Barry is happy for me to share with you that he has spondyloarthritis (SpA), with both Ankylosing Spondylitis (AS) and Crohn's disease.
Image courtesy of graur codrin/ FreeDigitalPhotos.net
He's on TNF-inhibitor therapy (Cimzia) as well as an anti-inflammatory medication to help his problems, including a number of other medications.
Barry's major issue is sleep disturbance and he's allowed me to quote him:
"The night sweats occur for a few day period once every month or so. I wake up in constant thirst from sweating, and with chills. It occurs during about half of my flare ups. None of my doctors have a good explanation as to the cause, or advice about dealing with night sweats.
The topic I wanted to address is more broad than night sweats. During "good periods" (a very relative term), I wake up 3 or 4 times a night, due to stiffness. During severe flares, I wake maybe 10 - 15 times a night. (I bet many of your patients experience this to some degree. It SHOULD be addressed on your patient survey.)
This level of sleep interruption greatly effects my physical and mental health. It's depressing. It aggravates all of my conditions, more than any other single factor.
Apart from the flare ups, there are other night time issues. How do you get yourself comfortable to sleep? As mentioned before, I cannot sleep on my front or back due to my spine. I position pillows in front and behind me to keep on my side. But sometimes I have significant hip pain. This is a dilemma."
I imagine some portion of your patients experience this to some degree. I'm curious what nighttime issues they face and how they deal with them. Do they have advice for my issues? This has potential to be a very beneficial topic for your followers. And you might learn a bit about what difficulties your patients face. I can't be the only one with these issues, right?"
As a rheumatologist, I know that my SpA patients can be sleep-disturbed, and I do ask some rudimentary questions about this. If patients have night sweats, I would typically worry about:
b) Blood disorders/malignancy
c) Very active, poorly controlled inflammatory/autoimmune disease
I don't know Barry's history in any significant detail. I of course don't want to be providing personalised advice on social media as it would not be appropriate. Barry understands this. But he would like general help from readers of this blog.
He tells me he has great doctors who he has faith in, and I am sure they've already excluded any nasties. He's from the USA, so it's likely that he has been thoroughly investigated rather than under-investigated.
In addition, the recurrent and long term nature of these nocturnal symptoms would suggest that they are part of his "regular" medical issues.
AS/SpA can of course cause significant stiffness and discomfort at night. My experience is that this improves a lot once the disease is controlled with NSAIDs and/or TNF inhibitor therapy (when effective).
But do these problems continue even when your rheumatologist tells you the disease is under control? And, what about the night sweats?
Barry, and I, would love to hear your experiences.