methotrexate question: Hello everybody am reletivley... - NRAS

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methotrexate question

louinna profile image
16 Replies

Hello everybody am reletivley new to this, been diagnosed with RA for a few months now and been on methotrexate tablets for nearly 3 weeks now at the moment i am on 6 tablets and slowly this increases to 8 tablets and then 10 tablets i'm on 2.5mg, am off work sick due to my RA and have been off 6 weeks and still in complete agony in my fingers and my right foot, no pain killers actually work and the ones that do make me drowsy and make me feel like a zombie and hate living in a zombified life, just wondering when the methotrexate starts to worrk and hopefully with that the pain reduces so you can live a fairly independant life as am stuck indoors nursing my RA, i'm 37 and hoping my life quality improves with the treatmnt and so just wondering if anyone out there goes onto have a independant life and can continue to work whilst taking methotrexate

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louinna
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16 Replies
Beth58 profile image
Beth58

Hi Louinna, YES you can continue to work once your RA is under control. Some of the pain meds do turn people into a zombie but once your body becomes used to them those side effects do ease. Don't give up on the idea of returning to work, if and when the time comes to leave you'll know it and there are benefits you can claim to make life a little easier financially.

Have you spoke to HR they can do things to make your working life a little easier to cope with, like provide aids in the workplace or reduce your working hours until you feel better and your meds are working properly.

Good luck hope your meds kick in soon.

Beth xx

louinna profile image
louinna

Thanks Beth for the support sometimes it gets me down as i desperatley want to return to work but unfortunatley my RA is not for letting me, i have a reletivley good boss who is pretty understanding so am sure wen and if the time comes when i retur to work they will be understanding if i need to go part time until i feel i can go full time,

helixhelix profile image
helixhelix

Hi Louinna

It will get better! Three weeks is very early as MTX can take 3 months or so to work (sorry!). For me my magic week was week 9, when side effects started to die away as did much of the pain & swelling in my joints. Each of us is different, but these are very slow acting things so do try to hang on in there. Polly

louinna profile image
louinna

Thankyou the strange thing is that i dont seem to of had any side effects yet like people say like feeling sick, tiredness, etc am wondering if my dose is low? or if when i progress onto 8 tablets and then the 10 tablets if this will happen then, am a little confussed sorry x

Custard profile image
Custard in reply tolouinna

Hya Lou,

I wouldnt worry too much as not everyone gets the side effects, and for some who do they pass after a few weeks. I didnt have any at all for the first few weeks, the nausea and headaches kicked in eventually but didnt last too long at all.

Also splitting the MTX dosage into 2 or 3 during the day REALLY does make the world of difference. Initially I took MTX at 9am 3pm and 6pm but now as my body is used to them just twice 12pm and 6pm :)

There have been times when I have forgotten to take the earlier dose so have taken everything at once but noticed I was feeling headachey and rough the next day. So for me at least, splitting the dosage does work. It was my consultant who suggested Fri as MTX day, that way you have Sat & Sun to recover IF you do experience nausea.

:)

Custard profile image
Custard

Welcome Lou,

I was prescribed steriods to tide me over until the MTX kicked in. This allowed me to continue working and it really did help enormously with the stiffness pain and swelling, the only pain meds I required were paracetamol. Talk to your GP or Rheumy about them as even in the short-term you might find they give you some relief.

Also do a search of the site for wax baths for your hands and foot. I found when the pain was too much resting the painful area on a hotwater bottle for 15mins followed by a cold pack for 5mins then back to the hotwater bottle helped LOADS.

I understand your lifestyle fears most of us have had the same ones... I havent taken a day off work since my diagnosis and continue as previous ( less alcohol and a bit more sleep required nowadays though :D )

Some revision is required, but yes indeed you can continue to have an independent liffe. Its very hard for some of us to deal with but RA isnt a death sentence. Nor do you automatically become disabled and bedridden. This flare will pass, you will improve and eventually you and your consultant will find a med combo that works for you, for some of us this happens sooner than for others but stay positive its not all bad news.

The members of this site are excellent when you need to let off steam or have a yippee day!!

Take care

Joy

louinna profile image
louinna

aww thankyou for your lovley up lifting and positive messege its really cheered me up, i'm at the doctors tomorow so am going to discuss having the steroid injection (have had it before) to see how i go with that until the other meds kick in, its nice to know people are here on this site to offer los of lovley help and support x

Yes things will improve.. concentrate on getting well and your gp can sign you as fit to go back to work in reduced hours as your first step when you are up to it and you can take things from there xx

Hello Louinna welcome to this site - it's a great place to come and escape from all the everyday worries of life and get advice about RA as you will have already discovered!

I've just had my 3rd dose of MTX with dinner but my dose is half of yours - just 3 tablets at the moment. I am having no side effects beyond feeling very tired for 24 hours after taking it, but then my starting dose is much lower so I guess that's why.

I have had a few rheumatoid nodules spring up on my hands since taking it and think it must be down to the MTX rather than the RA but might be wrong here - it could be just a coincidence. Also my hair seems quite dry and frizzy compared to normal and i seem to be moulting like mad but my OH says I always do so maybe i'm just being paranoid!

Like you I've noticed no difference to symptoms yet but am hoping to sometime soon - as Polly says I don't think it will be that quick as my hands have been so stiff and painful now for ages that I can't expect miracles from this one drug that quickly.

My trouble is mostly in my hands, wrists and elbows at present although I've had knees, ankles, feet and shoulders all affected at other points prior to diagnosis. Re NSAIDs my GP would only prescribe me Ibuprofen x400 mgs to be taken 3 a day at mealtimes - and when I stick to that I'm usually much better with the pain and stiffness, but on days when I just can't bear to pill pop it all comes roaring back with a vengeance. I guess I'm lucky that ibuprofen and co-codimol do give me a break - not total but certainly they make a big difference and without them it's hellish. I also have between 10-20mgs of Amitriptyline at night which I find helps a lot with sleep. If things kick off I have got enough Prednisolone to take for a few weeks to tide me over but it gives me mood swings and insomnia and I put on weight which makes me more depressed so I prefer to avoid it unless I have no other option. I have found that I don't wake in the night in pain nearly as often since I was told to include the extra strength ibuprofen in my daily drug intake so if you aren't taking them it might be a good idea to ask your GP?

Good luck - Tilda x

louinna profile image
louinna

Thankyou once again everyone its good to know i am not alone with this desease and am trying to remain positive troughout all of this and you guys are helping tremendously xxxx

julieporter profile image
julieporter

Hi

Just to say hello

I'm on MTX and it does take a while to work but i feel that it's given me my life back.I'm now able to work and do a lot of the things that i did pre RA so keep your chin up ,the first few months are the worse and it will get better !

Take care

Julie xx

louinna profile image
louinna

lovley messege thankyou Julie x

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi Louinna

Just to confirm, MTX can take 3-12 weeks to start to work, and another 3 months or so to get to it's full effect, which is why they normally try you on a drug for 6 months to see if it works. However, they can add other drugs to this, and as Custard says, sometimes they will offer you steroid tablets or injection to help tide you over while you wait for the MTX to work.

So, although you shouldn't be concerned if it's not helping until it's been 3 months, you could start to feel better any time now.

Also, in answer to your question about doses, typical doses for MTX when prescribed for RA are between 7.5mg-25mg (some hospitals only go up to 20mg). It is a good sign that you are not having any side-effects. If you start to get any nausea etc as the dose increases then as people have said, there are things that can be done, such as increasing the folic acid/changing when it is taken, anti-nausea tablets or injections, but often the body gets used to the increased dose with time, and hopefully the side-effects if you get any will be mild.

Kind regards

Victoria

NRAS Helpline & Information Coordinator

Treesha profile image
Treesha

Hi just wanted to say hello and welcome to our extended family! Yes things will improve at some point. With the correct meds you will get your life back so try and stay positive. This site has been a godsend to me where I can ask any question however trivial without feeling a fool. I am lucky that MTX hasn't given me too much of problem and like tonight I add celebrex NSAID to help with pain so as far as RA is concerned I am good just now. You will be too so just hang in there. Good luck. Xxxx

fizzy profile image
fizzy

hi, I can relate to a lot of what you have said, and also to alot of advice given....I have been on MTX for a year now, with limitted effect, but luckily little side effects. I have recently switched to self injections, so just waiting to see if they are more effective....I am getting nausea with the injections though....i think it does take a while to get the drugs right, I still waiting!! With regards to pain relief, I can't take anything with codeine in as it make me so constipated that is worse than the joint pain....but I have started taking regular paracetamol,....I take 2 in the morning and 2 at night, everyday, along with diclofenac....and so far I think its helping, its certainly taking the edge off! I hate taking tablets, and I try to be strong and not take what i don't need, but I've succumbed! You don't get medals for being brave, you just end up miserable!! Good luck, try to keep positive! x

fizzy profile image
fizzy in reply tofizzy

oh, forgot to say, I'm similar age to you, with young kids and a pretty demanding job, and I'm doing a masters degree....its hard juggling everything, but I'm determined to not let it get the better of me...I've got too much life to live!!

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