Methotrexate: Has anyone taken methotrexate to... - PMRGCAuk

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Methotrexate

Macadoo profile image
16 Replies

Has anyone taken methotrexate to reduce or become completely off prednisone and then stop taking methotrexate for PMR? Or did you need to stay on MTX to prevent future flare ups?

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Macadoo profile image
Macadoo
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16 Replies
PMRpro profile image
PMRproAmbassador

I think I have heard of a few who got off pred - but it isn't a common occurrence as far as I know. They get to a lower dose of pred quite often if they can tolerate the adverse effects. Prof Sarah Mackie admits - it works brilliantly for some patients but by no means all. You have to try to find out which you are. I think there is maybe one version of PMR it works for - or it is misdiagnosed inflammatory arthritis.

Macadoo profile image
Macadoo in reply to PMRpro

Thank you PMRpro!

Yorksman profile image
Yorksman in reply to PMRpro

I'm trying to get well informed about Methotrexate pending my next rheumy appointment and your interesting comment about there being 'one version of PMR it works for'. Do you know how many versions there are and which version does it work for? Can I find out which version I have? Also what is Inflammatory Arthritis and how does it differ from PMR?

PMRpro profile image
PMRproAmbassador in reply to Yorksman

It is a very new idea amongst medics really - but it is obvious there are various versions, it isn't a simple homogenous disorder that has a fixed presentation and duration - pretty much every patient is different and doctors need to adjust their approach depending on the particular patient.Inflammatory arthritis is joints, PMR isn't really joints, RA is an inflammatory arthritis but there are quite a few different version of arthritis too.

hss.edu/conditions_living-w...

healthline.com/health/infla...

Yorksman profile image
Yorksman in reply to PMRpro

Thanks, learning all the time.

MrsNails profile image
MrsNails

Hi - When l first went on MTX in 2014 - l reduced from 18mg to 7.5mg in monthly drops from 18mg to 9mg & then went down by 0.5mg drops to 7.5mg

However, my world was turned on it’s axis with a diagnosis of Breast Cancer so that kind of screwed things up, to say the least.

I’m currently on 10mg Pred & 25mg MTX weekly by injection - this time around it’s not so easy to drop as there have been complicating factors……

But l’d say it’s worth a shot - Wishing you all the best MrsN 🍀

Macadoo profile image
Macadoo in reply to MrsNails

Thank you!

discoballs profile image
discoballs in reply to MrsNails

Thank you MrsNails xxx My GP mentioned MTX today. He is really a superb man and lovely Doctor. This gives me hope....

MrsNails profile image
MrsNails in reply to discoballs

It’s definitely worth a shot - l’ve written a fair bit up on it in FAQ’s

The trick is choosing a day that suits but the important factor is it’s usually the following day that has the impact.

Drink lots of water, take your Folic Acid (on non MTX Days) make friends with the Rheumy Nurses as they can be really helpful.

It has no impact on me these days but 10mg Pred is the lowest l can get 🤦🏻 I went back to 9mg but its evident its not enough…..

Maybe time for a review, l think 🤔

Let us know if/when you start it.

Good Luck

Angela 🍀

discoballs profile image
discoballs in reply to MrsNails

Cheers Angela xxxx

Bluesew profile image
Bluesew

I was reluctantly persuaded to take 10 mg methotrexate last September when I was stuck at 15mg prednisolone. (I have PMR and GCA). I have managed to steadily reduce to 5mg.

Macadoo profile image
Macadoo in reply to Bluesew

Are you experiencing MTX side effects?

Bluesew profile image
Bluesew in reply to Macadoo

Not too bad. I do feel particularly tired the following day and I make sure I drink plenty of water and rest. My hair is thinning but I have never experienced any sickness and diarrhoea. I have my bloods checked regularly and my liver function is fine.

Blackcatlover profile image
Blackcatlover

I’m one of the ones that Methotrexate was not a good choice. I took 20mg once a week and was sick as a dog for three days after. I would have four okay days and then was sick again after my next dose. It never allowed me to get below 15mg of prednisone. I took it by mouth for four months and then switched to Actemra. I’m now down to 4mg of prednisone and injecting Actemra once a month and doing well. Have just had surgery so I’m happy to stay on this schedule. In a couple of months I may try to decrease prednisone again. Good luck. Hope you are one of the ones that Methotrexate works for.

Macadoo profile image
Macadoo in reply to Blackcatlover

Do you have side effects from Actemra?

Blackcatlover profile image
Blackcatlover in reply to Macadoo

Not really. I’m tired( or more tired) the day I inject and have a large red area at the injection site but find I feel so much better overall because my prednisone is down to 4mg. I do bloodwork every three months and so far so good. With the Methotrexate my liver function was going down after three months.

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