I suffer from Idiopathic Urticaria
I suffer from Idiopathic Urticaria. I have fibromyalgia & Seronegative Rheumatoid Arthritis as well. I guess I should say that I was on methotrexate for hives suppression but wasn’t working on Joint pain & inflammation so Dr put me on Remicade infusions for RA to keep my immune suppressed. Was due for treatment on Thursday 3/16 but due to cold/virus it was pushed back & woke up with hives outbreak now!! Well it’s not like my hives I used to get before the immunosuppressant. This time spots are not fading & re-appearing as before. Outbreak is staying in one spot for almost 48 hrs & getting new spots daily lasting same length of time. Also before my hives would go away & leave no trace but now they are leaving a faint reddish mark behind. Hives outbreak or something else this time?? So frustrated!!!
Discussion
Marie Bint-Whyley I have the same problem when having a bad flare. It leaves like a tea stain around the hive which last 2-3 days after hives have gone. I’m on methotrexate and was never told it can make my arthritis worse. That explains why my pain has been constant x
Monica Jones I’m saying for me personally MTX wasn’t doing it for my RA symptoms as it may for many but it controlled my Urticaria. Now Remicade is working on RA but not so much for the urticaria. Not sure if ppl are on both Remicade & MTX? I’m calling my rheumy today.
Marie Bint-Whyley Methotrexate has helped my hives a lot but after 5 yrs they are concerned about my pllns as levels gone high ans won’t come down. So I’m due to start xolaire in may.
Monica Jones What is pllns?Do you have other issues or solely urticaria?
Marie Bint-Whyley Its your liver levels. Chronic and pressure urticaria had for 11 yrs also B12 deficiency and osteoarthritis
Robyn Starks Angeoedema
Jennifer Spoor It could be vasculitis. I have urticarial vasculitis and it was diagnosed based on the fact that my hives last longer than 24 hours and they leave a reddish/purplish mark that slowly fades away over time.
Monica Jones Do you have any pics of your outbreak? Did a rheumatologist diagnose your UV?
Jennifer Spoor It was diagnosed by a dermatologist but I also see a rheumatologist regularly (I also have lupus).
Monica Jones Jennifer thank you for the info. I’m gonna pray for your strength & healing!
Evelyn Brethour Whoa, Monica, this is a lot to deal with. Do you have a doctor that acts as “leader” of your complex care? Do you think your rheumatologist willt take responsiblity for diagnosing this “new” condition? Do you have an immunologist currently working with you? Time is going to reveal a lot about this hives. I hope you are not too terribly miserable.
Monica Jones I’m seeing a rheumatologist regularly but not an immunologist. I put a call in to my rheumy today because these hives are presenting differently than before which has me a little concerned but I’m still awaiting her return call. Thanks for your concern!
Evelyn Brethour Monica Jones You have good instincts. I have urticarial vasculitis, and it doesn’t always present the same way. Early on there was a lot of bruising, but as the immunosuppressants started working, the bruising greatly diminished. I was diagnosed from a biopsy. I also have general C.U.
I have also been on prednisone twice, both times making my hives symptoms worse.
I know you all are the people who will understand.
