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

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Presentation on theme: "Managing an Alemtuzumab Service Gail Clayton Lead MS Clinical Nurse Specialist & Jacki Smee MS Clinical Nurse Specialist Cardiff and Vale University Health."— 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 Background on setting up Alemtuzumab service Patient selection Patient selection Infusion related and long-term side-effects Infusion related and long-term side-effects Ongoing monitoring requirements Ongoing monitoring requirements Potential challenges Potential challenges Case studies Case studies

3 Historical perspective Consultant with special interest appointed Consultant with special interest appointed A number of patients with highly active / aggressive MS A number of patients with highly active / aggressive MS 2001 – Helen Durham 2001 – Helen Durham Cambridge trial Cambridge trial 2002 – 1 st patient treated in Cardiff 2002 – 1 st patient treated in Cardiff Risk Sharing Scheme – negotiated funding with WAG to include all disease modifying therapies 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 Training and education Interpreting blood results Interpreting blood results Pre-treatment screening Pre-treatment screening Managing the infusion Managing the infusion Ongoing management and follow-up Ongoing management and follow-up MDT review of the protocol 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 Bloods Pregnancy Pregnancy Cervical Screening Cervical Screening Shingles Shingles Commitment to monitoring Commitment to monitoring Side effects Side effects Irradiated blood products Irradiated blood products Consent Consent

9 Managing Expectations

10 So what do we do? 1. Identify patients 2. Discuss at MDT 3. Admit to Neurology Day Unit 4. Patient information folder 5. Buddy system 6. In-patient prescription 7. Take home medications In-patient prescription

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

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

13 Irradiated Blood Products

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

15 Thyroid Disease

16 What to look for

17 ITP Rash Rash Easy bleeding Easy bleeding Bruising Bruising Platelet count↓ Platelet count↓

18 Other Haematology Other Haematology Haemolytic anaemia Haemolytic anaemia Neutrophilia Neutrophilia Pancytopenia Pancytopenia

19 Dermatology

20 Anti-GBM (Goodpasture’s Syndrome)

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

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

23 Getting it right Diagnosed Aug x Apr Oct Rebif Nov x 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 x x1 Natalizumab Dec 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 ! 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. 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! 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 Alemtuzumab is highly effective at reducing relapses Significant side-effect profile Significant side-effect profile Restrict use to Restrict use to more aggressive disease more aggressive disease conventional treatments failures conventional treatments failures Absolute need to ensure robust long-term monitoring and follow-up Absolute need to ensure robust long-term monitoring and follow-up Preceptorship Preceptorship


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