Methotrexate: Hi. I am 38 years old and I'm looking for... - NRAS

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Methotrexate

K-Martyna profile image
31 Replies

Hi. I am 38 years old and I'm looking for advice regarding methotrexate. I'm on my higher dose of 20 ml as 15 wasn't doing well enough. I'm suffering from inflammation od my wrists, knes, ankles and elbows. Still suffering with multiple joint pain after higher dose that I has been increased 7 weeks ago. I'm seronegative, which my blood are always fine. Would methotrexate even put my symptoms in remission? Any advice regarding pain management would be much appreciated.

31 Replies
Amb1xkr profile image
Amb1xkr

Hi

I suffer from knee, elbow and ankles and started on 10mg Methotrexate about 15 months ago with not much betterment so was increased to 15 mg both times in tablet form. I needed a steroid injection in my elbow as the swelling and pain didn’t improve so rheumatologist decided to also increase to 25 mg injections. This has made a big difference. I no longer have stomach issues that I sometimes had with the tablets and I am beginning to feel less achy generally and do have some really good days too. So persevere even if you have to go to bigger dose. I was diagnosed just over 2 years ago and also told I have ankylosising spondylitis.

K-Martyna profile image
K-Martyna in reply to Amb1xkr

Thank you for your reply. I'm just loosing hope sometimes that things will improve. I know it takes time to feel full benefits of the the dose. Hopefully I'll respond well to this dose before my next reumatologist appointment in 3 weeks time.

ruth_p profile image
ruth_p

it sounds to me like the mtx isn’t enough and you will probably need a second dmard to help control it. If it’s been 7 weeks with no improvement then you should re-contact rheumatology. Especially as you’re young and still have a lot of life to live with this condition (sorry I sound like an old person 😂 but I’m only 40!) and you don’t need the joint damage that comes from uncontrolled RD x

K-Martyna profile image
K-Martyna in reply to ruth_p

I have found few factors that trig flares in my body but fatigue is very difficult to deal with. I don't enjoy going out or seeing my friends anymore. I think mentally has effect me the most. I have 2 children that need me every day. Specialist nurse said that still early on my higher dose and we need to wait and see. I'm on injections, my body didn't respond well to tables. Thank you for your advice x

ruth_p profile image
ruth_p in reply to K-Martyna

Just make sure if it’s not working by the time of your appointment you tell them honestly how your body feels!

K-Martyna profile image
K-Martyna in reply to ruth_p

Thank you, I will 😊

Hopeful1 profile image
Hopeful1

All sympathy with you. I cannot add to views on Metho + but just wanted to check you are in touch with NRAS. They are so helpful with all aspects, and good advice on managing fatigue.

New diagnosis is such a hard time but there is so much that can be done. So many treatment options but it takes such a frustrsting time to find the right plan for each of us. Hold on in there. So much hope!

K-Martyna profile image
K-Martyna in reply to Hopeful1

I only just came across this website yesterday. I was looking for a support group because non of my family and friends understand what this condition does to you. Very greatful for any advice 😊

Hopeful1 profile image
Hopeful1 in reply to K-Martyna

National Rhumatoid Arthritis Society have a range of helpful booklets including ones to show friends and family and so much more beside. Worth ringing their helpline.

So many of us have been where you are but now live near normal lives plus medication.

So much to keep hope alive.

EmmaSpicer-NRAS profile image
EmmaSpicer-NRAS in reply to Hopeful1

Thank you for mentioning NRAS Hopeful1 and thank you for sharing your story with this community K-Martyna and welcome to the forum! You can download and order hard copy versions of the NRAS booklets and leaflets here, scroll down to the bottom of the page (there may be a small postal charge for hard copies if you are based outside of the UK) nras.org.uk/shop/ and here are the details of our freephone phone line: nras.org.uk/helpline/ which is open weekdays 9.30am - 4.30pm. I cannot recommend the phone line enough, it is run by a great group of friendly NRAS staff who are here to listen and will understand what you are going through. Emma from NRAS :)

virtualreality profile image
virtualreality

It sounds like you still have very active disease, so although the effects of MTX can take 12-16 weeks to show you may well need a dose increase and possibly addition of a second DMARD. How long have you been on MTX altogether? I still had very active disease on 20mg MTX plus hydroxychloroquine so was moved onto 25mg injections and that helped (along with a steroid injection), and now take SSZ too. The improvements have been incremental but they are coming. Please don't give up on things improving - there are lots more options to try and hopefully it won't be long before you find the combination that puts your symptoms into remission.

K-Martyna profile image
K-Martyna in reply to virtualreality

Hi. On methotrexate only about 7 months. I know it takes 3 months to feel the difference. Next appointment beginning of October so we will see. My reumatologist is very good and helpful but I don't they don't really help much regarding your mental health. I'm very greatful for the support I already have x

Boxerlady profile image
Boxerlady

Welcome to the forum 😊

It can be hard to see the way forward when you start on these medications but there are lots of options if this dose of Methotrexate doesn't do the job. Make sure that you let the nurse know exactly how you feel at your next appointment and going forward; I've found my team very helpful when I've contacted the nurse helpline and that's always an option when you get to the stage of less-regular appointments.

K-Martyna profile image
K-Martyna in reply to Boxerlady

Thank you ☺️

For the last couple of appointments I was very emotional. I'll definitely consider calendar to keep on track with everything that is happening and try to understand the condition x

nomoreheels profile image
nomoreheels

Hiya K-Martyna, welcome. It may not have been explained at your appointment but it can be a case of sometimes one DMARD isn't enough to bring adequate control, sometimes doses need increasing (as you know) or one, sometimes 2, need to be added. This link explains more fully nras.org.uk/resource/dmards/

Sometimes Rheumys don't take time to explain that it's just not a quick fix, more often than not it can take a few tries to find your particular combination. I've been on MTX since 2009 but have tried double therapy (2 DMARDs). I'm also prescribed pain relief & an NSAID. Many of us take other meds as well as DMARDs (& biologics), so do ask if he feels they would help you at your appointment, especially if you've not responded any better by then. If you haven’t already it might help writing a bullet point list of anything you need answers to, or it's not too late to start a daily diary. The fatigue you're experiencing is probably as it's still your energy not the MTX which is being used fighting against this new thing. It often reduces the better controlled you become.

It is a big learning curve so don't worry. We all started out knowing little of what was to come. Just ask if there's anything you think we may be able to help with.

K-Martyna profile image
K-Martyna in reply to nomoreheels

Thank you for your advice. I'll into that and next time I speak to them, I'll make a point of how much is effecting my life at the moment. It's a daily struggle that I have to learn to live with.

nomoreheels profile image
nomoreheels in reply to K-Martyna

Just now you're a spoonie! Maybe this will help your family & friends understand your RD that bit better, it applies to any invisible chronic illness butyoudontlooksick.com/arti...

With  time, a bit of hope & the right combination of meds it will get easier. Some say at the beginning it's mourning your old life & accepting the new one. Ask for help if you think it you need it. 

As has been mentioned there's the NRAS helpline Mon-Fri from 9:30am to 4:30pm - 0800 298 7650. Don't forget the site too nras.org.uk lots of info there.

K-Martyna profile image
K-Martyna in reply to nomoreheels

Thank you so much ☺️

CripLady profile image
CripLady

They wait 3 months before adding to treatment, as the drugs take that long to sort themselves out. Sulfasalazine may then be added. There is no ‘quick fix’ and no guarantee of remission. It is a waiting game. I would get some counselling, as this is life changing stuff. IAPTS do a Chronic Illness ‘course’. Ask your GP or self-refer.

K-Martyna profile image
K-Martyna in reply to CripLady

Thank you for your very helpful advice regarding the course. I'll look into that😊

Dobcross1 profile image
Dobcross1

Hi, i had to go to 25mg Metoject before getting to where i wanted to be. Each time i increased the dose it took around 14 weeks to see improvement but i did get there and so will you. Now, I'd fight anyone who tried to take my mtx off me 🤣😂

K-Martyna profile image
K-Martyna in reply to Dobcross1

Things are going forward is just sometimes the pain can last for 2 weeks straight before a good day 😐

Chockyuk profile image
Chockyuk

Hi

I started on 10mg which worked well for 2 years, but gradually I had more and more flares, so I’m now on 20mg. This still wasn’t enough, so I’ve had Sulphasalazine added in.

If your dosage isn’t working go back to your Consultant or nurse, as others have said, you might need another DMARD added in. Both Mthx and Sulpha are working well for me at the moment - fingers crossed 🤞

I also really struggled with my mental health, as I’m going through some major life changing things, divorce etc. I’ve had counselling and recently succumbed to anti depressants after resisting taking them for years. It must be very hard for you, especially with young children, you are also very young yourself (well compared to me), please don’t suffer in silence, see your GP if you need help. 💕

X

K-Martyna profile image
K-Martyna in reply to Chockyuk

Hi. I'm glad you are responding to treatment better now. For me is just a beginning, I need to learn to understand how my body works regarding the condition. I'm trying to be patient but some days I struggle a lot x

Boxerlady profile image
Boxerlady in reply to K-Martyna

Hopefully the support you get here will help but do consider ringing the NRAS helpline. They also have useful leaflets which might help your family and friends as well as yourself 😉

stbernhard profile image
stbernhard

Hi Martyna, MTX can take longer than 8 weeks to really show results. As some said, get in touch with NRAS. They have so may resources which may help you. I'm on MTX since 2009 and never had any problems with it. I found that exercising my joints was really helpful even though the exercises were painful. Alsi, keep a journal of your symptoms. That's very useful for you and your consultant.

K-Martyna profile image
K-Martyna in reply to stbernhard

Thank you so much for your advice 😊

SLP4kids profile image
SLP4kids

It took fully 3 months for the Methotrexate to have an effect and it is so hard to be patient when every day is a struggle. Like you, I had a lot of trouble mentally dealing with the effects of RA and accepting limitations so I found a good therapist and met with him regularly for about 9 months which helped enormously. Also, during that time, I found that acupuncture helped during that time. Stay strong; better days will come.

K-Martyna profile image
K-Martyna in reply to SLP4kids

Thank you ☺️

Tomorrow is a new day. Hopefully with all those advice of trying different things I will be able to find my own way of dealing and living with RA.

GordonEdin profile image
GordonEdin

How long is it since you started on Methotrexate?

I originally was on 15mg for a few months. Nothing much changed. Dose was increased to 20 mg and, after a month or so, I started to notice some improvement.

Improvement continued over a couple of years to point that I was essentially back to normal.

Subsequently tried reducing to 17.5 mg and after a couple of months developed some symptoms again. Back to 20 mg and I have been fine for ten years.

So, methotrexate can take a long time to work and small dose changes can make a big difference.

Of course, if you have been on the pills for a really long time, you may need something else!

When I did have active RA, the one thing that made a big difference was a steroid injection. Of course, you can't have many of these and they may not keep working long term, but they can certainly knock back the pain for a few months. A GP probably won't want to do one of these but Rheumatology will likely offer them occasionally if you are having a "flare" - while waiting for other medication to kick in.

K-Martyna profile image
K-Martyna in reply to GordonEdin

Thank you for your reply. Had steroids injections and steroids pills before but side effects were making it worse so currently on 20 mg injections for the last 8 weeks. Started of 15 mg pills eventually switched to injections. Just wondering if they will keep me on this those with active flairs? I thought once they find right does I won't have active flairs? Just confused at the moment.

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