This document outlines the process for setting up and managing an alemtuzumab service for treating multiple sclerosis. It discusses selecting appropriate patients, monitoring treatment and side effects, and establishing protocols. It also describes challenges such as ensuring long-term follow up and managing side effects like autoimmune diseases. Case studies demonstrate both successful outcomes and complications from alemtuzumab treatment.

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

4. Setting up the service
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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
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Training and education
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Interpreting blood results
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Pre-treatment screening
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Managing the infusion
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Ongoing management and
follow-up
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MDT review of the protocol

6. A Team Approach

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

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

9. Managing Expectations

10. So what do we do?
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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
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Rash
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Headache
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Transient worsening of
neurological deficit
•
Chest tightness

12. Information following
infusion
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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
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Autoimmune diseases:
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Thyroid Disease
ITP
Haematology
Rheumatology
Dermatology
Good Pastures
Varicella

15. Thyroid Disease

16. What to look for

17. ITP
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Rash
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Easy bleeding
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Bruising
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Platelet count↓

18. Other Haematology
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Haemolytic anaemia
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Neutrophilia
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Pancytopenia

19. Dermatology

20. Anti-GBM (Goodpasture’s
Syndrome)

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

22. Challenges!
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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
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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
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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!
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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!
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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 !
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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.
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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
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Alemtuzumab is highly effective
at reducing relapses
Significant side-effect profile
Restrict use to
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more aggressive disease
conventional treatments failures
Absolute need to ensure robust
long-term monitoring and
follow-up
Preceptorship
Graph showing relapses pre and post Campath treatment
20
19
18
Relapses
17
Patient 1
16
Patient 2
Patient 3
15
Patient 4
14
Patient (Number 1-19)
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Patient 5
13
Patient 6
12
Patient 7
11
Patient 8
10
Patient 9
9
Patient 10
Patient 11
8
Patient 12
7
Patient 13
6
Patient 14
5
Patient 15
4
Patient 16
3
Patient 17
2
Patient 18
Patient 19
1
0
-1
-4000 -3500 -3000 -2500 -2000 -1500 -1000 -500
0
500
Time (Days Pre and Post Campath)
1000