has anyone noted mild muscle weakness as either a symptom or side effet of medication? thanks for any info or experiences!!

What medication(s) are you on? It may depend on the medication you are on if this is a drug effect. There are some patients with MWS and other forms of CAPS that have some lax muscles, or some muscle weakness prior to being on medications that is related to the syndrome effects. I would suggest possibly posting this question on a larger forum for MWS patients worldwide, such as http://www.rarediseasecommunities.org/en/community/caps to see if you get more responses to your question too. I will look into this for you, if you share what medications you are on. Feel free to contact me by email too at karen,nomidalliance.org@gmail.com I am the presindent of The NOMID Alliance-dedicated to helping patients with CAPS and other autoinflammatory diseases. Best wishes, Karen Durrant nomidalliance.org

I noted that you are a medical professional too. Send me an email, and I can help you find some information. Thanks, Karen Durrant

currently, canakinumab had been on anakinra initially thanks!

I have not heard from any patients yet with increased muscle weakness from these medications, so you may want to call the patient assistance line for Ilaris 1-877-452-7471 to ask about this, and talk to your doctor too. There are patients that have had issues with lax muscles, or tendons in some cases of CAPS, which can be present throughout the body, but this has been noted more with patients that have more chronic inflammation, and were noted before going onto medications for CAPS. This can persist to some degree while on medications, but for some it improved. We also have a large CAPS community on facebook in a private group with almost 200 members http://www.facebook.com/groups/41019328476/ it is private, but you can ask to join. I will ask the group this question and get back to you, but feel free to join and ask too, or ask on the rarediseasecommunities.org CAPS group too. Thanks, Karen