Koj puas muaj cov tsos mob xws li qaug zog tas li, ua tsis taus pa thaum taug kev me ntsis, lossis zis xim av tsaus thaum sawv ntxov? Qee zaum cov no tuaj yeem yog cov tsos mob ntawm tus kab mob ntshav tsis tshua muaj hu ua Paroxysmal Nocturnal Hemoglobinuria, lossis PNH raws li peb cov kws kho mob hu nws. Tsis txhob ntshai thaum koj hnov lub npe no. Txawm hais tias nws nyuaj me ntsis, cia peb tham txog tus kab mob no thiab kev kho mob tshiab rau nws hu ua Fabhalta hauv cov lus yooj yim thiab ntxaws ntxaws.
PNH yog dab tsi tiag?
Hais yooj yim xwb, PNH yog ib qho mob ntshav tsawg heev uas tshwm sim los ntawm qhov tsis zoo ntawm noob caj noob ces. Peb cov qe ntshav liab (RBCs) muaj ib txheej protein tiv thaiv nyob ib puag ncig lawv. Txawm li cas los xij, hauv PNH, txheej tiv thaiv no tsis tau tsim.
Xav txog peb cov qe ntshav liab zoo li cov tub rog uas tsis muaj riam phom tiv thaiv. Yog tsis muaj kev tiv thaiv no, peb lub cev lub cev tiv thaiv kab mob yuav tsis meej pem thiab pib tawm tsam thiab rhuav tshem cov qe ntshav liab noj qab haus huv no, xav tias lawv yog cov yeeb ncuab. Qhov kev tawg ntawm cov qe ntshav liab ua ntej lub sijhawm no yog qhov peb hu ua hemolysis . Qhov kev puas tsuaj no tuaj yeem tshwm sim hauv cov hlab ntsha (intravascular) thiab sab nraud cov hlab ntsha (extrapucular).
Thaum cov qe ntshav liab raug rhuav tshem li no, cov tsos mob tseem ceeb tuaj yeem yog ntshav tsis txaus thiab cov ntshav txhaws. Cov ntshav txhaws no qee zaum tuaj yeem ua rau tuag taus. Ib tus neeg uas muaj PNH yuav muaj ntau yam tsos mob no, lossis lawv tsuas muaj ob peb yam xwb.
| Cov tsos mob ntawm tus kab mob PNH | |
|---|---|
| qaug zog tas li los yog tsis muaj zog | Ua pa nyuaj |
| Mob taub hau | Lub plawv dhia tsis xwm yeem lossis ceev ceev |
| Mob plab | Daim tawv nqaij yooj yim raug mob |
| Cov zis xim tsaus (xim av), tshwj xeeb tshaj yog thaum hmo ntuj lossis thaum sawv ntxov | Liab, mob, thiab o ntawm ib qho chaw tshwj xeeb ntawm daim tawv nqaij (tej zaum yuav yog ib qho cim ntawm cov ntshav txhaws) |
Kev kho mob rau PNH suav nrog kev hloov ntshav, cov tshuaj folic acid lossis cov tshuaj hlau rau kev mob ntshav tsis txaus, cov tshuaj anticoagulants, thiab cov tshuaj uas tiv thaiv cov qe ntshav liab kom tsis txhob raug tawm tsam los ntawm lub cev tiv thaiv kab mob. Kev kho mob uas koj tau txais yuav nyob ntawm seb koj muaj pes tsawg cov tsos mob thiab lawv hnyav npaum li cas.
Cov tshuaj Fabhalta ua haujlwm li cas?
Cov tshuaj xws li eculizumab (Soliris) lossis ravulizumab (Ultomiris) uas feem ntau muab ua tshuaj txhaj rau PNH ua haujlwm los ntawm kev thaiv ib feem ntawm peb lub cev tiv thaiv kab mob hu ua complement system, hu ua C5. Txawm hais tias cov no tiv thaiv kev tawg ntshav hauv cov hlab ntsha, qee tus neeg yuav tseem muaj ntshav tsis txaus vim yog kev tawg ntshav sab nraud.
Qhov no yog qhov uas thawj cov tshuaj noj hu ua Fabhalta los ua qhov tseem ceeb.
Xav txog peb lub cev tiv thaiv kab mob ua ib pab tub rog tiv thaiv peb lub teb chaws. Hauv PNH, ib feem ntawm cov tub rog no tsis meej pem thiab tawm tsam peb cov qe ntshav liab noj qab haus huv. Fabhalta thaiv ib qho protein hu ua factor B uas ua rau muaj qhov tsis meej pem no. Qhov no tiv thaiv lub cev tiv thaiv kab mob kom tsis txhob tawm tsam cov qe ntshav liab. Qhov no ua rau muaj cov qe ntshav liab noj qab haus huv ntau ntxiv, txo cov tsos mob, thiab txo qhov xav tau kev hloov ntshav.
Kuv yuav tsum siv cov tshuaj no li cas?
Fabhalta yog ib lub tshuaj ntsiav uas nqos tag nrho ob zaug hauv ib hnub, nrog lossis tsis muaj zaub mov. Tsis txhob rhuav, zom, lossis zom lub tshuaj ntsiav. Yog tias koj tsis nco qab noj ib zaug, noj nws sai li sai tau thaum koj nco qab thiab tom qab ntawd noj cov tshuaj seem li niaj zaus. Yog tias koj twb noj lwm yam tshuaj PNH (xws li eculizumab lossis ravulizumab), koj tus kws kho mob yuav piav qhia txog txoj hauv kev kom raug los hloov mus rau Fabhalta.
Tseem Ceeb Heev: Nws yog ib qho tseem ceeb uas koj tau txhaj tshuaj tiv thaiv kab mob uas koj xav tau tsawg kawg yog ob lub lis piam ua ntej pib kho mob no. Qhov no suav nrog tshuaj tiv thaiv kab mob pneumococcal thiab tshuaj tiv thaiv kab mob meningitis. Yog tias koj tsis tuaj yeem txhaj tshuaj tiv thaiv kab mob thiab tsis tuaj yeem pib Fabhalta, koj tus kws kho mob yuav muab tshuaj tiv thaiv kab mob rau koj thiab pib noj tshuaj tua kab mob rau koj tib lub sijhawm.
Txawm tias koj cov tsos mob zoo dua los xij, tsis txhob tsum noj Fabhalta yam tsis tau kev qhia los ntawm kws kho mob . Yog tias koj ua li ntawd, koj cov qe ntshav liab yuav pib tawg sai dua.
Cov tshuaj no tau raug kawm txog cov teebmeem li cas?
Muaj ob txoj kev tshawb fawb tseem ceeb tau ua los xyuas kom meej tias Fabhalta ua haujlwm tau zoo thiab muaj kev nyab xeeb. Ob qho tib si suav nrog cov neeg mob uas muaj PNH thiab cov ntshav tsis txaus uas tshwm sim los ntawm nws.
1. Kev tshawb nrhiav APPLY-PNH: Qhov no suav nrog cov neeg uas muaj ntshav tsis txaus txawm tias tau noj lwm yam tshuaj PNH (eculizumab lossis ravulizumab) tsawg kawg yog 6 lub hlis. Lawv tau muab faib ua ob pawg, ib pawg tau txais Fabhalta, thiab lwm pawg txuas ntxiv noj cov tshuaj qub.
2. Kev tshawb nrhiav APPOINT-PNH: Qhov no suav nrog cov neeg mob uas tsis tau txais lwm yam tshuaj ntxiv rau PNH ua ntej. Lawv txhua tus tau txais Fabhalta.
Cov txiaj ntsig ntawm cov kev tshawb fawb no, tom qab 24 lub lis piam, zoo heev.
| Cov txiaj ntsig tau txais | Qhov tshwm sim |
|---|---|
| Cov hemoglobin ntau ntxiv | Ntau tshaj 82% ntawm cov neeg mob uas tau noj Fabhalta muaj hemoglobin nce ntxiv ntawm 2 g / dL, piv rau tsis muaj ib tus neeg uas tau noj lwm yam tshuaj. |
| Tsis txhob muab ntshav ntxiv rau hauv lub cev | 95% ntawm cov neeg mob uas tau noj Fabhalta tsis xav tau kev hloov ntshav sab nraud thaum lub sijhawm kawm, piv rau tsuas yog 50% ntawm cov neeg uas tau noj lwm yam tshuaj. |
Nco ntsoov tias, txawm tias cov txiaj ntsig ntawm cov kev tshawb fawb no yuav zoo li cas los xij, koj cov txiaj ntsig yuav txawv ntawm ib tus neeg mus rau ib tus neeg. Nws yog qhov zoo tshaj plaws los tham txog cov txiaj ntsig thiab kev pheej hmoo ntawm cov tshuaj nrog koj tus kws kho mob ua ntej txiav txim siab.
Koj paub li cas tias cov tshuaj ua haujlwm?
Yog tias kev kho mob Fabhalta ua tiav, koj cov qe ntshav liab thiab cov hemoglobin yuav pib nce ntxiv. Tej zaum koj yuav muaj tej yam xws li:
- Muaj zog ntxiv thiab qaug zog tsawg dua
- Cov xim tsaus ntawm cov zis txo qis
- Kev ntshaw zaub mov ntau ntxiv thiab mob plab tsawg dua
- Txo qhov xav tau kev hloov ntshav sab nraud
- Muaj peev xwm ua cov haujlwm txhua hnub tau yooj yim
Vim tias cov txiaj ntsig ntawm kev kho mob txawv ntawm ib tus neeg mus rau ib tus neeg, khaws cov ntaub ntawv ntawm koj cov tsos mob thiab tham nrog koj tus kws kho mob txhua zaus koj mus ntsib nws.
Cov kev mob tshwm sim thiab yuav ua li cas los tswj lawv?
Ib yam li lwm yam tshuaj, Fabhalta tuaj yeem ua rau muaj kev phiv. Feem ntau yog mob taub hau, raws plab, xeev siab, mob plab, thiab tawv nqaij tawm pob. Cov tsos mob ntawm tus mob khaub thuas thiab lwm yam kab mob bacterial lossis viral kuj tseem yuav tshwm sim.
Cov kab mob loj uas xav tau kev saib xyuas!
Vim tias cov tshuaj no ua rau ib feem ntawm lub cev tiv thaiv kab mob tsis muaj zog, muaj kev pheej hmoo ntawm kev kis kab mob hnyav los ntawm qee hom kab mob. Tshwj xeeb tshaj yog *Streptococcus pneumoniae*, *Neisseria meningitidis*, thiab *Haemophilus influenzae type B*. Cov kab mob no tuaj yeem ua rau tuag taus yog tias tsis kuaj pom thiab kho sai.
Txoj kev zoo tshaj plaws los tiv thaiv kev kis kab mob yog kom tau txhaj tshuaj tiv thaiv kab mob raws li tau pom zoo , ntxuav koj txhais tes kom huv si, thiab nyob deb ntawm cov neeg mob. Yog tias koj muaj ib qho ntawm cov tsos mob hauv qab no, qhia rau koj tus kws kho mob tam sim ntawd lossis mus rau chav kho mob ceev hauv tsev kho mob (ETU) ze tshaj plaws.
| Cov cim ceeb toom ntawm kev kis kab mob loj heev | |
|---|---|
| Kub taub hau nrog lossis tsis muaj hnoos qeev, mob hauv siab thiab hnoos, lub plawv dhia ceev ceev | Cov tsos mob xws li mob lub cev thiab kub taub hau |
| Tawv nqaij ntub dej | Mob taub hau hnyav nrog rau kub taub hau, xeev siab, thiab ntuav, lossis mob caj dab/nraub qaum |
| Kev tsis meej pem | Kev hloov pauv ntawm qhov muag pom kev |
Yog tias koj txhawj xeeb txog tej yam kev mob tshwm sim, nrog koj tus kws kho mob tham tam sim ntawd. Yog tias koj xav tias muaj kev lom los ntawm cov tshuaj, koj tuaj yeem hu rau Lub Chaw Qhia Txog Cov Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Hauv Tebchaws Colombo .
Yuav tsum tau kuaj ntshav dab tsi thaum lub sijhawm kho mob?
Koj tus kws kho mob yuav ua ntau qhov kev kuaj ntshav los saib xyuas koj txoj kev noj qab haus huv thiab koj cov lus teb rau cov tshuaj.
- Cov qe ntshav liab (RBC) thiab hemoglobin:Cov no raug kuaj xyuas tsis tu ncua hauv PNH. Qhov no pab kom pom tias koj teb li cas rau kev kho mob thiab txiav txim siab seb koj puas xav tau kev hloov ntshav.
- Cov roj hauv cov ntshav: Fabhalta yuav ua rau koj cov roj cholesterol thiab triglyceride nce ntxiv. Yog li ntawd, koj tus kws kho mob yuav pom zoo kom kuaj cov roj hauv cov ntshav ua ntej thiab thaum lub sijhawm kho mob.
Puas muaj teeb meem nrog lwm cov tshuaj?
Yog, qee cov tshuaj tuaj yeem cuam tshuam nrog Fabhalta. Qee cov tshuaj, xws li Rifampin, tuaj yeem txo qhov ua tau zoo ntawm Fabhalta. Tsis pom zoo kom noj Fabhalta nrog qee cov tshuaj, xws li Gemfibrozil.
Yog li ntawd, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj - suav nrog cov tshuaj uas kws kho mob sau ntawv kom noj, cov tshuaj uas yuav tsis tas yuav muaj ntawv qhia, cov vitamins, cov tshuaj ib txwm muaj, thiab txawm tias cov tshuaj ntxiv.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- PNH yog ib qho mob tsis tshua muaj uas lub cev lub cev tiv thaiv kab mob rhuav tshem cov qe ntshav liab vim tias lawv tsis muaj cov protein uas tiv thaiv lawv.
- Fabhalta yog ib hom tshuaj tshiab rau PNH uas ua haujlwm los ntawm kev tiv thaiv kev ua haujlwm tsis zoo hauv lub cev tiv thaiv kab mob thiab tiv thaiv cov qe ntshav liab.
- Ua ntej pib noj cov tshuaj no, yuav tsum tau txhaj tshuaj tiv thaiv kab mob xws li mob hlwb meningitis thiab mob ntsws (pneumonia).
- Yog tias koj muaj cov cim qhia tias muaj kev kis kab mob loj thaum lub sijhawm kho mob, xws li kub taub hau, mob taub hau hnyav, lossis tsis meej pem, nrhiav kev pab kho mob tam sim ntawd.
- Txawm tias koj cov tsos mob zoo dua los xij, tsis txhob tsum noj tshuaj yam tsis tau koj tus kws kho mob qhia.
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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