Puas muaj tej lub sij hawm koj xav tias koj tsis muaj zog, thiab koj cov leeg nqaij tsis muaj zog heev? Tshwj xeeb tshaj yog tias ib lossis ob lub qhov muag poob qis, koj lub ntsej muag hloov pauv, lossis koj muaj teeb meem hais lus lossis nqos? Cov no yuav yog cov tsos mob ntawm tus mob hu ua Myasthenia Gravis . Txawm hais tias qhov no yog ib qho mob txaus ntshai, tam sim no muaj kev kho mob zoo heev rau nws. Niaj hnub no peb tab tom tham txog ib qho kev kho mob tshiab, ua tiav.
Myasthenia Gravis yog dab tsi tiag?
Hais yooj yim xwb, qhov no yog ib qho mob uas koj lub cev tiv thaiv kab mob tawm tsam koj cov leeg nqaij. Peb hu qhov no ua mob autoimmune.
Ib tug leeg nqaij tau txais ib lub teeb liab los ntawm peb lub hlwb ntawm qhov chaw uas ib tug hlab ntsha thiab ib tug hlwb nqaij sib ntsib. Qhov chaw sib cuag no hu ua qhov chaw sib txuas ntawm cov hlab ntsha thiab cov leeg nqaij. Ntawm no, ib tug neurotransmitter hu ua acetylcholine xa lub teeb liab mus rau cov leeg nqaij, hais tias, "Okay, tam sim no ua nws."
Txawm li cas los xij, ntau tus neeg uas muaj tus kab mob myasthenia gravis tsim cov tshuaj tiv thaiv kab mob uas tawm tsam cov receptors uas tau txais cov teeb liab acetylcholine no. Cov tshuaj tiv thaiv kab mob no hu ua anti- acetylcholine receptor (AChR) antibodies . Vim yog cov tshuaj tiv thaiv kab mob no, cov leeg nqaij tsis tau txais cov teeb liab los ntawm lub hlwb kom zoo. Qhov tshwm sim yog cov leeg nqaij tsis muaj zog.
| Cov tsos mob ntawm myasthenia gravis feem ntau | |
|---|---|
| Qhov muag poob qis | Qhov muag ntawm ib lossis ob lub qhov muag poob qis yam tsis muaj kev tswj hwm. |
| Kev hloov pauv ntawm lub ntsej muag | Kev hloov pauv ntawm qhov tsos thaum luag nyav lossis hais lus vim yog qhov tsis muaj zog ntawm cov leeg ntawm lub ntsej muag, qhov ncauj, lossis lub puab tsaig. |
| Tsis muaj zog ntawm cov ceg | Tsis muaj zog ntawm caj npab, ceg, thiab ntiv tes. Nyuaj siab tsa hnyav thiab taug kev. |
| Nyuaj nqos | Nyuaj nqos zaub mov los yog dej haus, ua rau mob caj pas ntau zaus. |
| Nyuaj hais lus | Lub suab hloov pauv thiab cov lus tsis meej thaum hais lus. |
Qhov tseem ceeb yog tias tsis yog txhua tus neeg mob yuav muaj tag nrho cov tsos mob no. Cov tsos mob yuav txawv nyob ntawm qhov hnyav ntawm tus kab mob.
Ultomiris (Ravulizumab) ua haujlwm li cas?
Tseem tsis tau muaj tshuaj kho tau tus mob myasthenia gravis. Tiam sis muaj ntau yam kev kho mob zoo uas tuaj yeem pab tswj cov tsos mob thiab ua lub neej zoo li qub. Ultomiris yog ib qho kev kho mob tshiab zoo li no.
Ultomiris yog ib yam tshuaj tiv thaiv kab mob tshwj xeeb uas thaiv ib hom protein hauv peb lub cev tiv thaiv kab mob hu ua C5 . Cov protein C5 no yog yam uas pab ua rau cov leeg nqaij puas tsuaj. Yog li thaum Ultomiris nres nws, koj lub cev tiv thaiv kab mob yuav tsis rhuav tshem cov hlwb nqaij. Qhov ntawd txhais tau tias cov tshuaj no ua haujlwm los ntawm kev mus rau hauv paus ntawm tus kab mob.
Kev kho mob no muab li cas?
Cov tshuaj no muab rau koj ua cov tshuaj txhaj rau hauv cov hlab ntsha (IV infusion) zoo li saline. Cov tshuaj no yog muab rau koj los ntawm tus kws kho mob lossis tus neeg ua haujlwm kho mob uas tau kawm tiav hauv tsev kho mob lossis chaw kho mob.
Feem ntau, koj yuav tau txais ib koob tshuaj thawj zaug, tom qab ntawd yuav tau txais lwm koob tshuaj ob lub lis piam tom qab. Tom qab ntawd, koj yuav tsum tau txuas ntxiv noj cov tshuaj no txhua yim lub lis piam . Txawm li cas los xij, koj tus kws kho mob yuav txiav txim siab seb koj yuav tsum tau noj nws ntev npaum li cas thiab koj yuav tsum tau noj nws li cas (feem ntau raws li koj qhov hnyav ntawm lub cev) .
Nws yog ib qho tseem ceeb heev uas yuav tsum noj koj cov tshuaj raws sijhawm. Yog tias koj tsis nco qab noj ib zaug, hu rau koj tus kws kho mob ua ntej .
Koj paub li cas tias cov tshuaj ua haujlwm?
Koj yuav pib hnov tias koj cov leeg nqaij maj mam muaj zog. Koj yuav ua tau koj cov dej num txhua hnub yooj yim. Hauv kev tshawb fawb hauv tsev kho mob, qee qhov kev txhim kho hauv cov tsos mob tau pom hauv ib lub lim tiam.
Txawm li cas los xij, yog tias koj tsis hnov qhov txawv, lossis yog tias koj cov tsos mob zoo li hnyav zuj zus, nco ntsoov tham nrog koj tus kws kho mob . Nws lossis nws tuaj yeem ua tauHloov qhov ntau npaum li cas, muab tshuaj ntxiv, lossis hloov mus rau lwm txoj kev kho mob.
Tej yam tshwm sim tsis zoo li cas?
Ib yam li lwm yam tshuaj, nws tuaj yeem ua rau muaj kev phiv me me. Cov kev phiv feem ntau yog:
- Mob plab (raws plab)
- Kab mob ntawm qhov ntswg lossis caj pas
- Mob caj pas
- Cov tsos mob ntawm tus mob khaub thuas
Yuav kom tswj tau koj lub plab mob, noj cov khoom noj me me xws li mov, txiv tsawb, thiab mov ci. Haus dej ntau. Txo koj cov dej haus uas muaj caffeine xws li kas fes. Yog tias cov kev ntsuas no tsis pab, lossis yog tias cov tsos mob xws li mob caj pas lossis ntswg ntws tseem muaj, tham nrog koj tus kws kho mob . Nws yuav txiav txim siab qhov kev kho mob zoo tshaj plaws rau koj.
Cov yam tshwj xeeb uas yuav tsum paub yog dab tsi? (REMS Program)
Qhov no tseem ceeb heev!
Ultomiris yog ib yam tshuaj uas muab rau hauv ib qho kev pab cuam tswj kev pheej hmoo tshwj xeeb (Kev Ntsuam Xyuas Kev Pheej Hmoo thiab Kev Txo Kev Pheej Hmoo - REMS). Qhov no yog vim muaj kev pheej hmoo me me tab sis loj heev ntawm kev kis tus kab mob hu ua meningococcal, tshwj xeeb tshaj yog meningitis, uas cuam tshuam rau lub hlwb thiab tus txha caj qaum.
Vim li no, koj tus kws kho mob yuav muab daim npav tshwj xeeb rau koj rau kev nyab xeeb ntawm tus neeg mob .
- Nws hais meej meej txog cov tsos mob ntawm cov kab mob no (piv txwv li kub taub hau tam sim ntawd, mob taub hau, caj dab txhav, xeev siab, ntuav, thiab rhiab rau lub teeb).
- Kuj tseem hais tias yog tias muaj cov tsos mob zoo li no, ib tug yuav tsum mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) tam sim ntawd.
- Nws yog ib qho tseem ceeb uas yuav tsum khaws daim npav no nrog koj txhua lub sijhawm - thaum lub sijhawm kho mob thiab txog li 8 lub hlis tom qab kev kho mob tsis ua haujlwm lawm.
Ntxiv mus, ua ntej pib kho mob, koj tus kws kho mob yuav nug seb koj puas tau txhaj tshuaj tiv thaiv kab mob meningococcal. Yog tias tsis tau, lawv yuav qhia koj kom txhaj tshuaj tsawg kawg yog ob lub lis piam ua ntej pib kho mob.
Teeb meem nrog lwm cov tshuaj
Nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau koj tus kws kho mob yog tias koj tab tom noj lwm yam kev kho mob, tshwj xeeb tshaj yog:
- Kev kho mob uas tshem cov plasma tawm ntawm cov ntshav (plasma exchange lossis plasmapheresis)
- Kev kho mob immunoglobulin hauv cov hlab ntsha (IVIg)
- Cov tshuaj thaiv kab mob Fc receptor (FcRn) rau cov menyuam mos uas muaj mob myasthenia gravis
Tej yam zoo li no yuav ua rau Ultomiris tsis ua haujlwm zoo. Yog li ntawd, qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj, txawm tias cov vitamins.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Ultomiris (Ravulizumab) yog ib txoj kev kho mob niaj hnub no uas ua tau zoo rau cov neeg mob uas muaj myasthenia gravis (nrog rau cov tshuaj tiv thaiv AChR).
- Qhov no tiv thaiv lub cev tiv thaiv kab mob kom tsis txhob tawm tsam nws cov leeg nqaij.
- Qhov no yog kev kho mob uas muab rau hauv cov hlab ntsha txhua yim lub lis piam (tom qab cov koob tshuaj thawj zaug).
- Vim tias muaj kev pheej hmoo ntawm kev kis tus kab mob meningococcal thaum noj cov tshuaj no, nws yog ib qho tseem ceeb uas yuav tsum tau txhaj tshuaj tiv thaiv thiab khaws koj daim npav kev nyab xeeb ntawm tus neeg mob nrog koj.
- Tham nrog koj tus kws kho mob txog tej yam kev mob tshwm sim, cov tsos mob uas zuj zus tuaj, lossis kev siv lwm yam tshuaj. Kev sib txuas lus zoo ntawm koj thiab koj tus kws kho mob yog qhov tseem ceeb rau kev vam meej ntawm koj txoj kev kho mob.
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Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus