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[Buckybri]

What happens if the mtx don’t seem to do the job ?

[KittyJ]

Did you change to injections as planned Buckybri ?

[Buckybri in reply to KittyJ]

Got to go on a sort of course on how to use it this Friday , so no mtx tonight but I have noticed that last week they dropped my dose down from 20 to 15 and my knees r really bad again . What happens if mtx don’t work but saying that I don’t know what to expect well I’m hoping that I will be out of pain .

[helixhelix in reply to Buckybri]

There are now about 30 different drugs for RA - about 6 traditional ones and over 20 biologics. So really don’t worry right now.

[Buckybri in reply to helixhelix]

What r biologics? and I was told that mtx was like the gold standard , I’m just so fed up my personal life I’d starting to crack because of the way I am , I’m really struggling again at work it just seems like it won’t end

[helixhelix in reply to Buckybri]

Mtx is the gold standard drug for the first response to RA. The most common approach if people don’t do well on MTX is to swap them to another drug called leflunomide, which can be taken by itself of alongside another drug called hydroxychloroquine. These are traditional drugs that have been used for a long time and for many people are very effective. There are a couple of others as well.

If these don’t work for you, or other traditional drugs, and your disease activity is still high then it is possible you will be offered one of the biologics. Your hospital will only be able to offer these if you meet certain criteria. They are a very different sort of drug as they are many from living material, so they are expensive. They also carry risks like all other drugs.

Are you doing all the standard self-help things to look after yourself as well? Like eating a healthy diet, trying to get proper sleep, not smoking, drinking water and limiting alcohol etc etc. The drugs work best if you do.

[Buckybri in reply to helixhelix]

I don’t drink don’t smoke I drink lots of water have a active job which at the moment is hard . I walk an average of 10 miles per day in work , but my diet umm it’s not bad but could be better as I’m eating some biscuits , . It gets me down as I have always been active and now can’t even walk my dog .

[Buckybri in reply to helixhelix]

When you say disease is high does that go by inflammation markers ? Because I asked about that and they told me it’s only a bit of a guide .

[Hidden in reply to Buckybri]

Walking is my killer at work I do up to 10000 steps on a 'bad' day and last week every day was a 'bad' day. They say keep active but moving at work gets tough so I feel for you on this one. I try to have the odd calm day like today and try to stick to the office chair but it is hard as part of my job is to be on the move!

MTX I also take co codomal for pain relief and on realy bad weeks which is coming up again Prednislone which I dont l ike taikng but sometimes 2 weeks of 5mg for me works a treat and feel better. However I get off it quickly due to side effects etc.

Talk to your GP and Rhuemy team to see what else can be done.

[Buckybri in reply to Hidden]

I started taking tramadol to ease the pain at work , I don’t find it really eases the pain but helps me get by , I know how u feel to but what can we do ? If I didn’t work I wouldn’t be able to pay the bills it’s not easy is it .

[Hidden in reply to Buckybri]

It is tough just reducing to 4days a week as got such bad fatigue to see if that helps. I got off tramadol as did nothing so gave them up tried nefopam now on co co . It is relentless but staying positive mainly to this site and the support

[helixhelix in reply to Buckybri]

No, not just inflammation markers. They take into account physical symptoms of joint swelling and tenderness as well as how you say your feel.

[KittyJ in reply to Buckybri]

I wouldn’t worry about what will happen next, the injections might solve all your problems 🤞🏻

[Buckybri in reply to KittyJ]

Well mtx hasn’t worked yet , and I can’t continue like this my family depend on my income from work I worry about the future .

[KittyJ in reply to Buckybri]

But with the injection and increase in dose it might make all the difference Buckybri😊 Have you spoken to your employer about the problems you’re having at work? There are things they can do and should do for you. Maybe you need to take some time off whilst you try to get your RA under control.

[Buckybri in reply to KittyJ]

Yea spoken to them took me 6 months to get decent work boots to make my work more easier so u can guess what they r like , but hopefully yr right about the injection, I knew nothing about RA b4 I had it I thought all arthritis was the same and most people still do , they all think it’s a wearing of the joint through wear and tear , you see someone limp and ask them what’s wrong and they say it’s arthritis kicking in . But if only people knew the different types and how nasty it can be .

[KittyJ in reply to Buckybri]

Yes I was the same, had no idea what it was. Even when first diagnosed I had no idea what lay ahead. There is so much more that can be done meds wise for RA nowadays so even if mtx isn’t working for you there lots of other options. Have you looked at the NRAS publications about work etc? Just so you know your rights.

[Buckybri in reply to KittyJ]

No where will I find out about my rights ? Thanks .

[KittyJ in reply to Buckybri]

Here you go

nras.org.uk/publications/ca...

nras.org.uk/publications/an...

nras.org.uk/publications/i-...

[Dilly2]

Hi I was on Mtx for along time thought I was beginning to get immune because I kept having a higher dose all the time.

Chañged to Lefludamide that's been fine best wishes