Hi I have low risk single lineage Myelodysplastic syndrome ('MDS'). I am severely neutropenic . I also have psoriatic arthritis which is apparently linked. I would be very interested in hearing from anyone else with both conditions. Fortunately I am now with Kings for both and start a new treatment Monday.
Hi @Evelyn61, welcome back - though I’m sorry it’s because you’re having these issues.
I’ve had a search, but the Myelodysplastic syndrome ('MDS') and psoriatic arthritis combination isn’t something that’s come up much here that I’ve been able to find, so I don’t have anyone specific to point you towards just yet - but hopefully some of our members living with both, or with other overlapping autoimmune and blood conditions, will see this and get in touch.
In the meantime, I’m going to tag @Kimberley, who’s been navigating Monoclonal gammopathy of unknown significance ('MGUS') alongside arthritis and a couple of other autoimmune conditions herself - hopefully she’ll feel able to share a bit of her experience if she’d like to. (@Kimberley, please don’t feel any pressure to respond, but if you’re able to contribute then we’d be very grateful.)
Given you’re severely neutropenic, our page on infection, neutropenia and sepsis might be worth a look if you haven’t already come across it, particularly with the new treatment starting. And for the psoriatic arthritis side, PAPAA (Psoriasis and Psoriatic Arthritis Alliance) is a good UK charity to take a look at.
Wishing you well for today, do let us know how you get on.
Take care,
Ceri - Blood Cancer UK Support Services
Hi Ceri thank you ! I carry a couple of cards around notifying people and professionals of my status, but I will definitely check the pages out again. I have had to stop working on reception and swimming which I love. I must admit I get double the fatigue as my bone marrow is fighting on all sides, but still here!