Methotrexate : I have been diagnosed with RA, my... - NRAS

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Methotrexate

Safado profile image
40 Replies

I have been diagnosed with RA, my rheumatologist has prescribed methotrexate, to be honest I am scared to take it, can anyone out there confirm that methotrexate works..or helps at all ?

40 Replies
Boxerlady profile image
Boxerlady

Sorry to hear that you've joined our club but you'll find lots of support and advice here.

Methotrexate is the "gold standard" medication and can be brilliant if it suits you; if it doesn't there are plenty of other options. It does take time to work and there can be some initial side effects but I've found them fairly minor and they have worn off after a few weeks.

You'll probably start on a low dose of tablets and build up; if they don't suit you, you can have a self-administered injection (like a pen) which is really easy to use.

I'm now on triple therapy - Methotrexate, Hydroxchloroquine and Sulfasalazine and have been lucky with all of them as far as side effects go.

Safado profile image
Safado in reply to Boxerlady

Thank you very much for the reply, after reading online about the side effects hair loss, nausea etc I am terrified to take it...but you have put me at ease thank you so much

Yes I take it. It is the gold standard drug. It worked well for a good few years on its own then wasn’t working so other drugs added now on s biologic as well . I still need to take MTX as the two work better together . Treatment is very individual what works for one doesn’t work for another but unless you try you will never know. I’ve had no major problems with MTX a few bumps but sorted after a tweak here and there, Any questions don’ hesitates ask the wealth of knowledge is fantastic on this forum.

Safado profile image
Safado in reply to

Thank you so much...I feel a lot better about taking it now....you have built up my courage to put the first pill in my mouth...I have been putting it of for 4 weeks...daft I know, but I was scared

bubblyalex profile image
bubblyalex

Hello. I was scared too and in fact started on Sulfasalazine first ... to no avail. Now on MXT max dose (I think). Bottom line for me... want my knees back so I’m now in the zone of ‘throw it all at me... I’ll do anything it takes ‘ 😊

Safado profile image
Safado in reply to bubblyalex

Thank you for the reply, I hate this condition and I too now have creaky knees.. so I guess I am in the same throw it all at me club

allanah profile image
allanah

Hiya Sasdo. Good on your doctors! They are giving you gold star treatment with mtx . Takes about three month to see the change but it changes many peoples lifes! Good luck and keep joining in on here or look at nras.org.uk for lots of advice

Safado profile image
Safado in reply to allanah

Thank you so much for that, good to know I am getting the gold star treatment .. three months seems a long time to see improvement.. but it will go quick I am sure !

MadBunny profile image
MadBunny

Hi

I started methotrexate 10 years ago, in combination with sulfasalazine.

( which had stopped working by itself.)

It has worked very well for me.I was terrified at first as I'd read all the info and the first time I took it I waited for the side effects to kick in.....and waited....but nothing happened.I have never had any problem with side effects and it has worked very well for me.I was advised to take it at the weekend, before I went to bed, so if I had any side effects it wouldn't affect work.I have also been prescribed folic acid to be taken 5 days a week (not on mtx day/day after).

I now take it with a biologic as it became less effective for me after about 6 yrs.

If I remember I think it took about 2-3 weeks for it to work.

.Like others have said , there's lots of help and advice on here.

All the best x

Safado profile image
Safado in reply to MadBunny

Thank you so much, you have really made me feel better, I was terrified to take it and have been putting it off...now feel much more relaxed about it...thanks again...🙏

MadBunny profile image
MadBunny in reply to Safado

You're welcome. I hope it works for you and that you enjoy the benefits I have.

Take care.

Safado profile image
Safado in reply to MadBunny

I hope so too...!!

Boxerlady profile image
Boxerlady

Have you also been prescribed folic acid? I started taking it once a week but it was increased to 6 days a week (not on Methotrexate day) which helped with the tiredness. Make sure that you drink plenty of water on the day and the following day 😉

allanah profile image
allanah in reply to Boxerlady

Good point

Safado profile image
Safado in reply to Boxerlady

Yes, I have been prescribed folic acid to take once a week.. I will take that the day after the methotrexate .. thanks for the tip about drinking plenty water.. is it best to take the methotrexate with food ?

Boxerlady profile image
Boxerlady in reply to Safado

I used to take mine after tea with the idea that I might sleep through any side effects - at least it stopped me over-thinking about them!

Safado profile image
Safado in reply to Boxerlady

Yes...I will do the same...I am worried about possible side effects...but as you say hopefully I will sleep through before I start thinking about that !

Summerrain14 profile image
Summerrain14 in reply to Safado

I take my MTX at bedtime after supper and have a big bottle of water on my bedside table too. I take mine on a Saturday evening as Sunday is my quieter day of the week where I can just take it easy.

Safado profile image
Safado in reply to Summerrain14

I was thinking to do the same as I work during the week.. thanks for the tip !!!...x

helixhelix profile image
helixhelix

I’ve been on MTX for 10 years now. No, I didn’t want to take it. Yes, I was scared. But it’s been great for me and I wouldn’t be without it now!

The biggest problem was having to wait for it to work!

Safado profile image
Safado in reply to helixhelix

Thank you for that...made me feel much better !!!!

Summerrain14 profile image
Summerrain14

Hi Safado, I’m sorry to hear you have joined our club too but you are in good company and amongst friends here.

I have recently just started taking methotrexate too, just taken my third dose. Very mild side effects for me so far. I was also feeling very daunted about taking it so completely understand. It is known to be the gold standard of treatment. If you do experience any side effects tweaks can be made such as the amount of folic acid you take or having it by injection instead. We all respond differently and many many people do very well on methotrexate but as Boxerlady says there are many options. I too take methotrexate with Sulphasalzine and have had minimal side effects with both so far. 😊

Safado profile image
Safado in reply to Summerrain14

Thank you so much for your reply...good to know you had minimal side effects...I read some terrifying posts on another forum about side effects which made me scared to take it.. your reply and replies from others here are really putting me at ease.. 🙏

nomoreheels profile image
nomoreheels

Hiya Safado, welcome. As has been said MTX is the initial preferred DMARD, I have been on it 11 years. Whilst we are encouraged to read the Patient Information Leaflet we do need to be aware on potential side effects. Thing is it's not a given we'll have any, certainly not all. That said realistically it could be you may have one or more of the most common ones & this is why we're prescribed folic acid, to counteract them. Often the longer you continue on MTX the less problematic they are, as your body gets used to the med, still, the folic acid is intended to keep things in check.

My first MTX dose was 15mg & I was told to take the tablets with food, so my Consultant suggested 2 tablets with breakfast, lunch & evening meal. That worked well for me, I guess not taking them in one go is less of a hit on your body. Some take them at night before bed but the concern was I'd have disturbed sleep, I'm not good if I do! I also started on one folic acid the day after which was increased to the day before as well when I had some hair thinning, which settled down. I've been injecting for 10 years, I switched over when I had an increase in dose & with that a few more side effects. Because of the change in delivery, straight into the blood stream so not going through the GI tract nausea or tum issues are usually eliminated. My present Rheumy recommends folic acid 6 days & I’m just a little more tired & less inclined to eat the day after, not a bother to me for the results it gives.

I hope you get on well with MTX, it can be a very good med, you'd have to wrestled me to the ground to come off it! Do let your Rheumy know if you do have any intolerable side effects though, if an increase in folic acid or reduction in MTX doesn’t help there are other DMARDs for your Rheumy to consider for you. Oh, & please try to resist googling about Rheumatoid meds, best to stick to sites such as ours, you'll receive honest replies which don't focus on negatives, or at least will give you support & experiences from those who actually take them so can give realistic 'reviews'. 😊

Safado profile image
Safado in reply to nomoreheels

Thank you so much for that information, very informative ...I did google before about rheumatoid meds...as you say, not a good idea and will just stick to this forum...thanks again for the reply, so kind of you 🙏

AgedCrone profile image
AgedCrone

I had 7 great years on Methotrexate...& many people take it very successfully for many more years .....just remember even Aspirin has its downside....so start Mtx ASAP, & look forward to feeling better.

I had no hair loss , had no nausea ...I just felt better.....

I took it at night after my evening meal with plenty of water....on the premise that if I felt sick I would be asleep and I wouldn’t know about it ....and that worked for me.

You will have been prescribed folic acid ....if you should feel slightly nauseous ask your rheumatology nurse if you could increase the dose if you are not taking six pills a week....that is every day except Mtx day. Keep up you fluid intake too.

With RA you have to approach every drug with new eyes and expect it to help you .....more people fail the drugs through anxiety than what the drugs actually do to them.

Most important stop reading Dr Google & thinking the horror stories you read will apply to you.

Good Luck..., come back in a few months and tell us how much better you are feelIng ...yes..I did say months....3-4 minimum to give it a real chance.

Safado profile image
Safado in reply to AgedCrone

Thank you so much, your words have put me at ease greatly...I will let you know how I get on !...thanks again...🙏

AgedCrone profile image
AgedCrone in reply to Safado

You will be fine...my attitude was & is “It will work”...& although I have had to change Meds over the years...I am doing well & absolutely intend to continue to do so.....💁

Safado profile image
Safado in reply to AgedCrone

I will adopt your attitude...it will work, I can't wait to see some improvement...🙏...x

Paula-C profile image
Paula-C

I've been on mtx since 2010, apart from slight hair loss (that could be age related), I haven't had any side effects at all. I remember the first time I took it, I had to pluck up a lot of courage to take the tablets, so I understand how your feeling.

You have to take a step back and look at the bigger picture. I read somewhere that over 90% of people with RA have at sometime been on mtx, it's the most commonly prescribed drug for RA, more people on it, then you'll read more reports of people on it having side effects.

Good luck. xx

Piwacket profile image
Piwacket

Hi I think everyone is scared at first - I know I was. I have been taking for 5 months now - side effects for me were horrible nausea and loss of appetite all the time. I take with folic acid 6 days a week

At first was combined with hydroxychloroquine but I had to stop taking that due to extreme photosensitive reaction.

It does take a long time to be fully effective but when talking to my rheumatologist he did point out that he felt there were improvements from when we first met and he was actually right, so sometimes improvements are small at first.

To help with nausea he switched me to injection and combined with a biologic as methotrexate is its own wasn’t enough - now can see definitely see improvements.

Don’t forget we are constantly monitored if problem arise I have found my team have react quickly.

Dobcross1 profile image
Dobcross1

Yes! Its certainly helped me! It took around 14 weeks to work and im on the maximum dose now but, after 18 months it's given me me life back (and, like you, I really didn't want to take it).

Safado profile image
Safado in reply to Dobcross1

Thank you for your reply...good to hear it gave you your life back, i am so looking forward to getting my life back !..your and other replies have made me feel so much better today...thank you so much...🙏🙏

BoneyC profile image
BoneyC

I was dx in 1971, age 6 and started MTX when I was about 16. 40 years on I still take it, by injection. I was told I was one of the first RA patients to be put on it and can say it has been the best drug for me. I've tried lots of others, but they didn't work, or I couldn't tolerate them.

Safado profile image
Safado in reply to BoneyC

Thank you for your reply, put me ease a lot about taking methotrexate...good to know it worked for you and I hope it continues that way for you...x

BoneyC profile image
BoneyC in reply to Safado

hope you have good luck with it too.

Anonymousgal profile image
Anonymousgal

I took MTX for nearly 30 years. I was taken off when my RA attacked my lungs. I was diagnosed with Pulmonary Fibrosis and am on oxygen 24/7. I now am on high dose prednisone until the inflammation in my lungs settles. They will then start me on new meds. I don’t know if they are sure whether the PF was from the MTX or an attack by thenRA. I didn’t even know that R.A. could affect lungs. Has anyone had anything like this happen to them? I’ve just been diagnosed with the PF and am very upset and depressed.

KittyJ profile image
KittyJ in reply to Anonymousgal

Anonymousgal I would start a new post and ask this question as you’re more likely to get some answers that way 😊

Yes, it works for many people. If you are lucky, it will be the only DMARD you need. It's the "gold standard". Please take it. I was 70 when I started taking it and I have had NO side-effects apart from a bit of short-term liver sensitivity, even when taking 25 mg. I'm on 10 mg now.

I can't guarantee it will be the same for you, but please give it a chance. You will be tested frequently at the beginning to make sure everything is OK. The "before and after" versions of me are unbelievable, going from unable to get up from a chair (or toilet) and terrible pain in my arms - actually bought a wheelchair - to hardly a twinge and able to resume hiking.

Safado profile image
Safado in reply to

Thank you for replying...wow, from what you say it has given your life back..I am 65 and just been diagnosed with RA and will take the first dose of Methotrexate this coming weekend, ..what you have said is very encouraging for me, thank you so much...I too enjoy hiking, walking etc and not able to do so right now as my knees won't allow it...I hope I get the same results as you !...Take care.

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