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Date: 25.01.2009
From: Kylee

Subject: New metatrexate user please can any1 give me advise

Hi i am due to start metatrexate i have read upon the side effects but can any one tel me how you feel when you first use it does it make you tired or ill. Do you lose weight. X
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Date: 02.02.2009
From: richard

Subject: Re: New metatrexate user please can any1 give me advise

hello

I have been prescribed methatrexate for rhematoid arthritis in the past.

I have found that it can take several months to properly take affect.

When it has taken affect it does reduce the frequency and intensity of flare ups.

I was prescribed Folic acid to be taken 3 days after I took methatrexate.

If I missed taking my methatrexate I was advised to wait until the next time I was supposed to take it.

If I missed taking my Folic acid I took it as soon as I realised I had missed it.

I found missing my folic acid caused me excessive stomach acid.

You should follow advice given regarding overstress of your joints.

It is human nature to want to push yourself and do a lot more physically than you can usually do, especially when you are enjoying a prolonged flare up free period.

Family, friends or workmates may be ignorant or dismissive of the consequences of Rheumatoid Arthritis. You may find it necessary or helpful to encourage them to read literature about it.

Employers who are often ignorant or dismissive of the consequences of rheumatoid arthritis and may push you to do more than is safe for your joints.

My advice is, never exceed safe limits (which you will learn to judge through experience)and you will minimise flare ups and probably prolong the effectiveness of the methatrexate.

I have discovered through personal experience that the above is true.

Rheumatoid arthritis is a disease that is covered by the Disabilities Discrimination Act.
You may need to do some research about the Act and inform your employer, if you require adjustments to do your job, or if you feel you are being discriminated against because of your disability.

I had chronic flare ups occasionally while taking methatrexate and needed a general injection of Depomedrone 120mg at Rheumatology outpatients to relieve it.
the relief given by Depomedrone lasted 4 to 5 weeks.
It can seem better than the methatrexate, however, I was told that it could only be given 3 or 4 times a year because of the side effects.

The detail of my experience may differ from yours.

I advise you discuss any information I have given, with your specialist or general practitioner if you are tempted to vary your medication or treatment based on it.
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Date: 05.02.2009
From: Claudine

Subject: Re: New metatrexate user please can any1 give me advise

Hello Kylee. I was diagnosed with RA in November and am now in my 9th week of using Methotrexate. The first couple of weeks were not too bad, just a few mouth ulcers and a couple of rashes on my arms. After increasing the dose to 12mg per week I began to experience more prolonged side effects, a severe headache, nausea, dizziness, lack of energy, tiredness, a big disruption to my menstrual cycle and just a general feeling of feeling quite grotty. Was told by my dmards clinic to increase of intake of folic acid which made a huge difference. I am now up to 15mg per week and taking the folic acid the next day as opposed to two days later which I think is really helping. I still feel quite tired but generally speaking 100% better compared to a couple of weeks ago. My steroid injection of a couple of months ago is wearing off so I hoping the mex will kick in soon. I have lost about five pounds in weight but loss of appetite is part of the RA as well so I am not sure that I can put that down to the mex. Let me know how you get on. Good Luck.
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Date: 10.02.2009
From: Louise

Subject: Re: New metatrexate user please can any1 give me advise

Hiya

I've been taking methotrexate for 10 years now. Along with another drug I've found it to be really good at controlling my RA. I've been on changing doses. It varies from person to person but I found on a lower dose I didnt have any side effects. I'm now on 20mg a week and find it does make me feel sick the day after i take it and I get stomach upsets (you have to take folic acid on the days when you arent on the metho it helps stop side effects). I get occasional mouth ulcers. If the sickness/stomach upsets are too bad they can inject this drug (something they have suggested to me).

You have to have monthly blood tests while you take it.

From speaking to people who take Methotrexate the most commons side effects seem to be the feeling sick and mouth ulcers.

I am very tired at the moment (I dont know if thats because they have put up the methotrexate or if its because my RA is playing up) so I cant help with the tiredness question. As for losing weight - i've neither gained or loss weight on this drug. I found that some drugs made my face look puffy etc but this one didnt.
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Date: 17.02.2009
From: wendy burnett

Subject: Re: New metatrexate user please can any1 give me advise

hiya, i've been on methotrexate for 9 years now and have found it extremely beneficial, i agree that the early symptons when starting can be a bit naff but after a few weeks the body gets used to the drug, i had the nausea which lasted about 2 hours the day after taking it and this went on for about 4 weeks and then stopped, i also take folic 5 days that between doses, i recently had to stop for a few weeks and very soon noticed a huge difference and i didn't like it so i was really pleased when i could start again, only now i'm back to having nausea again, but it's a small price to pay for the relief that it does give you, i also get small mouth ulcers but they only last for a few hours and that's it, i know it differs in people but i certainly would not like to be without it again, i take 17.5mg weekly, hope this helps,
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Date: 25.02.2009
From: jill

Subject: Re: New metatrexate user please can any1 give me advise

Hi

I started Methtrexate, no side effects, but it does take up to 3 months to kick in, however, methtrexate didnt work alone, so I was given eventulay Enbrell alongside methtrexate, and that has helped me a lot, less flare ups etc, I didnt lose weight, because Most of us cant exercise, often weight gain due to inactivity, helped my fatigue and gave my brain a break from feeling depressed

hope this helps
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Date: 09.05.2009
From: Heken Reilly

Subject: Re: New metatrexate user please can any1 give me advise

Hi I have been taking Metatrexate for 5 months now after a period of on and off due to a couple of infections but if I'm honest I am not feeling any better in fact of late I have been feeling worse. I am also aware that the tablets are interfering with my hormones as in I am experiencing breast tenderness and my breasts are defo getting bigger which I might add is not what I want.Has anyone else experienced this.
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Date: 10.05.2009
From: Jill

Subject: Re: New metatrexate user please can any1 give me advise

Hi Heken

Yep I get that side effect also, they r so tender, dont want it either LOl, this drug effects us all differently

Stay well

jill
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Date: 10.05.2009
From: Jill

Subject: Re: New metatrexate user please can any1 give me advise

Kylee Hi there

the message Richard left for u to read is in my opinion is totally Correct! Everyone is different, but most of us seem to feel about the same taking that....the drug does not Kick in for at least 3 months, I usually feel Tired day after and feel a bit sick, but hey, I would rather that, than Not take the Meds, Im also on Enbrel injections also, Please carefully Read Richards message becos i couldnt express it like he has, hes bang on with the info he gave you

lets us know how u get on, we r here to support u

take care

love Jill
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Date: 16.05.2009
From: phil

Subject: Re: New metatrexate user please can any1 give me advise

im 38 and had RA since 2001 and started first with metatrexate and it didnt work and gave me bad sickness and impotance. they put me on arava which was great for many years but then just stopped working so ive just started metatrexate injections with arava.still feel sick for a couple of days but need to get it under control as its getting me down now
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Date: 18.06.2009
From: nikki

Subject: new methotrexate user also.

i began with symptoms in january, we are now in june and i am going to be starting methotrexate on 30th, i went from 'normal' to totally immobile in 4 months. the info iv been given is a tad scary. how old is everybody else, im 34.
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Date: 19.06.2009
From: Amelia

Subject: Re: New metatrexate user please can any1 give me advise

Hi nikki,
i found out i had RA when i was 21 and i am now 25 it was very scary for me too at first. I have 2 sons aswell 7 and 5 so day to day things were a real struggle. I had Pleursy (can't spell lol) for 9 weeks at 21 and after that i noticed my feet were swollen then gradually my fingers and wrists began to swell and the pain was unbearable it took several months going back and forth to gp's and hosp etc.. to finally get a diagonsis and to start proper meds, i was put on sulphalzine at first but i had an allergic reaction so i had to then go a few more months to start metrex8 and it has made a massive diffrence to my life it takes a while for it to start working but it is deffo worth it i am on 17.5mg but i am going back to see if i can get it increased as my feet have started hurting again :(

Good luck with starting your meds and hope they help you
Let us know how you get on

Amelia
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Date: 19.06.2009
From: Jill

Subject: Re: New metatrexate user please can any1 give me advise

Nikki Hi...im 49(a young one tho LOL) my probs started b4 I was 24... Please DONT be scared of going on Methtrexate, there r so many more positivve affects than the Bad side afects... the worse side affect I get is Tiredness, and unfortuantely teeth abssess, but that just me, we all react different, I am also on Enbrel injections, so my immune system is more compromised... I wld rather take those Toxic Meds than be without them.... remember theses meds we have, we r carefully checked, regular blood tests, etc... so dont be too worreid ok, they help stop degeneration of your Joints, focus on that part

Take care and let us know how u get on Jill x
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Date: 19.06.2009
From: Jill

Subject: Re: New metatrexate user please can any1 give me advise

Hi Amelia, Mt rhummy said 17,5(im on that) is high, he wont let me go higher :( and I have had degeneration etc since being on Mtx and Enbrel... need a Spine op(had one already) Oh well, might see what he says nxt time I c him

Jill
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Date: 19.06.2009
From: Amelia

Subject: Re: New metatrexate user please can any1 give me advise

Hi Jill

I went to the consultant a few months ago and he upped my methtre8 to 17.5mg i have been getting on with the dose fine but my Esr is still on the rise grrr! I also feel more tired but thats a small price to pay.
The consultant was saying the most i can take is up to 20mg and if the Esr and the stiffness etc.. carries on it would be the inject next not sure what it's called i get really confused by it all lol He said that would be last resort tho as the NHS don't like to give these out too ofter as it cost them 10k a year !!!
It's all still a learning curve for me even tho had a few years now i am sooo forgetful too which dosen't help ha ha

Amelia
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Date: 20.06.2009
From: Jill

Subject: Re: New metatrexate user please can any1 give me advise

Hi Amelia

Yes the injections cost ten grand a year!!..so must be the Enbrel hes putting u on...Im ok on that...no side afffects, but I do get fatigue... fingers crossed for u, im sure u will feel much better on it, takes 3 months tho to kick in xx
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Date: 20.06.2009
From: Sandy

Subject: Re: New metatrexate user please can any1 give me advise

Hi Amelia.
I am 38 and have had RA since I was 27. I am on MTX 20mg, Humira (anti-TNF injections) plus various painkillers/anti inflamms as and when. I have to take folic acid 5mg 6 x week to help with the side effects you can experience with MTX. I have to say I was also very scared aabout initially starting the MTX but that was about 8 years ago and it has generally been fine! You do have to give it a while to kick in and like many drugs it 'suits' some people more than others. My weight only plummets when my RA is very active and is fairly static on the MTX. Good luck.
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