has anyone heard of Schnitzler's syndrome?

[kendall71]

[allanah]

Ooh, just googled it so joint pains and awful rashes, do they think u have it?

[kendall71]

I do not, but my son has been diagnosed with it, was just wondering if anyone self has it? We are told it is extremely rare.

[allanah]

I have nursed a long time and not come across it. There seemed to be though a lot of information on google and Wikipedia. You could try ringing the Nras helpline as they have access to specialist consultants I believe for advice and may be able to answer your questions. You must be very worried as with it being rare it's not just so easy to put up a blog and get immediate answers. How old is your lad? Is he on any treatments yet or when do you see the docs next if not.

I know that a lot of questions but your question is brief. You know though we are here is you just want a chat and the helpline as I say are brilliant and what they don't know they may be able to point you in the right direction.

I had an episode with my eldest son where we had about two weeks thinking he had a tumour on his lung, thankfully it turned out to be something different but I do therefore understand a little of what it's like when they tell you your child is ill.

Are his doctors good, do u have a helpline to your nurse specialists?

Anyway, thinking of you and hope you get some answers sooner rather than later for your family. Sending hugs to you all xxxxx

[kendall71]

Thanks for your concern. My son is 41, he has been suffering for over three years before they finally diagnosed him with Schnitzler's, now we are still waiting for a treatment plan. Apparently it is so rare they are not sure how to treat it. His flare ups can last 8 hours to 2 days, causing him to miss work, which is a concern. We are hoping that treatment will began so.

[allanah in reply to kendall71]

Ouch, that sounds awful! Poor guy he must be passed himself. And I know about missing work, I got laid off last year and it's two edged, you don't feel well enough to go but then you miss going and worry about time off so u can't relax to get better!

Maybe the hospital can put you in touch with others who have the illness? They might know other clients as I am sure they are phoning other consultants who have experience of the syndrome.

Sorry I don't know much about this rare illness but if u google there is a lot of info.

Would you post when u know more, not being weird but I would want to know more about it, u could raise our awareness, if u have time. And thinking of you, bet you are worried sick hugs Axx

[Gayedianne]

Hi Kendall, I have Schnitzler Syndrome. It took 7 years before it was diagnosed and, even then, it was by accident. My rheumatologist tried many different medications for me, but they didn't help. He had one thing left in his array and that is the only thing that has ever worked. It is called Kineret (Anakinra) and is injected daily. It is a wonder drug for me. All symptoms disappeared within 24 hours of my first injection after being a physical wreck for 7 years. Because of my good response, my rheumatologist went online to read about Kineret and came across Schnitzler Syndrome, which he had never heard of. I fitted the symptoms like a glove. Antihistamines do NOT work with this condition, nor the usual rheumatoid arthritis meds. It is an auto-inflammatory disease - google it and you will find more info. I can't stress enough how good Kineret is ... BUT it is very expensive.