An interesting month. After 13 years of not knowing one other person with Schnitzler Syndrome, I have now linked up with 28 others via a support group on Facebook. Their stories are all so strangely familiar, particularly the part about Kineret giving us our lives back.
So, on my 7th day of reducing my Kineret dosage to every 34 hours, I became very ill, so had to pull back a bit. I have now worked back to every 32 hours, without ill effects, and am staying there for a while. Talking to SS people on Facebook, only two of them have managed to get down to injections every two days; most others have to stick to every 24 hours, and one of them even gets ill again before the 24 hours is up. So it seems I'm somewhere in the middle. None of them have developed lymphoma (yet), which may be due to taking Kineret.
I had my annual haematologist visit during the month and, apart from my protein spike (7.0), my blood results are "the most normal I've seen in a long time" says the doc. I'm well pleased.
My weight loss plateaud for a few weeks, but have started to lose a little again. Had one migraine in past month (just yesterday). My daily walks continue (except when "poorly").
