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Managing an Alemtuzumab Service

Managing an Alemtuzumab Service. Gail Clayton Lead MS Clinical Nurse Specialist & Jacki Smee MS Clinical Nurse Specialist Cardiff and Vale University Health Board. Aims. Background on setting up Alemtuzumab service Patient selection Infusion related and long-term side-effects

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Managing an Alemtuzumab Service

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  1. Managing an Alemtuzumab Service Gail Clayton Lead MS Clinical Nurse Specialist & Jacki Smee MS Clinical Nurse Specialist Cardiff and Vale University Health Board

  2. Aims • Background on setting up Alemtuzumab service • Patient selection • Infusion related and long-term side-effects • Ongoing monitoring requirements • Potential challenges • Case studies

  3. Historical perspective • Consultant with special interest appointed • A number of patients with highly active / aggressive MS • 2001 – Helen Durham • Cambridge trial • 2002 – 1st patient treated in Cardiff • Risk Sharing Scheme – negotiated funding with WAG to include all disease modifying therapies

  4. Setting up the service • Ad hoc • Limited staff knowledge • No patient information • MS nurse working 12 hour days - competence? • No follow up and monitoring • Keen to learn and develop a protocol

  5. Protocol Development • Training and education • Interpreting blood results • Pre-treatment screening • Managing the infusion • Ongoing management and follow-up • MDT review of the protocol

  6. A Team Approach

  7. Patient Selection • MRI • Disease onset • Clinical relapses • Cognition • Family plans • Risks / benefits / informed consent • Alternatives

  8. Pre treatment screening and counselling • Bloods • Pregnancy • Cervical Screening • Shingles • Commitment to monitoring • Side effects • Irradiated blood products • Consent

  9. Managing Expectations

  10. Identify patients Discuss at MDT Admit to Neurology Day Unit Patient information folder Buddy system In-patient prescription Take home medications In-patient prescription So what do we do?

  11. Infusion related side-effects • Cytokine release syndrome • Rash • Headache • Transient worsening of neurological deficit • Chest tightness

  12. Information following infusion • Self-management-patient information folder • Dietary advice leaflet • Time off work • Fatigue • Vaccinations • Monitoring requirements • Irradiated blood products

  13. Irradiated Blood Products

  14. Longer term side effects • Autoimmune diseases: • Thyroid Disease • ITP • Haematology • Rheumatology • Dermatology • Good Pastures • Varicella

  15. Thyroid Disease

  16. What to look for

  17. Rash Easy bleeding Bruising Platelet count↓ ITP

  18. Other Haematology • Haemolytic anaemia • Neutrophilia • Pancytopenia

  19. Dermatology

  20. Anti-GBM (Goodpasture’s Syndrome)

  21. Other • Opportunistic infections • Cancers • Human Papilloma Virus • Herpes Simplex Type 1 and 2

  22. Challenges! • Cancelled appointments • MRI • Accessing blood results • DNA • Monitoring to month 60 • Responsive service • Database • Emails for patients • Cost • Where to go next • Motivating patients to continue follow up • Longer term……….

  23. Getting it right • Diagnosed Aug 2006 • 2007 x2 • 2008 Apr Oct • Rebif Nov 2008 • 2009 x2 • 2010 x4 • Scanned 2010 new and enhancing lesions • Treated Oct 2010 & 2011 • Currently building houses in Nepal for a charity

  24. When all else fails • Diagnosed Nov 2008 • Relapses 2009 x2 • Rebif Oct 2009 • 2010 x3 • 2011 x1 • Natalizumab Dec 2011 • 2012 x4 • NABs + • Liaison with Cambridge • 6 month washout • Alemtuzumab Nov 2012 • Re-scan next week

  25. Complications! • Relapse at onset 2007 • Diagnosed Oct 2008 • Relapses 2008 x3 • Alemtuzumab April 2009, 2010, 2011 • Thyrotoxicosis 2010 • Herpes zoster 2011 • Vitiligo 2011 • Athritis 2011 • Psoriasis 2011

  26. Patient 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 2012. 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!

  27. Conclusions • Alemtuzumab is highly effective at reducing relapses • Significant side-effect profile • Restrict use to • more aggressive disease • conventional treatments failures • Absolute need to ensure robust long-term monitoring and follow-up • Preceptorship

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