behçet’s · pregnancy comments patients with behçet’s during pregnancy may require close...

Name:

Date of Birth:

Hospital No.:

NHS No.:

My Individual Personal Care PlanBehçet’s

RheumatologyDepartment

Behçet’s Individual Personalised Care Plan

Proud to make a differenceBehçet’s syndrome is a varied and variable condition. People are affected to different degrees and even in the same individual symptoms will vary and change over time. Learning more about Behçet ’s syndrome will help you understand the condition, know how the symptoms can be helped, what treatments are available and generally empower you to minimise the impact of the condition on your quality of life. By becoming actively involved in the day-to-day management of your health you stand a better chance of maintaining all the activities you enjoy. Understanding what Behçet’s is and what is happening inside your body will enable you to plan for tomorrow and the future. The next step is learning what you can do and what your limits are. The third step is forming and following a self-management plan for your life.

Individual Personal Care Plan There are no rules around care plans - use them in whatever way is most useful to you. As a general guide:-1. The personal profile is the first part to complete. This gives you the advantage of only having to complete your general information once, regardless of how many care plans or long term conditions you have.2. Identify and complete the plan/s relevant to you; work with your health care professional to complete the relevant sections, and understand the information contained within the plan. 3. Continually update your plan, and take it with you to any health care appointments that you may have.

Remember:Care planning isn’t just about filling in the form; it’s much more than that and should help you to be actively involved in managing your own condition and influencing the care that you may receive.

2Behçet’s Individual Personalised Care Plan

Health Care Team: Contact No:

GP

Consultant Rheumatologist

Rheumatology Clinical Nurse Specialist

Physiotherapist

Occupational Therapist

Community Matron

District Nurse

Other:

Other:

Behçet’s Individual Personalised Care Plan 3

Primary Diagnosis

Other Health Conditions


Living with Behçet’sLiving well day to day with Behçet’s can be achieved by:Learning about your body and what may be happening to it. Learning about your health professionals, the recommended medications, and what they might do for you. Find out what can improve your health, such as losing weight or starting a flexibility exercise program.

Learn how to cope with chronic pain, fatigue, and stiffness:Experiment and learn what can help you feel better and what makes things worse. Some people can write without pain while others can not, and the same goes for walking, aerobics, etc.Learn basic skills, such as ways to use your body that protect stiff areas, that will help you continue activities.

Take an active role in managing your Behçet’s:Gather information about Behçet’s and the steps you can take to stay active.Work with your team of health professionals, friends, and family to set up a self-management plan.Set goals to enhance your coping and strengthening skills and incorporate these goals into your life. Follow through with your self-management plan on a day-to-day basis.


Preparing for your outpatient appointments

List of medication:- remember to take a full list of your:-• Prescription Medication. Over the counter

regular medication e.g. paracetamol etc.• Herbal or complementary medication e.g. devils

claw etc. Know your allergies:- Have a list of your known allergies

Urine sample:-A dip stick test is often used to monitor protein leakage and identify and assess urinary tract infections (UTIs). Most people with kidney problems will have an abnormal urinalysis. Protein, urine casts (especially red blood cell casts), red blood cells, or white blood cells in the urine may indicate kidney problems or bladder infection – collect the urine sample 1-2 hours prior to your appointment.Questions:-Time with your Consultant, Doctor or Health Care Professional is often limited to 10 to 20 minutes. Ensure that you have a list of important questions you want to know the answer to.Blood Tests:-Ensure that any blood tests are taken 5-7 days before your clinic appointment. If you live out of the area ask your GP Practice for a copy of the blood tests results and bring them with you to the appointment.Other tests and Investigations - ensure that all tests and investigations requested from previous appointments are completed. Let the Rheumatology department know in advance if these have not been undertaken

New health problemsPrepare a list of any new health problems that have occurred since your last appointment remember your clinical notes may not have all your up to date medical records, clinical letters etc.



Please complete prior to consultation:

Date: / /

Visual Analogue Scales (VAS): Are a good way of monitoring your pain and fatigue levels. Please rate your pain and fatigue in the last week.

Patient comments, goals, questions and report impact on life:

8 9 1076543210

No fatigue Severe fatigue

Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:

Please complete after consultation:

Date: / /

Seen by: (circle) GP/ Consultant/ SpR/ Specialist Nurse/ Physio/ OT/ Podiatrist

Treatment:

Referral:

Outcomes and Advice:

Investigations:

Follow up:




Date: / /



8 9 1076543210


Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:



Date: / /


Treatment:

Referral:


Investigations:

Follow up:



Date: / /



8 9 1076543210


Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:



Date: / /


Treatment:

Referral:


Investigations:

Follow up:



Date: / /



8 9 1076543210


Fatigue VAS:

8 9 1076543210

No pain Severe pain

Pain VAS:


Med

icat

ion

Rec

ord

Rh

eum

ato

log

y O

utp

atie

nts

Dep

artm

ent

Dru

gD

ate

Do

se

Freq

uen

cy R

easo

nPr

escr

ibed

by

Imp

ort

ant

No

tice

C

om

men

t

Pred

nis

olo

ne

(Ste

roid

s)D

aily

Do

no

t m

iss

a d

ose

-

any

pro

ble

ms

ta

lk t

o y

ou

r R

heu

mat

olo

gy

Team

Sl

ow

Red

uct

ion

as

pre

scri

bed

b

y yo

ur

Rh

eum

ato

log

ist

Dis

ease

M

od

ifyi

ng

A

nti

R

heu

mat

oid

D

rug

----

----

----

----

--

Do

No

t M

iss

a D

ose

–

any

pro

ble

ms

talk

to

yo

ur

Rh

eum

ato

log

y te

am -

Yea

rly

flu

V

acci

nat

ion

Req

uir

ed

Dis

ease

M

od

ifyi

ng

A

nti

R

heu

mat

oid

D

rug

----

----

----

----

----

Do

No

t M

iss

a D

ose

–

any

pro

ble

ms

talk

to

yo

ur

Rh

eum

ato

log

y te

am -

Yea

rly

flu

V

acci

nat

ion

Req

uir

ed

Plea

se d

iscu

ss w

ith

Rh

eum

ato

log

y Te

am a

nn

ual

flu

vac

cin

atio

nIf

tak

ing

an

tib

ioti

c's

ple

ase

seek

ad

vice

reg

ard

ing

DM

AR

D m

edic

atio

n


Med

icat

ion

Rec

ord

Plea

se e

nsu

re t

hat

yo

u h

ave

you

r b

loo

ds

mo

nit

ore

d e

very

____

____

____

as

dir

ecte

d b

y th

e R

heu

mat

olo

gy

Team

Dru

gD

ate

star

ted

Do

seFr

equ

ency

Rea

son

Pres

crib

ed

by

Imp

ort

ant

No

tice

Co

mm

ents


Blo

od

Tes

t R

esu

lts

(B

loo

d r

esu

lts

can

be

acce

ssed

fro

m y

ou

r G

P).

Dat

eH

BW

BC

Plat

elet

sN

eutr

op

hils

ESR

CR

PA

LTC

reat

inin

eU

rea

Blo

od

Pr

essu

reW

eig

ht

Dat

eIn

vest

igat

ion

sR

esu

ltO

utc

om

e


Serious complications of Behçet’s are rare. Awareness of potential problems is helpful so that they are recognised and identified at an early stage. Serious complications may include:-

Eye Symptoms/Problems Comments

Inflammation of the eye can occur at the back or front of the eye, around the iris or next to the retina. Symptoms may include floaters, haziness or loss of vision, pain and redness in the eye. It must be treated as soon as possible to avoid possible loss of vision.

If eye symptoms develop seek urgent medical advice.

Bowel Problems: Comments

Behçet’s disease can affect any part of the intestines (gut), from the mouth to the anus causing ulcerations.Symptoms may include bloating, excessive wind, abdominal pain, diahorrea and nausea.

Discuss any abdominal/bowel symptoms with your healthcare professional.

Black tarry stools or fresh blood in stools in large amounts is a medical emergency.


Serious complications of Behçet’s are rare. Awareness of potential problems is helpful so that they are recognised and identified at an early stage. Serious complications may include:-

Problems with Thrombosis (Blood Clots): Comments

Inflamed blood vessels can increase the risk of thrombosis. The legs are affected more often than the arms. Thrombosis can also occur in the blood vessels of the head, lungs or other internal organs but this is rare.

Discuss any new symptoms with a healthcare professional.

Other complications of Behçet’s Comments

Some people with Behçet’s Syndrome may develop complications that can affect the Heart, kidneys, Nervous System, Blood Vessels and Abdomen.

Any unusual symptoms should be discussed with a healthcare professional.

Pregnancy Comments

Patients with Behçet’s during pregnancy may require close monitoring throughout pregnancy. Some drugs are not recommended whilst trying to conceive a child, during pregnancy or breastfeeding.

Please discuss with your healthcare professional if you are pregnant or planning pregnancy.


Other Problems associated with Behçet’s Syndrome:Mouth Ulcers CommentsMouth ulcers are a common symptom.

The ulcers occur on the soft mucous membrane in the mouth. They can occur anywhere in the mouth but most commonly on the tongue, lips, gums and the inside of the cheek.

They are painful, clearly defined round or oval sores, usually with a surrounding red ring of inflammation.

They can have the same appearance as mouth ulcers seen in people without Behçet’s Syndrome, tending to arrive as a crop of several ulcers at the same time and last for to 2 or 3 weeks.

Mouth ulcers can be extremely painful and make eating, talking and oral hygiene difficult.

It is essential to maintain good dental hygiene despite the pain from the Mouth ulcers. Regular brushing and flossing after eating meals and snacks is recommended. It is recommended that you visit the Dentist/ Hygienist regularly at least once every six months.

See fact sheet regarding Mouth Ulcers from Behçet’s Syndrome Society for more information and discuss symptoms with your healthcare professional.


Genital Ulcers CommentsGenital Ulcers can affect both men and women and are common.

Females may get ulcers on the vulva, in the vagina or on the cervix.

Males may get ulcers on the scrotum and the penis. Some males may have pain and swelling in the testicles.

Ulcers and boils may also appear around the anus and in the groin.

Genital ulcers can make sexual intercourse uncomfortable or painful.

Although good personal hygiene will not stop genital ulceration from occurring it is essential in preventing ulcers becoming infected. Also consider the type of toiletries you use, as perfumed and scented products may irritate the area.

Discuss symptoms with your healthcare professional.

Skin Problems:

Skin problems can include acne-like spots, boils, red patches, ulcers, spots that look like insect-bites and lumps under the skin. The skin may become inflamed, ulcerated or appear to be infected.

Skin involvement can be a major part of Behcet’s Syndrome and can affect your quality of life.

Discuss skin symptoms with your healthcare professional and see fact sheet regarding Skin from Behcet’s Syndrome Society for more information


Problems with the Nervous System CommentsInflammation can cause problems within the nervous system. Headaches, double vision, difficulty hearing, dizziness and loss of balance, fainting and weakness or numbness in the arms or legs.

Discuss any new neurological symptoms with your healthcare professional.

Headaches

Primary headaches are the most common form of headache in Behçet’s disease and often is severe. These headaches can be frequent and symptoms may be troublesome but there is no neurological involvement.

Primary headaches are treated in the same way as Migraine headache are treated with anti-inflammatories or other preventive medications. Discuss symptoms with your healthcare professional.

Secondary headaches are related to a process of disease within the brain. These headaches are often associated with neurological complications of Behçet’s. This type of headache may require specialist management.

Discuss symptoms with your healthcare professional

See fact sheet regarding Headaches from Behçet’s Syndrome Society for more information.


Living Well with Behçet’s

Heart disease: Cardiovascular risk Comments

Research has determined that inflammation associated with Behçet’s increases the risk of Cardiovascular Disease and other cardiovascular events. It is therefore recommended that all patients look to lower Cardiovascular risk by treating inflammation and by paying attention to risk factors linked to heart disease:- Smoking Healthy Eating (Cholesterol) Blood Pressure Exercise Alcohol Intake Weight

Further advice available from GP practices

Smoking Comments

Cigarette smoking may flare your Behçet’s symptoms and any Raynaud’s symptoms you may have. There is also some evidence that cigarette smoking increases the likelihood of complications.

Further advice available from GP practices regarding stopping smoking

Healthy Eating

It is well-recognised that a healthy diet is important for everyone.


Bone Health: Osteoporosis risk Comments

Some treatments such as steroid’s which can be used to help treat Behcet’s can lower bone mineral density leading to fragile bones. This lower bone mineral density can develop into Osteoporosis meaning you are more susceptible to breaking a bone particularly of the spine, wrist and hip.

Eat a healthy diet including foods high in calciumReduce your alcohol intakeStop SmokingEnsure you remain active and include weight bearing exercises in your weekly regime.


Pers

on

alis

ed C

are

Plan

D

epar

tmen

t o

f R

heu

mat

olo

gy

Pro

ble

mSy

mp

tom

Act

ion

Co

mm

ent/

revi

ew

Join

t an

d

mu

scle

p

ain

Pain

an

d t

end

ern

ess

in m

ult

iple

join

ts a

nd

m

usc

les.

Join

t p

ain

s ca

n m

ove

fr

om

on

e jo

int

to

ano

ther

.

Inab

ility

to

co

mp

lete

ac

tivi

ties

of

dai

ly

livin

g d

ue

to p

ain

an

d

wea

knes

s.

Dat

eSi

gn

atu

re


Exercise is beneficial for people with Behçet’sJust about everyone realises exercise is beneficial even if they don’t participate in regular exercise. Some people fear that exercise will cause Behçet’s flares, as well as increasing joint pain and joint stiffness. The opposite is true. Properexercise helps decrease joint pain and stiffness.

Reasons why Exercise is important

1) strengthen the muscles that surround your joints 2) maintain and improve bone strength3) improve overall strength and energy 4) help you achieve good sleep5) help with weight management 6) improve your mood, confidence, and overall well-being7) Improve exercise tolerance 8) Reduce the cardiovascular risk

Get Advice

• You should consult your Physiotherapist to decide what type of exercise would be most beneficial for you. You can access physiotherapy through your Rheumatology Department or Health care provider.

• For example, range-of-motion exercises help you move your joints through their full range of motion. Strengthening exercises build muscles and Aerobic exercises build endurance.

• If regular exercise is just not your thing, become interested in a physical activity that you will do. Consider activities like walking, bicycling, swimming, tai chi, and yoga, to name a few. Move beyond any fear you may have that exercise or regular physical activity will make your disease worse. What you really should fear is – INACTIVITY


How Often Should People With Behçet’s Exercise?• Range-of-motion exercises can be done daily and should be done at least every other day.• Strengthening exercises should be done every other day unless you have severe pain or swelling in your joints.• Endurance exercises should be done for 20 to 30 minutes three times a week unless you have severe pain or swelling in your joints. According to the American College of Rheumatology, 20 to 30 minute exercise routines can be performed in increments of 10 minutes over the course of a day.

Behçet’s & Exercise: How To Get Started

• Discuss exercise plans with your Physiotherapist.Start with supervision from a Physiotherapist and follow the exercise plan 7 days a weeks for 20 to 30 minutes• Always stretch and warm up with range-of-motion exercises.• Progress slowly.• Start strengthening exercises slowly with small weights (a 1- or 2-pounds weight can make a big difference).• Apply heat to sore joints (optional; many people with this disease start their exercise program this way).• Use cold packs after exercising (optional; many people with this disease complete their exercise routine this way).Add aerobic exercise.• Ease off if joints become painful, inflamed, or red, and work with your Physiotherapists to find the cause and eliminate it.• Choose the exercise program you enjoy most and make it a habit.Consider appropriate recreational exercise (after doing range-of-motion, strengthening, and aerobic exercise). Fewer injuries to joints affected by disease occur during recreational exercise if it is preceded by range-of-motion, strengthening, and aerobic exercise that gets your body in the best condition possible.


How Much Exercise Is Too Much?

• Most experts agree that if exercise causes pain that lasts for more than 1 hour, it is too strenuous.• People with Behçet’s should work with their physical therapist or doctor to adjust their exercise program when they notice any of the following signs of strenuous exercise: unusual or persistent fatigue, increased weakness, decreased range of motion increased joint swelling, continuing pain (pain lasting more than 1 hour after exercising)• It is appropriate to put joints gently through their full range of motion once a day, with periods of rest, during acute systemic flares or local joint flares.• Patient can talk to their Physiotherapists about how much rest is best during general or joint flares.

Footwear and Exercise

• Ensure that you have the right footwear for the exercise activity. • Supportive trainers are typically best.• Make sure that footwear is not too tight.


Managing PainNot all people present with the same location, frequency, intensity or duration of pain. Some have mild on going pain, some have gradually increasing pain, others will have episodes of intense pain and then be relatively pain free for a period of time – everybody is different. It is not possible to predict who will experience what pain levels.

Self management actions to reduce or control your pain levels include:• Taking your medication as prescribed (if applicable)• Keeping a good posture• Exercising regularly• Pacing your activities • Minimising stress levels

Have a dedicated time to practice relaxation techniques each day.

Cool and Heat packs can prove effective. Caution when using cool and heat packs if experiencing Raynaud’ssymptoms avoiding rapid temperature changes.

It is essential to remember that not all pain is “harmful.”A level of discomfort as you exercise is expected butthis will not be causing any physical harm if you are performing the right exercise in the right way and at thecorrect level.


Pers

on

alis

ed C

are

Plan

D

epar

tmen

t o

f R

heu

mat

olo

gy

Pro

ble

mSe

lf m

anag

emen

t a

dvi

ceA

ctio

nC

om

men

ts/R

evie

w

Fati

gu

eTi

red

nes

s u

nre

lieve

d b

y re

st

Lack

of

ener

gy

or

mo

tiva

tio

n

Poo

r co

nce

ntr

atio

n o

r m

emo

ry

Ap

ath

y o

r ‘n

ot

cari

ng

wh

at

hap

pen

s’

All

oth

er c

ause

s o

f fa

tig

ue

excl

ud

ed

Dat

e


Pers

on

alis

ed C

are

Plan

D

epar

tmen

t o

f R

heu

mat

olo

gy

Pro

ble

mSe

lf m

anag

emen

t a

dvi

ceA

ctio

nC

om

men

ts/R

evie

w

An

xiet

y, lo

w m

oo

d

or

dep

ress

ion

Man

y fa

cto

rs

can

co

ntr

ibu

te

to t

he

sym

pto

ms

of

anxi

ety

and

d

epre

ssio

n

incl

ud

ing

:H

avin

g a

dia

gn

osi

s o

f a

lon

g t

erm

co

nd

itio

nPa

in le

vels

Fati

gu

e le

vels

/ re

du

ced

sle

epLo

ss o

f fu

nct

ion

al

ind

epen

den

ceR

edu

ced

ab

ility

to

wo

rk /r

emai

n

pro

du

ctiv

e at

wo

rk

Co

nta

ct y

ou

r G

P fo

r ad

vice

on

ef

fect

ive

med

icat

ion

sEx

erci

se r

egu

larl

y –

this

can

hel

p t

he

bo

dy

pro

du

ce it

s o

wn

pai

nki

llin

g

chem

ical

s an

d g

ive

you

a s

ense

of

wel

l bei

ng

Talk

to

fam

ily a

nd

fri

end

s –

let

them

kn

ow

ho

w y

ou

are

fee

ling

an

d t

hat

it

can

be

par

t o

f yo

ur

con

dit

ion

Use

su

pp

ort

gro

up

s

Co

nsi

der

co

un

selli

ng

to

hel

p y

ou

to

co

me

to t

erm

s w

ith

yo

ur

dia

gn

osi

s /

curr

ent

stat

e.

Dat

e


Pers

on

alis

ed C

are

Plan

D

epar

tmen

t o

f R

heu

mat

olo

gy

Pro

ble

mSe

lf m

anag

emen

t a

dvi

ceA

ctio

nC

om

men

ts

Man

agin

gM

edic

atio

ns:

Ster

oid

’s

DM

AR

D’s

Take

med

icat

ion

s as

pre

scri

bed

.So

me

med

icat

ion

s re

qu

ire

reg

ula

r b

loo

d t

ests

fo

r p

atie

nt

safe

ty.

If e

xper

ien

cin

g p

rob

lem

s w

ith

m

edic

atio

n c

on

tact

th

e Pa

tien

t A

dvi

ce a

nd

Info

rmat

ion

Lin

e (P

AIL

) 02

3 92

2869

35 t

o d

iscu

ss w

ith

th

e R

heu

mat

olo

gy

Team

.R

eco

rd e

ffec

t o

f st

ero

id t

her

apy

– sh

ort

co

urs

e st

ero

id/ i

nje

ctio

n o

r in

trav

eno

us

Rec

ord

an

y m

edic

atio

ns

pre

scri

bed

an

d e

ffec

ts.

The

Dep

artm

ent

of

Rh

eum

ato

log

y h

old

s al

l of

the

AR

UK

Lea

flet

s o

r vi

sit

ww

w.a

rth

riti

sres

earc

h.u

k.o

rg


MedicationPeople with Behçet’s are likely to take several prescriptions and over the counter medications, and the more drugs you take for the conditions you develop, the greater the chance that you’ll experience side effects, medications interacting or the potential you mistakenly take the wrong drug or dose. You can help avoid these problems by getting organised and making sure your medical team and pharmacist know about all of the prescription drugs you’re taking.

Top Tips• Make a list. Keep an updated list of all your over-the-counter and prescription medications with you at all times so you can share it with each member of your health care team when you go to doctor visits and get prescriptions filled. Include the name of each medication you are taking, along with the dosage information and the reason you are taking it.Give a copy of your medication to your next of kinLook to see if the “Message in a bottle” scheme can help you.

• Maintain a prescription medication file. After you read the written material that accompanies your prescription medication, file it in a place where you can find it easily should you ever have questions about dosage or side effects.• Use one pharmacy. If possible, have all of your medications filled at the same pharmacy, so that your pharmacist can track them all and alert you to possible drug interactions.• Medication Review. Ask your Pharmacy for a yearly medication review.Do not over stock- only order repeat prescription. Message in a bottle: Available from Lions Clubs Headquarters on 0845 833 9502 or by e-mail [email protected]


Man

agin

g m

y B

ehçe

t’s

sym

pto

ms

Sym

pto

ms

Self

-man

agem

ent

Plan

Co

mm

ent/

revi

ew


My

Pers

on

al G

oal

s

Dat

eG

oal

I w

ou

ld li

ke t

o a

chie

veW

hat

act

ion

s am

I g

oin

g

to t

ake

to a

chie

ve it

By

wh

enD

ate

ach

ieve

d


Notes:


Patient Support Groups:When beginning to live with a disease such as Behçet’s you and your family will have many questions. Some of which will be very specific to the disease itself whilst others will be related to just getting on with living with Behçet’s.You will find a wealth of information from Behçet’s Syndrome Society, who also can direct you to the best possible answers to your questions.Local support groups, and online chat forums, offer the opportunity to interact with a larger group and offers you a broader scope of understanding, especially since not all people with Behçet’s have identical symptoms, undergo the same treatments, or cope the same way. We can learn from each other and from shared experiences.The Behçet’s Syndrome Society also produces a wealth of information booklets, information sheets and resources.

Contact Details for Behçets Syndrome Society:Behçet’s Syndrome Society8 Abbey GardensEveshamWorcester WR11 4SPOffice Telephone: 0845 130 7328Helpline: 0845 130 7329Email: infobehçetsdisease.org.uk

Produced by: Rheumatology DepartmentDate: November 2015 Review: November 2017Ref: P WMedical Illustration ref: 15/5214© Portsmouth Hospitals NHS Trust 2015


behçet’s · pregnancy comments patients with behçet’s during pregnancy may require close...

Documents