RA and Erythema Nodosum/Vasculitis

Hi I became ill with RA four years ago (aged 40) and have unsuccessfully been on MTX, HCQ, Leflunomide, Humira, Rituximab and Tocilizumab. Had to come off the tocilizumab at the beginning of July as was admitted to hospital with an inflammatory bowel disorder (still awaiting firm diagnosis) as if IBD does in fact exist, the toc can perforate the bowel further.

At the end of August I developed erythema nodosum which is extremely painful. It is mostly on my lower limbs, but has spread and then retreated from my upper legs and stomach. On some parts of my feet the EN seems to have ulcerated which I don't think is usual - am concerned I may have some sort of vasculitis - does this sound familiar to anyone?

Am currently taking prednisolene, tramadol and methotrexate (although that does not really help). Thanks Nina

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  • I assume you've asked your rheumatology team about these latest symptoms Wolf? - I've not really heard of any of these apart from Vasculitis but know very little about even that. All I can say is that I hope things improve for you very soon and I hope you get your answers and find a drug that works for you now - not sure what's left but hopefully something will work - you havent listed Cimzia? Tilda xx

  • Hi Tilda, no haven't seen them yet, have an appt proper with consultant in a fortnight - my GP is aware and he has increased my steroids and sending me for chest xray today. Also off to have my bloods done at hospital today and have decided to hijack my rheumy nurse and show her what's happening to see if I can wait till the 10th or whether I need to see someone now.

    No Cimizia has never been offered to me. Guess that's all that's left now. Thank you for taking the time to respond. Nina x

  • Yes definitely push to see the rheumy nurse today Nina. It sounds potentially serious and we can't really help or advise you here but can only offer you support and sympathy - which aren't really that helpful. Tell your rheumy team ASAP please. Tilda xxx

  • They've told me to go to A&E post haste. Massive queues there, so will try later. Nx

  • Any news Nina/ Wolf? Tilda xxx

  • Sorry yes, went to A&E at work (work in Telford live in Wolverhampton where I'm a patient) and they've given me some antibiotics which I've started with a recommendation to go see my Rheumatologist. Nx

  • That sounds good but I hope you can see your rheumatologist very soon. Tilda x

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