systemic lupus erythematosus (sle or lupus) care plan 15 2467.pdf9 systemic lupus erythematosus...
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My Individual Personal Care PlanSystemic Lupus Erythematosus (SLE or Lupus)
RheumatologyDepartment
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
Name:
Date of Birth:
Hospital No.:
NHS No.:
Proud to make a differenceThe Lupus care plan will usually start whilst you are either attending an outpatient appointment or during your hospital admission. When you have had a diagnosis of Lupus you should have a personalised care plan which takes into account your health and care needs.
Your plan should be discussed and agreed with you by health and social care services. Your personal care plan should address your strengths, needs and preferences as an individual, and take into account the needs of people supporting you.
You should know the Health Care Professionals involved in supporting you and who is coordinating your care, at the early stages it is likely to be your Rheumatology Consultant and Team, but this will move to be your GP; for others it may be a Community Nurse or other worker from primary and community health and care services.
You may need to add/remove sections within the plan, depending on your symptoms and as everyone experiences Lupus differently, so your plan will be tailored to suit you.
It is important that you keep the Individual Personal Care plan up to date and to share this with all health care professionals involved in all stages of your care.
RememberCare 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.
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 2
Health Care Team: Contact No.:
GP
Consultant Rheumatologist
Rheumatology Clinical Nurse Specialist
Physiotherapist
Occupational Therapist
Community Nurse
Rheumatology Appointments
Dentist
Other:
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 3
Pers
on
alis
ed C
are
Plan
Ap
po
intm
ents
Dat
eTi
me
Pers
on
I am
see
ing
Pl
ace
Blo
od
Tes
t ap
po
intm
ents
– p
leas
e n
ote
yo
ur
blo
od
tes
t ap
po
intm
ents
are
imp
ort
ant
Dat
eTi
me
Plac
e
4Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
Preparing for your outpatient appointmentsList 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 samplea 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.QuestionsTime 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 TestsEnsure 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 investigation requested from previous appointment are completed, your Rheumatology department know well 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.
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 5
Date: / /
Seen by: (circle) GP/ Consultant/ SpR/ Specialist Nurse/ Physio/ OT/ Podiatrist
Treatment:
Referral:
Outcomes and Advice:
Investigations:
Follow up:
6Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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
b
yIm
po
rtan
t N
oti
ce
Co
mm
ent
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
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 7
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 yo
ur
con
sult
ant
Dru
gD
ate
star
ted
Do
seFr
equ
ency
Rea
son
Pres
crib
ed b
yIm
po
rtan
t N
oti
ceC
om
men
ts
8Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 9
MedicationsPeople with Lupus are likely to take several prescription and over the counter medications, and the more drugs you take for the more 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 healthcare team when you go to doctor visits and getprescriptions filled. Include the name of each medicationyou are taking, along with the dosage information and the reason you are taking it.Give a copy of your medication to your next of kin. Lookto see if the “Message in a bottle” scheme can help you.
• Maintain a prescription medication file. After you readthe written material that accompanies your prescriptionmedication, file it in a place where you can find it easilyshould you ever have questions about dosage or sideeffects.
• Use one pharmacy. If possible, have all of your medicationsfilled at the same pharmacy, so that your pharmacist can track them all and alert you to possible druginteractions.
• 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]
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
10Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 11
Rec
ord
of
Ad
dit
ion
al T
ests
an
d In
vest
igat
ion
s
Dat
eIn
vest
igat
ion
sR
esu
lts
Ou
tco
me
12Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
Rec
ord
of
Ad
dit
ion
al T
ests
an
d In
vest
igat
ion
s
Dat
eIn
vest
igat
ion
sR
esu
lts
Ou
tco
me
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 13
Living Well day to day with Lupus
Living well day to day with Lupus can be achieved by
• Learning about your body and what is happening to it with Lupus.
• Learning about your health professionals, therecommended medications, and what they can do for you.
• Find out what can improve your health, such as loosing 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 thinks worse. Some people can writewithout pain while others can’t 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 Lupus
• Gather information about Lupus 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 practice your coping and strengthening skillsand incorporate these goals into your life.
• Follow through with your self management plan on a day to day basis.
14Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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
han
ds
and
fee
t b
ut
can
af
fect
mu
ltip
le jo
ints
an
d m
usc
les.
Join
t p
ain
s ca
n q
uic
kly
mo
ve f
rom
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
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 15
Exercise is beneficial for people with LupusJust about everyone realises exercise is beneficial even if they don’t participate in regular exercise. Some people fear that exercise will cause Lupus 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 tolerance8) 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 RheumatologyDepartment or Health care provider.
• For example, range-of-motion exercises help you moveyour joints through their full range of motion. Strengthening exercises build muscles and Aerobic exercises build endurance.
• If regular exercise just isn’t your thing, become interestedin 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.
16Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
How Often Should People With Lupus 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.
Lupus & 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-pound weight can make a big difference).• Apply heat to sore joints (optional; many people
with disease start their exercise program this way).• Use cold packs after exercising (optional; many people
with 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 andeliminate it.
• Choose the exercise program you enjoy most and makeit a habit. Consider appropriate recreational exercise
(after doing range-of-motion, strengthening, and aerobic exercise). Fewer injuries to joints affected by disease occurduring recreational exercise if it is preceded by range-of-motion, strengthening, and aerobic exercise that gets your body in the best condition possible.
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 17
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 Lupus 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.
18Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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’s symptoms avoiding rapid temperature changes.It is essential to remember that not all pain is “harmful”. A level of discomfort as you exercise is expected but this will not be causing any physical harm if you are performing the right exercise in the right way and at the correct level.
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 19
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
Fati
gu
eTi
red
nes
s u
nre
lieve
d
by
rest
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
w
hat
hap
pen
s’
All
oth
er c
ause
s o
f fa
tig
ue
excl
ud
ed
Dat
e
20Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
Pers
on
alis
ed C
are
Plan
D
epar
tmen
t o
f R
heu
mat
olo
gy
Pro
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mSy
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tom
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mm
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revi
ew
Ray
nau
dA
ffec
ts b
loo
d v
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ls
in t
he
fin
ger
s, t
oes
, n
ose
or
ears
A c
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in
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re c
ause
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o g
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ite
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apid
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ses
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ing
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um
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cted
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as
Can
red
uce
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d
fun
ctio
n a
nd
can
cau
se
fin
ger
ulc
ers
Dat
e
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 21
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
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nC
om
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view
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tter
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, usu
ally
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rid
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e sp
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ich
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ade
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sun
ligh
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V li
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ly r
ash
on
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n
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ose
d a
reas
Hai
r th
inn
ing
/loss
Dat
eSi
gn
atu
re
22Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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
Dat
eSi
gn
atu
re
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 23
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
nEv
alu
atio
n
Med
icat
ion
Ster
oid
s –
for
som
e p
atie
nts
St
ero
ids
are
the
firs
t lin
e o
f m
edic
atio
n.
Ster
oid
s sh
ou
ld
be
take
n o
n a
reg
ula
r b
asis
–
at n
o p
oin
t m
ust
ste
roid
s b
e st
op
ped
wit
ho
ut
pri
or
dis
cuss
ion
wit
h t
he
Co
nsu
ltan
t R
heu
mat
olo
gis
t. I
VI o
r IM
st
ero
ids
may
be
nee
ded
.
Dis
ease
Mo
dif
yin
g A
nti
R
heu
mat
oid
Dru
gs
(D
MA
RD
S)
are
the
oth
er m
edic
atio
ns
imp
ort
ant
in m
anag
ing
Lu
pu
s
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.
arth
riti
sres
earc
h.u
k.o
rg
AR
UK
leafl
ets-
Ster
oid
s M
eth
otr
exat
eM
yco
ph
eno
late
C
yclo
ph
osp
ham
ide
Aza
thio
pri
ne
Hyd
roxy
chlo
roq
uin
e
Mo
nit
ori
ng
.
Dat
eSi
gn
atu
re
24Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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
nEv
alu
atio
n
Bo
ne
Hea
lth
: O
steo
po
rosi
s ri
sk
The
trea
tmen
ts f
or
Lup
us
can
lo
wer
bo
ne
min
eral
den
sity
le
adin
g t
o f
rag
ile b
on
es. T
his
lo
wer
bo
ne
min
eral
den
sity
ca
n d
evel
op
into
Ost
eop
oro
sis
mea
nin
g y
ou
are
mo
re
susc
epti
ble
to
bre
akin
g a
b
on
e, p
arti
cula
rly
of
the
spin
e, w
rist
an
d h
ip.
Eat
a h
ealt
hy
die
t in
clu
din
g f
oo
ds
hig
h in
cal
ciu
m
Red
uce
yo
ur
alco
ho
l in
take
Sto
p s
mo
kin
g
Ensu
re y
ou
rem
ain
ac
tive
an
d in
clu
de
low
imp
act
wei
gh
t b
eari
ng
or
spec
ific
stre
ng
then
ing
ex
erci
ses
in y
ou
r w
eekl
y re
gim
e
Dat
eSi
gn
atu
re
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 25
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
nEv
alu
atio
n
Car
dio
vasc
ula
r ri
sk
Infl
amm
atio
n li
nke
d w
ith
Lu
pu
s in
crea
ses
the
risk
of
Car
dio
vasc
ula
r D
isea
se a
nd
o
ther
car
dio
vasc
ula
r ev
ents
. It
is r
eco
mm
end
ed t
hat
al
l pat
ien
ts lo
ok
to lo
wer
ca
rdio
vasc
ula
r ri
sk b
y tr
eati
ng
in
flam
mat
ion
an
d b
y p
ayin
g
atte
nti
on
to
ris
k fa
cto
rs li
nke
d
to h
eart
dis
ease
:- S
mo
kin
g W
eig
ht
Hea
lth
y Ea
tin
g
(C
ho
lest
ero
l) B
loo
d p
ress
ure
Exe
rcis
e
Furt
her
ad
vice
av
aila
ble
fro
m G
P p
ract
ices
Dat
eSi
gn
atu
re
26Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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,
low
m
oo
d o
r d
epre
ssio
n
Man
y fa
cto
rs c
an c
on
trib
ute
to
th
e sy
mp
tom
s o
f an
xiet
y an
d d
epre
ssio
n in
clu
din
g:
Hav
ing
a d
iag
no
sis
of
a lo
ng
te
rm c
on
dit
ion
Pain
leve
lsFa
tig
ue
leve
ls /
red
uce
d s
leep
Loss
of
fun
ctio
nal
in
dep
end
ence
Red
uce
d a
bili
ty t
o w
ork
/re
mai
n p
rod
uct
ive
at w
ork
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 / c
urr
ent
stat
e.C
on
tact
yo
ur
GP
for
advi
se o
n e
ffec
tive
m
edic
atio
ns
Exer
cise
reg
ula
rly
– th
is c
an h
ep 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 b
ein
g. T
alk
to f
amily
an
d f
rien
ds
– le
t th
em k
no
w h
ow
yo
u
are
feel
ing
an
d t
hat
it
can
be
par
t o
f yo
ur
con
dit
ion
Use
su
pp
ort
gro
up
s.
Dat
eSi
gn
atu
re
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 27
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,
low
m
oo
d o
r d
epre
ssio
n
Wh
en b
egin
nin
g t
o li
ve w
ith
a
dis
ease
th
at is
bo
th in
th
e ac
ute
an
d c
hro
nic
ph
ases
su
ch a
s Lu
pu
s yo
u a
nd
yo
ur
fam
ily w
ill
hav
e m
any
qu
esti
on
s. S
om
e o
f w
hic
h w
ill b
e ve
ry s
pec
ific
to t
he
dis
ease
itse
lf w
hils
t o
ther
s w
ill
be
rela
ted
to
just
get
tin
g o
n
wit
h li
vin
g w
ith
Lu
pu
s. Y
ou
will
fi
nd
a w
ealt
h o
f in
form
atio
n
fro
m L
up
us
char
itie
s, w
ho
al
so c
an d
irec
t yo
u t
o t
he
bes
t p
oss
ible
an
swer
s to
yo
ur
qu
esti
on
s ab
ou
t yo
ur
hea
lth
, fu
ture
, hap
pin
ess,
ind
epen
den
t an
d r
elat
ion
ship
s. A
lso
, be
sure
to
ask
oth
er L
up
us
pat
ien
ts f
or
thei
r so
luti
on
s to
so
me
of
the
pro
ble
ms
you
are
beg
inn
ing
to
fac
e, b
oth
pra
ctic
al a
nd
em
oti
on
al.
Lup
us
UK
St J
ames
Ho
use
Ea
ster
n R
oad
Ro
mfo
rd
Esse
x R
M13
3N
H01
708
7312
51
(Mo
n-F
ri 9
-5)
hea
do
ffice
@lu
pu
suk.
org
.uk
ww
w.lu
pu
suk.
org
.uk
St T
ho
mas
Lu
pu
s Tr
ust
Gro
un
d F
loo
r, C
on
ybea
re H
ou
se,
Gre
at M
aze
Pon
d,
Gu
ys H
osp
ital
, Lo
nd
on
SE
1 9R
TTe
l: 02
0 71
88 3
562
fun
dra
isin
g@
lup
us.
org
.uk
ww
w.lu
pu
s.o
rg.u
k
Dat
eSi
gn
atu
re
28Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
Serious complications of Lupus are relatively rare, but regular check ups are recommended, so any problems can be identified and treated at an early stage. Serious complications may include:-
Internal Organ involvement Comments
Report any signs of shortness of breath, chest or abdominal pain, weight loss, sudden weakness, blood in the urine, unexplained fevers and change in mental function.
Any unusual symptoms should be reported to a healthcare professional.
Overlap Syndromes Comments
Some patients have symptoms of other auto-immune diseases, such as Myositis, Rheumatoid Arthritis, Sjogrens, Scleroderma, etc.
Any unusual symptoms should be reported to a healthcare professional.
Please discuss with your healthcare professional if you are pregnant or planning pregnancy.
Anti-Phospholipid Syndrome Comments
‘Sticky blood syndrome’ can be present alongside Lupus and can cause an increased risk of blood clots, difficulties with pregnancy and miscarriage.
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 29
Man
agin
g m
y Lu
pu
s sy
mp
tom
s
Sym
pto
ms
Self
-Man
ager
ing
Pla
nC
om
men
t/re
view
30Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan
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
eive
d
Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan 31
Support Groups:
Lupus UKLUPUS UKSt James HouseEastern RoadRomfordEssex RM1 3NHEngland
Phone: (00 44) (0)1708 731251 (Monday – Friday09.00- 17.00)
Email:[email protected]
St Thomas Lupus TrustGround Floor, Conybeare House, Great Maze Pond, Guys Hospital, London SE1 9RTTel: 020 7188 3562 [email protected]
Produced by: Rheumatology DepartmentDate: June 2015 Review: June 2017Ref: J IMedical Illustration ref: 15/2467© Portsmouth Hospitals NHS Trust 2015
32Systemic Lupus Erythematosus (SLE) Individual Personalised Care Plan