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Date: 04.02.2010
From: shaz

Subject: mtx injections

hi all well 6 wks into these mtx injections now,had another today but at least they dropped it back down to 22.5mg as cant cope noway with 25mg was like something out of the omen last wk puking everywhere and feeling pretty poo,anyways so far so good not been sick but still getting pretty bad headaches and feeling really tired literally no energy at all,does anybody else get headaches and tired for days after mtx or is it just me thats difficult,last wks bloods were all over the place as well dont know about this ones yet as dont get results back till tomorrow but while they been messing around with my mtx they been all over the place,sorry for moaning not like me but feeling bit fed up at min if not aching and limping i puking just seems to go from one to other,but solalala love to all
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Date: 04.02.2010
From: Verity

Subject: Re: mtx injections

Hi Shaz, Im on 25mg of oral MTX and get sickness, headaches and tiredness for about 3-4 days after taking it. Apparently this is normal........great! Do you use any anti TNF or just the MTX? Surely, not being able to handle MTX is a good enough reason to be put on this?!?!
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Date: 04.02.2010
From: shaz

Subject: Re: mtx injections

hi verity i am only on mtx been on it for past 11 months now they started me off on oral mtx at 15mg then slowly increaded it but once we got over 20mg on oral i started being really ill so they dropped it back to 20mg but when i saw the specialist he insisted that it had got to go back to 25mg even though i explained that i couldnt take that dose so thats when we started on injectable and i still cant take the high dose so now will just have to wait till they make there minds up what nxt got to go back again nxt wk for another 22.5mg and take it from there,i been asleep most of day feel really poo,dizzy and sick.
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Date: 04.02.2010
From: Verity

Subject: Re: mtx injections

I can totally understand, its bloody awful isn't it. I hope you feel a bit better soon. If you can, just sleep. I don't know if its the same for anyone else but I find that sweet food helps settle my stomach temporarily (not for long mind) but its a bit of respite. Hang on in there, coz they can't leave you like this for long. Its not practical if nothing else! If anything your prob able to do more without it!

xx
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Date: 04.02.2010
From: shaz

Subject: Re: mtx injections

i keep telling myself that,but after 11 months its beginning to wear thin,trouble is i know i am better off on it then not because the time between switching from oral to injectable i wasnt taking anything and i could tell the differance, i soppouse i come this far with it will just have to wait and see what happens and if not happy speak to specialist when i see him nxt,i have tried talking to rheumy nurse but they just dont seem to have any answers but thanks verity for your help hope you ok lol
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Date: 04.02.2010
From: kat

Subject: Re: mtx injections

I think MTX affects everyone differently. When I was first diagnosed I was put on MTX and the lady in the hospital bed next to me was on the same as me. She was puking everywhere and I was ok except for a bit of queasiness. See if you are allowed to take something to settle your stomach. I've been on MTX for 9 years and have tried injections and oral...your body does get used to it.
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Date: 04.02.2010
From: shaz

Subject: Re: mtx injections

thanks kat hope you right about body getting use to it i been taking ant sickness from the very start but they dont stop me from being sick,just have to keep trying till we can find a dose or combination of drugs that works for me and stays down xx
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Date: 05.02.2010
From: Jill

Subject: Re: mtx injections

Shaz Verity is right u know, how comes they havnt put u on Enbrel or the like? seems u r their bliddyguinea pig! unfair, give me their number and il pretend im ya Mum and ask what the fook is going on??? I mean it, I wld LLOLOLOL....shaz u support so many of us in here, and u have supported me like val, and moony sooo much....alway think bout yu....this mtx lark is getting silly, tell them that u are NOT going any higher than 22 ok.....since ive been ill, i havent taken my MTX(4 weeks now) dont want to go back on it, and altho im off it, becos ive also been unwell for diff reasons etc, im not sure if its done me any good.....makes me sick too, seeing my bio nurse 11 feb, will talk with her then.....dont think its helped me, cos my discs and tendons are still degenrating!! whats the point.....won t come off enbrel tho......take care gals and lots love to Shazzzzaaaaaaaaaaaaaaaaa (((((hugs 4 shaz))))) xxx
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Date: 05.02.2010
From: shaz

Subject: Re: mtx injections

hi jill just to say i lot better today only had headache this morning when i woke up which is alot better then last wk i didnt even have the energy to get dressed friday last wk,been thinking about what you said about refusing to let them keep trying to push my dose higher and when i go on thursday this wk i going to tell them i not being messed around anymore and that i can cope fine on 22.5 and see what happens and if they start trying to push me higher i going to threaten them with you haha no seriously i am going to try to find out what they are playing at especially when they know i cant take it and i am going to ask them about biologicals but my problem is my rheumy nurse is not the most friendliest person and when i ask questions he tends to brush them aside without answering theres been lots of times i have tried to find stuff out and he dont answer me just sort of brushes over the matter if you know what i mean lol xx
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Date: 07.02.2010
From: Jill

Subject: Re: mtx injections

OK. Shaza, take a m8 with u, one that will talk up if the twit wont ansa U?I dont think there is anyone else in here that is on that high dose.....! goona ask a question.....Gang that are on Methtrexate...whats ya dosage? and teh highest u have ever been on???

Shaz ting is, thye know u cant cope with that, Y cant U go on Enbrel Bios....dont get it....think they r trying to save dosh....do u have a good GP? maybe he can write to yur rhummy, becos at the end of the day, its UP to the rhummy to offer u the Bio meds...NOT the Nurse!! sound slike a pillock to me, wish I cld go with u, Id get answers out of the buggger!!!!.....anyway sweetie, rest up, fatigue goes along with the meds...xx
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Date: 07.02.2010
From: Lynn B

Subject: Re: mtx injections

I am on 15mg they have just put it up from 7.1/2.
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Date: 08.02.2010
From: Verity

Subject: Re: mtx injections

Im on 25! (Even though it says up there lol)
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Date: 08.02.2010
From: shaz

Subject: Re: mtx injections

hi jill been decided after family meeting haha that the nxt time i see specialist not nurse cos like you say they can only act on what they told to do my mum is going to come with me and between us we going to get some answers as to why i cant go on biologicals and reduce mtx,cos like you say i sure it all comes down to money thats why i have had to keep coming to hosp for 8 wks till they can sort the dose out as they dont want to have delivered 10wks supply if it doesnt suit me because of the cost and the waste that i know for definite as rheumy nurse told me that but still going to ask on thursday when i go how you doing anyway not seen you on fb yet lol
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Date: 08.02.2010
From: Verity

Subject: Re: mtx injections

Good luck with that Shaz. Makes such a difference having someone there with you : )
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Date: 08.02.2010
From: julie

Subject: Re: mtx injections

I am on mtx have been for 5 years should have it at 25mg couldn't cope tried injections and was still very sick, now i am on 5mg but i am also on ANTI-TNF. My nurse said you have to have been taking mtx and leflunomide for a year before you can go on ANTI-TNF. I now only feel sick when i've had my mtx and very tired for a couple of days. Hope you manage to get something sorted soon
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Date: 08.02.2010
From: shaz

Subject: Re: mtx injections

thanks for that julie makes me feel a bit better knowing there isnt just me that is struggling with mtx oral or injection as for having to be on mtx for a year i will have been nxt month so just wait and see what happens at clinic now
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Date: 08.02.2010
From: julie

Subject: Re: mtx injections

Good luck shaz let me know how you get on
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Date: 08.02.2010
From: Jill

Subject: Re: mtx injections

Hi U can get ANti TNF meds if u are Just on MTX, I was, so u dont need to be on leflunomide to fit criteria to get Enbrel and the like....I think if u have been in MTX for a year, and nowt has changed significantly, and pain is same etc, u deserve to apply for assesment of that med.....
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Date: 08.02.2010
From: JILL

Subject: Re: mtx injections

Shazza ive been tellin u tha for agessssssssssssssssssssssssss LOLOLOL....glad u have had family chat, so glad ya mum is going with U, im sure she will support u, I believe i have been fooked about cos the cost of the ENbrel etc is approx £10,000.00, so good luck there Sha, at long last U will get answers, and since U have been on here, U have also learnt that lots of us Dont have to be on that higher dose, its daft, that hosp is trying to save cash!! xx
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Date: 10.02.2010
From: julie

Subject: Re: mtx injections

Hi shaz i don't know if this will help but i have just been given some imformation on a new drug from my r/a nurse called tocilizumab and it says you may be able to come off mtx while having this treatment.
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Date: 11.02.2010
From: Jill

Subject: Re: mtx injections

Shazzzaaaaaaaaa, ive come off MTX last month, suppose to see bio nurse today, cancelled due to snow!...anyway, when I last saw my rhummy with shoulder surgeon, he said MTX makes ppl unwell on daily basis, he said to wait tho until mri scan results come back, but cos i was feeling sick few weeks back, couldnt cope with it....takin Just Enbrel, he did say that I could take Just Enbrel, and U know my bliddy body is falling apart, so im giving it a try, cant see any diff yet, either way, cso I still feel blidddy sick with this blockage in my chest...... oh well, will ssee, when i get better, I will c how I get on, and due a diary, cos I can go back on MTX when ever I Want....... youir case does make me mad shazzza, never heard so much Poo about them making u take such a high dose! said b4, think they r avoiding u going on the ANTI TNF etc.....what ya reckon?? btw got Puta working now, only began on it today, but will get back to fb soon, kids want it, so gotta get booted offf here LOL.... but will catch up with u for sure on FB...tc xx
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