Ngaba ngamanye amaxesha uziva ngathi awunamandla, kwaye izihlunu zakho zibuthathaka kakhulu? Ingakumbi ukuba iliso elinye okanye omabini ayawa, ubuso bakho butshintsha, okanye unengxaki yokuthetha okanye yokuginya? Ezi zinokuba ziimpawu zesifo esibizwa ngokuba yiMyasthenia Gravis . Nangona esi sisifo esoyikekayo, ngoku kukho unyango oluhle kakhulu lwaso. Namhlanje sithetha ngonyango olutsha noluphumeleleyo.
Yintoni kanye kanye iMyasthenia Gravis?
Ngamafutshane, le yimeko apho amajoni omzimba wakho ahlasela izihlunu zakho. Oku sikubiza ngokuba yimeko yokuzikhusela komzimba.
Isihlunu sifumana isignali evela kwingqondo yethu kwindawo apho umthambo kunye neseli yemisipha kudibana khona. Le ndawo yokunxibelelana ibizwa ngokuba yi-neuromuscular junction. Apha, i-neurotransmitter ebizwa ngokuba yi-acetylcholine ithumela isignali kwisihlunu, isithi, "Kulungile, yenza ngoku."
Nangona kunjalo, abantu abaninzi abane-myasthenia gravis bavelisa ii-antibodies ezihlasela ii-receptors ezifumana esi siginali ye-acetylcholine. Ezi antibodies zibizwa ngokuba zii-anti -acetylcholine receptor (AChR) antibodies . Ngenxa yezi antibodies, izihlunu azifumani isiginali evela ebuchosheni ngokufanelekileyo. Isiphumo kukuba buthathaka kwezihlunu.
| Iimpawu eziqhelekileyo ze-myasthenia gravis | |
|---|---|
| Iinkophe ezigobileyo | Ukugoba okungalawulekiyo kweenkophe zeliso elinye okanye omabini. |
| Utshintsho lobuso | Utshintsho kwinkangeleko xa uncuma okanye uthetha ngenxa yobuthathaka bemisipha ebusweni, emlonyeni, okanye emhlathini. |
| Ubuthathaka kwimilenze | Ukuphelelwa ngamandla kwiingalo, imilenze, neminwe. Ubunzima bokuphakamisa iintsimbi nokuhamba. |
| Ubunzima bokuginya | Ubunzima bokuginya ukutya okanye isiselo, ukukrwitshwa rhoqo. |
| Ubunzima bokuthetha | Ukutshintsha kwelizwi kunye nokungacaci kwamagama xa uthetha. |
Into ebalulekileyo kukuba ayizizo zonke izigulana eziya kuba nazo zonke ezi mpawu. Iimpawu zinokwahluka ngokuxhomekeke kubukhali besifo.
Isebenza njani i-Ultomiris (Ravulizumab)?
Akukho nyango lwe-myasthenia gravis okwangoku. Kodwa kukho unyango oluninzi olusebenzayo olunokunceda ukulawula iimpawu kunye nokuphila ubomi obuqhelekileyo. I-Ultomiris lolunye lonyango olutsha.
I-Ultomiris yi-antibody ekhethekileyo ethintela iproteni kwinkqubo yethu yokuzikhusela yomzimba ebizwa ngokuba yi-C5 . Le protein ye-C5 yeyona inceda ekonakaliseni izihlunu. Ngoko ke xa i-Ultomiris iyimisa, inkqubo yakho yokuzikhusela yomzimba iyeka ukutshabalalisa iiseli zezihlunu. Oko kuthetha ukuba eli yeza lisebenza ngokungena ngqo kwiingcambu zesifo.
Lunikwa njani olu nyango?
Eli yeza linikwa wena njenge-intravenous infusion (IV infusion) njenge-saline. Eli yeza linikwa ngugqirha okanye umsebenzi wezempilo oqeqeshiweyo esibhedlele okanye eklinikhi.
Ngokwesiqhelo, uza kunikwa idosi yokuqala, ilandelwe yidosi enye emva kweeveki ezimbini. Emva koko, kuya kufuneka uqhubeke nokuthatha olu nyango rhoqo emva kweeveki ezisibhozo . Nangona kunjalo, ugqirha wakho uya kugqiba ukuba uza kuyithatha ixesha elingakanani kwaye yeyiphi idosi (ehlala isekelwe kubunzima bomzimba wakho) oza kuyithatha .
Kubaluleke kakhulu ukuthatha amayeza akho ngexesha. Ukuba uphoswe yidosi, fowunela ugqirha wakho kwangethuba .
Uyazi njani ukuba iyeza liyasebenza?
Uza kuqala ukuziva izihlunu zakho ziqina kancinci kancinci. Uza kukwazi ukwenza imisebenzi yakho yemihla ngemihla ngokulula. Kwizifundo zeklinikhi, kuye kwabonakala ukuphucuka kweempawu kwiveki nje enye.
Nangona kunjalo, ukuba awuva mahluko, okanye ukuba iimpawu zakho zibonakala zisiba mandundu, qiniseka ukuba uthetha nogqirha wakho .Tshintsha idosi, nika amanye amayeza, okanye utshintshele kolunye unyango.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengayo nayiphi na iyeza, inokubangela iziphumo ebezingalindelekanga ezincinci. Ezona ziphumo bezingalindelekanga zixhaphakileyo zezi:
- Ukudumba (urhudo)
- Usulelo lwempumlo okanye umphimbo
- Umqala obuhkungu
- Iimpawu zomkhuhlane eziqhelekileyo
Ukuze ulawule ukuxakeka kwesisu sakho, yitya ukutya okulula okufana nerayisi, iibhanana, kunye nesonka. Sela amanzi amaninzi. Nciphisa ukutya kwakho iziselo ezine-caffeine ezifana nekofu. Ukuba la manyathelo awancedi, okanye ukuba iimpawu ezifana nomphimbo obuhlungu okanye impumlo egobhozayo ziyaqhubeka, thetha nogqirha wakho . Nguye oza kukumisela unyango olungcono kuwe.
Zeziphi izinto ezikhethekileyo ekufuneka uzazi? (Inkqubo ye-REMS)
Oku kubaluleke kakhulu!
I-Ultomiris liyeza elinikwa phantsi kwenkqubo ekhethekileyo yolawulo lomngcipheko (Risk Evaluation and Mitigation Strategy - REMS). Oku kungenxa yokuba kukho umngcipheko omncinci kodwa onzima wokufumana usulelo lwebhaktheriya olubizwa ngokuba yi-meningococcal, ingakumbi i-meningitis, oluchaphazela ingqondo kunye nomqolo.
Ngenxa yesi sizathu, ugqirha wakho uza kukunika ikhadi elikhethekileyo lokhuseleko lwesigulana .
- Ichaza ngokucacileyo iimpawu zezi zifo (umz. umkhuhlane okhawulezileyo, intloko ebuhlungu, intamo eqinileyo, isicaphucaphu, ukuhlanza, kunye nokuziva ukhululekile ekukhanyeni).
- Kukwathiwa ukuba ukuba iimpawu ezinjalo ziyabonakala, umntu kufuneka aye kwiYunithi yoNyango oluNgxamisekileyo (ETU) ngoko nangoko.
- Kubalulekile ukugcina eli khadi kuwe ngamaxesha onke — kokubini ngexesha lonyango ukuya kuthi ga kwiinyanga ezi-8 emva kokuba unyango luyekile.
Ukongeza, ngaphambi kokuba uqale unyango, ugqirha wakho uza kukubuza ukuba ugonyelwe isifo se-meningococcal na. Ukuba akunjalo, baza kukucebisa ukuba ufumane ugonyo ubuncinane iiveki ezimbini ngaphambi kokuba uqale unyango.
Iingxaki ngamanye amayeza
Kubaluleke kakhulu ukuxelela ugqirha wakho ukuba usebenzisa naluphi na olunye unyango, ingakumbi:
- Unyango olususa i-plasma egazini (i-plasma exchange okanye i-plasmapheresis)
- Unyango lwe-Intravenous immunoglobulin (IVIg)
- Amayeza okuthintela i-Neonatal Fc receptor (FcRn) kwi-myasthenia gravis
Izinto ezinje ngezi zinokunciphisa ukusebenza kwe-Ultomiris. Ngoko ke xelela ugqirha wakho ngazo zonke amayeza owasebenzisayo, kuquka neevithamini.
Umyalezo Wokuya Ekhaya
- I-Ultomiris (iRavulizumab) lunyango lwanamhlanje noluphumeleleyo kwizigulane ezine-myasthenia gravis (ezine-AChR antibodies).
- Oku kuyayithintela inkqubo yomzimba yokuzikhusela ekuhlaseleni izihlunu zayo.
- Olu lunyango olunikwa ngemithambo rhoqo emva kweeveki ezisibhozo (emva kokuthatha idosi yokuqala).
- Ngenxa yokuba kukho umngcipheko wokosuleleka yi-meningococcal xa usela eli yeza, kuyimfuneko ukugonywa kwaye ugcine ikhadi lakho lokhuseleko lwesigulana nawe.
- Thetha ngokukhululekileyo nogqirha wakho malunga nazo naziphi na iziphumo ebezingalindelekanga, iimpawu eziya ziba mandundu, okanye ukusebenzisa amanye amayeza. Unxibelelwano oluhle phakathi kwakho nogqirha wakho lubalulekile kwimpumelelo yonyango lwakho.
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