrenal glands? I have never had a Syncathen test. The increase was because of an abrupt rise in my CRP 3 months since stopping TCZ. MTX is being increased as well. Having been on 2.5 for a while, how long on these higher doses of Pred before they affect the benefits of the low dose? I'd appreciate your thoughts.

[PMRpro Ambassador]

Why so far and for so long? We'd have suggested adding 5mg for up to 7-10 days - which may be plenty. And with that you can drop back quickly without it affecting where you had achieved with adrenal function.

[Katiecatweazel in reply to PMRpro]

Thank you PMR Pro, I think going up gradually if necessary rather than the other way round would suit me, especially as blood monitoring is to be every two weeks. And this is in conjunction with increasing MTX, supposed to be up to 20mg but 15 is prob as far as I'm thinking of.I truly appreciate this feedback, thank you.

[PMRpro Ambassador in reply to Katiecatweazel]

Not too gradually - or you just play catchup for ages!!

[Katiecatweazel in reply to PMRpro]

Yes, 7.5 is where I'm headed until the next blood test!

[Katiecatweazel in reply to PMRpro]

PS Heartfelt thanks for your reply and all the very best to you.

[SheffieldJane]

I think that there is an element of individual luck in this, almost impossible to predict. We have people on here whose Adrenal function recovered after years of medium dose Pred. I found 7 mgs a really tricky stage, it took me a year to get down, due to fluctuating Cortisol levels I expect. Had you been on Tocilizumab for a year or are you in the US?

[Katiecatweazel in reply to SheffieldJane]

Thank you for this SJ. Yes, in sunny Somerset here. I had been on TCZ for a year and progressed to 2.5 Pred during this, finished in November, with no apparent problems up to now. So luckily I passed the under 7 levels without any problems but as you say, we are all different! I'm hoping it will resolve quickly then I can stick at 2.5mg. Pred. Thanks.

[SheffieldJane in reply to Katiecatweazel]

It’s quite brutal to finish the treatment with Tocilizumab after a year, particularly when you were doing so well. I went up to 40 mgs from 3 mgs when my GCA/LVV was diagnosed. I got down to 10 mgs Pred with the aid of Tocilizumab, I struggle to get lower. I only have 5 months left and I don’t want to go on Methotrexate. I am due another Synacthen Test when I get below 5 mgs Pred. I got a normal potential function result previously.

I share the same Rheumatologist with Rugger. I wonder why we were treated differently? Re the Pred dose I mean. I needed every mg.

[Katiecatweazel in reply to SheffieldJane]

Hello SJ, a few weeks before I came off TCZ I started MTX at 10mgs which is where I'd stalled for the moment. Out of curiosity, have you a particular view on MTX?Rugger and I have histories with some similarities...

[SheffieldJane in reply to Katiecatweazel]

Nothing scientific, I just haven’t seen compelling reports on its efficacy for GCA/PMR and the side effects put me off. At least Pred made me feel better, but the drawbacks became evident latterly ( Diabetes ( steroid induced) cataracts ( maybe not linked) and raised blood pressure ( on two meds). The diabetes test is normal currently ( lower Pred, mindful diet).

[Katiecatweazel in reply to SheffieldJane]

Thank you for your thoughts. I don't want to be on a higher dose of MTX as I have a weird liver anyway so I'm going to moderate it until I see what's what with my blood next time. I hope to get back again to somewhere in the lower levels of Prednisolone ASAP. Meanwhile, thank you very much, it has been very comforting to have a chat with people who have experience of what I'm talking about! All the best to you.

[Rugger]

When I had my PET-CT scan which confirmed the GCA-LVV diagnosis, I went straight up to 10mg pred from 4mg. I stayed there for 4 months until I started TCZ, at which point I tapered the pred at 1mg each month. At 3mg pred I had a Synacthen test which showed my adrenals were working, albeit a bit sluggish!

(My CRP rose, which is why my Rheumatologist arranged the PET-CT scan.)

It seems that 3, 2 and 1mg pred has been too little for me, so now I'm back up to 5mg for what will be another 4 months until I see my Rheumatologist - to discuss what to do when the TCZ 'ration' runs out - most likely MTX.

I'm grateful that I'm being treated and I feel that my adrenal glands just have to hang on in there until all this goes into remission..... I suppose I'll have another Synacthen test when I manage to reduce the pred without any return of symptoms.

I realise we're not in exactly the same situation, but there are similarities.

Best wishes.

[Katiecatweazel in reply to Rugger]

Hello again Rugger, if this CRP rise needs further treatment there's the possibility of a short further extension to TCZ, and/or a PET scan to see what's active. I hope your, and my, adrenals hang on in there! All the best, S