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Methotrexate - can I cease it if Ive been stable for years?


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#1 Nia

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Posted 16 January 2011 - 01:09 AM

Hi all,

Ive been taking oral 20mg methotrexate weekly for 12 years. My disease seemed to stabilise after about the first 5 years. I trialled stopping the methotrexate in the third year of my disease because my lung doctor thought it may have been responsible for the mild lung fibrosis I was developing. The lungs stabilised, but the skin flared badly after about 5 months so I restarted methotrexate with good results.
Now I've been stable for a long time.
I stopped taking methotrexate about 3 months ago and have not noted any changes.

Could others share their experiences around this?

Are doctors advising to stay on it indefinately, or do they trial ceasing it after a period of stability?

Thanks,
Nia

#2 Shelley Ensz

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Posted 17 January 2011 - 04:35 PM

Hi Nia,

I don't have any personal experience with methotrexate; I can't take it because I am tuberculin positive. But I have heard of others who stabilized on methotrexate and were then able to successfully discontinue it. Since the natural course of scleroderma is to wax and wane (get worse, then better, all on its own), it is very hard to tell if it was the medication or the simple passage of time that calmed things down.

I'm going to do the Sclero Happy Dance for you, in that things are stable for you for the moment, at least, and hopefully for a nice long interlude!

:happy-day:
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 19 January 2011 - 04:56 PM

Hello Nia

I'm on methotrexate, coming into my third year I think so I can't really help with coming off of it. I expect I'll be on it for at least another 2 years. Part of the problem, as Shelley's mentioned, is that scleroderma can become inactive itself so it can be difficult, if not impossible, to tell whether it's better because it's inactive or because the medication is working. I think it's a case of wait and see and hopefully your scleroderma is now inactive!

Take care.
Amanda Thorpe
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#4 lizzie

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Posted 19 January 2011 - 07:02 PM

Hi Nia, until recently I was on Methotrexate. I had been taking it for 18 months after having had to discontinue Mycophenylate. However, I never liked it as it made me feel ill and I felt it really effected my quality of life. As my skin has stopped tightening and in fact is almost back to normal, I kept asking my rheumatologist if I could discontinue taking it, but he always said no, and would give no assurance that I could discontinue in the forseeable future. The only option I was given was to have a course of cyclophosphamide instead. Three months ago I decided that I really wanted to give it a go without the Methotrexate , so told the rheumatologist that I was going to stop taking it. So far I have not noticed any exacerbation of symptoms plus I feel 100% better in general (more energy, no nausea and my eyelashes are even growing back). However, I would certainly consider restarting if my skin starts tightening again. Keeping my fingers crossed for you that you continue to be problem free.

Lizzie