Change of steroid and methotrexate

[CraftyE]

Good afternoon all,

I've just come back from my rheumy appointment - I am having difficulty decreasing prednisolone lower than 6mg, I've had scans done today and blood tests which show I didn't have a flare when I thought I had. So the consultant has changed me over to hydrocortisone 20mg a day for a month, but to have a serum cortisol test done in a few weeks.

I forgot to ask if I continue with the methotrexate injection - 10mg once weekly. Can anyone help please?

Many thanks in advance!

[DorsetLady PMRGCAuk volunteer]

I am having difficulty decreasing prednisolone lower than 6mg

Yes but how are trying to reduce? The Rheumy’s suggested taper or what we recommend, much slower and smaller reductions?

Would say at less than 3 years in you werent than usual to be honest.. bit more info might help us to advise.

As for bloods? Not always that conclusive -but guess you have to try their way and see what happens..

[CraftyE in reply to DorsetLady]

He suggested 1 mg drop per month - I did 0.5 mg per 2 weeks and couldn't do it - all the symptoms came back, head / neck pain, extreme fatigue, back / hip pain, tender scalp. The blood tests and axilla - temple scans I 've had today show no inflammation / active disease, so he reckons the solution might be to change me to hydrocortisone instead. But I forgot to ask about the methotrexate!

[DorsetLady PMRGCAuk volunteer in reply to CraftyE]

Below 10mg, 1mg a month might work for some-but many can only manage -1mg every 8 weeks -something that is mentioned in the guidelines.

Whether the hydrocortisone will be any better you’ll have to see. Others with experience of MTX will along -but if it hasn’t been a great suggest to date, not sure it will be in future.

[Petcut]

Usually Rhuemys have a help line,ring to ask if your to carry on with Methotrexate

[Gauralind]

I think this is too important to not clarify with your consultant. If there is no helpline to ring as Petcut suggests, ring consultant’s secretary. There is usually a phone number/email address and a listed secretary’s name at the end of consultant’s letter.

[byebyebicycle]

As DorsetLady says blood tests are not reliable - I've 2 flares and no doubts they were and my inflammation markers in the blood tests were normal. My GP at first sceptical is now also convinced of this. Good luck with the taper -I'm at 9.5mg, again, so a long way to go.

[CraftyE]

I've left a message on the helpline - thank you for all your comments! I will let you know what they say when I get a call back, hopefully this afternoon!

[PMRpro Ambassador]

If pred isn't managing the symptoms then it is very unlikely that even the equivalent dose of hydrocortisone will do so,

It took me over years to get reliably to lower than 10mg - you aren't reducing relentlessly to zero, you are tapering or titrating the dose to find the lowest effective dose and after 3 years, 6mg is not unusual. MTX is not a reliable steroid sparer - it works for some but not that many. I think your rheumy is being naive about the characteristics of PMR - you are at your limit for managing the PMR, you have arrived at your interim destination, It doesn't mean you won't get lower - just not yet.

[CraftyE]

Thank you to everyone for your helpful and constructive comments - I always think the doctors are the experts, but not when it comes to PMR or GCA, it seems! I've had a call back from the helpline, they said to continue with the MTX, so I will see how that goes.