Cryoglobulinemia ???

[jimbo1605]

Has anybody come across this before please ?

She has SLE and all the symptoms of sjogrens.

My wife is regularly breathless and they have largely ruled out the lungs (although she has moderate scarring on her right lung). So now the culprit looks like the blood.

This could certainly be APS but they are also looking at the cryoglobins along with an extended ENA panel.

Any experiences of the same - thoughts most welcomed ?

[Hoofprints]

Sorry to hear this news.

I don't have experience of cryoglobulinemia but wondered if you might find it helpful to call John Mills or his partner, Susan, at vasculitis.org.uk?

They have lots of knowledge and experience and might even have a volunteer or patient who does have experience of the disease and who is willing to talk to you about it.

The helpline number is 0300 365 0075. Their website also has lots of information.

Good luck🍀

[jimbo1605 in reply to Hoofprints]

Thank you so much for your very helpful reply.

[Hoofprints in reply to jimbo1605]

You're welcome and good luck 🍀

[debsgm]

Try the Vasculitis Foundation website for info on cryoglobulinemia:

vasculitisfoundation.org/ed...

Basic info:

“,,,Cryoglobulinemia is a form of vasculitis—a family of rare disorders characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues. In cryoglobulinemia, abnormal blood proteins called cryoglobulins clump together at cold temperatures, restricting blood flow and causing damage to skin, muscles, nerves, and organs—especially the kidneys. More rarely, it can affect the heart, brain, and gastrointestinal tract. Cryoglobulinemia almost always occurs in people who have hepatitis C virus (HCV)….” etc.

Also:

“…People with cryoglobulinemia may or may not have symptoms. When symptoms are present, they typically include a skin rash with red spots, or a purplish discoloration from bleeding under the skin (purpura); joint or muscle pain; numbness; weakness; fatigue; and breathing difficulties, among others...”