Silky Starr: Been on Methotrexate for well over a year... - NRAS

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Silky Starr

Wilburdog1 profile image
14 Replies

Been on Methotrexate for well over a year for Psoratic Arthritis - very similar to RA) Brain CT showed marked shrinkage on one side of my brain. I have been changed to Leflunomide 10 mgs a day - was on 50mgs a week methotrexate! You sound such a caring 'bunch' - can anybody give me their experiences on Leflunomide? be so grateful! I too am zombified for most of the time as far as memory etc. goes, the most irritating being that I forget where I put EVERYTHING. Sometimes it is just too much of an effort to get ready to go anywhere. Glad I found this site xxxx

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Wilburdog1 profile image
Wilburdog1
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14 Replies

I've been on Leflunomide for about 10 years, both 10mg and 20mg. Originally added to supplement MTX. Never had any problems with it at all. Good luck. xx

medway-lady profile image
medway-lady

I swallowed first Arava today so much easier to spell pinched off the pack from Boots yesterday. Be interesting to compare notes in a couple of weeks. x

nomoreheels profile image
nomoreheels

I can't help 're the LEF as it's not a DMARD I've tried though I'm sure you'll receive lots of help as there are quite a few who have been or are on it. Hope it's a good med for you. I just wanted to say welcome & that you're quite astute, we are a caring bunch because we all get how it is, all being in the same boat! I hope you enjoy being here & feel sure you'll be in touch soon with other members here who have PsA.

Wowsers though, 50mg MTX!! That's the highest dose I've ever heard of anyone take with an autoimmune disease. Kudos to you! :O :)

Wilburdog1 profile image
Wilburdog1 in reply to nomoreheels

Your lovely reply made me think and dig out my old bottle off MTX - So sorry ~ I took 10 x 2.5mgs every Friday - dohhhh! My excuse is that I had a very poor brain scan result and my memory is in bits :/ and I'm old!!! xx

nomoreheels profile image
nomoreheels in reply to Wilburdog1

Not to worry, as long as you didn't make the same mistake counting them out when you took them! Anyway, it's not a worry any more is it?

Hope you're settling on the LEF by now & it works well for you & your being well cared for since your scan. x

denvajade profile image
denvajade

I agree very high! Why was that and has it anything to do with what's going on with your brain WISHING YOU WELL

Wilburdog1 profile image
Wilburdog1 in reply to denvajade

Sorry! Got it completely wrong - 10 x 2.5 mgs is NOT 50 mgs - plonker! xx

Wilburdog1 profile image
Wilburdog1 in reply to denvajade

I actually made a mistake with my 'sums'. Once a week I took 10 x 2.5 mgs of MTX. Never did I ever take 50!!!! On last visit to Rheumy (he had the brain scan in front of him) and he said "in prescribing you MTX to help control the PA, I am possibly responsible for what is going on in your brain! - I will suggest GP puts you on Leflunomide and see if there's any improvement!" Haven't been on them for a month yet, so hard to tell! xx

pm52 profile image
pm52

That really is high, I thought the largest dose was 30mgs but I may be wrong, my brain is mush on 15mgs Mtx and 50mg enbrel also for psa not ra.

Wilburdog1 profile image
Wilburdog1 in reply to pm52

Wrong !!!!!! 25mgs per week 10 on a Friday of 2.5 mgs. Dohhhhh :(

Kathyfitz12 profile image
Kathyfitz12

That was a huge dose of Mtx! I was on 20mg per week & hsdvtomcomr off it because after about 8 years I developed Central Nervous System symptoms......dizziness,vertigo &'a feeling my head was full of cotton wool. Not pleasant.....I changed to Arava & apart from some nausea in the first couple of weeks I am finding it seems to be controlling my RA very well.

I monitored my BP for the first few months as I was told Arava could raise it...but it didn't affect mine.

So....so far so good.

I do hope it suits you....hopefully being off the Mtx will solve your zombified feelings...l felt better about 6 weeks after stopping the Mtx.....& have had no adverse feeling on Arava.

Goo luck Wilburdog 1

Kathy

Wilburdog1 profile image
Wilburdog1 in reply to Kathyfitz12

Sorry - this dappy old lady got it wrong - 10 x 2.5mgs doesn't make 5O dohh!

Wilburdog1 profile image
Wilburdog1 in reply to Kathyfitz12

Sorry - didn't do my sums right - 10 x 2.5 mgs doesn't make 50 and I'm an ex nurse - shame on me, but I am 71 with a dodgy brain!!!!!

Wilburdog1 profile image
Wilburdog1 in reply to Kathyfitz12

Please see other posts - I got it wrong - 10 x 2.5 mgs doesn't make 50 mgs. :/

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