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