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AnnieB
#1 Posted : Friday, October 22, 2010 1:04:42 PM Quote
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Joined: 5/19/2010
Posts: 384
Hi All

When I was first diagnosed in May this year I was prescribed 20mg weekly of MTX and after approx 6 weeks it started to kick in, I then felt like a normal person again and had no pain whatsoever.

Unfortunately towards the end of Sept my doctor phoned and told me to stop taking MTX as the blood test showed that all was not well with my liver and white blood count.

I saw the rhummy two weeks later who then looked at my latest blood test and all had returned to normal,
so I could resume MTX which I did at the lower dose of 15mg weekly.

Now however, for the last three days the RA has returned with a vengence, fingers, wrists, knees and jaw I feel so low.

I thought after reading many posts on here that the MTX stayed in your body for upto 3 months yet I only stopped for two weeks.

Your experiences of this would be greatly appreciated.

Anne x
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flw93
#2 Posted : Friday, October 22, 2010 1:13:01 PM Quote
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Joined: 9/27/2010
Posts: 136
Location: Stockton on Tees, Cleveland
Hi Anne,

I was newly diagnosed last October and put on Mtx 20mg once a week. I was fine initially but then struggled with coughing and breathlessness. As I worked with children, the RA nurse suggested I stop the Mtx for a month. I did that and the pain kicked back in but the coughing and breathlessness stopped. The nurse then told me to restart the Mtx because no one could be sure that this was the cause of the coughing and breathlessness. I restarted the Mtx and within three weeks I was coughing and breathless again. This time they stopped the Mtx and put me on to Leflunomide which worked much better for me. However, I ended up with problems with my liver and had to stop that. I am now on Enbrel an anti-tnf drug which i self inject once a week.

I have continued with pain in my feet and struggling to grip things ever since and I dont think any of the drugs can help with that really. I am still searching for a pain killer which will make my life easier!!

Hope things work out for you. I guess we just have to accept that we are using very strong drugs to fight a chronic illness and we all have ups and downs with it. I like the forum though because people are so supportive.

Louise
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SueB
#3 Posted : Friday, October 22, 2010 9:35:06 PM Quote
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Joined: 8/1/2010
Posts: 255
Location: hampshire
Hi Anne
I was diagnosed a year ago and have been on mtx since Feb (also on hydroxy since last Oct) I have done pretty well but did have a flare back in June where the pains seem to travel from one part of my body to another. It lasted a couple of weeks and then things got better again. A few weeks back I had to miss a dose of mtx because of dodgy bloods. It was only a week but I had pain in my neck and hane about a week later. Quite possibly this was unrelated but who can tell. The trouble is how do we know if the flare would have happened anyway. I certainly felt like you - if the drug takes weeks to take effect in the first place, surly it should take a while to wear off. RollEyes
Hope you soon feel better
Sue
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Lorna-A
#4 Posted : Friday, November 26, 2010 8:17:27 PM Quote
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Joined: 3/8/2010
Posts: 914

Hi Anne,

MTX does take time in your system but may be you have to be on it for years to do this. I have been on it for three years and I always stop it when I am on holiday, in fact it was 3 weeks this time as I was ill before I went on holiday.

Sounds like the cold is going for you, my foot has been giving me real problems too, mine was an injury 28+ years ago. I wear a lambswool support on it to keep it warm which is helping. It may pay you to call your rummy nurse and suggest a steroid injection if you have a number of joints affected.

I feel for you pain is no joke. Take care Lorna x
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SueB
#5 Posted : Friday, November 26, 2010 9:13:44 PM Quote
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Joined: 8/1/2010
Posts: 255
Location: hampshire
I asked my GP that very question yesterday. I had to stop mtx for a week because of a dodgy white count (again). I then went back on a lower dose (only 7.5 now) I've had painful hands this week and then a lot of trouble with my knee. I asked if it could be linked with the reduced mtx. He said that it takes weeks to start working and weeks to leave the system. I suppose this flare could have happened anyway, or it could be the cold but I must say I'm not really convinced. How on earth are we supposed to know -grrr.ThumbDown

Take care
Sue
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