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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Hello,
Quick question for all those on MTX - I have been on 20mg for a while now with no problems but today my Rheumy has asked me to increase my dose to 22.5mg. Is anyone else taking this much? Is this dose going to tip me over into the side effects that I have so far avoided?
Any thoughts appreciated.
Ju x
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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Hi Ju
Not on any higher than 20mg at the moment but my rheumy did say that it might be increased next time - I think he mentioned up to 25mg was possible. I went from 15mg to 20mg per week after three months and didn't really notice any difference in side effects which seemed to remain about the same (occasionally slightly queasy and tired) after the increase in dose. Everybody's experience with mtx is unique so it would be impossible to say how you will feel. (loving "rheumatoidymummy")
.....eve x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ju As Eve says we are each different in our response to meds and sometimes it comes down to a case of try it and see. At least you will continue with regular monitoring so any problems would be picked up quickly. The increase is only a small amount so with a bit of luck only your joints will notice the difference! Hope it works well for you Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Thanks for your help - I thought 25mg was the upper end of the dosage limit so I am nearing it - hope this will do the trick then.
Eve - I've had slight nausea and tiredness but I take my MTX on Friday nights and my husband gets up with the smalls on Saturday morning so that I can get a good nights sleep in - I found that helped. Rheumatoidymummy as I was diagnosed just after I had my second who is being a monkey tonight and won't go to bed - he's two and a bit and hasn't had a nap today so I thought he'd be in the land of nod early tonight but he has different ideas hence I am up and down the stairs doing Supernanny's pick up put down technique - not much fun given I had a steroid jab into my ankle today!
Lyn - my rheumy's decision seemed to be based on the fact that my red blood cells haven't grown too large on the MTX and my liver function is still OK but he and my GP seem to disagree on how frequently I should get my bloods done - my Rheumy says I can leave it up to 10 weeks but my GP insists I have it done monthly - I'll carry on having it done monthly as I am increasing the dose of MTX, seems sensible!
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Ju I remember the days of balancing very small children with the needs of RA ... not an easy task and I applaud you for getting on with it even with the problem ankle, needs must I suppose! Hope children settle and you manage to rest it some to allow the injection to work. Think you're right to stick with monthly bloods ... 10 weeks can be a very long time when you're waiting for the next bit of re-assurance! Good luck Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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Your GP will have a protocol for how often you need to be tested so I would absolutely go along with him. I know mine (in scotland, so it could be different in england) said it was fortnightly for six weeks after an increase in dose (i.e. three times) and monthly thereafter. We really could do with a definitive guide with the answer to this and such questions as: tablets on an empty stomach and what are the exceptions?and, how many folic acid tablets per week and when? just for starters.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Ju,
The highest I reached with mtx was20mg, now on 15mg and humira.
I hope the increase works well for you, it certainly sounds as if you need the extra help!
Good luck with getting the little one to sleep!
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I'm sure I've read somewhere that 25mg is the maximum for RA.
Paula
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 74
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Hi Ju,
I have been on 25mg of Methotrexate for just over two years, along with Sulphasalazine and Hydroxy. Do sometimes get the sickness after taking it and the next day, along with the tiredness. However blood result wise have tolerated it well. Hope the increase works for you, and that you too don't have any problems with it.
Take care
Candy
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Rank: Advanced Member Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Thanks for all your lovely replies - I think I will stick with the GP's opinion - thinking about it, she did show me the shared care protocol once and it did say to have bloods done monthly so I will carry on doing that. Fortunately my GP's surgery has their own phlebotomist who is lovley and who I am pretty much on first name terms with given all my trips to and fro as you can imagine! It's great being able to book an appointment to get bloods done rather than waiting around at hospital for ages with a bored little one!
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Ju,
My GP prescibes my MTX because we live in rural area etc and after seeing him last week it works like this, I'm still getting to grips with this regime! I get my bloods done about a week before I'm due to run out then they check the results and if they're OK he'll prescibe me another 4 weeks worth without seeing me. If not he'll check with rheumatology before prescribing me any more. It's comforting that they take this much care over prescribing and checking things, hope your increased dose does the trick. I'm still on 15mg and I was hoping I'd feel better than I do but I live in la la land sometimes and then the sulky teenager comes through for a tantrum! Luckily reason prevails after a while.
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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I've been told the max dose is 25mg, then if that doesn't work you go down the road of combinations. Just learned this from my nurse last Thursday. Sara - I'm no expert but like you I didn't feel like I had made as much progress on the 15mg as I was expecting. My blood results showed I needed to increase the dose because the RA Isn't under control even though generally the swellings had reduced and the stiffness had improved. I then learn that the bloods my doctor takes each week only monitors my live function and not the inflammation factors? So I had a different test taken this Monday (which I still do every fortnight at the moment) Apparently the GP Doesn't check for everything in the blood tests, for cheapness? The hospital bloods are different. You might need an increased dose? I'm no expert as you know I was only diagnosed about the same time as you. Hope this helps?  Julie x Good advice is best followed by the art of listening
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Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Julie,
My surgery and GP are really good and do the PV, CRP and ESR tests just before I have a rheumatology appointment so the results are available for them when I go, also saves them doing the tests. The GP is supposed to do them every 3 months anyway. My GP seems really clued up on RA, so I feel very lucky as it doesn't seem to be the same for everyone. My bloods show that the disease is under control but the pain in my hands and feet tell me otherwise. My GP said that the joint damage I already have will always give me gip and yes rather than the 3 hours, or not at all some days, to get going in the morning its only 1.5 hours now and the swelling is down a lot. I think my expectations were just too high about how I would be or are they too low now? The MTX is not a painkiller but some people report as being pain free so maybe I should ask again. Back to see the Rheummy nurse early May so its on my list already! Also got an orthotics appointment on Monday so hoping they will help in the absence of bionic feet. I had to chase round a bit, referred to Derriford because I go to Rheumatology in Tavistock, then because I live in Cornwall passed on to Cornwall PCT but then lovely appointments clerk took my word for it even though the referral had gone astray and booked me in for Monday only 4 miles away! Bloomin' marvellous! Fingers crossed (if I could)
Sara
x
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Rank: Advanced Member Groups: Registered
Joined: 10/21/2010 Posts: 69 Location: North Devon
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Hi Sara It's me again. I get so confused when people say that they feel better on such and such or worse or whatever. I was the complete opposite to you. I thought I was better than my bloods were saying! I take a buckload of painkillers now, my nurse told me that's what they are there for, take 'em. So as well as co-dydramol 4 times a day (8 tabs)I take 1 400mg Ibuprofen three times a day. At first I was really groggy but I find I am fighting through the fog and things are getting better. What do you take? Hope you feel betterer soon x Good advice is best followed by the art of listening
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi there, I was on 25mg for some time and had no side effects at all. I only had to reduce when Humira added. The chemists always used to comment on the high dose so I had to assure them that the prescription wasn't a mistake. I agree with others that it would be better to stick to monthly bloods until you are used to the change. Good luck!
Julie x
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Ju,
I have been on 25mg since January this year. I was first diagnosed in May last year and was started on 20mg weekly with no Folic Acid. Then in September last year reduced to 15mg and folic acid introduced. Unfortunately had an infection and had to stop MTX, then started again on 15mg and FA but the RA returned with a vengence, increased to 25mg in January, and have recently had less pain free days and feel its kicking in.
I also have naproxen which has been increased to 500mg.
No really bad side effects, loss of appetite for a few days and tiredness.
Anne x
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Rank: Advanced Member Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Well - I had my extra tablet on friday night and found no difference at all so was much relieved!
I forgot to say I'm already on combination therapy, I take Sulfasalazine and Hydroxychloroquine too along with Diclofenic and Prednisolone - shake me, I ratttle! - so I expect if I get up to 25mg MTX and it's still not sufficient then I will be going down the anti-TNF route.
Ju x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Glad to hear that Well done
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Ju
Seems odd that you have to increase if you haven't had any problems. Did doc give you a reason or maybe it was to do with your blood count.
Sheila G x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi all
Can anyone tell me if it is possible to have RA and stay on the same drug and same dose forever. I know it is a degenerative desease but is it inevitable that we will worsen or can some people be lucky and remain pretty active.
Sheila G x
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