Kodi nthawi zina mumamva ngati mulibe mphamvu, ndipo minofu yanu ndi yofooka kwambiri? Makamaka ngati chikope chimodzi kapena zonse ziwiri zagwa, nkhope yanu ikusintha, kapena mukuvutika kulankhula kapena kumeza? Izi zitha kukhala zizindikiro za matenda otchedwa Myasthenia Gravis . Ngakhale kuti vutoli ndi loopsa, tsopano pali mankhwala abwino kwambiri. Lero tikulankhula za chithandizo chatsopano komanso chopambana.
Kodi Myasthenia Gravis ndi chiyani kwenikweni?
Mwachidule, iyi ndi vuto lomwe chitetezo cha mthupi lanu chimaukira minofu yanu. Timatcha izi kuti ndi vuto la autoimmune.
Minofu imalandira chizindikiro kuchokera ku ubongo wathu pamalo pomwe mitsempha ndi maselo a minofu zimakumana. Malo olumikizirana awa amatchedwa kulumikizana kwa mitsempha. Apa, neurotransmitter yotchedwa acetylcholine imatumiza chizindikiro ku minofu, ndikunena kuti, "Chabwino, tsopano chitani."
Komabe, anthu ambiri omwe ali ndi myasthenia gravis amapanga ma antibodies omwe amaukira ma receptor omwe amalandira chizindikiro ichi cha acetylcholine. Ma antibodies amenewa amatchedwa ma antibodies a anti- acetylcholine receptor (AChR) . Chifukwa cha ma antibodies amenewa, minofu silandira chizindikiro kuchokera ku ubongo moyenera. Zotsatira zake zimakhala kufooka kwa minofu.
| Zizindikiro zodziwika bwino za myasthenia gravis | |
|---|---|
| Zikope zowerama | Kupindika kosalamulirika kwa zikope za diso limodzi kapena onse awiri. |
| Kusintha kwa nkhope | Kusintha kwa mawonekedwe akamwetulira kapena polankhula chifukwa cha kufooka kwa minofu ya nkhope, pakamwa, kapena nsagwada. |
| Kufooka m'miyendo | Kutaya mphamvu m'manja, miyendo, ndi zala. Kuvutika kunyamula zolemera ndi kuyenda. |
| Kuvuta kumeza | Kuvuta kumeza chakudya kapena chakumwa, kutsamwitsidwa pafupipafupi. |
| Kuvuta kulankhula | Kusintha kwa mawu ndi kusinthasintha kwa mawu polankhula. |
Chofunika ndichakuti si wodwala aliyense amene angakumane ndi zizindikiro zonsezi. Zizindikiro zimatha kusiyana malinga ndi kuopsa kwa matendawa.
Kodi Ultomiris (Ravulizumab) imagwira ntchito bwanji?
Palibe mankhwala a myasthenia gravis pakadali pano. Koma pali njira zambiri zothandiza zomwe zingathandize kuchepetsa zizindikiro ndikukhala ndi moyo wabwinobwino. Ultomiris ndi imodzi mwa njira zatsopanozi.
Ultomiris ndi antibody yapadera yomwe imatseka puloteni mu chitetezo chathu chamthupi chotchedwa C5 . Puloteni iyi ya C5 ndiyo imathandiza kuwononga minofu. Chifukwa chake Ultomiris ikailetsa, chitetezo chanu chamthupi chimasiya kuwononga maselo a minofu. Izi zikutanthauza kuti mankhwalawa amagwira ntchito pofika pachimake cha matendawa.
Kodi chithandizochi chimaperekedwa bwanji?
Mankhwalawa amaperekedwa kwa inu ngati njira yolowetsera m'mitsempha (IV infusion) monga saline. Mankhwalawa amaperekedwa kwa inu ndi dokotala kapena wogwira ntchito zachipatala wophunzitsidwa bwino kuchipatala kapena kuchipatala.
Kawirikawiri, mudzapatsidwa mlingo woyamba, kenako mudzapatsidwa mlingo wina patatha milungu iwiri. Pambuyo pake, mudzafunika kupitiriza kumwa mankhwalawa milungu isanu ndi itatu iliyonse . Komabe, dokotala wanu adzasankha nthawi yomwe mudzafunika kumwa mankhwalawa ndi mlingo womwe muyenera kumwa (nthawi zambiri kutengera kulemera kwa thupi lanu) .
Ndikofunikira kwambiri kumwa mankhwala anu pa nthawi yake. Ngati mwaphonya mlingo, imbani dokotala wanu pasadakhale .
Kodi mumadziwa bwanji ngati mankhwalawo akugwira ntchito?
Mudzayamba kumva minofu yanu ikulimba pang'onopang'ono. Mudzatha kuchita zinthu zanu za tsiku ndi tsiku mosavuta. Mu kafukufuku wazachipatala, zizindikiro zina zawoneka bwino pakatha sabata imodzi yokha.
Komabe, ngati simukumva kusiyana kulikonse, kapena ngati zizindikiro zanu zikukulirakulira, onetsetsani kuti mwalankhula ndi dokotala wanu . Iye akhozaSinthani mlingo, perekani mankhwala ena, kapena sinthani mankhwala ena.
Kodi zotsatirapo zake zingakhale zotani?
Monga mankhwala ena aliwonse, ingayambitse zotsatirapo zazing'ono. Zotsatirapo zofala kwambiri ndi izi:
- Kutupa m'mimba (kutsegula m'mimba)
- Matenda a mphuno kapena pakhosi
- Chikhure
- Zizindikiro zofala za chimfine
Kuti muchepetse kuvutika kwa m'mimba, idyani zakudya zopepuka monga mpunga, nthochi, ndi buledi. Imwani madzi ambiri. Chepetsani kumwa zakumwa zokhala ndi caffeine monga khofi. Ngati njira izi sizikuthandizani, kapena ngati zizindikiro monga kupweteka pakhosi kapena mphuno ikutuluka, lankhulani ndi dokotala wanu . Iye ndiye adzakukonzerani chithandizo chabwino kwambiri.
Kodi ndi zinthu ziti zapadera zomwe muyenera kudziwa? (Pulogalamu ya REMS)
Izi ndizofunikira kwambiri!
Ultomiris ndi mankhwala omwe amaperekedwa pansi pa pulogalamu yapadera yowongolera zoopsa (Risk Evaluation and Mitigation Strategy - REMS). Izi zili choncho chifukwa pali chiopsezo chochepa koma chachikulu chotenga kachilombo ka bakiteriya kotchedwa meningococcal, makamaka meningitis, komwe kumakhudza ubongo ndi msana.
Pachifukwa ichi, dokotala wanu adzakupatsani khadi lapadera la chitetezo cha wodwala .
- Imafotokoza momveka bwino zizindikiro za matendawa (monga kutentha thupi mwadzidzidzi, mutu, khosi lolimba, nseru, kusanza, komanso kumva kuwala).
- Amanenanso kuti ngati zizindikiro zotere zichitika, munthu ayenera kupita ku Emergency Treatment Unit (ETU) nthawi yomweyo.
- Ndikofunikira kusunga khadi ili nthawi zonse — panthawi ya chithandizo komanso mpaka miyezi 8 chithandizo chitatha.
Kuphatikiza apo, musanayambe kulandira chithandizo, dokotala wanu adzakufunsani ngati mwalandira katemera wa matenda a meningococcal. Ngati sichoncho, adzakulangizani kuti mupeze katemera kwa milungu iwiri musanayambe kulandira chithandizo.
Mavuto ndi mankhwala ena
Ndikofunikira kwambiri kuuza dokotala wanu ngati mukumwa mankhwala ena, makamaka:
- Chithandizo chochotsa plasma m'magazi (plasma exchange kapena plasmapheresis)
- Chithandizo cha Intravenous immunoglobulin (IVIg)
- Mankhwala oletsa mabakiteriya a Fc receptor (FcRn) a myasthenia gravis kwa ana obadwa kumene
Zinthu ngati izi zingachepetse mphamvu ya Ultomiris. Choncho uzani dokotala wanu za mankhwala onse omwe mumamwa, ngakhale mavitamini.
Uthenga Wopita Nawo Kunyumba
- Ultomiris (Ravulizumab) ndi mankhwala amakono komanso opambana kwa odwala omwe ali ndi myasthenia gravis (okhala ndi ma antibodies a AChR).
- Izi zimaletsa chitetezo cha mthupi kuti chisawononge minofu yake.
- Uwu ndi mankhwala operekedwa kudzera m'mitsempha milungu isanu ndi itatu iliyonse (mutatha kumwa mankhwala oyamba).
- Popeza pali chiopsezo cha matenda a meningococcal mukatenga mankhwalawa, ndikofunikira kulandira katemera ndi kusunga khadi lanu lotetezera wodwala nanu.
- Kambiranani momasuka ndi dokotala wanu za zotsatirapo zilizonse zoyipa, zizindikiro zomwe zikuipiraipira, kapena kugwiritsa ntchito mankhwala ena. Kulankhulana bwino pakati pa inu ndi dokotala wanu ndikofunikira kwambiri kuti chithandizo chanu chipambane.
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