Date: 15.04.2010
From: Della
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Subject: Mtx
actually just had a read about the MTX and wish i hadn't to be honest i am petrified to go on it now after reading i can lose my hair finger nails etc and it can kill you OH! god can someone please give me some advice and make me feel better xxxx
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Date: 15.04.2010
From: Kirstine
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Subject: Re: Mtx
Honestly hun some of that might be true but if the effects were like that it wouldnt be used as widely as it is. When you go on it you have routine blood tests so if it doesnt agree with you they will know about it and will change things meds wise. Ive been on it for 5 weeks now and ive had tiredness (everyone seems to get that with it) and sickness( but appart from that its not causing any problems) if i continue with the sickness i can ether have my dose reduced or have the injections of it.
Everyone is differant so some people may never get a side effect, others may get several. Its something you will have to try for yourself.
I chose to start it because in the long run its one of the more effective drugs, in that it starts to work quicker an is sucsessful in slowing down or halting the disease in most people (thats what my rummy said).
See what everyone else sAys about it and got from there. Good luck x
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Date: 15.04.2010
From: KayJay
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Subject: Re: Mtx
I'm not on MTX but on Plaquenil. I saw the Rhuemie Nurse on Tuesday and she said if this does not work they will try something stronger. I said I might be scared to use one of the strong ones and she said don't worry her Mum is on them and she wouldn't let her take them if she knew they were unsafe.Like K says everyone is different.
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Date: 15.04.2010
From: gary
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Subject: Re: Mtx
hi della
i was on mtx for about 3 months and had no side affects whatso ever but it didnt work for me. have been on suffasulazine for 3 months now and it seems as tho thats not working as well. had a steroid inj yesterday and feeling much better already.
if u read the side affects on all meds u wouldnt end up taking anything so give it a go and try not to worry.
take care all
gary
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Date: 15.04.2010
From: Verity
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Subject: Re: Mtx
Hey Della!
Im on the highest dose of MTX and Im still here!
Tiredness and sickness are the main irritations with it unfortunately. If its any consolation, you can learn to live with it! lol Although to be fair its not working for me at the mo. It worked when I first started it, just didn't last.
Don't worry it'll be fine : ) xx
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Date: 15.04.2010
From: Sally
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Subject: Re: Mtx
hi Della, I've been on mtx abougt 14 weeks now but not working that well for me. Difficult to work out what is side effects and what is arthritis! I get very tired, rheumy thinks it's the disease. I felt I didn't have a lot of choice, either mtx or damaging my joints. Verity, what dose are you on? Rheumy nurse wants to put mine up (currently 7.5) and also steroids, said no to the latter and told her consultant was concerned about me getting chest infections as am prone so she decided against putting mtx up. Plan is to take more painkillers and see what happens! Bloods are good. Consultant is on holiday for 6 weeks so can't ask him. Not sure what to do. My right knee is bad today as is my right wrist but am getting about sometimes.
It's all a bit rubbish really isn't it?
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Date: 15.04.2010
From: Lynn B
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Subject: Re: Mtx
Hi Sally I am on 17.5mg of mtxt, at the minute and steroid injections every 6 weeks why did you say no to steroids (I dont know about the tabs? but the injections are brill, I GET ABOUT 3 TO 4 Weeks relieve from them, its absolute bliss... the pain doesnt go completely but my god you can tell the difference, tc xx
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Date: 16.04.2010
From: Sally
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Subject: Re: Mtx
hi Lynn, I've had too may steroids, both injections and tablets and the side effects aren't good. High blood pressure, fatty liver, water retention, weight gain, risk of osteoporosis,facial hair growth and more. My rheumy wants me off them too. I know they work but they are not the answer long term.
tc
xx
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Date: 16.04.2010
From: Verity
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Subject: Re: Mtx
Hey Sally, Im taking 25mg of MTX and just started etanercept on weds. Its easy to say that I feel totally and utterly shite on Thurs after it all on the weds! How are you doing? I used to have steroid injections quite a lot but I heard they can deteriorate the joint and lead to infection. Plus they didnt seem to work as well towards the end. Take care xx
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Date: 16.04.2010
From: Sally
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Subject: Re: Mtx
hi Verity, sorry you are feeling so rubbish. Must be the drugs. Are you feeling better today?Is etanercept a biologic? Scuse my ignorance but seem to want to find out about meds on a need to know basis! I'm up and down. My wrist is very painful today and my other joints aren't up to much either. I may capitulate and take more mtx. Will talk to my GP on Monday. She is very sensible! Trying to stay positive but it aint easy!
Wonder how Jill got on?
You take care too.
xxx
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Date: 17.04.2010
From: Abbie
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Subject: Re: Mtx
Hi Delia I've been on mtx injection for 6wks now and before that 7months of mtx pills. I started on pills 10mg for 3months then 12.5mg for 2months then 15mg. I'm now on 15mg injections going up to 17.5mg for four weeks then up to 20mg. Before I started it I was nervous of side effects but up until 15mg all I got was the tiredness and the classic day after headache. When got to 15mg I was nauseous 7days a week and sick most evenings so started taking it in two halves, half on a weds and half on a sun. Also on 15mg got reocurring mouth sores but increased my folic acid and now don't get them so there are ways round things. Also hair started falling out a bit on washing and brushing and became straw like but hair loss didn't notice and got great hair product for strawness. Only thing you need with mtx is perseverence. The pills can take up to 6months to kick in in some people. When got to 7months my pain was still real bad CRP and ESP not good so went onto injections. These start working after about 4-6wks. I'm pretty bad at mo so hence the oncoming increase in dose and my consultant is looking into Biologics because i'm in remission from my brain disease and he's not sure If Biologics will flare it up again. On the subject of Steroids, recently gone back on them (last Monday) and what a difference. I was on 80mg of pred from June 2007 to June 2008 then spent 10months coming off this was due to my near fatal brain disease. Since August last year I've had 4 depot steroid injections and am on my 3rd course of pred. The injections don't work anymore but the pred seems to. I know the side effects aren't pleasant etc but some you can prevent and some you have to weigh up what you'd rather, the symptoms of the disease or the side effects. I've put on 4stone since 2007 but eventually can loose weight, I take Adcal D3 & Alendronic acid to protect my bones, a low dose of Lisinopril for blood pressure and and for bits of facial hair and acne I've got good skin products and a pair of tweezers lol. But I totally respect the fact that everyone is different and with different views and emotions just didn't want people thinking steroids are all bad. I hate taking the buggers but love the benefits lol. Go well everyone XXX
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Date: 17.04.2010
From: Della
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Subject: Re: Mtx
hi everyone thankyou for all the replys and u have put my mind at ease a bit well i shall have to try it and see how i get on as i can't carry on like this. thanks again for your warm reply hope u are all coping ok take care .xx
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Date: 17.04.2010
From: JIll
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Subject: Re: Mtx
Hi Della Jill Here, we have known each other ages now, I think its time that U tried it at least....they watch u closely, and if the blood tests come back bad, they will take u off it, but Della the MTX is to help dampen down damage to your joints, and that is far worse in my book! as u know, im also on Enbrel Anti TNF...MTX alone hasnt worked for me......I havnt read those side affects taht u mentioned, however, im prone to getting absesses on teeth, some get mouth ulcers, alos Della, most ppl in here r on the MTX and havnt read anyones finger nails falling out....YOur a Tough cookie likeme, U will be ok, give it a go at least, have the best chance of recovery, If my child had to go on MTX, I wld allow them to, becos if it doesnt work out, thats fine, but give it a go....if U canrt cope on MTX, they can give u the Anti TNF like Enbrel, and there is harldy any side affects for me, all different I know...... Listen to your rhummy ok, not all the googles stuff, will scare the pants off u....we r soo looked after, bloods done every month, they watch the liver etc.....I lost my Hair long b4 going on MTX, and that was due to a major flare up.......let me know how u get on tc xxx
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