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Yourhealth,yourchoices

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Datecreated:25/09/2016

Lupus
Treatinglupus
Thereiscurrentlynocureforsystemiclupuserythematosus(SLE),buttreatmentsthatcaneasethesymptomsandmakeiteasiertolivewithare
available.
Inmostcases,treatmentwillinvolveacombinationofselfcaremeasuresandmedication.

Protectingyourselffromthesun
Exposuretosunlightcansometimesmakesymptomssuchasrashesworse,andit'simportanttoprotectyourskinwheninthesun.
Thismeanswearingclothingthatcoversyourskin,awidebrimmedhatandsunglasses.YouwillalsoneedtoapplysunscreenwithahighSPFtoprevent
sunburn.However,somepeoplewithlupusarenotsunsensitiveanddonotneedtotakeextraprecautions.
AspeoplegetmostoftheirvitaminDasaresultofdirectsunlightontheskin,thereisariskyoumaynotgetenoughofthisvitaminifyouneedtoavoidsun
exposure.ThismeansyoumayneedtomakeanextraefforttoincludegoodsourcesofvitaminDinyourdiettoavoidproblemssuchasosteoporosis
(weakenedbones),andyoumaybeadvisedtotakevitaminDsupplements.

Nonsteroidalantiinflammatorydrugs(NSAIDs)
Nonsteroidalantiinflammatorydrugs(NSAIDs)areacommonpainkillingmedicationthatreducesinflammationinthebody.Ifyouexperiencejointor
musclepainasaresultofSLE,youmaybeprescribedaNSAIDtohelpeaseyoursymptoms.
CommonlyprescribedNSAIDsforSLEincludeibuprofen,naproxenanddiclofenac.
YoucanbuysomeNSAIDs,suchasibuprofen,overthecounter.TheseNSAIDsmaybesuitableifyourjointormusclepainismild.Formoreseverepain,
youwillneedstrongermedicationprescribedbyyourGP.
NSAIDsmaynotbesuitableforpeoplewhohavestomach,kidneyorliverproblems,orhavehadtheseproblemsinthepast.Theymayalsobeunsuitable
forpeoplewithasthma.YourGPwilladviseaboutwhichNSAIDisrightforyou.

Sideeffects
Iftakeninhighdosesoroverlongperiodsoftime,NSAIDscandamageyourstomachlining,whichmaycauseinternalbleeding.
IfyouneedtotakeNSAIDsonalongtermbasis,yourGPwillcarefullymonitoryoutocheckforanyproblems,andyoumaybeprescribedanadditional
medicationcalledaprotonpumpinhibitor(PPI)toprotectyourstomach.

Hydroxychloroquine
Hydroxychloroquineisamedicinethathasbeenusedtotreatmalaria,butisalsoeffectiveintreatingsomeofthesymptomsofSLE,suchasrashes,joint
andmusclepain,andfatigue.
Youwillusuallyhavetotakehydroxychloroquinefor6to12weeksbeforeyounoticeanybenefit.
MostexpertdoctorsrecommendpeoplewithSLEtakehydroxychloroquineonalongtermbasisasawayofcontrollingtheirsymptoms,helpingtoprevent
flareupsandtopreventdevelopmentofmoreseriousproblemsfromlupus.

Sideeffects
Sideeffectsofhydroxychloroquineareuncommon,butmayincludeindigestion,diarrhoea,headachesandrashes.
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Hydroxychloroquinemayalsocausemoreserioussideeffectsinasmallnumberofpeople.Forexample,inrarecases,thismedicinecancauseeye
damage.ContactyourGPorspecialistimmediatelyifyouexperiencevisionproblemswhiletakinghydroxychloroquine.
IfyourGPorspecialistfeelsitisnecessary,youmayneedregulareyeexaminations.

Corticosteroids
Corticosteroidsareatypeofmedicinethathelpreduceinflammationquickly.TheycanbeveryeffectiveintreatingsymptomsofSLE,butareusuallyonly
prescribediftheconditionissevere.
IfyouhaveseveresymptomsofSLE,orifyouareexperiencingaflareup,youmaybegivenalargedoseofcorticosteroidstohelpbringyoursymptoms
undercontrol.Asyoursymptomsease,yourdosagecangraduallybereduced.

Sideeffects
Whenprescribingcorticosteroids,thelowesteffectivedosageisalwaysgiven.Thisisbecausehighdosesorlongtermuseofcorticosteroidscancauseside
effects.Thesemayinclude:
thinningofyourbones
thinningofyourskin
weightgain
highbloodpressure(hypertension)

Corticosteroidsareasafeandeffectiveformoftreatment,providedtheyaretakencorrectlyandunderthesupervisionofyourGPorspecialist.Theywill
tailorthesteroiddosetoyourdiseaseactivity,tominimisesideeffectswhileeffectivelycontrollingthecondition.

Immunosuppressants
Immunosuppressantsareatypeofmedicinethatsuppressyourimmunesystem.TheycanhelpimproveyoursymptomsofSLEbylimitingthedamageyour
immunesystemcauseswhenitattackshealthypartsofyourbody.
Commonlyprescribedimmunosuppressantmedicinesincludeazathioprine,methotrexate,mycophenolatemofetilandcyclophosphamide.
Immunosuppressantsaresometimesusedinconjunctionwithcorticosteroids(seeabove)becausethesemedicinesmayeaseyoursymptomsmore
effectivelywhenusedtogether.Alternatively,theuseofimmunosuppressantmedicationmayallowyourcorticosteroiddosetobereduced.

Sideeffects
ImmunosuppressantmedicationisusuallyonlyprescribedifyouhavesevereSLE.Thisisbecausethistypeofmedicationispowerfulandcancauseside
effectssuchas:
lossofappetite
vomiting
diarrhoea
swollengums
bruisingorbleedingmoreeasily
headache
acne
extrahairgrowth
weightgain
liverdamage
anincreasedriskofinfection(seebelow)

Methotrexate,mycophenolatemofetilandcyclophosphamidecanalsocausebirthdefectsiftheyaretakenduringpregnancy,soyoushoulduseareliable
formofcontraceptionifyouaretakingthesemedicationsandaresexuallyactive.Ifyouaretryingtobecomepregnant,analternativemedicationsuchas
azathioprinecanbeused.
TellyourGPifasideeffectbecomesparticularlytroublesome,asitmaymeanyourdoseneedstobeadjusted.

Infectionrisk
Takingimmunosuppressantmedicationcanincreaseyourriskofdevelopinganinfection.ThisisaparticularlyseriousconcernforpeoplewithSLE,because
theorgandamagethatcanoccurasaresultoftheconditionmeansinfectionsaremorelikelytobelifethreatening.
ItisthereforeveryimportanttoreportanysymptomsofapossibleinfectiontoyourGPimmediately.
SymptomsofinfectionmaysometimesbesimilartoaflareupofSLEandinclude:
afever(hightemperature)
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acoughorbreathlessness
burningwhenpassingurineorpassingbloodinyoururine
diarrhoea

Youshouldalsotrytoavoidcontactwithanyoneknowntohaveaninfectionevenifitisaninfectionyouwerepreviouslyimmuneto,suchaschickenpoxor
measles.Thisisbecauseyourpreviousimmunitytotheseconditionswillprobablybesuppressed(lowered).

Rituximab
RituximabisanewtypeofmedicationusedinpeoplewithsevereSLEthatdoesn'trespondtoothertreatments.
Rituximabwasoriginallydesignedtotreatcertaintypesofcancer,suchaslymphoma,butithassinceprovedeffectiveintreatinganumberofautoimmune
conditions,suchasSLEandrheumatoidarthritis.
Rituximabworksbylockingontoandkillingcellscalled"Bcells",whichproduceantibodiesresponsibleforthesymptomsofSLE.Itisadministereddirectly
intoyourveinoverthecourseofseveralhours,knownasaninfusion.
RituximabisnotcurrentlylicensedfortreatingSLEintheUK,butyourspecialistmayconsideritanappropriatetreatmentforyou.Ifyourdoctorsuggests
usingrituximab,theyshouldtellyouthattherearecurrentlysomeuncertaintiesabouthoweffectiveorsafeitisintreatingSLE.

Sideeffects
Commonsideeffectsofrituximabinclude:
flulikesymptoms,suchaschillsandahightemperature
dizziness
vomiting

Inrarecases,rituximabcancauseamoreseriousallergylikereaction.Mostreactionsoccurduringorshortlyafterthetreatmentisgiven,soyouwillbe
closelymonitoredonceyourtreatmentbegins.

Belimumab
BelimumabisanewmedicationgiventopeoplewithactiveSLEwhodontrespondtoothertreatments.
ItworksbybindingtogrowthfactorsthatareneededforthesurvivalofBcells.Itisgivendirectlyintoyourveinoverseveralhours,knownasaninfusion.
Thefirstthreedosesaregiven14daysapart,andthemedicationisusuallygivenonceamonththereafter.
BelimumabislicensedfortreatingSLEintheUK,andtheremaybeinstanceswhereyourspecialistmayconsideritanappropriatetreatmentforyou.Ifyour
doctorsuggestsusingbelimumab,theyshouldtellyouthattherearecurrentlysomeuncertaintiesabouthoweffectiveorsafeitisintreatingSLE.

Sideeffects
Commonsideeffectsofbelimumabinclude:
flulikesymptoms,suchaschillsandahightemperature
nauseaanddiarrhoea
headache
difficultysleeping(insomnia)
acough,sorethroatandblockedorrunnynose
jointpain
increasedriskofinfections
changesinbloodpressure

Inrarecases,belimumabcancauseamoreseriousallergylikereaction.Mostreactionsoccurduringorshortlyafterthetreatmentisgiven,soyouwillbe
closelymonitoredonceyourtreatmentbegins.

ExpertPatientsProgramme
ManypeoplewithSLEhavereportedthattheyfoundjoiningtheExpertPatientProgramme(EPP)veryhelpful.
ThisisanNHSrunselfmanagementprogrammeforpeoplelivingwithachronic(longterm)condition.Theaimistosupportpeoplewhohaveachronic
conditionby:
increasingtheirconfidence
improvingtheirqualityoflife
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helpingthemmanagetheirconditionmoreeffectively
ReadmoreabouttheExpertPatientProgramme(EPP).

NHSChoicesputsyouincontrolofyourhealthcare
TheNHSChoiceshasbeendevelopedtohelpyoumakechoicesaboutyourhealth,fromlifestyledecisionsaboutthingslikesmoking,drinkingand
exercise,throughtothepracticalaspectsoffindingandusingNHSserviceswhenyouneedthem.
www.nhs.uk

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