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Managing an Alemtuzumab Service

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Presentation on theme: "Managing an Alemtuzumab Service"— Presentation transcript:

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

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 ITP Rash Easy bleeding Bruising Platelet count↓

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 s 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
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 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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