Hi Becky. I am so sorry to hear that your headaches are so bad. You may
remember that I told you that I had a very similar reaction after my first
LP at the NIH. I ended up being flat on my back for two weeks in the
hospital at the NIH. Every since then the headaches have been part of my
flares. Our situations sound very similar with the headaches. I was
wondering if you could describe your headaches. My pain feels like my entire
head is on fire. It is not necessarily like a headache in the front of my
head. That hurts too, but the burning is what really gets me. It feels like
the lining of my brain is inflamed. Dr. Goldbach-Mansky thinks that there is
something in the spinal fluid that is elevated. I think she said cytokine
levels. She will not do another LP because my reaction was so bad. We need
to do one to determine what is going on, but it is not worth the risk.
So...when the headaches flare now I am increasing the Anakinra and I have
seen some direct results from increasing the dosage for a certain period of
time until things calm down. It usually takes about three days and slowly
gets better over the next few weeks. Have you tried that? I know you have
much more severe eye issues and I know that affects your situation and
treatment differently from mine. My daughter also suffers with the
headaches. We have seen some improvement since she started on the Anakinra.

I really wish you and I could talk with the NIH about the similarities in
our situation. We go to the NIH next week. Do you mind if I talk with Dr. G.
about the similarities.

I hope your headaches improve. I know it makes it very hard to function on a
daily basis when they get bad. I will be thinking about you. I would ask
about increasing your Anakinra dosage.

Jennifer Earnhart