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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Everyone... Just wondering what you think I should do. I have been on mtx for 16 months and the last few months have been self injecting 20mg weekly, I know it is helping as when I stopped for a few weeks the pain got much worse although I do still rely on painkillers a lot and cant sleep because of the pain in my shoulder. Anyway I think the 20mg is too powerful for me as within a few hours of taking it I literally cant keep my eyes open, my speech is slurred and I really cant function properly for about 3 days. Im only 6 and a half stone and think maybe its too strong for my system... I was ok on 15mg. Do you think its worth ringing rheumo dept or does anyone else feel like this? Maybe im overeacting  any help would be great as I feel really down about it all. Thanks off for a doze now  Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ceri,
sorry to hear you're feeling so tired ( can relate to this ) and it is so hard to make decisions when feeling like this.
i am on 20mg tablet form of Methotrexate and that doesn't make me feel sleepy after taking it, i take mine in the morning with breakfast.
if it were me yes i would ring my Rheumy Nurse, you know you're own body and if you're not feeling right on it then i think you have every right to question it.
i am new to this being diagnosed in June ... so no idea if it affects people re their weight.
has anything else been suggested for you as you are still in so much pain is my other question..?
come back and let us know how you are doing,
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010 Posts: 255 Location: hampshire
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So sorry you are feeling so rough. I certainly think you should contact your rheumy nurse. We all react in different ways to the drugs and they need to know what is happening. Good luck and take care. Sue
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I just wonder ceri-is it only AFTER you've taken the mtx you feel this tired? And also do you think your painkillers could be having this effect on you if you are having to take a lot? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Ceri Most definitely seek medical advice promptly. I had a lot of problems with methotrexate early this year and I have learned from my experiences that this is a medication one does not dilly dally with. Extreme tiredness as you describe would seem to be more than you might expect and slurred speech is a worry. My problems, although different to yours, were caused by an increase from 10mg to 15mg, I too was okay on the lower dose. Do get checked out! Lyn x P.S. Methotrexate does not offer direct pain relief as it is an anti inflammatory but perhaps a review of your painkillers might be worthwhile. Being in constant pain is very wearing in itself and with the availability of a wide choice of pain relief there should be something out there to do the job! Good luck!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Ceri,
I was feeling pretty rough on 20mg mtx, with extreme fatigue. I was thinking maybe I needed to increase it more but the consultant surprised me by saying I needed to decrease it because 20mg was too much for my weight and height. I was much better on the lower dose. I did not have slurred speech though, so you do need to ring your rheumy nurse asap to ask about it.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ceri,
Sorry to hear that things are not well with you.
You are the best person who knows your body, so I def would ring the Rhummy nurse and see what she says. It will do no harm and you will get the answers.
Let us know how you do
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Thanks everyone for your help and advice. Starting to feel bit better today but if same thing happens again next week will ring hosp on monday thanks again lots of love Ceri xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 1,035 Location: in a house
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get an O.T to write a plan /rotine for you .So day is planed with compleate rests done while having coffee etc ( the way you sit ) christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Ceri
I've just been reading the information leaflet given out with MTX because I've just answered another post about taking other drugs with it.
I've read something that might be of interest to you. This is for dosage for people who are having MTX for cancer and not RA but it does state that the doctor will calculate your dosage required from your body surface area.
Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010 Posts: 88 Location: Saddleworth, UK
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Hi Ceri,
I know I've come into this discussion a bit late but I too had an issue on 20mg of mtx. I was soooo tired I slept all day and night, only got up for a drink and a wee then back to bed. I felt dizzy, nauseous and basically rubbish for 3 days every week for 3 weeks until I rang my rheumy nurse as I was going on hols and didnt want to feel like that for 3 days out of 7! She told me to reduce to 15 mg.
She did mention that it doesn't matter how big or small you are as to what dosage you are on. She knew a 18st builder that could only tolerate 10mg mtx.
I hope this helps you. It helped me (sort of)
Lxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Thanks Louise.. I did mention to my nurse how shattered I felt but he thought it was more than likely down to the RA than the mtx! So like you were ,im useless for 3 days a week (not much better the other 4) going to start another drug with it soon so fingers crossed! Take care love Ceri
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010 Posts: 88 Location: Saddleworth, UK
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Ceri,
I hope this other drug helps. Are you staying on Mtx and mixing or coming off mtx?
Here's hoping for a burst of energy!!
Lxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Thanks Louise
Staying on methotrexate but theyll prob start sulfaslazine as well... How are you doing now? Are you still on 15mg mtx? x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Ceri,
i'm still not under control with my Methorexate yet having been on it since June 17th 15mg then upped it to 20mg 8 weeks ago, although my CRP has improved.
i go for my next Hospital appointment on the 30th of this month and i am wondering what they will add now.
let us know how you get on with the Sulfaslazine as and when ... hope it works for you.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Suzanne Yeah will definitely let you know how I get on... You and I seem quite similar, dont know yet if theyre going to try sulfasalazine, hydroxy or lefluonomide all trial and error really but see it as a next step on the ladder towards anti tnf as apparently where I live you have to have failed on 2 dmards first... but fingers crossed it will work, Its good that youre tolerating 20 mgs ok, Im getting better with it in the begining was shattered for about 4 days now its about 3! Keep battling on Suzanne and good luck with hosp appt at end of month xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010 Posts: 88 Location: Saddleworth, UK
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Ceri,
I am still on 15mg but they either want to mix it with hydroxychloraquine (which didnt work on its own) or change to Luthidamide! Or self inject - in other words they don't know!!
I tried sulfasalazine but was allergic.
Hope you have energy today! Take care Lxx
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