Methotrexate prescribed: Have been told to switch from... - NRAS

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Methotrexate prescribed

Sunnyseas profile image
20 Replies

Have been told to switch from hcq to mtx now. Had dexamthasone IM to help symptoms until mtx starts to work. Haven’t started mtx yet, really frightened of the side effects and feeling unwell at work. Any advice would be appreciated, ss

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Sunnyseas profile image
Sunnyseas
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20 Replies
allanah profile image
allanah

Wow lucky you, gold star treatment. Do look at nras.org.uk and if you go into the search button above theres lots on mtx. Most people do well on mtx , main side effect I initially got can be nausea so I took mine at night. It's great to get treatment so help the pain and swelling , good luck.

Georgiab123 profile image
Georgiab123 in reply to allanah

Good luck it caused lung disease with me wish I’d never took it it’s definitely destroyed my life x

Sunnyseas profile image
Sunnyseas in reply to Georgiab123

I am so sorry to hear that, thank you for your reply 🤗

allanah profile image
allanah in reply to Sunnyseas

Very very unusual reply . I'm sad this happened to you Georgia but it's rare. And you posted two years ago so it's a shame you didnt chat here. Hope your seeing the doctors. However , dont be scared sumnyseas , there are many who have had great help.and returned to normal with mtx. You will be monitored regularly as well by your doctor. So any problems are normally ironed out quickly.

Sunnyseas profile image
Sunnyseas in reply to allanah

Thank you Allanah, there seems little choice but to try it & hope all goes ok

allanah profile image
allanah in reply to Sunnyseas

I think it's worth it , many positive and negatives posts at times on here about all sorts of things as its peoples own experience. Personally I was fine , felt a bit sickly and after a while got changed to the injection form which helped. Good luck , read up on those links and keep chatting xx😍

Neonkittie17 profile image
Neonkittie17 in reply to Sunnyseas

Hi Sunny. Do try Mtx. I think you’ll be given a chest X-ray first as I recall from a long time ago. Just to check to start you are clear if any issues. It works so well for the majority of people and I’m sad it wasn’t the med for Georgia and really sorry for the issues it had caused her. 😢 I was reluctant at first to have Mtx as I thought it was a risky med back in the late 90s when I didn’t know so much about RA and treatment, but I needed something more than Sulpha. Decided all meds could be potentially risky in their own way but odds were low for major side effects, so I’d go for it and major side effects seemed very rare from what I saw. It has worked very well indeed for me. You could chat again to your rheumy nurse to give you more peace of mind? I hope you feel more confident as you start to take it and start to improve in with your RA. Yes, you can get round if you feel nauseous by taking Mtx at night. It never work me up making me feel sick either. I didn’t feel sick but sometimes a bit unsettled so taking it before bed meant I didn’t feel anything as was fast asleep. Hope you are soon feeling the benefits of Mtx. x

Gnarli profile image
Gnarli

Your concerns are understandable but MTX affects us all differently so you could easily be one of those who don't get horrible side effects. Drink loads of water on MTX day and the day after, remember to rest if you need to and be kind to yourself. I've been on it for over four years now and apart from a bit of nausea in the early days it's been good

Boxerlady profile image
Boxerlady

I'm doing well on Methotrexate despite a few, perfectly manageable side effects. Hopefully it will suit you 😉

helixhelix profile image
helixhelix

Been on it 11 years now. No side effects to speak of, although I do plan an extra hour in bed the morning after I take it. Drink lots of water, avoid alcohol for first 3 months ‘till you have adapted to it, and you should be just fine. The majority of people are.

Serious problems caused by MTX are very rare. And more uncommon than very serious problems caused by uncontrolled disease.

Gymcactus profile image
Gymcactus

Hi I have been on methotrexate for 4 years now, no problems apart from feeling a little nauseous day after,I had a chest x-- ray and lung capacity tests before going on it. Now just regular bloods taken 3 monthly because of Covid and the fact that I am considered stable and in remission.

Mmrr profile image
Mmrr

MTX didn't work well for me in terms of controlling my RD, but I'm glad I tried it, it works well for many people. It is important to keep well hydrated, I also found eating carbs helped with nausea and take it at night time.

🤞 for you

cakenomore profile image
cakenomore

I am always worried about any new meds my doctors suggest. I did my research and decided to give Mxt a go. I've been taking metoject now for a year. All the pain that I had has gone except some wrist problems. Before treatment I was in a very bad place. Like others have said different people have different experiences but I would say it's worth giving it a try. Be patient though . I found the side effects lessened with time but it can be slow to effect the joint pain. I think it took a month before I started to feel the benefit. I had dosage adjustments along the way and after 8 weeks most of the stiffness and pain was gone. Methotrexate dose have some good side effects as well. It stopped me loosing all my hair through alopecia. It has also been shown to protect against cardiac problems and increased life expectancy in RA patients. So it's not all bad.

ketiv74 profile image
ketiv74

Hello there Sunnyseas- I am on MTX 15 mg Inj once a week for last 2 plus years. It worked really well for me. Once it kicked in I felt 99% normal for these 2 years. No side effects other than some hair loss which was controlled with increased Folic Acid & some elevated Liver enzymes a few times but nothing that concerned my Dr.I was as anxious as you when I started it, but now I am glad I did, it gave me my life back.

I would say give it a try. You will be monitored regularly by your Rheumy team so if there are any side effects they will be taken care of quickly.

lynndemedicis profile image
lynndemedicis

I've taken Methotrexate for years, along with some prednisone. The Methotrexate is fine, but I've had a fracture in my ankle and busted arch, which I believe is due to the prednisone and weakness from neuropathy.

Sunnyseas profile image
Sunnyseas in reply to lynndemedicis

Sorry to hear about your foot & ankle issues, hope you are on the mend, best wishes ss

Flor1rence profile image
Flor1rence

Hello Sunnyseas. Please give MTX a go. I have an auto immune disease and after trying quite a few lotions and potions including steroids I was offered this, initially 17.5 mg tablets about 5/6 yrs ago, been on injections now 10mg for 18 months, have to say its my best friend. I had myocarditis in my 20s and have OA, it has helped me no end. I inject on a Friday night so have weekend to relax if need be. 😉😊

Flor1rence profile image
Flor1rence

and good luck btw, keep us updated 😊

Sunnyseas profile image
Sunnyseas in reply to Flor1rence

Thank you for the reassurance 😌

Sunnyseas profile image
Sunnyseas

Thank you to everyone who has replied to my post. First dose was ok until second day afterwards, felt exhausted. I work full time and have a volunteer role once a week. I’ve been given a few months break from volunteering while I get things settled but can see now that weekly mtx isn’t going to allow me to continue. I don’t feel I have the emotional strength to do it anymore either. It’s hard giving in to this and accepting a new ‘normal’ that is unpredictable, a bit isolating, frustrating, and a time when you need to be selfish to get through 😞

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