Advice Please on Reducing

[Hollybee21]

Could you please advise which way I should go. I am currently on 2 mg of Pred (absolutely thrilled to be on so low a dose), I am also on Methotrexate by injection. Do you think I should be starting to reduce the Methotrexate now or carrying on to 1.5 mg Pred and then reducing to zero first before starting the reduction of Methotrexate. I don’t want to fail at the last hurdle as I have been on Pred for so many years. Thanks

[PMRpro Ambassador]

I think most doctors keep the MTX going beyond the pred for some time. Sometimes people stop the MTX thinking it isn't doing anything only to discover that it was indeed keeping something under control and they need more pred again. I would just keep on with a very slow pred taper and then stay at the MTX dose for a while before starting to taper that too. Not because you must taper MTX like you do pred but because it may help adust to none of either.

[Hollybee21 in reply to PMRpro]

Thank you Pro will continue with Pred reduction. It feels quite scary to come down to the low dose, terrified it will suddenly go all wrong.

[PMRpro Ambassador in reply to Hollybee21]

If you are using a slow taper it shouldn't "suddenly go all wrong". We keep saying "the lower, the slower" for exactly that reason. If the steps down are small and have long intervals between them then the body is able to adjust slowly too and isn't trying to deal with too much all at once and there is time for you to see that the new dose is still enough to manage symptoms. If you rush down the doses, you don't have that safeguard and it is a sudden and overwhelmingly "all wrong" experience. Softly, softly!!

[Hollybee21 in reply to PMRpro]

I totally agree, it’s taken me just over two years to come down from a dose of 10 mgs, I don’t want to spoil it now. 🤞🤞

[PMRpro Ambassador in reply to Hollybee21]

Absolutely - and there is no need. It may be you need to stay on 1mg - but so what? It is a low dose with no side effects to worry about - but whatever some doctors will try to tell you, it CAN be enough to stop the bucket overflowing.

[Hollybee21 in reply to PMRpro]

Thanks Pro and good luck with your reduction.

[PMRpro Ambassador in reply to Hollybee21]

I've given up on reducing!! I'm on Actemra as well but can't get under 7mg without bicep problems and adrenal problems - which is hardly surprising after 16 years of pred. My rheumy is happy and so am I. That might change if I have to come back to the UK but I'll cross that bridge if I get to it.

[Hollybee21 in reply to PMRpro]

I was stuck at 8 mg for years and my Rheumy was quite happy with that, then was persuaded by Rheumatology nurse to try Methotrexate again but this time by injection and it seems to work. Glad I listened to her. Good luck when coming home, I’m sure you can sort our Doctors out.😀

[Bedwell in reply to Hollybee21]

Sorry! Can you remind me why people take methotextrate please?

[Hollybee21 in reply to Bedwell]

It helps reduce Prednisolone, it doesn’t work for everyone though. When I was first diagnosed about 14 years ago I found it very difficult to reduce my Pred. I tried Methotrexate ( tablet form) but it upset my stomach but I now use Metoject which is Methotrexate by injection and have no side effects.

[Bedwell in reply to Hollybee21]

No one has suggested it so far!!! But am finding things quite difficult having got to 1mg. What is it for!?!?! Digestion? If I can ever get to speak to a doctor?! I will ask! Thanks

[Bedwell in reply to Bedwell]

Just looked it up. Reluctant to start on another drug! !!!!

[LadyJayne68]

This all sounds so sensible, I'm glad I've decided to see a rheumatologist. The GP gave me a reducing plan with my prescription at my first appointment! It was for 2.5mg every three weeks. I didn't get far with that. I've been in a muddle ever since as some of the members here know 🙄Also I think my husband will feel better about it all as he trusts the rheumatologist, she was very good with him.

[Ozziedays]

Hello, I was on MTX during my second year on prednisolone and reached zero pred just before I moved back to the UK from Australia. My rheumatologist down under advised that, had I been remaining under her care and all other things being equal, she would keep me on MTX for a further 18 months after reaching zero pred.

My UK GP and rheumatologist seemed to be in agreement with this approach although in the end I tapered off MTX about a year after zero pred as I’d been getting slightly raised liver enzyme results in my routine bloods. That was almost a year ago, so I’ve now been zero pred for two years and zero MTX for about 11 months.

Regarding the final tapering off pred, I took it very very slowly (more than my rheumatologist suggested). At 2mg, I’d be on a recommended 0.5mg reduction every 4 weeks but I was cutting tablets up to try to make that even less, something like 0.25 for the first of the 4 weeks, albeit not very accurate with a kitchen knife on a plastic chopping board but you get my drift!

All the best going forward.

[Hollybee21 in reply to Ozziedays]

Thanks for the info Ozziedays. I have been going very slowly on my Pred reductions, so it will probably be another 6 months before I get down to zero (with a bit of luck).

[PMRpro Ambassador in reply to Hollybee21]

Don't set your heart on a date for zero pred - there really is many a slip ...

[Hollybee21 in reply to PMRpro]

🙏🙏