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Rank: Member
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Joined: 10/11/2010 Posts: 22
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suzanne_p wrote:hi Heather,
i think all Hospitals work differently ... so don't worry as the Rheumy Nurse has assured you she wants you to start on the 15mg, you have to somehow find faith that they are prescribing what they think you should be on.
i take it you are having Folic Acid as well, i take 10mg 2 days after.
good luck and let us know how you get on. Hi Suzanne I have been prescribed folic acid to take 2 days after. I will let you know how it goes Heather x x
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Rank: Advanced Member
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Joined: 8/1/2010 Posts: 255 Location: hampshire
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Hi Heather I have been on mtx and hydroxy from the start. I have 2 weekly blood tests to keep an eye on how I am reacting. I find it very reassuring and I keep a close eye on my blood results. The first 2 occasions they tried to put me up to 10mg my white count dropped so I had to go back to 7.5 but the 3rd. go seems to have worked. Theoretically I should be higher but I have been doing well on this dose. Before I started I had swollen knuckles but that has all gone now. I also don't have painful knees any more, just aches which I can cope with. We all react differently but it is definitely worth trying. I take mine on Saturday morning and usually feel a bit queasy on Sunday afternoon. I take folic acid every day except Saturday to help the queasines. I hope you have a monitoring book for your blood results. take care Sue PS. A piece of good advice my consultant gave me - research and become knowledgeable about RA BUT avoid the american sites - they will scare you.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Heather and Sue
I do agree with what Sue's consultant said about sites frightening you about RA. American or not, there is lots of sites that give wrong information about RA and when I was first DX I sat for hours with laptop on my knee on the super duper highway of the internet and I sacred myself so much with what I read and saw about RA. The only advice that you really can listen to is what your consultant tells you, after all he/she knows about your condition and can assess what is best for you.
I have just re read the article, there is several sections discussing various aspects and fears about MTX on the particular site that I mentioned and it just weighs up the pros and cons of taking it. Like I said it was reading this that helped me make the decision to take it.
Paula x x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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HiHeather
Me too.
I started on mtx back in May, having been on Sulfasalazine which worked for a while but then became less effective. I was VERY apprehensive, when I had my initial meeting and read all the literature. I was getting paranoid, watching for every little symptom! Now I just take it and forget about it. I'm glad to report that all is well- no nasty reactions except for the first few weeks when I couldn't drink tea or coffee for a couple of days after taking it- I felt a bit queasy. I've been monitored very closely, starting with blood tests every 2 weeks which then changed to every 4.My rheumatology dept has a helpline if I have any concerns and the day I picked up my first prescription, the pharmacist had a long, reassuring chat with me. ( lovely to know the support is there). I was started on 10mg to see if my body could tolerate it-it could, so it was increased to 12.5 mg. I take 5 mg of folic acid 5 days a week- not on the mtx day or the day after. It seems that diffeent hospitals recommend different doses of folic acid. I was already on 5mg every day before I started the mtx as my levels were low, so that's why I still take so much. So far, all is well with the blood tests. One bit of advice my nurse gave me was to leave at least a 2 days' gap after taking the mtx before having blood tests as it can affect the readings.
But- I'm fine and it has made such a difference. I haven't felt as good as this for ages- most days I am pain free- I do get the occasional mild flare, which I guess is only to be expected. Long may it last- I hope it all works out for you. Look after yourself- and let us know how you get on
Maria x
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Joined: 10/11/2010 Posts: 22
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Hi Maria
Thanks for the reassurance, I start taking it tomorrow so I'll let you know how it goes.
I'm glad you are doing well.
Thanks again
Heather x x
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Joined: 10/11/2010 Posts: 22
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Hi Paula,
You're right about some sites frightening you, some of the stuff I read absolutely terrified me!
I've calmed down considerably after finding this site as I've had so much re-assurance from people who felt just as I did initially.
Heather x x
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Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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You will be find good luck for tomorrow x
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Hi Rose Thank you. Heather x x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Heather Only just read your post and really hope everything went well yesterday and you havent suffered any side effects.. Im Ceri 42 and have been taking methotrexate just over a year the only main problem I get is tiredness (seriously shattered) lasts about 3 days. I take 20mg injections and hate taking it but it helps a bit with the pain so I persevere..Anyway really hope it helps you thinking of you take care xx
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Hi everyone, Thank you all for your help and advice. Well I did the deed last night and I'm still standing! I felt a bit queasy and odd throughout the night and today I feel shattered but apart from that not too bad!! Thanks again Heather x x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Heather,
well done !!
i think once you've taken the first dose it definately get's easier.
and you may just be feeling " odd " because you've taken the Drug and not anything more ... it's amazing just how powerful the mind is.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Glad you did it. The next time won't be so bad. I just throw them all in my mouth now have a drink and thats it. Every journey starts with just one step!!!!!! You've just started your journey of getting RA under control.  Paula x x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Sorry posted in twice.........laptop had a dizzy moment.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Well done Heather!
Let's hope this is the start of a big improvement for you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Good for you Heather! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Good luck with the MTX although I don't think you'll need it. Likewise I terrified myself reading 'helpful' information on the internet and actually refused treatment for 3 months, a decision I sorely regret. The first night I took it I cried I was so scared. Big fuss about nothing! I went up gradually to 17.5mg but it's not working great on me. I'm an awkward bugger so wasn't really surprised and will be mixing it with Leflunomide from next week. The worst I ever got was my first dose at 17.5mg and that was a little bit of diarrhoea, a little bit of tiredness and what felt like a mild hangover. Otherwise I was fine and going out and running around as normal. You'll be fine, believe me.
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Joined: 5/19/2010 Posts: 384
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Hi Heather,
My name is Anne I was diagnosed in May this year by the rhummy and the same day he started me on 20mg weekly MTX with no Folic Acid. It only took 6-7 weeks to kick in. Although it has now been reduced to 15mg MTX and 10 mg Folic Acid I have a feeling that it will need to be increased as the dreaded pain has returned. I have an appointment next week.
I really hope it works for you.
Anne
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