Presentation on theme: "Managing an Alemtuzumab Service"— Presentation transcript:
1Managing an Alemtuzumab Service Gail ClaytonLead MS Clinical Nurse Specialist&Jacki SmeeMS Clinical Nurse SpecialistCardiff and Vale University Health Board
2Aims Background on setting up Alemtuzumab service Patient selection Infusion related and long-term side-effectsOngoing monitoring requirementsPotential challengesCase studies
3Historical perspective Consultant with special interest appointedA number of patients with highly active / aggressive MS2001 – Helen DurhamCambridge trial2002 – 1st patient treated in CardiffRisk Sharing Scheme – negotiated funding with WAG to include all disease modifying therapies
4Setting up the service Ad hoc Limited staff knowledge No patient informationMS nurse working 12 hour days - competence?No follow up and monitoringKeen to learn and develop a protocol
5Protocol Development Training and education Interpreting blood results Pre-treatment screeningManaging the infusionOngoing management and follow-upMDT review of the protocol
10In-patient prescription So what do we do?Identify patientsDiscuss at MDTAdmit to Neurology Day UnitPatient information folderBuddy systemIn-patient prescriptionTake home medicationsIn-patient prescription
11Infusion related side-effects Cytokine release syndromeRashHeadacheTransient worsening of neurological deficitChest tightness
12Information following infusion Self-management-patient information folderDietary advice leafletTime off workFatigueVaccinationsMonitoring requirementsIrradiated blood products
21Other Opportunistic infections Cancers Human Papilloma Virus Herpes Simplex Type 1 and 2
22Challenges! Cancelled appointments MRI Accessing blood results DNA Monitoring to month 60Responsive serviceDatabases for patientsCostWhere to go nextMotivating patients to continue follow upLonger term……….
23Getting it right Diagnosed Aug 2006 2007 x2 2008 Apr Oct Rebif Nov 20082009 x22010 x4Scanned 2010 new and enhancing lesionsTreated Oct 2010 & 2011Currently building houses in Nepal for a charity
24When all else fails Diagnosed Nov 2008 Relapses 2009 x2 Rebif Oct 2009 Natalizumab Dec 20112012 x4NABs +Liaison with Cambridge6 month washoutAlemtuzumab Nov 2012Re-scan next week
25Complications! Relapse at onset 2007 Diagnosed Oct 2008 Relapses 2008 x3Alemtuzumab April 2009, 2010, 2011Thyrotoxicosis 2010Herpes zoster 2011Vitiligo 2011Athritis 2011Psoriasis 2011
26Patient comments!After my MS Campath treatment it felt like i had hit rock bottom, feeling useless, drained and fatigued in a big way. Then a few months later i felt like Superman, felt like i had been cloned. NOTHING CAN STOP ME, NOT EVEN MS !Campath has given me my life back. Before my first infusion, life was steadily closing in. I had no room to breathe between relapses, each one leaving me weaker than before. Campath stopped MS in its tracks. I may still have the same symptoms as pre-Campath, but there has been absolutely no disease progression since last summer. A miracle? It certainly feels that way. I still get bad days, but they are more than outweighed by the good. My son is no longer frightened at the decline in my health. I am able to be fully-engaged in his life once more, a precious, priceless gift.I received my first dose of Campath in November At this time I was confined to a wheelchair because I was having relapse after relapse and was unable to walk. Before recovering from one relapse I was going into another. I now work 4 days a week in a school. I am so grateful to have been able to have this treatment, it has made such a difference giving me back quality of life. I feel myself again!
27Conclusions Alemtuzumab is highly effective at reducing relapses Significant side-effect profileRestrict use tomore aggressive diseaseconventional treatments failuresAbsolute need to ensure robust long-term monitoring and follow-upPreceptorship