Methotrexate : I've been taking 20 mg methotrexate... - PMRGCAuk

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Methotrexate

Jancorb profile image
26 Replies

I've been taking 20 mg methotrexate for about 6 months in an effort to reduce my prednisolone intake. I've tried several times to reduce below 7 mg, all failed.

Can I just stop taking methotrexate? My PMR under control at 7 mg preds, this up and down of flares and severe nausea are worst than when I started.

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Jancorb
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26 Replies
SheffieldJane profile image
SheffieldJane

It is my understanding that no tapering is required with Methotrexate. Run it past your doctor because they will haven monitoring you for liver/ kidney damage.

Hi, Jancorb

It’s not about a race to zero it’s about getting the PMR under control at the lowest dose possible.

And, at this time it sounds like it’s 7mg, if you stop the Methotrexate you may find you have to go back up to a higher dose.

When are you due to see your Consultant next as you could discuss it further.

One of our ladies Suet, stopped her Methotrexate as she felt it wasn’t doing her any good, but she soon realised that it was having an impact. I’m sure she will reply to you.

I too, can confirm that stopping Methotrexate impacts on the Prednisolone dose. I was on 7.5mg last August when my MXT was stopped due to my Blood Results, for the first month there was no issue but gradually l became more affected by the PMR & my condition in general, l am now back up at 12.5mg waiting to see a New Consultant so l can be started on Methotrexate again.

If 7mg is where you are & it’s holding the PMR at bay then l’d be inclined to sit there for a month & then consider dropping again by 0.5mg using one of the slow methods of reducing.

Wishing You All The Best

MrsN

in reply to

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Jancorb profile image
Jancorb in reply to

I've lost count of the number of times I've tried to reduce over the last 2 years, dead, dead slow and not so slow, all failed .

I should have seen my consultant in spring but no appointments have been made, I know I'm depressed because we lost our beautiful daughter in law to breast cancer 6 months ago, and quite frankly don't need to be feeling physically ill all the time.

I will stop the methotrexate and see how it goes.

in reply toJancorb

Oh Jancorb

I am so very sorry to hear about your beautiful daughter in law, that must have been a huge loss to your whole family & it takes some coming to terms with.

I really feel that you need to see both your GP & your Consultant, book to see your GP & ask him to chase your Appointment with the Consultant.

I do not feel that this is a good time to be attempting to reduce your Prednisolone especially as 7mg is the approximate physiological dose we all need & at this time your Adrenal Glands may still be inactive, so realistically you cannot get any lower at this time.

If you decide to stop the Methotrexate you may well have to increase your Prednisolone so l think a chat with your GP & Consultant is essential.

You may well also benefit from a course of antidepressants as its not unexpected to have a reactive depression due to the loss of a daughter in law & the impact on the family.

Sending you kind regards 🌷

MrsN 🌷

Jancorb profile image
Jancorb in reply to

Thank you, I'll stay at 7 mg until I recover from everything that's happened, my family are a huge support and my garden is my antidepressant, I'm heading into the undergrowth shortly to hack back the jungle!! I know I'll be still and sore later but no matter. Regards Jan

in reply toJancorb

Good Plan to stay on 7mg at this time, enjoy the gardening 🌷

PMRpro profile image
PMRproAmbassador

It may not help you get below 7mg, it doesn't get you OFF pred, just possibly to a lower dose. But it may be helping keep you at 7mg. The only way to find that out is to try and yes, you can stop taking mtx without tapering if that is what you decide to do. Though I wouldn't do it without discussing it with at least your GP.

I tried methotrexate and it made me feel awful and I knew it wasn't worth feeling so awful to get to less pred - which doesn't cause me any measurable side effects, not even a change in bone density. I prefer to take a bit more pred with no added downsides I can feel or they can measure than to take a drug like mtx that makes me feel worse than I did with unmanaged PMR!

Had you got to 7mg on your own before the mtx?

Jancorb profile image
Jancorb in reply toPMRpro

Thank you so much for your reply, your experience mirrors mine exactly. I've got to 7 mg by dead slow method before taking methotrexate. My bone density and bloods were fine, occasionally I would have a flare and take a higher dose of preds for a few days then straight back down as quickly as possible.

The methotrexate has certainly made me feel worse, and I won't be taking anymore. Regards Jan

My problems with mtx appear to be dose related. Am currently checking that theory. When dr upped dose to 15mg mtx, side effects lasted 3-4 days. Fatigue, pain etc. Not worth it. Now on 10mg and after 4 weeks ( info had indicated might be 6 weeks before effects reduced) had only one really bad day. The day after weekly dose. Hope this pattern continues. Unsure if mtx will let me lower pred as dr dropped pred dose way too fast. Had to go to 12.5 mg pred. So thankful that I learned on this forum ( after the fact 😕 ) , about slow tapering. That’s the next step when I see dr in 2 weeks. So sorry about your loss. So difficult when it’s a young person. My best to you.

Jancorb profile image
Jancorb

Hello, I was started on 15 mg and didn't feel so bad but couldn't reduce below 7 mg preds, so it was thought that an increase to 20 mg methotrexate would help.

It's not and as I've said made me feel really terrible. Thank you for your kind thoughts.

Baileyw06 profile image
Baileyw06

I had trouble tapering from 7 but I am using CBD oil which has helped me to get to 5 1/2 using the super slow tapering.I have no side effects from the CBD oil,

Jancorb profile image
Jancorb in reply toBaileyw06

Hi, sorry I've not heard of CBD oil, is it available in UK?

in reply toJancorb

I just wanted to flag this up so people have all sides. Cdb may effect the way thAt pred is metabolised. That doesn't mean i am saying do not take (as if I have that power 😂😂😂), but it's worth considering.

cbdoilreview.org/cbd-cannab...

in reply to

I would rather have full wacck(y)😁😉

Jancorb profile image
Jancorb in reply to

Thank you, as the allowable doses allowed in UK are very low compared to US I think any risks are acceptable compared with taking methotrexate, I will try CBD for one month and report back.

in reply toJancorb

I think it's worth a try....I won't say anything worth a try but damn near. 😆

Baileyw06 profile image
Baileyw06 in reply toBaileyw06

I don’t know, I live in the states.

Jancorb profile image
Jancorb in reply toBaileyw06

I've looked it up, we can buy it here, could I ask if you take a particular strength?

Baileyw06 profile image
Baileyw06 in reply toJancorb

I take 1 dropper of extra strength hemp 28mgextract oil . I take it before I go to sleep.

Jancorb profile image
Jancorb in reply toBaileyw06

Thank you, I'll be looking to buy some later. Regards Jan

Baileyw06 profile image
Baileyw06 in reply toJancorb

Hope it works for you!

Jancorb profile image
Jancorb in reply toBaileyw06

I'll let you know, I've bought capsules which are only 2.75% and equivalent to 8 drops, I will take 2 a day.

Christophene47 profile image
Christophene47

I just stopped Methotrexate; didn't make a bit of difference in how I felt. Still stuck at 4mg. of Prednisone and not sure if it is too low a dose for me because still feel lousy. But stopping Methotrexate wasn't a problem for me.

Jancorb profile image
Jancorb in reply toChristophene47

Thanks

PMRpro profile image
PMRproAmbassador in reply toChristophene47

If I got to 4 or 5mg pred without I wouldn't even countenance mtx - that is such a low dose anyway it is ridiculous to add in the downsides of another immunosuppressant.

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