Early diagnosis of RA is MTX worth it?

[TS69]

A family member has just been prescribed MTX as consultant has confirmed that they have caught RA early. Does she take it when her quality of life is still good with intermittent pain but MTX sounds as though her life would change drastically and the possible side effects appear severe? She is in turmoil and so are we. Any advice would be much appreciated.

[Hidden]

MTX is one of the drugs that keeps RA under control. It's normally one of the first dmard drugs that are prescribed. Obviously it is up to every individual as to whether they want to take strong drugs that can have nasty side effects and this has to be weighed against joint damage that will most probably take place if the disease is allowed to take hold without the use of any meds. We all get really worried when first prescribed MTX but the vast majority of people get on well and don't have really bad side effects and there is always a different drug to try if the first disagrees with you.

There are lots of well informed people on the site and hopefully you will get a few more replies and different views.

All the best

Mary

[Dotty7]

Definitely take it!

For many people the side effects are non-existent or mild, and it will be carefully monitored by the rheumatology team. Intermittent pain is no fun, and most likely the gaps in between will get shorter. The biggest factor is the joint damage that may be caused by leaving the disease untreated. The damage is irreversible. Modern thinking is to treat the disease early and treat it hard: this strategy is the most likely to enable disease sufferers to be able to lead a normal life.

There is lots of information out there, and it's bewildering. Stick to websites from reliable charities or NHS ones, at least in the first instance, because some of the information can be misleading. And avoid people recommending cures involving snake oil and herbs: if these things could cure RA, rheumatologists would prescribe them.

Very best wishes to your family member - it's a diffcult time, but there will be light at the end of the tunnel.

Dotty

[Hidden]

There was a chap who came on here in his late seventies - still full of spring and not in that much pain - who had just been diagnosed and advised to take MTX. He wasn't liking the idea at all at his age and I can quite see why not. If, however, this family member still has many years ahead of her then MTX is one of the most effective drugs for slowing down the progress of RA - and the earlier its used in the disease progress the more effective it can be in preventing damaged and deformed joints.

I take it by injection each week and another DMARD too and I have very little pain now and my inflammatory markers are coming down steadily - although it took at least 9 months for this to happen properly. And I do often wonder if I need to be on a drug this powerful because my RA hadn't actually damaged my joints much at all at the point of diagnosis and starting on MTX - but that's because its working so well that I feel as if its gone away most of the time now.

What you don't really want is for your family member to wait until the disease progresses and does irreparable damage before she starts taking it. Hope this helps a bit. Tilda

[Hidden]

It's quite unusual your post as far as I know in that you emphasise that your family member is not, if I read you correctly, having too bad a time of it at the moment. And for that reason I think her feelings are understandable. However, from my own experience, I have been on mtx for some time now and the only way it has changed my life is that it has worked extremely well & my RA is now well under control. No side effects of any significance either. It doesn't seem to have any effect on me apart from making me well & I'm on a high dose. So many people take it that there are bound to be a very varied set of responses & those who are happiest with it probably don't feel the need to come on here so often so it's easy to get a skewed impression of its impact.

I really think that the situation you describe needs a bit more input from the consultant, ideally a meeting with him or her to address your family members concerns fully because those concerns do make sense and you sound like the sort of family who could usefully attend a meeting like that with her. But meanwhile please believe me that mtx isn't necessarily something to be frightened of at all. Getting consultants to give you time when you really need it can be tricky though, to put it mildly, but if you present a very good 'case' for a meeting then you might get a result. Good luck to all of you, Luce x

[Shell1967]

Please please please tell your family member to go for it.im on week 16 of taking 15 mg of mtx a week,and it has helped me tremendously !!!! No side effects nothing and mtx I now call my friend :))) I was told I have early RA but without it I know I would have not got better.the majority of people tolerate mtx very well.hope this helps Michelle x

[JennySLT]

I was 26 when I was first put on MTX and it has been good. I have been a bit up and down recently but I'm still in the early stages of taking it, plus I had a cold and was a bit run down over Christmas. If it doesn't work well for your family member then the chances are they'd start them on another DMARD after so long. Good luck.

[bpeal1]

Taking DMARDS (disease modifying anti rheumatic drugs) is definitely worth it. Uncontrolled disease activity can quickly cause irreversible joint damage.

MXT (methotrexate) is often the first one tried. I would definitely give it a go. If side affects are unbearable or it doesn't work, don't worry there are others to try. It is often a case of trial and error until you find what suits.

It is only natural to worry about taking these drugs but it has to be weighed up against what could happen if you don't.

I recommend calling the NRAS help line. They are very friendly and understand the fears newly diagnosed people have. Here is their number 0800 298 7650.

Becky

[rheumatoidymummy]

I was diagnosed 4 years ago (I was 31) and the team were keen to get me on MTX ASAP as the intention is to treat it aggresively to try to prevent irreversable joint damage.

I too was terrified of voluntarily putting such a noxious substance in my body but the long term alternative is potential disabililty.

I too have not had any side effects apart from a little nausea and I now self inject to get around this problem.

I'm now on 3 different DMARD treatments and all are a little worrying in terms of side effects but having already had two operations on my wrist caused by damage before I was formally diagnosed and began treatment (only about 2 years before first symptom and diagnosis) I would take popping a pill over sugery and the recovery afterwards every day of the week!

Becky makes a very sensible suggestion - I called the NRAS Helpline in the very early days and their advice was invaluable.

Please remember that RA is a chronic progressive disease - your relative may not be too bad now and the intention of her medical team is to try to bring her symptoms under control to try to slow down the progression of the disease. If her quality of life now is good the treatmetn will seek to keep things that way! From what I understand aggresive intervention early on is now the standard treatment. MTX has been around for many many years and your relative will be monitored closely by the medical team while taking it.

Wishing you and your relative well. x

[rheumatoidymummy]

Sorry - between first symptom and diagnosis.....

[PhePhe]

I was diagnosed in July 2011 with fairly minor symptoms (compared to many other people) and was put on MTX straight away. I only took 15mg with no other pain relief or steroids and this worked so well that I thought I had been misdiagnosed and that I didn't really have RA at all !! (Unfortunately this was not true!)

However since May 2012 I experienced some side effects that I could no longer tolerate and the consultant has recently taken me off this.

I firmly believe that it is important to prevent any damage that the RA may cause, although MTX doesn't suit everyone - it is a trial to find the best medication that suits but it has got to be worth it for the future.

Best wishes, x

[oldtimer]

From my own experience and from the reading I have done, I think that aggressive early treatment with a DMARD and keeping as active as possible are the main things that prevent long term disability.

Once the diagnosis is made, then a DMARD should be started asap. The side effects can be a problem in some people, but if the disease isn't too active, then your relative should not need too big a dose, keeping the side effects to a low level.

[Hidden]

Mxt can work well for lots of people x

[Victoria-NRAS Partner Moderator NRAS]

Hi TS69

I work on the NRAS helpline and we get more calls from people who are nervous about taking medication than we do about anything else, so it is only natural for you and your family member to be concerned.

I think there are some really important points to take into account when deciding about treatment, many of which others have already said, but to re-itterate:

- Just because they are not experiencing symptoms badly does not mean that damage to the joints is not occurring.

- Evidence suggests that starting on these drugs earlier, to hit the disease hard in the early stages gives a better long-term outcomes.

- The side effects that you have read about are only 'potential' side effects and must be weighed against the damage that the disease can do if untreated.

- The more common side effects will tend to be milder side effects.

- Your family member should be monitored regularly in the form of blood tests, to help them to monitor for some of the more serious side-effects.

If you or your family member would like to discuss this in more detail please feel free to contact our helpline. We are available Mon-Fro from 9.30-4.30 on 0800 298 7650.

Kind regards

Victoria

(NRAS Helpline)

[TS69]

Thank you everyone for your helpful comments, it is much appreciated.