NRAS
21,314 members25,057 posts

Recently diagnosed

Hi I've just turned 40 and after years of swelling joints I have just been diagnosed with RA - my rheumatologist has recommended I go onto Methotrexate and I've been researching it with some pretty scary results - has anyone here used it and if so how did you find it? At the moment my RA is manageable with just a painful wrist and non painful though very swollen knee so I wanted to know whether it was worth starting now or whether the side effects would outweigh the benefit? Any advice greatly appreciated.

10 Replies
oldestnewest

Methotrexate has given me my life back and I wouldn't be without it. Yes it was scary reading about it when first diagnosed - but for the majority of people it's absolutely fine. I have been on it for over 6 years now, and have no side effects to speak of.

RA is a progressive disease, so what it manageable now may well not be if it is not controlled. And it is much easier to control it now and with better results than if you wait until it has spread like wildfire. It can also lead to heart and lung complications if not managed. Basically this disease is much scarier than the drugs!

Many people will tell you that all you need is a copper bracelet or extract of a herb or to stop eating tomatoes. You can do that alongside the drugs and if things work out then slowly taper off the drugs. As these alternatives only work for very, very few people, and so you risk getting permanent damage.

10 likes
Reply

Thanks HelixHelix I have had many flare ups this year and looking back this must have been going on years and I just put it down to overexerting myself in the gym! I think that I think along the lines you have set out that actually the disease itself is horrendous and MTX can really work, so to avoid future disability I guess I shall give it a go, I assume if I get bad side effects I can always stop taking it and try something else anyway. I'm most scared of long term liver damage but I haven't found much suggesting taking MTX is responsible for anyone's liver problems.

2 likes
Reply

Hi there. I was started on the MTX and found it did help but I was unable to continue because I got the terrible brain fog I couldn't remember what I was talking about would go to do something and forget what I was after I thought I was going crazy. But that dosnt mean that happens to everyone I was put on Sulfasalazine after that and had bad reaction so am now ment to be waiting for Humira injections but in mean time I am going to try cbd oil I feel I have nothing to loose by trying it. Hope MTX helps you cheers zeta

Reply

Exaggerating in any direction is not useful. Some have very positive results some have a harder time finding a solution that helps and some need to use other meds. The process of finding what helps you the best and how easy or hard it will be is impossible to know beforehand. There are also very different kinds of RA. Some are very aggressive from the start and on the other end of the scale some are controlled with less aggressive treatments.

Starting with or combining dietary measures is nontoxic and does not have side effects so this you can only benefit from. Eliminating gluten and dairy for starters may decrease inflammation and symptoms. It's very hard in the beginning with so many unknowns and so much you still need to learn😕Take one step at a time. I wish you all the luck. Simba

2 likes
Reply

Hi microns, you came to the right place. The only I would add is the importance of early diagnoses and treatment.

The damage done to you cannot (usually) be undone. It is thought that most of the damage happens early on.

There is a considerable amount of misinformation out there. Always check your sources. I was not diagnosed early and have proven very drug resistant. Sometimes waiting can do far more damage than potential side effects. No pressure lol 😂

The sad truth is your life as you knew it is changed forever. It sounds like you have mild RD but that can change. Find a Rheumatologist you trust and follow there recommendations.

3 likes
Reply

I think you I'll find the majority of us here have taken Methotrexate With varying degrees of success.

Some are on & off it in weeks...others seem to thrive on it for years. But right now you are the one to start taking it, so really try to keep an open mind & don't dwell on the horror stories....I'm sure the anxiety about taking it often has a worse effect than the actual drug!

Remember as a Dmard Mtx will protect your joints....I took it for 7 years,& have no major joint damage ....so it is well worth persevering even if you do have the odd wobble to start with!

Hope you are one of the luck ones!

7 likes
Reply

Hi nictans. You can't be more scared than I was when starting methotrexate. Scarey disease, scarey meds. I took the view that yes mtx is a serious drug but suffering agonies and perhaps being crippled by the RA was by far more serious. I started taking 15mg in January this year, rising to my current level of 25mg and I do feel a little icky the next day and a little more tired. Nothing awful or unmanageable. Like anything some things suit some and not others and given the figures you have a good chance of being one of those with no or few side effects. Wishing you all the best. Hugs

Jan

3 likes
Reply

Hi there. As all the other comments show, everyone has different reactions to different drugs. For my part methotrexate was not good as it made my headaches worse, brought my white blood count down too low and I list my hair, a common side effect. I was put onto other medication such as luflonomide and hydroxychloroquine but also with bad side effects. I am now on biologic injections. I think you need to try the methotrexate, but be aware that it may not suit you. Unfortunately every treatment suppresses your immune system, which in itself is a hazard. Good luck, Dee

Reply

Hi there

Reply

hi I was given mtx in the first place 4 years ago first tablets but they knocked me sick then they said try the injestion form but every time I took them I was as sick as a pig and asked to come off them now I'm on another drug that works well for me but all are different good luck love keep us intouch let us know how you get on

Reply

You may also like...