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Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
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Hi all. I'm on MTX & have been for around 6 months. I'm up at 20mg now and the side effects (yuck) seem to be getting better, and the inflammation is not too bad so it does seem (fingers crossed) to be working for me (yippee). But of course now I'm worrying that it won't last, especially as there are lots of posts about being taken off it. So, are there people out there who've been on it with no problems for years & years? I do hope so.........please tell. Polly
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Polly
Don't panic!! Easy for me to say, I know, but I have been on MTX for just under 8 years now, and it is still working!!!! I had to switch to injections a year ago because I started to be very sick on the tablets and have also had hydroxychloroquine added into the "mix" but it's going well.
I am so pleased it has started to work for you. Here's to a much brighter and painless future.
Love Jeanxx
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hello I would like to ask both Polly and Jean whether you were on only MTX alone for ages and has it worked?
I am on triple drug therapy of MTX (17.5 mg) , HCO (2 x daily = 400mg)(plaquenil) and recently Sulfasalazine (4 x daily 2grams) added also.
I am wondering if this is over treatment and I am not going to know which one is doing the trick.
I guess I'll rely on the consultants opinion but long term I am hoping to reduce some of these dosages as on 49 tablets a week!
- darshin
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Rank: Member
Groups: Registered
Joined: 9/29/2010
Posts: 27
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Hi
I've been on mtx since I was diagnosed 5 years ago and apart from having to switch to injections at the end of last year due to being sick on the tablets it's still working fine for me.
Hope that helps
Dawn.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Darshin
I was on mtx alone for the first 6 or so years but the modern approach is to hit the RA hard and use triple drug therapy. There are people who have gone into remission after this hard hitting treatment. It's obvious that your consultant is up on all the latest guidelines with regard to treatment which has to be good. If you have a reasonable quality of life, then something is working! The only negative I would flag up with regard to taking mtx alone, is that my joints continued to deteriorate and many are now damaged. I do wonder if things would be the same had I been put on triple therapy from the outset - but I'll never know.
Don't be afraid to visit your consultant armed with questions about the drugs and your treatment. It's very good to have as much knowledge as possible.
Love Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Interesting Jean, pain free? Been on MTX since November and still taking max paracetamol, and just swapped to naprosyn from diclofenac because of constant nausea (I'm giving you a run for your money on the weight loss!) and a day doesn't go by without that scream out loud pain, at least half the week when either or both hands won't work but ESR and CRPs both low, so its all under control then and that's OK. Seems like as long as I'm not as bad as I was in November and can clench my fist I should shut up and go away. Should I be shouting louder and using that clenched fist to hit the consultant methinks?
Sara
x
2 fish in a tank, one says to the other, 'do you know how to drive this?'
Gotta keep laughing!
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Polly, I have been on Mtx in the triple therapy for nearly 4 years. I am no longer on Sulph and I keep very well indeed. I do not have any joint damage at the moment and long may this be the case.  Keep being positive and pain free. Take care Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Thanks Jean for a prompt reply - lets hope MTX keeps working for us all.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Actually, Sara - no, not pain free for a long time. Dosed up on co-codamol, arthrotec and tramodol for breakthrough. Things now much much better. I take 2 cocodamol when I go to bed, but try to stay off them as much as poss. xxxx
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Polly,
I was diagnosed last may and take 25mg MTX weekly plus FA, seems to be working pretty well (fingers crossed)
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello
My gran is on the MTX- and has been for almost 17 yrs now and its the BEST drug she has ever had. It hasnt stopped the damage happening to her joints but it certainly has slowed the progression from what it was before.
She has had RA since she was 14.
SHe feels so well on it.
She is now  in her later 80s and is a funny old sausage at times! But she finds the MTX suits her well. She is on 20mg now. Refuses point blank to go any higher....!
Thats Grandma for you...
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Jenni
That is so inspiring. Thank you for posting.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Polly, I have been on mtx for 8 years and have gradually had the dose increased to 15mgs. It has not been without it's problems ie infectiond of one sort or another and the odd low white cell count plus an 'iffy' stomach but it has worked for me. I am not pain free but it is managable on cocodamol a few times a week.
Bevxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Bev - have you asked about MTX by injection? Gets rid of the iffy tum. Were you at Bolton yesterday? Sorry I missed the meeting yet again. My s-i-l's father had a stroke/heart attack and we were drafted in to look after the kids. xxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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grandma has it by injection.
she can do it herself (they trained her) its easy peasy and she has really damaged hands (lots of surgery etc)
how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi, i'm on mtx 25mg injections and hydroxy with co-cods feel fine,was on 25mg tablet mtx felt ok but did get the sickly feeling,the doc didnt think i was getting full doze into my system so put me on jags, i only get a bit of nipping for a few secs just after jag then fine but sometimes the area feels tender only for a min or 2 then alls well but i do feel better for changing to injections, they have upted folic to 6 days now i was only 1 day before must say has helped with hair and skin,i do get a bit of a rash now and then but i blame the co-cod for that as they make me itch,keep notes of any changes and discuss it at next visit,i do watch my diet as well.my hair was ok on tabs but when i went on inj it did start to come out but now back to normall hair loss
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 346
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Jean, thanks, i will ask at my next appointment about injections i think. I didn't go to Bolton either. Sorry to hear about your s-i-l's dad, hope he's feeling better.
I will email you soon, we have been busy here with one thing and another.
Bevxx
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Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
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Thanks all, that's given me lots of comfort for next bunch of years. Esp Jenni's Granma as 17 years would get me into my 70's by which time they might have developed something even better or even a cure? Well we can but hope. Polly
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