Worried about methotrexate

[Ironingbored]

I am just about to take my first dose of methotrexate. I have read a lot of posts that talk about unpleasant side effects and I am worried. Is there anyone who takes it without side effects or is it inevitable? I have been given 7.5mg orally. I don't really have a choice as the steroids are wearing off and the arthritis is flaring but I am looking for a bit of hope.

[trish1957]

Hi

I've been taking MTX for 3 years now and I've been absolutely fine on it. I take 25mg a week plus I inject myself with another drug as my condition isn't stabilised yet. I normally take mine just before bed . I was very nervous about this drug but it's keeping me going at the moment.

Good luck

[Amhoarten]

No two people or condition are the same. It didn't work for me but there are so many people who it literally is what keeps them pain free. A friend of mine calls it her wonder drug. Without it she cannot function. I'm on sulfasalazine which currently I'm tolerating but equally there are many who get awful side affects.

I hope it works for you. Like all of them it can take a good few weeks before you get the benefits. xx

[helixhelix]

I've been taking 20mg for 6 years now with no problems - and it controls my RA very well. I was terrified the first time I took it, sat and stared at the pills for ages so it's not just you! But really don't worry, and 7.5mg is a nice low dose to start on.

[Moomin8]

Hi- I take mtx. I've been lucky so far with no problems. At first I felt a bit nauseous and tired but this soon passed. Having said that, I'm still flaring. Good luck ☺

[Matilda7]

It's a pretty tiny dose so you're unlikely to have any side effects.....hopefully!

[Downtime]

Hi, I've taken it for 2 years. I had some nausea and stomach ache at first but it was tolerable and now I don't have any problems at all especially if I split the dose and take it after food.

[nomoreheels]

Nearly 7 years for me. I didn't think too much about it, I just wanted to be better controlled & stuck to to the websites my Consultant recommended so I was fully prepared when I started. That was on 15 mg tablets which I took as 2 with breakfast, lunch & dinner. About a year later I changed to injections because my dose was increased to 20 mg & I had side effects, my Consultant at the time was hesitant to increase my folic acid so I went back down to 15 mg. I'm currently on 17.5 mg & folic acid 6 days. Your Rheumy's started you on a low dose, that's good, as I said I started on 15 mg. Do remember that forums are usually full of people looking for help, those doing well are getting on with their lives. Try to concentrate on it working & not possible side effects.

[Kb5417]

Oh god this disease is horrible physically and mentally !!!!

I cried when it was confirmed that I had ra. The nurse sat patiently and waited for the wave of emotion as the realisation and relief that the effect of my diagnosis had on me passed. I was in pain and I wasn't imagining it (like I'd chose to imagine that !!!)

Then it was down to the serious business .... which drug ?!?

I like many had read up on the treatment available and focused on the negatives.

I like others have now learnt that yes these drugs do have side effects ... but ... I have to weigh up the pros and cons.

Pros I can move and I'm not in chronic pain EVERY DAY !!!!

It slows disease progression and damage

Fingers xd it can in some cases go into remission

Cons side effects with long term use vs not taking these meds at all

However you know your body best and there is multiple drugs you can go through to help. Listen to the rheumies advice re life stiyle and warning signs and trust in yourself.

And don't feel like a hyperchondriac if you notice something not quite right and speak to your team they'll let you know if it's to be expected or not.

If methotrexate isn't for you there is alternatives. Speak to your rheumy team, go for your bloods and let them know what works or doesn't.

I wish you all the best in your journey x

[sylvi]

I have had no effects from mtx at all,so not everyone has side effects darling. Been prepared for it to take a while to be effective as well they say about three months to fully get into your system.xxxxx

[AgedCrone]

Hi, ironingbored

Every single person has a different reaction to Methotrexate.

For me it was wonderful........so take your dose after dinner on your chosen day.......then go to bed & forget it.

Remember to take your Folic acid as directed & put out of your mind any ideas it won't suit you!

I really hope you settle on it & you're back running marathons very soon!!!

AC

[gwynedd]

Hi ironingbored

As you can see from all the positive responses here mtx doesn't deserve the bad reputation it sometimes gets. I've been taking 15 mg a wk for about 5 months now and besides some nausea and tiredness the day after I've had no other side effects. I understand that for some this isn't the case and they can have a bad reaction but in the main the majority cope well. Good luck and I hope these posts go some way to easing your mind. Xx

[Bookworm55]

I was put on 15mg methotrexate at diagnosis and was quite glad that I hadn't had a chance to read up on it beforehand. My RA started very suddenly and fairly severely and by the time of my consultant app I had pretty much decided that I would go with whatever was recommended.

No side effects on my current dose of 17.5mg although when I tried 20mg did have some so dropped down again with agreement of the docs. All drugs have some side effects - even paracetamol-so guess I would go with it with an open mind (plus folic acid!). As others have said there are plenty of alternatives if it doesn't suit you. Having said that, I have been almost symptom free since starting on it.

[munchkin]

I have been taking met in pill form for the past 10 years with no serious side effects. Please don't worry you will be fine.

[JEM95]

I worried like mad about it too, but when I was diagnosed I was in such pain I was open to trying anything.

Yes, I had side effects that were horrible but folic acid helps, as does injecting it. I inject on a Sunday night and sleep through the worst of it. I,'m pretty stable now with relatively fee side effects.

In the last three and a bit years I have had about 18 months of remission and feeling relatively good. I was doing fine then about 9 months ago needed the dosage upped to 22.5mg - it took about 6 months for me to feel OK again and I'm now enjoying another period of remission.

I generally do as I'm told in respect of my treatment, I trust my Rheumy team. Some things work, some don't but there are always alternatives to try. What is for certain is nothing happens quickly - often it takes months to notice a difference. Sometimes things work, then they don't.

Methotrexate has been a huge positive in my life.

Don't be scared, try it. If it doesn't work then it's 'next'!

[stbernhard]

I hope all the previous comments have helped to dampen your worries a bit. I did not get on too well with the tablets, but since I inject with the pen, I have no side effects at all. I also take 5mg of Folic Acid on the days that I don't take MTX. Hopefully MTX will work for you and help you to make you feel better and in control. All the very best.

[Tillie20]

Hi I have been on mtx for almost 10 months started on oral but had bad nausea now inject which works everyone different see how you get on x

[BoneyC]

I've taken MTX for over 30 years, few, if any side effects. It's been the most successful at slowing down my aggressive RA. No drug is perfect, but its top of my list! Good luck, you might be in the majority with no side effects.

[Aishafik]

Hi,

I too have been taking 20mg for 3 years now with no problems - and it controls my RA very well. I was terrified the first time I took it, was dreading about all the side effects, so it's not just you! But really don't worry, and 7.5mg is a nice low dose to start on. Be sure to drink lots of water and to regularly monitor the state of your liver through blood tests every 6 weeks. That's the best indication of how your body is reacting to MTX.

Take care and God bless.

[Paula-C]

I've been taking MTX for six years now and have had no side effects at all. I started on 7.5mg and worked my way up to 20g. I still remember the first time I took the drug. I thought I had got myself prepared for it but when it came to taking it I was nearly in tears. I took it and expected the worse to happen, but nothing happened. Every I increased to dose I thought something would happen but it didn't.

You have to realise that MTX is the most widely used drug for RA, have read somewhere that over 90% of people with RA have taken at sometime, so you will read more reports about side effects than other less used drugs.

You will be monitored by your hospital for several weeks with blood test making sure that things are OK.

Best of luck. xx

[mauritius21]

I have been on MTX for more than 2 years started on 15mg it was terrible just throwing up and spent time in bed weak as if I was going to pass out. However reflecting now how I was then not able to walk stand or sit . I had steroid injection and MTX increased to 20 . I still feel throwing up now and again. But however kept me going. Be brave and look at the positive effects . It works diffent for each individual. Take care.

was not able to walk at all

[selina]

HELLO to you. I've been taking methotrexate +sulphsalazine for over 7 years with

[selina]

Hello

I've been on mtx +sulfasalazine for over 7 years with very few side effects - all of which are manageable. The drugs have held back progress of this disease and I am aware how lucky I am to be able to tolerate them so far. Don't let the fear prevent you from keeping an open mind and working with the professionals to get RD under control. Good luck!

(pressed the button too soon on previous text)

[Joy_1]

A friend of mine was on 7.5mg for 22 years without any problems at all.

She did not take anything else only MTX and returned to the person she was before getting RA. She is now in her mid 70's and only in the last 6 months has needed to start taking Pred. but she is on a low dose.

I wish she all the best! By all accounts 7.5mg is a low dose so I am sure you will be fine.

[Marykate7]

I've neve had any problems, my gp used to say you could insult my stomach with anything!

[Ironingbored]

Thank you all. Such helpful comments. Especially that people with side effects are more likely to post than those without. Good point. That makes sense. I feel so much more confident. I took my first dose last night. I figured that I should just get on with getting better. Slept badly but that was my stupid joints hurting, not the tablets. Felt a bit sick, tired and headache today but not too bad. I am bowled over by all the kind comments. Thank you.

[Jane06]

I have never had any side effects and I have been on it for about 15 years now. Was up to 17.5mg in the early days but currently on 10mg as I am ona biologic injection now aas well. I have always taken tablets on a Fridaymorning with no stomach problems. You hear all sorts of horror stories on this site but I think it's only those oeople who are vocal about it. Peopke like me who are well controlled, don't bother to post anything! Good luck anyway.