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Experience - Off meds - how soon can symptoms reappear? Options
Bluedmcx
#1 Posted : Wednesday, September 22, 2010 5:38:01 PM Quote
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Hi Everyone,

I've recently come off my meds, I was on 25mg of MTX weekly injections. Can I ask what peoples experiences are in terms of how soon do symtpoms tend to reappear after you stop taking MTX? It's been nearly 5 weeks and I don't feel a twinge... this is great! however, just trying to prepare myself in case it hits me like a double decker bus which would be not so great.

Appreciate your experiences.

Many thanks,
D
Rose-B
#2 Posted : Wednesday, September 22, 2010 5:51:09 PM Quote
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Hello there,

When I had to finally come off MTX I saw a difference in stiffness etc in about 3 months.
However you may be lucky and it may not come back so painfully - fingers crossed for you

Rose x
Bluedmcx
#3 Posted : Wednesday, September 22, 2010 6:31:30 PM Quote
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Thanks Rose, useful to know. I've come off because we will TTC once I've been off MTX for 3 months. I've been on MTX for 2 years which is when i was finally diagnosed. I stopped the plaquenil back in April.

Is there a reason you had to stop your meds?

x
LynW
#4 Posted : Wednesday, September 22, 2010 6:50:09 PM Quote
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Hi Smile

I came off Methotrexate in May and it took about three months for the stuff to get out of my system. I was still taking Prednisolone and injecting Enbrel so I wasn't totally without meds. I did have a lot more stiffness and joint pain though. I think if the methotrexate has been doing its job you might expect some sort of RA symptoms to appear around the 3 month mark. How badly you may flare is an individual thing so all being well it will be mild and can be controlled with an alternative drug until you conceive. At that point the disease may well do a runner until post-partum. If you don't suffer at all from the methotrexate withdrawal, great as it would be, I would have to question whether it was actually doing you any good at all!

Do keep us posted on progress.

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Bluedmcx
#5 Posted : Wednesday, November 10, 2010 4:05:13 AM Quote
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Hi everyone,

So I am 11 weeks off MTX and last week RA started to make itself known. Its a little strange though as I feel terrible, my hands are stiff and painful, my shoulders are aching, my knees feel twingy and I feel very tired. But I cannot see obvious swelling in my joints even though they hurt. Is this normal? Or is this just the start of it?

I feel so down and having to explain to people at work is embarrassing. I hate having to go through and explain it all with new people again, they just don't understand, but it's nit their fault I know and I'm just being angry again. It's coming up to 2 years since I was finally diagnosed, I just hope this isn't the start of the beginning as I know it.

I came off the meds so we could try for a baby, so I know it will be worth it when/if it happens, fingers crossed.

Sorry - that is my rant over, I can't sleep and needed to vent. Thx for listening.

Donna x
ceri44
#6 Posted : Wednesday, November 10, 2010 11:05:00 AM Quote
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Hi Donna
Im Ceri and was diagnosed last year, I am on 20 mg mtx inj and recently had to stop and symptoms came back after 6 weeks. Thankfully as soon as started it again things settled down.. Feel so sorry for you I know exactly what its like not to sleep and to be wandering around in the early hours! Dont worry about explaining to people at work its up to them to understand.. I dont get a lot of swelling in my joints except my right ankle and from what Ive read on here thats normal, Lots of luck with trying for a baby take care xx
chockers
#7 Posted : Wednesday, November 10, 2010 12:28:26 PM Quote
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Hi i am also off mtx and have been for 4 weeks now i am fine

christine
The chocolate eating housewife ...The washer woman .....naughty lady
jenni_b
#8 Posted : Saturday, November 13, 2010 3:31:20 PM Quote
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hi like the others it is between 3 and 6 mths. sometimes if you are lucky enough for remission to have kicked in it can last a lot lot longer.

lets hope you are one of those!

Jenni
how to be a velvet bulldoser
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