Die Chroniken von Ilaris - Band 2 jetzt zum Download bei #Orkenspalter: www.orkenspalter.de/filebase/ind... #Rollenspiel #DSA #Ilaris #Fantasy
Every 3 weeks, I inject my kid with this little vial of medicine. It costs over $18,000 without insurance. What the F will happen when the ACA protections are repealed? #autoinflammatorydisease #pedsrheum #ilaris
I attended the wonderful @CAFsociety #FamilyDay event in King City today, w\ my 11yo daughter. We connected w\ other families, clinicians & researchers. Tonight we take our next doses of #Ilaris to treat our #MuckleWellsSyndrome. @CdnANetwork @CanadianRDN @Novartis #RareDisease
Na gut, dann nehmen wir noch am Ilaris-Abenteuer-Wettbewerb teil.
Mit einem Solo-Abenteuer.
Auf nach Stippwitz!
#pnpde #dsa #ilaris
Luckily, we had access to an effective therapy called #Ilaris by @Novartis. It is a biologic that we take by injection every 8 wks @ ~$16K/dose and all the symptoms go away. We were lucky to have coverage b/c not everybody does.
Our nurse came today to give us our #Ilaris. Every 8 weeks, no fail, for the rest of our lives. $16K each dose = $100K+\year\person for my oldest daughter and I.
Counting our blessings, today and every day.
#MuckleWells #CAPS #RareDisease @CdnCAPSNet
...my daughter was the youngest person with #MWS to ever take #Ilaris, which is an immuno-suppressant #biologic drug that she takes by sub-cutaneous injection every 8 weeks (the nurse comes to our house tomorrow at 7am). She will never have really have to...
Let me tell you about the difference that this drug can make. If he only needs half a dose, then my daughter has that with her unusable leftovers. Step up B.C. & @Novartis. This is stupid. The @globalnews article seems to have the $ wrong too. #Ilaris is generally $16k / 8 wks.
Very timely re-post b/c we rec'd our meds this morning. Every 8wks a nurse visits our home (at 7am!) & administers our #Ilaris. #raredisease
I think the FB group is private, but here's the link to today's article about #ilaris #cankinumab:
This is an interesting development for #ilaris #canakinumab @NovartisPharma 'Biggest breakthrough since statins'
#Ilaris is used for CAPS, including #mucklewells, #NOMID & #FCAS. Visit to learn more.