Mtx failure

[fiona44]

Had ra since 2000, been on mtx and sulphasazine, was going ok on and off until last year started to get reallllly! Bad flares. Hospital put me on injections of mtx, and its just keeps getting worse. I have just had the worst week of my life, not even going out or able to get dressed. Has anyone else had this experience? If so what did you do xx

[Hidden]

Oh yes, I've been in this particular pickle. In retrospect I think what kept me going was the hope of effective treatment. As you have failed two DMARDs, might biologics now be on the cards?

The situation you find yourself in is serious. You probably know that. But for me the worst loss of mobility was right at the beginning. Fortunately I saw a rheumy who was a very good communicator and she told me 'this - is - serious' sternly enough to wipe the false smile off my face and rally my determination. We have to do contradictory things, I think .... i.e. survive from day to day, focusing on what we can do whilst at the same time harnessing our anger for a kind of campaign, if necessary, to get the right help.

After so long doing okay on DMARDs (I assume, anyway) it must be hard to get to grips with this awful flare.

What does your rheumy say?

[fiona44 in reply to Hidden]

Thanks for the reply. I was considered for biologics but I've had breast cancer in 2010 (all clear now) so they wont risk it. I'm going to see them Monday so hopefully they will sort it out. They might change medication.

[popsmith1874]

I'm same as you although I've only been on MTX injections for a month so I'll give it another couple of months,but so far no difference and now my right ankle keeps giving way so I need stick all the time and the flares are worse

[Jora]

At onset, my RA was like that. I feared I would be bed-bound for the rest of my life. At the first consultation I had a steroid injection and a provisional diagnosis of Polymyalgia Rheumatica, pending blood results. They came back as aggressive Polymyalgia-onset rheumatoid arthritis and methotrexate was prescribed plus a tapering dose of oral steroid. But MTX alone wasn't enough. I went onto Sulfasalazine and hydroxychloroquine; they didn't do much, so I was put onto anti TNF injections. The Enbrel worked brilliant. I have flares and ocassionAl infections, and I still have to use a crutch, but it is nothing like as bad as you describe.

Poor you. It is so painful, and frightening.

It certainly sounds as if you would qualify for Biological treatment, and I would expect them to give you steroids to tide you over. If you haven't got a consultation booked for the very near future, I think you should push for an Emergency one. You really need early intervention to get this under control before it does long-term damage.

The very best of luck, though one hopes you don't have to rely on luck! Jora

[fiona44 in reply to Jora]

Thank you jora, u too xx

[Redrooster]

I always have that situation in the back of my mind since I've been diagnosed. I would ring RA nurse or Consultant secretary ASAP and if you are so bad you can't get dressed they may admit you to rheumatology ward to help resolve problem quickly.

Might sound dramatic but needs must. At least run it by them. Or get OOH's GP to call and review you, they can always arrange admission.

[pdp1134]

Everyone is different, but I'm sure many of us have suffered a seeming "failure" of our medicines. I know I have. For me a short course of prednisone helps get me through the flare, but I still believe the MTX is effective, just not 100% of the time.

Of course, it may be completely different for you, and I sure hope you find a way through the flare!

[blorie]

so sorry you are feeling in so much pain. I decided the mtx was making me feel so poorly that i stopped taking it and pleased i did. I hadnt quite realised how ill it had made me, sick, tired, well complete fatigued, more so than ever before and flares more frequent. My knees were incredibly painful but since stopping i have had no flares in them. The ra nurse said that some people are actually worse on mtx but a very small minority. Now im still just on sulphasazaline at present and steroids. Perhaps you could look in to other drugs.

Takecre.

[Viiks]

Hi guys, Had my first ever flare abroad in 2011, started as a reaction to a diarrhoeal illness is what I came to know. Happened again in 2012, twice in 2013 and now every 5-8 months. In the beginning I would have a flare, knees would swell and resolve after 2 weeks. Initial flares every year. Now becoming more often and more severe, with more joints affected. So much so at its worst I can't get out of bed, go toilet and wife has to dress me.

I was put on a monotherapy of Sulfasalzine 1g a day in Feb of this year after suffering a flare after 8 months. And was absolutely fine until going through another flare since 1 July and have been put on mtx targeting 20mg weekly as well as the Sulfasalzine.

In the morning I'm so stiff my ankles feel like they are broken, back stiff and my right wrist is unusable. Has anyone had a similar issue, is the initial reactive turning into rheumatoid? Feeling really down but putting that down to effects of DMARDS.

Would love to know if anyone has been in a similar situation and what has worked for them.