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Date: 11.01.2010
From: Verity

Subject: Methotrexate

Oh my god since taking my MTX last Thurs night Ive never felt so horrendous. I had a stomach upset that can only be described as 'explosive'! (sorry to be graphic but its truly horrified me!) I had to take Friday off work and camp in the bathroom. Slept for the rest of the time. Today I went into work and had to come home because Ive been throwing up all morning, also slept. Ive never had such terrible side effects off any drug! I have Consultant on Weds thank god so hopefully they'll do something for me.
Anyone else had such a strong reaction to it?
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Date: 11.01.2010
From: bsk

Subject: Re: Methotrexate

hi Verity, i started on 5mg last week and was ok, bit of an upset stomach but not bad. Take 7.5 tonight, fingers crossed. They should be able to give you some anti sickness tabs and something to protect your stomach.
Hope you feel better.
Sally
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Date: 11.01.2010
From: Jeff Dandy

Subject: Re: Methotrexate

Hi,
I've been taking the drug now for some 5 weeks and have also been prescribed Folic acid as a counter to the side effects.
I do sympathise with you as I know that the effects can be bad ... but for me I've had no side effects at all to speak of.
Maybe they've put u on too high a dose straight off ... I know mine has been ramped up over the period ... but again, I'm taking it as part of a drugs trial with Etanercept for my RA.
If u have had such a violent reaction to the drug, then you should contact your Specialist right away and NOT wait for the next scheduled appointment ! MTX can in certain instances have quite damaging effects on some of the body's organs so it IS very important to get on top of ANY reactions quickly !
I hope things improve for you.
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Date: 11.01.2010
From: gary

Subject: Re: Methotrexate

sorry your not feeling to well verity but as jeff mentions DO NOT wait for your appointment and ring the help line as they will be able to advise you.
i have been on methx for 2 months now and have recieved no so effects as yet,but saying that i recieved a letter from my gp this morning to book another blood test as my LFTs results seem to be to high. im hoping its not because of the mtx as i have been great since taking them.will have to wait and see what the next results are.
take care all
gary
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Date: 11.01.2010
From: Verity

Subject: Re: Methotrexate

Hi guys, thanks for your support. Im on 25mgs. Been gradually increasing over the last 3-4 months. Ive been on and off methotrexate for the last 7 yrs and have never reacted like this before. Gonna leave it til weds for my appointment as I don't take another dose til after then anyway. Will find out if im going onto Anti TNF also. Could be an interesting appointment this time! Have injected MTX in the past and it didn't have side effects so maybe they'll put me n that instead.
Its funny, the only things that settle my stomach are sweet things that would usually make me sick!
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Date: 12.01.2010
From: sandra

Subject: Re: Methotrexate

hi verity, i was taking MTX in tablets and every time i got up to 7.5mg i became feeling sick, but they wanted to increase it as it wasnt improving arthritis so put me on injection of 20 or 25mg cant remember that night couldnt stop throwing up, it was wourse than the sickness i got with pregnancy thought it would improve next week but didnt was told to stop taking it until i saw doctor, hope they can help you tomorrow, and glad to hear someone else find sweet things seem to help with sickness,but not on it anymore! Anti TNF best thing since sliced bread ha ha
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Date: 12.01.2010
From: Verity

Subject: Re: Methotrexate

Hi Sandra. Im worried that theyre gonna stop the MTX for me but they would probably put me straight on Anti TNF instead wouldn't they. I hope so anyway lol
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Date: 12.01.2010
From: shaz

Subject: Re: Methotrexate

hi verity i been on mtx since last march,usually on pill form of 25mg but side effects was so bad constantly sick headaches and so tired so after 8wks of this they decided to put me on injectable have had 2 so far at 20mg and so far so good no sickness nxt wk back on to 25mg so got my fingers crossed that it stays the same but the thing i noticed this last couple of wks is that i seem to be having a flare up of aches and pains everywhere dont know if that down to reduce dose of mtx or not but going to mention it this thursday when at hosp also i having real problems with my stomach getting cramps and bad acid dont know if any off this connected, when u where taking injectable did you have any stomach problems also got my blood results today and my esr has gone up to 30 lol
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Date: 12.01.2010
From: KayJay

Subject: Re: Methotrexate

Verity I don't know anything about this medication but you say you feel better if you have something sweet ? Has your bloods ever been tested for Diabetes ? Just a thought ......
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Date: 12.01.2010
From: Verity

Subject: Re: Methotrexate

Hi Shaz, when I had the injections I didnt have any side effects at all but I was a lot younger and couldn't cope with injecting myself (This is why I came off them, young and didn't have a clue what was going on. I took myself off it all completely). Hopefully your flare ups are caused by the decreased dose of MTX, prob your ESR is linked too. I hope it settles for you when you go back to 25mg. It just goes on doesn't it! If its not one thing its another!

KayJay, Ive never thought of diabetes being a problem because when Im not on MTX or on a lower dose the sweet food thing is irrelevant so I just assumed it was MTX. I'll have a little look into it just in case and maybe mention it to consultant tomorrow but Im not to worried about it. Thanks though! Always wanting to hear others thoughts and opinions : )
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Date: 12.01.2010
From: Angela

Subject: Re: Methotrexate

Hi Gary,I have been on mtx for 4-5 months now, and had no side effects either.
I see your LFT level was high on last bloods? I take it you mean your ALT levels which is what my guide to blood says,Normal is 10-50?
My last one came back at 63 so I got a phone call from the GP to, they are going to see what my next one is before they take action, which is Monday 18/1.
If yours is before mine I would be grateful to hear what it is, cause hopefully I want mine to correct itself to as I think I am getting benefit from thew mtx.
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Date: 12.01.2010
From: Verity

Subject: Re: Methotrexate

Is ALT the state your liver is in? Because mine has been creeping up the last month. Still in the OK barrier though fortunately.
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Date: 12.01.2010
From: Angela

Subject: Re: Methotrexate

Yes Verity, This is what it says on my guide to blood sheet. An elevated result can be an indication of liver problems. Could be a result of medication. Will allow to go to 10 before we need to stop medication.
Glad yours is ok.
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Date: 12.01.2010
From: Verity

Subject: Re: Methotrexate

Good luck with your test. Hope it doesn't mean you have to come off the meds : )
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Date: 12.01.2010
From: gary

Subject: Re: Methotrexate

hi girls
since taking mtx i have had 3 blood test.
lft results so far have been.AST/ALT..50..39..101
ALK PHOS. 72..71 103. as you can see the last results has shot right up. i dont know what the levels should be but having a letter from gp suggest that there not good.
angela.i have to go to gp for blood test on friday 15/01. it takes a day or 2 for results to come back so will post results on here. next rhummy app is on the 25/01 so dont know weather i will have to wait till then or if gp will contact me if any problems. will keep you informed
take care all
gary
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Date: 12.01.2010
From: gary

Subject: Re: Methotrexate

forgot to say i expect the beer aint helping .lol
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Date: 12.01.2010
From: KayJay

Subject: Re: Methotrexate

Oh you blokes !! [ lol ] :0)
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Date: 12.01.2010
From: Angela

Subject: Re: Methotrexate

Hiya Gary, Got my bood sheet out again lol,
ALT Normal is 10-50
I meant to say allowed to go to 100 not 10 before we need to stop medication.
Yours is definately high, yes it might well be the beer, have you thought of giving it a rest and seeing if it changes just until your next test? (I know its hard lol)
ALK Phos .. is Guide to normal liver function. Normal rate 20-140
Can be elevated in bony inflammation.
Will also be elevated in active inflammation. Look for persistently elevated levels.
My last 3 results were 111..105...112. (mmh shit),mind my ESR and CRP is always high which shows active inflammation.
My ALT is 26..43.. 63 so its on its way up, and I haven't touched a drop of booze for at least 20 months.
Cheers Gary let us know how you get on.
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Date: 19.01.2010
From: gary

Subject: Re: Methotrexate

hi all hope you are all well.
just had a call from my gp,blood results are still to high and said to stop taking the mtx.need another blood test in 2 weeks to see if any change.dont know the readings yet,will pick up my blood card later and post results.have an app with rhummy next monday so will find out where we go from here. was hoping bloods was ok as i have been great on mtx and dont wont to go back to how i was before.as for the beer im not a big drinker,rarely drink at home and have only had 2 pints in the last 2 weeks,going to make up 4 that now im not taking the mtx ha ha.
take care all
gary
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Date: 19.01.2010
From: gary

Subject: Re: Methotrexate

back again. just piked up my blood card.
gone down slightly. ast/alt now 78 from 101 and alk phos now 93 from 103. anyone know what meds there likely to put me on if i have to stop taking mtx.
right im off for a pint ( only joking )
take care
gary
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Date: 19.01.2010
From: Angela

Subject: Re: Methotrexate

Thanks for letting us know Gary.
I dont know what they might put you on, maybe biologics??
Maybe it was only the pints after all, and you will be able to stay on mtx.
Let us know what happens as I guess they will contact you again to discussthe matter.
Take Care
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Date: 24.01.2010
From: Rob Jones

Subject: Re: Methotrexate

I've been on and off MTX for 12 years now (I'm 28 now). I'm currently on 10 mg per week (in combination with 10 mg per day Leflunomide).

I presume you're taking your MTX after a big meal, if ever I take it with a light snack I get a dicky tummy.

I seem to have developed an increased resistance to it, the more years I've been on it. At first 5 mg made me feel ill for a week but I've been up to 15 mg and but then I had to stop taking it because my white blood cell count went really low and I got ill.
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Date: 24.01.2010
From: Angela

Subject: Re: Methotrexate

Hiya Rob, Yes I always take my mtx on Monday evening after a big tea, i take it combined with sulfasalizine at the moment.
I was advused to do that on the forum, and I have not had one side effect, (touch wood)
It is interesting to know you have been off and on mtx, and about developing a resistance to it. I always thought that once you got a resistance it was time to move on to another dmard or biologic.
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Date: 26.01.2010
From: Rob Jones

Subject: Re: Methotrexate

Hi Angela,

When I mentioned resistance, I meant from my stomach rather than the effect it has on my blood/joints. That being said it is less effective than it used to be which is why I am on combined therapy now.

My reasons for being on and off MTX vary. I had glandular fever once and a few occassions of flu type symptoms. I also tried to control my RA with diet alone (with my rheumatologists approval) but that failed after about two months when the MTX left my system.
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Date: 26.01.2010
From: Angela

Subject: Re: Methotrexate

Hiya Rob, That is another interesting topic trying to manage your RA with diet alone.
I aim to try that once my ESR and CRP goes right down and shows signs of stability.
I have heard of it coming back after the mtx is out of the system though with many people.
Did you take suppliments and nutrients as well as diet control?
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Date: 27.01.2010
From: Rob Jones

Subject: Re: Methotrexate

I've tried cod liver oil and glucosamine on and off but never noticed any difference, good or bad, in my symptoms. They're more for general joint care rather than RA I think so shouldn't do any harm. I once spoke to a dietician who told me that certain foods contain inflammatory agents, some of which affect different people in different ways. I tried many different exclusion diets to see which food types affected me. I now exclude them from my daily diet. Occasionally I treat myself but pay for it the next day or two. With my MTX and leflunomide I need a decent diet to control my RA. Drop me an email if you want any other info on what I've tried. Rob robjoenz@hotmail.com
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Date: 27.01.2010
From: Angela

Subject: Re: Methotrexate

Thanks Rob, I am away for the next few days but will definately email when I get back.
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Date: 27.01.2010
From: Rob Jones

Subject: Re: Methotrexate

No worries, have fun :-)
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Date: 29.01.2010
From: Kirsty

Subject: Re: Methotrexate

Hey Verity I have been on 20mg of methotrexate for nearly 2yrs now along with anti tnf - infliximab. I took it orally initially but was violently sick for 2days after i took it and lost a lot of wgt as well as feelign dizzy and faint all the time my consultant switched me to injections which i now do myself and i have no side effects at all. I would def try and get back on the injections. I was told that wen you go on anti tnf they will try to keep you on meth aswell as the two work in combination. I have found them really good in combination so hope it works for you too :-)
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Date: 29.01.2010
From: Verity

Subject: Re: Methotrexate

Hey Kirsty, I went to my consultant about it and she asked me to try again the next week but take them half in the afternoon and half at night. Also that she thought it could have been a bug. Ive been doing this for the last couple of weeks and (touch wood) things have been going a lot better. I still get sickness and a bit of a tummy upset but its nothing compared to what it was. Phew! Ive been told if It does get worse then to go back and theyll do my DAZ scoring again for anti TNF. Its confusing because ultimately Id like to hold off with the anti tnf until im really really desperate but then i dont wanna waste my younger years being in pain. blag!
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Date: 01.02.2010
From: Jill

Subject: Re: Methotrexate

Hi Angela how high does your CRP get? tc Jill x
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