Ingabe ngezinye izikhathi uzizwa sengathi awunawo amandla, futhi imisipha yakho ibuthakathaka kakhulu? Ikakhulukazi uma ijwabu elilodwa noma womabili ewa, ubuso bakho bushintsha, noma unenkinga yokukhuluma noma yokugwinya? Lokhu kungaba izimpawu zesimo esibizwa ngokuthi iMyasthenia Gravis . Nakuba lesi kuyisimo esesabekayo, manje kunezindlela zokwelapha ezinhle kakhulu zaso. Namuhla sikhuluma ngenye yezindlela zokwelapha ezintsha neziphumelelayo.
Iyini ngempela iMyasthenia Gravis?
Kalula nje, lesi yisimo lapho amasosha omzimba wakho ehlasela khona imisipha yakho. Lokhu sikubiza ngokuthi yisimo sokuzivikela komzimba.
Imisipha ithola isignali evela ebuchosheni bethu endaweni lapho kuhlangana khona inzwa neseli lemisipha. Le ndawo yokuxhumana ibizwa ngokuthi i-neuromuscular junction. Lapha, i-neurotransmitter ebizwa ngokuthi i-acetylcholine ithumela isignali emisipheni, ithi, "Kulungile, kwenze manje."
Kodwa-ke, abantu abaningi abane-myasthenia gravis bakha ama-antibodies ahlasela ama-receptor athola lesi siginali ye-acetylcholine. La ma-antibodies abizwa ngokuthi ama-anti -acetylcholine receptor (AChR) antibodies . Ngenxa yala ma-antibodies, imisipha ayitholi isiginali ebuchosheni ngendlela efanele. Umphumela uba ubuthakathaka bemisipha.
| Izimpawu ezivamile ze-myasthenia gravis | |
|---|---|
| Amajwabu amehlo athambile | Ukugoba okungalawuleki kwamehlo elinye noma womabili amehlo. |
| Izinguquko zobuso | Ukushintsha kokubukeka lapho umomotheka noma ukhuluma ngenxa yobuthakathaka bemisipha ebusweni, emlonyeni, noma emhlathini. |
| Ubuthakathaka emilenzeni | Ukulahlekelwa amandla ezingalweni, emilenzeni, naseminweni. Ubunzima bokuphakamisa izinsimbi nokuhamba. |
| Ubunzima bokugwinya | Ubunzima bokugwinya ukudla noma isiphuzo, ukuminyana njalo. |
| Ubunzima bokukhuluma | Izwi liyashintsha kanye nokungaqondi kahle kwamagama lapho ekhuluma. |
Into ebalulekile ukuthi akuzona zonke iziguli ezizobhekana nazo zonke lezi zimpawu. Izimpawu zingase zihluke kuye ngokuthi isifo sibucayi kangakanani.
Isebenza kanjani i-Ultomiris (Ravulizumab)?
Akukho ukwelashwa kwe-myasthenia gravis okwamanje. Kodwa kunezindlela eziningi zokwelapha ezisebenzayo ezingasiza ekulawuleni izimpawu nasekuphileni impilo evamile. I-Ultomiris ingenye yezindlela ezintsha zokwelapha.
I-Ultomiris iyi-antibody ekhethekile evimba iphrotheni ohlelweni lwethu lokuzivikela komzimba olubizwa nge-C5 . Le phrotheni ye-C5 yiyona esiza ekulimazeni imisipha. Ngakho-ke lapho i-Ultomiris iyivimba, isimiso sakho sokuzivikela komzimba siyayeka ukubhubhisa amangqamuzana emisipha. Lokho kusho ukuthi lo muthi usebenza ngokuya ngqo empandeni yesifo.
Lokhu kwelashwa kunikezwa kanjani?
Lomuthi unikezwa wona njengokufakwa kwe-intravenous (IV infusion) njengosawoti. Lomuthi unikezwa ngudokotela noma isisebenzi sezempilo esiqeqeshiwe esibhedlela noma emtholampilo.
Ngokuvamile, uzonikezwa umthamo wokuqala, kulandele omunye umthamo emavikini amabili kamuva. Ngemva kwalokho, kuzodingeka uqhubeke nokuthatha lo muthi njalo emavikini ayisishiyagalombili . Kodwa-ke, udokotela wakho uzonquma ukuthi uzodinga ukuwuthatha isikhathi esingakanani nokuthi uzodinga ukuwuthatha isikhathi esingakanani (ngokuvamile ngokusekelwe esisindweni somzimba wakho) .
Kubaluleke kakhulu ukuthatha umuthi wakho ngesikhathi. Uma uphuthelwa umthamo, shayela udokotela wakho kusenesikhathi .
Wazi kanjani ukuthi umuthi uyasebenza?
Uzoqala ukuzwa imisipha yakho iqina kancane kancane. Uzokwazi ukwenza imisebenzi yakho yansuku zonke kalula. Ezifundweni zezokwelapha, kubonakale ukuthuthuka okuthile kwezimpawu esikhathini esingangesonto.
Kodwa-ke, uma ungezwa mehluko, noma uma izimpawu zakho zibonakala ziba zimbi kakhulu, qiniseka ukuthi ukhuluma nodokotela wakho . AngakwaziShintsha umthamo, nikeza umuthi owengeziwe, noma ushintshele kolunye ukwelashwa.
Yimiphi imiphumela emibi engaba khona?
Njenganoma yimuphi umuthi, ungabangela imiphumela emibi emincane. Imiphumela emibi evame kakhulu yile:
- Ukuqunjelwa (uhudo)
- Ukutheleleka kwekhala noma umphimbo
- Umphimbo obuhlungu
- Izimpawu zomkhuhlane ezivamile
Ukuze ulawule ukucasuka kwesisu sakho, yidla ukudla okulula njengelayisi, ubhanana, nesinkwa. Phuza amanzi amaningi. Nciphisa ukudla kwakho iziphuzo ezine-caffeine njengekhofi. Uma lezi zinyathelo zingasizi, noma uma izimpawu ezifana nomphimbo obuhlungu noma impumulo egobhozayo ziqhubeka, khuluma nodokotela wakho . Uzonquma ukwelashwa okungcono kakhulu kuwe.
Yiziphi izinto ezikhethekile okufanele uzazi? (Uhlelo lwe-REMS)
Lokhu kubaluleke kakhulu!
I-Ultomiris umuthi onikezwa ngaphansi kohlelo olukhethekile lokulawula ubungozi (Isu Lokuhlola Ingozi Nokunciphisa - I-REMS). Lokhu kungenxa yokuthi kunengozi encane kakhulu kodwa enkulu yokuthola ukutheleleka kwebhaktheriya okubizwa ngokuthi i-meningococcal, ikakhulukazi i-meningitis, ethinta ubuchopho kanye nomgogodla.
Ngenxa yalesi sizathu, udokotela wakho uzokunikeza ikhadi elikhethekile lokuphepha kwesiguli .
- Ichaza ngokucacile izimpawu zalezi zifo (isib. umkhuhlane osheshayo, ikhanda elibuhlungu, intamo eqinile, isicanucanu, ukuhlanza, kanye nokuzwela ukukhanya).
- Kuthiwa futhi uma kuvela izimpawu ezinjalo, umuntu kufanele aye e-Emergency Treatment Unit (ETU) ngokushesha.
- Kubalulekile ukugcina leli khadi nawe ngaso sonke isikhathi — kokubili ngesikhathi sokwelashwa kanye nezinyanga ezifika kweziyisishiyagalombili ngemva kokuyeka ukwelashwa.
Ngaphezu kwalokho, ngaphambi kokuqala ukwelashwa, udokotela wakho uzobuza ukuthi ngabe uke wagonyelwa isifo se-meningococcal. Uma kungenjalo, bazokweluleka ukuthi uthole umuthi wokugomela okungenani amasonto amabili ngaphambi kokuqala ukwelashwa.
Izinkinga ngeminye imithi
Kubaluleke kakhulu ukutshela udokotela wakho uma usebenzisa noma yiziphi ezinye izindlela zokwelapha, ikakhulukazi:
- Ukwelashwa okususa i-plasma egazini (ukushintshaniswa kwe-plasma noma i-plasmapheresis)
- Ukwelashwa nge-Intravenous immunoglobulin (IVIg)
- Imithi yokuvimbela i-Neonatal Fc receptor (FcRn) ye-myasthenia gravis
Izinto ezinjengalezi zinganciphisa ukusebenza kahle kwe-Ultomiris. Ngakho-ke tshela udokotela wakho ngayo yonke imithi oyithathayo, ngisho namavithamini.
Umlayezo Wokuya Nawe Ekhaya
- I-Ultomiris (i-Ravulizumab) iyindlela yokwelapha yesimanje nephumelelayo yeziguli ezine-myasthenia gravis (ene-AChR antibodies).
- Lokhu kuvimbela amasosha omzimba ekuhlaseleni imisipha yawo.
- Lokhu ukwelashwa okunikezwa ngemithambo yegazi njalo emavikini ayisishiyagalombili (ngemuva kokuthatha imithamo yokuqala).
- Ngenxa yokuthi kunengozi yokutheleleka nge-meningococcal uma uthatha lo muthi, kuyimpoqo ukugonywa futhi ugcine ikhadi lakho lokuphepha lesiguli nawe.
- Khuluma ngokukhululekile nodokotela wakho nganoma yimiphi imiphumela emibi, izimpawu eziya ziba zimbi kakhulu, noma ukusetshenziswa kweminye imithi. Ukuxhumana okuhle phakathi kwakho nodokotela wakho kubalulekile empumelelweni yokwelashwa kwakho.
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