ILD Patient Handover to Local Follow-up for Nintedanib Monitoring

Patient initials: NHS number: DOB:

Diagnosis Date established on treatment:

Tests/Referrals
BP: ECG:

Pulmonary Function Tests:

Ref meas %ref
Date: FEV1
FVC
Date next due: DLCO
Oxygen: If not on oxygen Sp02…….
Shuttle performed Yes/No
LTOT ….L ….% NC/mask If yes results……………………………
Ambulatory …L ...% Refer locally for O2 Ax □
NC/mask
Pulmonary Rehabilitation:

Yes/No Date:

If no please refer to local PR service □

Bloods
Pre treatment Post treatment
Date:
LFT NAD: yes/no NAD: yes/no
Abnormalities: Abnormalities:

U&E NAD: yes/no NAD: yes/no

Abnormalities: Abnormalities:

FBC NAD: yes/no NAD: yes/no

Abnormalities: Abnormalities:

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Monitoring Schedule:
1. 3 x monthly monitoring then reduce to 3 monthly
2. Pulmonary Function tests 6 monthly
3. Annual consultant review by Manchester ILD team.

During every appointment please:

1. Check weight and BP.
2. Changes in breathlessness/cough.
3. Any infections/ exacerbations/hospital admissions/ associated GP
visits. See variance 2
4. Any changes in medication?
5. Any planned surgery? See variance 7
6. Bloods
7. Side effects

Month Bloods Side effects Dose Altered

Change dose.
Inform MFT
Month 1 NAD/variance NAD/variance yes/no …..
Month 2 NAD/variance NAD/variance Yes/no …..
Month 3 NAD/variance NAD/variance Yes/no …..
Month 6 NAD/variance NAD/variance Yes/no …..
Month 9 NAD/variance NAD/variance Yes/no …..
Month 12 (Manchester ILD Team)

Nintedanib Side Effect Management

Side effects Nintedanib Variance

Diarrhoea Variance 1
Indigestion Variance 3
Nausea Variance 4. If still struggling variance 6
Intolerable side effects Consider Variance 5
Tiredness Variance 6
Abnormal bloods Variance 8
Abdominal pain Variance 9. If still struggling variance 6
Reduced Appetite Variance 10
Weight loss Variance 10

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 Variances

Variance 1 Diarrhoea. Is it manageable for the patient?

If yes, monitor
If not suggest Loperamide to control diarrhoea symptoms
If uncontrollable discuss options with patient of reducing the dose to 100mg BD
or stopping
Inform Manchester ILD team
Variance 2 Infection, if clinical signs of infection
Consider prescribing: Amoxicillin or Doxycycline
Please note: caution in erythromycin (see appendix 2) and rifampicin.
It is appropriate to continue long term azithromycin with Nintedanib.
Variance 3 Indigestion. Ensure that the patient is taking their medication in the middle of a
meal/substantial snack with a glass of water.
If indigestion continues consider requesting a PPI, add in Gaviscon advance if
symptoms continue and consider GP referral for further investigation. It is
preferable that indigestion is under control in IPF.
Variance 4 Nausea. Ensure that the patient is taking their medication in the middle of a
meal/substantial snack with a glass of water, if not ask them to try this and see
if that solves the problem. Could it be indigestion or post nasal drip? If so treat.
If not, for short term management consider Metoclopramide up to 5 days only.
(MHRA guidance)
For long term nausea management consider Cyclizine or Ondansetron (see
appendix 1 for further information)
Variance 5 Stop Nintedanib. Inform Manchester ILD team for further guidance

Variance 6 If this is an intolerable side effects consider reducing the dose to 100mg BD,
stop if continues to be intolerable after a reduction in dose.
Inform Manchester ILD team
Variance 7 If you are advised that the patient is undergoing planned surgery stop
Nintedanib 4 week’s pre surgery.
Restart 6 weeks post-surgery unless medication changes such as Warfarin,
Clopidogrel and Aspirin (contact Manchester ILD team)
Variance 8 Monitor 2 weekly unless AST or ALT >3x upper limit of patients normal.
If so reduce Nintedanib or interrupt treatment and monitor bloods 2 weekly.
Once AST or ALT has returned to base line reintroduce Nintedanib at 100mg
BD initially aiming to increase to the full dose following close liver function
monitoring.
If liver test elevations are associated with clinical signs and symptoms of liver
injury permanently discontinue Nintedanib. (see appendix 3)
Inform Manchester ILD team
Variance 9 Ensure that the patient is taking their medication in the middle of a
meal/substantial snack with a glass of water, if not ask them to try this and see
if that solves the problem
Variance 10 Encourage dietary input, advise 5 small meals per day (added snacks if weight
loss and refer to GP for dietician input/ drink supplements if significant weight
loss). If continues consider dose reduction to 100mg BD or treatment
interruption.
Inform Manchester ILD team

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 Appendix

Appendix 1 1st line and 2ND line antiemetic choice is a suggestion depending upon local
trust guidance. As we are unable to use Metoclopramide long term (MHRA)
cyclizine and ondansetron have few side effects for long term use. Caution
in cyclizine includes misuse/abuse and high alcohol useage. Caution in
ondansetron includes avoid in patient with a cardiac history due to
prolonged QT interval and patients with constipation. There is no evidence
for long term use of an antiemetic, this guidance has been made when
considering risk verses benefit.
Appendix 2 If erythromycin is indicated consider reducing the dose of Nintedanib if
prescription allows (ie 150mg bd can reduce to 100mg bd)
Appendix 3 Discuss with your consultant who may consider abdominal USS locally.

Contact Details
 Interstitial Lung Disease Specialist Nurses: Helen Morris, Tracey Marshall and Katie
Zakis tel 0161 291 4936 email ILDNurseManc@mft.nhs.uk
mft.ildnursemanc@nhs.net
 Consultants: contact c/o Secretaries Ann Soloman and Liz Kendra tel 0161 291 5054
email ildsecmanc@mft.nhs.uk
 MDT coordinator Collette Hollinworth email collette.hollinworth@nhs.net
 Polarspeed- Abbie Fisk 01525 216771 email Abbie.Fisk@polarspeed.com.

Fibrosis Support Groups

 Please refer to www.actionpulmonaryfibrosis.org for a list of local support groups.

Charities
 The British Lung Foundation: www.blf.org.uk Helpline 03000 030 555
 Action for Pulmonary Fibrosis: www.actionpulmonaryfibrosis.org Helpline 01223
785725

Website and social media

 Website: https://northwestipfmanchester.weebly.com/
 Facebook: North west and Greater Manchester Interstitial Lung Disease Unit
 Twitter: @NorthWestILDIPF Nurses: @ipf_manchester

References:
1. MHRA: Metoclopramide: risk of neurological adverse effects. Available
at:https://www.gov.uk/drug-safety-update/metoclopramide-risk-of-neurological-
adverse-effects#advice-for-healthcare-professionals (accessed 20/7/18).
2. National Institute for Health and Care Excellence (2013). Idiopathic Pulmonary
Fibrosis the diagnosis and management of suspected idiopathic pulmonary fibrosis
available at: https://www.nice.org.uk/guidance/cg163/chapter/introduction (Accessed
20/07/18)
3. National Institute for Health and Care Excellence (2016). Nintedanib for treating
Idiopathic Pulmonary Fibrosis. Available at:
https://www.nice.org.uk/guidance/TA379/chapter/1-recommendations (Accessed on
20/07/18)
4. Nintedanib Summary of product characteristics: Available at:
https://www.medicines.org.uk/emc/medicine/30110#MACHINEOPS last accessed
20/07/2018.

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