Methotrexate

[fifi.b]

Hi there,

I've been asked by my consultant to consider taking methotrexate, I've been on prednisolone for 21 years, also plaquenil. Doc says if I can tolerate methotrexate it could halt/slow down the progress of my lupus. My wrists and hands are very badly affected and I'm in a great deal of pain but I think that methotrexate sounds very scary. I'd appreciate any advice/personal experience etc from fellow sufferers.

It's dilemma time!!

Thanks,

Fiona :)

[raggedyann1]

Fiona,

I hope your doctor gave you a pamphlet on methotrexate. The first time around I took it for 4 or 5 years, then I went into remission. This time I have been on it for 2 years again only at a higher dose. Most doctors these days want to get their patients off of prednisone if it is possible. Staying on prednisone for 21 years would be more frightening for me knowing all the problems it can cause over a long time period.

Yes, Methotrexate is a chemotherapy medicine. However we take it at much lower doses than cancer patients do. It is a DMARD = Disease Modifying Anti-Rheumatic Drug. Yes it can slow lupus down especially when the main problem is the joints.

I did have some nausea the first 2 or 3 Fridays and again at each dose increase. I take my metho on Wed Night and Friday is when I would have problems the few times that I had any at all. Now everybody is different but it is definitely worth a try. I still get some nasal, mouth and ear sores/ulcers, not sure anymore if they are just the lupus or the metho. But they are more irritating than anything else for me.

Let us know what you decide.

Take care,
Karen

[katsgirl]

:welcome: Fiona;

Karen gave you very good information. I use to take methotrexate also. I didnt have any major problems while on it. I was very nervous at first, but things turned out o.k. :)

Kat

[tasparrot]

HI, I was on Methotrexate for two years until I had to come of it so that I could try for a baby( you have to be off it 6 months!!) I was also prescribed folic acid to take once a week which helped with nausea.... hope this helps

Regards Tanyajavascript:emoticon(':D')

[fifi.b]

Thanks, Karen, Kat and Tanya.

I'm quite worried about nasal ulceration as I have a large hole in my septum from ulceration 21 years ago!!

I have been exceptionally lucky with regards to the prednisolone, I haven't had any serious side effects. I even had a bone density scan last summer and that was normal. My consultant hasn't mentioned taking me off the pred. but has said if I get a good result with metho. he would take me off plaquenil.

I've also struggled with IBS and have finally managed to get that under control with natural meds so the thought of bowel problems is a nightmare!!

I really appreciate you advice Karen, I'm still undecided and am waiting to see my GP to see what he thinks. I'll let you know how I get on.

Many thanks,

Fiona xx :)

[fifi.b]

Hi there :)

Just thought I'd let you know that I've met with my GP and Metho. is on the shelf for the time being. My flare up (which had lasted for months) finally 'turned the corner' last wed/Thurs. so when I saw GP on Friday we decided not to start the metho at this stage.

I see my consultant beginning of August so we'll take it from there. I can't tell you how much help you were to me, I will, if I get worse again, try the metho. in the meantime a big THANKS to everyone who gave me the benefit of their experience.

:(

Fiona xx

[fifi.b]

Oops! Clicked the wrong smilie............meant to click :) :D