Methotrexate and pred reduction

[PenelopeVita-Finzi]

I have just reduced pred to 3 mg. I had a clinic appointment this week which I had to reschedule owing to a family crisis and have been given an appointment for November! I need to discuss further reduction of pred with possible reduction of Methotrexate (currently 15mg a week). Has anyone experience with coming off Methotrexate? Does one wait until off pred altogether? Would you recommend reducing by just half a mg now I am down to 3 mg?

I would dearly like to be off both drugs and all the others that go along with them,Alendronic Acid in particular.

As always, thank you to everyone who takes the time and trouble to respond.

Penelope

[DorsetLady PMRGCAuk volunteer]

Hi,

Can’t help on the MTX, but I just told my GP I wanted to come off AA, and he said ‘fair enough’!

Just said I thought as I’d been on for 4 years it was probably long enough, and he agreed. I guess looking at your posts you’ve been on it almost that amount of time.

Recommendation is no longer than 5 years anyway.

[PMRpro Ambassador in reply to DorsetLady]

Some say 3 years - and a very few, even less...

[PenelopeVita-Finzi in reply to DorsetLady]

Thank you, Dorset Lady. Your advice is always very useful. Yes, it is coming up 4 years that I have been on AA. I will ask my GP who is well up on GCA.

[PMRpro Ambassador]

I'm not entirely sure but I believe the usual procedure is to reduce the pred to zero while maintaining the steroid sparer, whatever it is. Then you continue with the steroid sparer for an indeterminate time to see how you get on. Then the steroid sparer is removed - some doctors seem to reduce the dose of that over time too. There is always a risk that if you remove the steroid sparer too soon you may suddenly discover the current pred dose is too low to manage the inflammation.

I would always suggest reducing the dose by 1/2mg at a time at this level - in fact, if only you could manage even less than that!!! It's your adrenal function that is as significant now as the PMR - and going slowly makes it more likely it will kick in well.

Do you have a contact rheumatology nurse? Cancellation on your part has put you back to the bottom of the heap which is why you have now to wait until the autumn - if you get hold of your nurse she will be able to get advice from the doctor even if she can't answer the question herself.

[PenelopeVita-Finzi in reply to PMRpro]

Thank you very much. Your reply is very helpful. I will do my best to get an earlier appointment.

[mojako]

Hi I have had PMR for more than 2 years. Started with 40 mg, my rheumy wants me to get off it. Am now on 2mg but with much more pain, and not only in the morning. I asked rheumy about getting off methotrexate as well, but she said no way as long as I stil take prednisone. We'll see afterwards and try.

[PenelopeVita-Finzi in reply to mojako]

That’s very interesting. Thank you for your reply. I really do need to see my consultant, I think.

[Hobbitses]

My rheumy's original plan (scuppered now by stress) was to take a year to get me off 5mg Pred, then another year to get me off 15mg MXTO...

[PenelopeVita-Finzi in reply to Hobbitses]

I am interested to hear what you say about stress affecting your reduction plan. I have just had a very stressful 2 weeks and a certain amount of pain. But, luckily, all is now well so back to thinking about further reduction.

A whole year to get off Metho! Thanks for the warning.

All replies to my query have been very helpful. Thank you all for your kindness.

[Hev1964]

Hi. When I had my Dexa Scan done they sent a letter to me and my gp advising to stop the Alendronic Acid when I tapered down to 15mg of Pred. Unless you had problems with your bones I can’t see why that advise would be ok for some but not others. I don’t find any problems with it. But If you are keen to come of it I’d be surprised at your low dose, that your doctor would object. Good luck with reducing everything xx

[PenelopeVita-Finzi in reply to Hev1964]

Thank you for this. I hope I can get my GP at agree. I don’t know why I dislike taking AA so much.

[PMRpro Ambassador in reply to PenelopeVita-Finzi]

Probably intuition!

[5lupins]

Hi,. I have been on 2mg of steroid for four years now and have reduced methotrexate from 20mg to 10mg over the last two years and will gradually reduce . I am not trying to reduce steroid again as I am just ok for the first time in nine years. I was put on AA when first diagnosed with gca but it made my bones hurt. Just had a dexa scan . Very slight osteopenia so no treatment. Hope everything goes well for you reducing. I am 73 . Jen

[PenelopeVita-Finzi in reply to 5lupins]

I am 79! I think my next step is to reduce to 2.00. I think a dexa scan would be useful. Many thanks.