Methotrexate duration

[Kingstontown1]

Can anyone tell me when you’ve finally tapered off prednisalone what happens to the methotrexate I take , does it stop as well?

[MrsNails]

Hi, l haven’t got to that point yet but from my understanding they don’t usually stop the MXT as you stop the Prednisolone.

What dose of each are you on now?

MrsN

[Kingstontown1 in reply to MrsNails]

12.5mg methotrexate and 1 mg pred

[MrsNails in reply to Kingstontown1]

Oh Well Done You 👏🏼 what’s the plan now for tapering the 1mg - will you go to 0.5mg daily or 1mg alternate days?

Please let us know how you get on (especially me) as l would be really interested to see how it goes.

Best of Luck 🍀

MrsN

[bakingD]

Well done how have you felt on the Methotrexate??

[Kingstontown1 in reply to bakingD]

Had to stop for 2 weeks cos of chest problem,ok but couldn’t take 15 mg made me cough a lot

[cornishjan]

No, it carries on. It takes over the immunosuppressant work that the Pred was doing. After a while the doctors start to reduce the dose and finally stop it, though I always get raised CRP levels and have to go back onto a higher dose whenever they try that. Still, it would have been the same if I had just been on Pred.

[MrsNails in reply to cornishjan]

Thanks for that Jan, how long have you been on the Methotrexate since you stopped the Prednisolone?

[cornishjan in reply to MrsNails]

The first time it was about a year. All inflammation levels were fine as I slowly lowered the dose (under rheumy's supervision) until I stopped the Methotrexate completely for 2 months when my CRP shot up to 80. Back onto Pred and Methotrexate again. I stopped the Pred again about 20 months ago and was dropping the Methotrexate slowly but after four months on 10mg my CRP went up to 21 in early June. Not massive but I have had my dose increased to 20mg and will see what happens at my next blood test next week. Isn't this GCA fun?

[MrsNails in reply to cornishjan]

Good Luck for your next set of bloods 🍀 it certainly defies what the doctors expect & unfortunately we just have to roll with it!....

Let me know how you get on.

Kind Regards

MrsN x

[Kingstontown1 in reply to cornishjan]

Thanks x

[dancersize2]

Very interested to hear your replies. I'm on 3/4 g pred and 20mg MTX. when I asked the rheumy about reducing the MTX as the pred came down, she said to do one thing at a time. I feel I'd like to drop the MTX to 15mg before I get to zero pred. I see her again end of month so will be interested to see what bloods tell her.

[Suet3942]

My consultant said I would probably be on it for the rest of my life!

[MrsNails in reply to Suet3942]

Hi Sue

What dose of Pred are you on now? I’m still on 12mg but just today l’m starting to feel the benefit of the raised dose of MTX 🙏🏼 (20mg) just a bit more ‘like myself’.......

I’m not going to rock the boat so l won’t start any reduction until l’ve had four doses (weeks) at 20mg MTX It’s been almost TWO Years since they stopped the MTX & l’m only now getting back to feeling something like but l need to get the Pred down now! 🙏🏼

Hope you’re doing OK?

Angela x

[Suet3942 in reply to MrsNails]

Hi Angela. I’m on 6mg and was feeling quite good until I got a gum infection. Have had antibiotics but has not cleared it up. It was affecting my ear and was getting shooting pains in my scalp which has stopped now. My scalp is a little tender and I started panicking about gca but stayed calm because it may be linked to the gum infection. In 2018 when I had reduced to 5mg I had a really sore scalp. I was sent to Moorfields hospital and they said as a precaution to take 60mg pred and got to my local hospital the next day. I saw a rheumatologist who said in his opinion it wasn’t gca and I decreased to 10mg. The sore scalp abated so it may be something I just have to get through at a lower dose. It’s a little better today.

Sorry, you didn’t ask for this rambling. 😂

I’m so glad you are feeling more like your old self.

[MrsNails in reply to Suet3942]

That’s what we’re here for 😉 6mg is great, are you going down in 0.5mg drops now? I’m going to do 12->11mg; then 11->10mg then from there down in a Slow Taper by 0.5mg Sorry about your gum infection, sounds painful, hope everything settles soon.

And pray we get some sunshine again soon 🙏🏼

Take Care

Angela xx

[Suet3942 in reply to MrsNails]

Yes I’m doing 0.5mg every 5to6 weeks. Baby steps

[PMRpro Ambassador in reply to Suet3942]

It's amazing what useful info comes out of a ramble!!!