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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 74 Location: North Lincolnshire
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I consulted my rheumy about the headaches and palputations i've been having the past few months, so he decided to take me off mtx for a few weeks to see what happens.
So far headaches are pretty much gone! but still having palputations.
So now the headaches are gone, without the methotrexate, my body is starting to make anti-bodies against the etanercept. and basically everything feels like it's heading for another big flare up! i'm so scared im considering taking the methotrexate again seen as my mock exams are nearly over.
has anyone else had a problem with long term use of mtx?
i'm scared of going back to square one with medications.
hope you're all well.
love Hannah
xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi Hannah
it is lovely to hear from you again I have missed you
what can I say well here goes
I have been on MTX for 14 years at the begining I really did have a bad head it took a while for my body to get use to this new drug
my RA doctor reduced the MTX
after a few months he increased it slowly it took a while for me to get use to it the but it did work for me
I hope this helps you
please try not to worry too much about the drug as worrying can set off a flare
thinking about you
take care
Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Hanna , yes i was on methotrexate about 3 years ago but had to come off it as it was affecting my liver, know what you mean about stopping and starting drugs ! ive just stopped my cellcept and am waiting for rituximab to kick in x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Hannah,
Lovely to hear from you.
I have had to stop mtx before because of problems with my liver but started it again and the problems did not recturn This is quite often the case, so if you go back onto your mtx it doesn't mean that you will definitely get the headaches back.
Hope you feel better soon.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Hannah,
Lovely to hear from you.
I have had to stop mtx before because of problems with my liver but started it again and the problems did not return This is quite often the case, so if you go back onto your mtx it doesn't mean that you will definitely get the headaches back.
Hope you feel better soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Hannah
Just caught up with you on this thread.
I've had the same problems as Doreen but re-started the mtx with no ill effects.
Much love
Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Hannah - you look even more fabulous on your new avatar. I haven't had any problems with MTX yet but would dread the thought of what I'd be like without it. Maybe you could suggest phasing it back in gradually with your rheumy?
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Having a break from the mtx is a good idea...it will remain in your system for a while..
Hoping the exams are a walk in the park!
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Hannah
Sorry you're having problems with MTX. I had to stop taking it because of liver probs. Why don't you have a chat with your GP? He may be able to help you decide.
Good luck with your exams!
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Hannah,
Lovely to hear from you and sorry about the problems with taking MTX. Can't really offer an opinion, as I was not on it for long, and agree that it's best to have a chat with your GP or rheumy.
Wishing you all the best with your exams,
love,
Barbara
XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi, Can I just ask ? when I take my methotrexate (7.5) by injection, the day after I am usually very tired. I have been on it for at least 3 years now, is this a side effect others suffer ?
John
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Rank: Advanced Member Groups: Registered
Joined: 12/6/2009 Posts: 74 Location: North Lincolnshire
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Hi John,
i havent really noticed that the methotrexate causes tiredness, but i do know that part of RA is fatigue anyway, so it might just be that? x
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Rank: Advanced Member Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi Hannah, thanks for the reply, I have had my metho stopped three times due to liver function, longest I was of was for a month, but back on again now for quite a while. My problem happens when they try to put me on anything over 7.5 (3 attempts) When I have gone back on it I have not had any other bad effects apart from the tiredness. We are know trying to combine it with other drugs, The old tummy could not take the tablets so I inject, which I hate, but I prefer it to letting my good lady loose with the needle !  John.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear John,
Yes it can definitely cause an overwhelming feeling of tiredness.
I do hope you find something which you can tolerate. What other meds have you tried?
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi John
I think it's the RA itself which causes fatigue. Mtx should, in theory, have the opposite effect but hey, who knows?!
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi hannah yep im currently being kept eye on regarding liver reaction,also headaches and theplapitations they stopped for me when reduced to 15 mg 20 seemed be just that bit to much. not stopped it yet but porbarbly will in march due to wanting prepare for child. john ra canc asue most ohrrid fatigue but the tiredness is a side effect on list-depends how severe rheumy told me fact i couldnt keep eyes open that was enough to reduce it 5mg. sorry to see you had to stop mtx 3 times. tak care hannah all best for exams. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Hannah - I thought it this may be useful. It's from the ARC website and is a list of side effects from MTX
In some patients methotrexate can cause a feeling of sickness, diarrhoea, mouth ulcers, hair loss and skin rashes.
Taking methotrexate can affect the blood count (one of the effects is that fewer blood cells are made) and can make you more likely to develop infections. If you develop a sore throat or other infection, a fever, unexplained bruising or bleeding, if you develop jaundice (eyes or skin turning yellow), or if you develop any new symptoms after starting methotrexate, you should tell your doctor or rheumatology nurse specialist straight away. If any of these symptoms are severe, you should stop methotrexate and see your doctor immediately.
Rarely, methotrexate causes inflammation of the lung with breathlessness. If you become breathless, you should stop methotrexate and see your doctor immediately.
If you have not had chickenpox but come into contact with someone who has chickenpox or shingles, or if you develop chickenpox or shingles, you should stop methotrexate and see your doctor immediately as you may need special treatment. This is because chickenpox and shingles can be severe in people on treatment such as methotrexate which has effects on the immune system. Therefore you may require antiviral treatment.
Most doctors prescribe folic acid tablets to patients who are taking methotrexate as this can reduce the likelihood of side-effects. It is often recommended that folic acid should be taken once a week only: some doctors advise that it should not be taken on the same day as methotrexate.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Apparently 3% of all people taking mtx have any problem with lung disease, phew.
RE the tiredness, on taking it, as you were saying John, I think it can cause tiredness which is why it is best taken at night time, although the hope is to try and alleviate some of the tiredness caused by rheumatoid.
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I really do wonder, sometimes, Amanda, whether the drug companies DO list ALL the known side effects ie tiredness on their bumf?
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I think just the fact it is a toxic drug may cause some sort of tired feeling on taking. But of course this won't apply to everyone.
The info leaflet for mtx is THE scariest one I have ever had the pleasure to read...it remains locked in Mark's desk drawer! LOL
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