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Date: 21.06.2010
From: Robyn

Subject: New to Forum, Have you been on Methotrexate for over 30 years,

Trying to find out what the long term side effects of Methotrexate are, as I could be on it for a very long time!
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Date: 21.06.2010
From: paul

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

30 years, thats a long time. How many years have you been on it now?

I'm not sure there will be anyone on it that long on here, but with new drugs coming along every so often i am sure you'll not be on MTX that long.

I've been on it, on and off for 7 years and now find it totally toxic to me, lots of sickness and nausea. So last week i am now off MTX and moving on to Anti-TNF.

regards

Paul
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Date: 22.06.2010
From: Robyn

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

I've had RA for 10 years since I was 26 (just after having my son). I've managed so far on Ibuprofen and Diclofenac when I've needed it. Had a bit of joint movement in my fingers and toes. The doctors have been trying to put me on Methotrexate for a few years but haven't succeeded yet!!
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Date: 22.06.2010
From: paul

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

If you have RA i would really go on something like MTX that could help. Ibuprofen is really bad for your stomach and i would steer clear of it.
Ask your Rheumy Doc about new drugs like anti-tnf and see if you can get on them but most likely you will first need to try MTX or another older drug.
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Date: 23.06.2010
From: sally

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Robyn, Paul is right. Not only is ibuprofen bad for your stomach, it doesn't protect your joints against damage. That is what decided it for me as I was reluctant to go on it as well.
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Date: 23.06.2010
From: Robyn

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

I really don't take Ibuprofen very much and if I do I always have omiprazole with it but thanks for the advice. I've watched my mum who's had RA for over 40 years now with hardly any treatment simply because of her chest problems (she has bronchiectosis) She has never been able to take any of the usual medications, she has had joint movement obviously but she's relatively fine and keeps herself fit. That's the reason I'm asking about methotrexate as I've seen that I can have a lifetime free from feeling sick, and any other side effects the drugs have and I would like to know the very long term side effects as when you're young you don't want to be taking something that you're not sure of for many years.
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Date: 26.06.2010
From: Abbie

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

I think you need to bear in mind Robyn that everyones Arthritis takes them differently and all meds take everyone differently.
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Date: 26.06.2010
From: Angela

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Robyn,That is interesting about your mum.
Do you know whether she has had persistent high esr and crp throughout her 40 years?
I ask this because thats the only thing that keeps me taking mtx, is it scares me that more damage is being done all the time my results show high,and also my heart beats really fast all the time when I dont take it,and I keep getting out of breath,(i know this because I have come off it, then gone back on after a couple of months)but once it kicks in it becomes normal, dont know what thats all about.
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Date: 28.06.2010
From: Robyn

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Angela
I'm not too sure about the esr and crp I'm sorry, she's really not one for going into the hospital for any tests unless she has to! It sounds like the mtx is helping you and I'm sure it must be really scary for you having all the other problems. If like Abbie says everyone reacts differently to it, it certainly seems to be doing the right things for you. Take care
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Date: 29.06.2010
From: Janice

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Robyn,

It is from my expertise in arthritis reseach and experience with my mother's previous OA conditions that I would like to suggest not to use MTX for so long time.

As you may already know, MTX is a drug prescribed by physicians because of possitibility of serious toxic reactions (MTX is an anti-metabolism of folic acid).

It is reported to cause liver fibrosis and cirrhosis after prolonged use and also causes lung disease (such symptoms as dry and nonproductive cough) at doses as low as 7.5mg/week.
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Date: 30.06.2010
From: Robyn

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Thanks thats really helpful to know Janice. A lot of people don't seem to know or don't want to talk about the long term effects it may have.
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Date: 30.06.2010
From: Marilyn

Subject: Doctor wants me to start Methotrexate as salazopyrin isn't working

Hi, Had RA for 18months I am finding difficult to come to terms with this disease. Just read about the side effects of Methotrexate and don't like what I read. Has anyones hair been affected by this drug and does it make it thiner.
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Date: 30.06.2010
From: Anna

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Robyn,
as much as I respect your decision to do what is right for you and your body, I just want to post this in case a newbie reads it and gets worried about their medication.

You're quite lucky to have had RA for 10 years without it doing too much damage, most people would have serious joint damage and possibly permanent disability without treatment for 10 years.

While methotrexate IS a scary drug, most of the scary side effects you read about happen at the MUCH higher dosages given to cancer patients. In fact mtx is the drug that RA patients stay on the longest (though Im not sure anyone's been on one med for 30 years, I think I read someone post on a forum somewhere they'd taken it for about 20). Everyone reacts different to meds - some have no side effects, some have a bit of sickness that settles down, others feel awful on it. But you'll never know unless you try and you might find that you achieve remission on it - wouldn't that be wonderful?? You're still so young, even though not quite as young as me (24) and that's a hell of a lot of years to live through, you need to protect your joints from erosions.

Also it's not like the hospital will just give you mtx and leave you to it. You have to go in for regular blood tests and if there's the slightest danger to your liver or white blood count or whatever they take you off the drug.

Sorry for the long rant, but please please don't be scared of the tiny chance of side effects. The scarier thing is RA itself and the chances of that harming you are MUCH higher than mtx.

I hope you reconsider, or at least if someone's reading this post that they don't make the decision to not take their medication because they're afraid of 'what ifs'.

I hope you find something that works for you - there's loads of medications apart from mtx, good luck!
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Date: 03.07.2010
From: robyn

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Anna
I apologise if I for one minute scared anyone and never wished to. You're right I have had a few things happen to my joints and methotrexate works for many people. I respect them all for going onto any drug. I've just been brought up a bit differently and I have always avoided them. I may try it as soon as my little girl starts school. I have three altogether and sometimes it can be very hard work! I think I will stop posting messages sorry if I upset anyone
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Date: 11.11.2010
From: Tracey

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Marilyn,
Yes it has definitely made my once lovely thick hair thin after being on it for a year.
I started off with 7.5 mg for a few weeks then 15mg then increased to 20mg weekly the last 6 months after still having flare ups.
I 've decided that i'm gonna stop taking mtx for this reason, hopefully another drug will be efffective without the hair loss.
Tracey
:)
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Date: 12.11.2010
From: ScaryFeet

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Marilyn
I've posted a reply re the hair loss on another post which you may / may not find helpful...please think twice before stopping the mtx without a replacement drug - please speak to your Rhuemy soon..........

Robyn
Please don't stop posting on here as I for one have NOT been scared by what you have said. This forum is for everyone and as long as everyone respects each others views there isn't anything to be worried about.

Hi Anna - Good post, well done...........

Hi Angela - I've just come off mtx, still on leflunomide and waiting to start anti-TNF (hopefully) but I'll be interested to see whether my ESR & CRP change in the meanwhile due to the mtx working its way out of my system - I hadn't thought about it until you mentioned it above.

Hi everyone - hope you don't mind me having put all my answers in one post! Its too early in the morning to be doing so much adding up on individual answers!!!

xxx
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Date: 12.11.2010
From: Rach

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Robyn

I was diagnosed with RA in June of this year, I have been on MTX since then and really feel the difference (I practically feel normal except for a bit of stiffness in the morning and night). I couldn't walk, move or even take a shower before I was put on it. It enables me to live a relatively normal life which I need to do as I have a 22 month old son and I am only 36. My mum wouldn't take drugs and she has had RA 16 years but she is really deteriorating now. I am only on 10mg and have no side effects (touch wood) whatsoever.

So I guess what I am trying to say is I would rather be on MTX than not be able to get out of bed!!

Good luck with your decision though and each person should make up their own mind.
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Date: 14.11.2010
From: Dalton

Subject: Re: New to Forum, Have you been on Methotrexate for over 30 years,

Hi Rach

You sound just like me! Im 35 with two young children, youngest being 2 and I was diagnosed when she was 8 months old. I take 20mg of Methotrexate and also 4 sulphasalazine every day (plus others) but I dont have any side effects to the methotrexate at all. I take folic acid 6 times a week to deter the side effects of methotrexate. Ive been on it about 10 months now and felt a little sickly at first but I dont find it causes any side effects apart from a bit of a headache on the day I take it. I'd rather be on medication than have permanent bone damage in the future but obviously everybody it different.
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