getting it right

Next week will be 3 yrs since diagnosed :( I was put onto MXT.. then later on, onto Leflunomide. Then late last year, that was stopped and I was given Enbrel,(after having ultrasound scans= active inflammation) this July review and the RA consult said it was not working as it should, so I was prescribed another drug (cannot recall name, but it was unlicensed. When I read the write up, it turned out you cannot take it if you are allergic to ethromycin (I am), so back to clinic and I was put onto Sulfasaline, low dose increasing over about 6 wks....three weeks in and I was so ill, taking them,so called RA nurse, who told me to stop them. I am now seeing the consult in 3 weeks, but in the meantime, apart from the 3 wks on Sulf, I have only been on MXT, and I am suffering now :(

Maybe the Enbrel did not do as much as consult wanted, but at least I was not suffering as I am now. I cannot understand why, if I qualified for a biological (the enbrel), was I given 'lesser' tabs when I came off it.

One other thing, my crp bloods (and ast) come back as fairly low, when in fact I am swollen up with inflamation (and of course the docs never see you when you are so bad :( )

I feel like an experiment. Mxt a cancer drug, the pills I could not have were anti kidney transplant rejection pills, the Sulf. for bowel disease ....... I just want thr right drug for me, without all the effects.

Rant over :)

6 Replies

  • Hi lab-lover

    I'm really sorry to hear of all the ups and downs you've had with your medication. Please don't feel as though they are treating you like an experiment, as drugs like MTX and sulfasalazine (SSZ) are very commonly used in RA and have been for years. Although MTX started out as a cancer drug, it is used in a much lower dose in RA and has been used in RA since the 80s. SSZ has also been around a long time (actually since the 1940s) and has been used in RA for a long time, so both are very well extablished as RA medications and are not experimental treatments.

    Having said that, of course they haven't worked well for you, and it is a little puzzling that you would try one biologic and then go back onto the standard DMARDs. I think it is worth querying this with your rheumatology team. There may be particular reasons why they felt other biologics were inappropriate, but I think if this is the case you would feel reassured to have some ideas of what those reasons might be and just generally to get an idea of what should happen next.

    I hope they are able to give you some answers, but if not, you could always ask your GP to refer you for a 2nd opinion.

    Kind regards


    (NRAS Helpline)

  • I agree, too many questions as to why DMARDS were back in use rather than another biologic. There are so many out there now, many even advertise as one to be used when others have failed. I think you surely should talk it over with your GP and ask for 2nd opinion. Stories like yours are so frustrating!! All the best, soon !

  • Sorry to be late with answer, I was in that situation a little while ago as I was told by the nurses they wanted to " clear " the Enbrel out of my system for three months before trying another biological. They then put me on Humira, which I have just failed and same again they want to leave me before they try another biological! It's painful for that period but they then gave me a steroid shot to get me through until the new treatment which again takes another three month to get into your system. Patience is needed though but ring them and ask what their treatment plan is for you, so u get information, good luck Axx

  • Thank you everyone. I see my consult on the 25th, So I will be asking quite a few questions... am in a lot of pain, especially hands, so I am getting desperate.

  • Another thought...You were taking leflunomide...did the Rheumy tell you to stop taking that when you started the Enbrel. Most usually stay with other DMARDS when they begin a biologic. Maybe that is why it didn't work so well, they are meant to work together..Be sure to talk this over with your Rheumy.

  • I am and always have been on 20mg mxt.. yes, I stopped the leflunomide when I had the enbrel. And since stopping the enbrel, although the consult said it wasn't working as it should, I am certainly noticing a huge difference (the pains/inflammation)

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