Icyo Palovarotene ari cyo: Ibyo ikoreshwa, urugero rwo kuyifata, ingaruka zayo n'ibindi

Palovarotene ni umuti wandikirwa na muganga ufasha kugabanya imikurire idasanzwe y'amagufa n'imitsi mu bantu bafite indwara idasanzwe yitwa fibrodysplasia ossificans progressiva (FOP). Uyu muti unyobwa mu kanwa ukora ubu ukoma mu nkokora ibimenyetso bimwe na bimwe mu mubiri wawe bituma imitsi yoroshye nk'imitsi n'imitsi y'umubiri ihinduka amagufa.

Niba wowe cyangwa umuntu witaho yarandikiwe palovarotene, birashoboka ko ufite ibibazo byerekeye uko ikora n'icyo wakwitega. Ubu buyobozi buzagushyira mu bintu byose ukeneye kumenya mu magambo yoroshye kandi asobanutse.

Palovarotene ni iki?

Palovarotene ni umuti uvura indwara yihariye kandi ukora mu cyiciro cy'imiti yitwa retinoic acid receptor gamma agonists. Yagenewe by'umwihariko kuvura fibrodysplasia ossificans progressiva, indwara aho imitsi yoroshye y'umubiri wawe buhoro buhoro ihinduka amagufa.

Umuti uza mu buryo bwa capsule unyobwa mu kanwa. Ubu ni wo muti wemewe na FDA wonyine uvura FOP, bigatuma habaho iterambere rikomeye ku bantu babana n'iyi ndwara idasanzwe.

Palovarotene ikora yibanda ku mpamvu nyamukuru ya FOP ku rwego rw'uturemangingo. Ifasha gukumira imikurire idasanzwe y'amagufa iranga iyi ndwara, nubwo idashobora guhindura ibyangiritse byamaze kuba.

Palovarotene ikoreshwa mu iki?

Palovarotene yandikirwa by'umwihariko kuvura fibrodysplasia ossificans progressiva mu bantu bakuru n'abana bafite imyaka nibura 8 kandi bapima nibura ibiro 40. FOP ni indwara ya genetike idasanzwe cyane ikora ku bantu bagera kuri 1 kuri miliyoni 2 ku isi hose.

Iyi ndwara ituma sisitemu yo gusana umubiri wawe idakora neza. Iyo uhuye n'ihungabana, kubyimba, cyangwa ndetse n'imvune ntoya, umubiri wawe ukora amagufa n'urugingo rw'amagufa ahantu imitsi yoroshye ikwiye kuba iri. Nyuma y'igihe, ibi bituma gutakaza ubushobozi bwo kugenda buhoro buhoro uko ingingo zihuza.

Uyu muti ni ingenzi cyane mu gihe cyo "kurwara cyane" - ibihe aho amagufa mashya akora cyane. Muri ibyo bihe, muganga wawe ashobora kongera urugero rwawe kugira ngo afashe kugabanya urugero rw'amagufa mashya akura.

Palovarotene ikora ite?

Palovarotene ikora ibyara inzira zidasanzwe za selile zitera amagufa adasanzwe n'imikurire y'amagufa. Mu bantu barwaye FOP, ihinduka rya genetike rituma selile zihabwa ibimenyetso bitari byo bibwira imyenda yoroshye guhinduka amagufa.

Uyu muti ugamije kwakira aside ya retinoic muri selile zawe, ibi bifasha gusubiza imyitwarire ya selile isanzwe. Tekereza nk'ukuntu bifasha "kugabanya ijwi" ku bimenyetso bitera amagufa adakwiye.

Ibi bifatwa nk'umuti ukomeye wifashisha ibintu byihariye. Nubwo bishobora gutinda cyane iterambere ry'indwara, bisaba gukurikiranwa neza bitewe n'ingaruka zishobora kuba zifite kandi bikaba bisaba urugero ruzwi.

Nkwiriye gufata Palovarotene nte?

Fata palovarotene nk'uko muganga wawe abitegeka, akenshi rimwe ku munsi hamwe n'ibiryo. Kuyifata hamwe n'ifunguro bifasha umubiri wawe gukurura umuti neza kandi bishobora kugabanya indwara zo mu gifu.

Mimina ibinini byose hamwe n'ikirahure cyuzuye cy'amazi. Ntukavunagure, utahe cyangwa ufungure ibinini, kuko ibi bishobora kugira ingaruka ku buryo umuti ukora mu mubiri wawe.

Muganga wawe ashobora gutangira urugero ruto hanyuma akaruzamura buhoro buhoro bitewe n'uko witwara. Mu gihe cyo kurwara cyane, ushobora gukenera gufata urugero rwo hejuru mu gihe gito, hanyuma ugasubira ku rugero rwawe rwo kubungabunga.

Gerageza gufata umuti wawe mu gihe kimwe buri munsi kugira ngo ugumane urwego ruzigama mu mubiri wawe. Niba ukunda kugira ibibazo byo mu gifu, tekereza kuwufata hamwe n'ifunguro rikomeye aho kuba ifunguro ryoroshye.

Nkwiriye gufata Palovarotene igihe kingana iki?

Palovarotene akenshi ni imiti ikoreshwa igihe kirekire uzakomeza gukoresha igihe cyose ifasha mu guhangana na FOP yawe. Kubera ko iyi ari indwara ihoraho, abantu benshi bafata imiti itagira iherezo.

Muganga wawe azajya akurikirana iterambere ryawe buri gihe kandi ahindure gahunda yawe yo kuvurwa uko bikwiye. Abantu bamwe bashobora gukenera guhindura urugero rw'imiti bafata uko igihe kigenda, mu gihe abandi bashobora gukomeza gufata urugero rumwe rw'imiti igihe kirekire.

Mugihe cyo kwiyongera kw'indwara, ushobora gufata imiti myinshi mu byumweru byinshi cyangwa amezi, hanyuma ugasubira ku rugero rwo gukomeza. Itsinda ryawe ry'ubuzima rizabigufashamo muri izi mpinduka zishingiye ku bimenyetso byawe byihariye n'ibikorwa by'indwara.

Ni izihe ngaruka ziterwa na Palovarotene?

Kimwe n'imiti yose, palovarotene ishobora gutera ingaruka, nubwo atari buri wese uzibona. Kumva icyo ugomba kwitondera birashobora kugufasha gucunga imiti yawe neza.

Ingaruka zisanzwe ushobora guhura nazo zirimo uruhu rumeze nk'urukakaye, umusatsi ugabanuka, no guhinduka kw'inzara zawe. Izi ngaruka zifitanye isano n'uburyo imiti igira ingaruka ku mikurire y'uturemangingo kandi mubisanzwe birashobora gucungwa neza no kwitabwaho neza.

Dore ingaruka zikunze kugaragara abantu bavuga:

• Uruhu rumeze nk'urukakaye n'iminwa
• Umusatsi ugabanuka cyangwa ugatakara
• Guhinduka kw'inzara cyangwa gucikagurika
• Umutwe
• Kugira umunaniro
• Kubabara imitsi
• Kugabanya ubushake bwo kurya
• Isesemi

Izi ngaruka zisanzwe akenshi zinoza uko umubiri wawe wimenyereza imiti. Itsinda ryawe ry'ubuzima rishobora gutanga ingamba zo gufasha gucunga ibi bimenyetso.

Abantu bamwe bashobora guhura n'ingaruka zikomeye zisaba ubufasha bwihuse bw'abaganga. Nubwo ibi bidakunze kubaho, ni ngombwa kubimenya.

Vugana na muganga wawe ako kanya niba uhuye n'ikimenyetso icyo aricyo cyose muri ibi bimenyetso bikomeye:

• Kugira agahinda gakabije cyangwa impinduka mu myifatire
• Kugira ibitekerezo byo kwigirira nabi
• Kubabara umutwe cyane hamwe n'impinduka mu mbono
• Kuruka bidahagarara
• Ibimenyetso by'ibibazo by'umwijima (uruhu cyangwa amaso byenda guhinduka umuhondo)
• Kubabara amagufa cyane
• Gushiramo amaraso bidasanzwe cyangwa gukomereka

Izi ngaruka zikomeye ni gake zibaho, ariko kumenya hakiri kare no kuvurwa ni ngombwa ku buzima bwawe n'imibereho myiza.

Ninde utagomba gufata Palovarotene?

Palovarotene ntabwo ikwiriye kuri buri wese, kandi ibintu bimwe na bimwe bituma bidatekanye gukoreshwa. Muganga wawe azasuzuma neza amateka yawe y'ubuzima mbere yo kugushyiriraho uyu muti.

Ntabwo ugomba gufata palovarotene niba utwite cyangwa uteganya gutwita, kuko bishobora gutera ubumuga bukomeye ku mwana. Abagore bafite imyaka yo kubyara bagomba gukoresha uburyo bwo kuboneza urubyaro bukora neza mugihe bavurwa no mumwaka umwe nibura nyuma yo guhagarika imiti.

Abantu bafite ibibazo by'ubuzima runaka ntibashobora gufata palovarotene mu buryo butekanye. Muganga wawe azatekereza ibi bintu mugihe afata icyemezo niba uyu muti ukwiriye kuri wowe:

• Indwara ikomeye y'umwijima
• Amateka yo kugira agahinda gakabije cyangwa ibitekerezo byo kwiyahura
• Ubumara bwa Vitamin A
• Indwara ikomeye y'impyiko
• Uburwayi runaka bwo gushiramo amaraso
• Allergies ku miti ya retinoid

Abana bari munsi y'imyaka 8 cyangwa abapima ibiro biri munsi ya 40 ntibagomba gufata uyu muti, kuko umutekano n'imikorere byayo bitarashyirwaho muri iyi mibare.

Amazina y'ubwoko bwa Palovarotene

Palovarotene iboneka munsi y'izina ry'ubwoko rya Sohonos muri Leta Zunze Ubumwe z'Amerika. Ubu nicyo gice kimwe cyonyine cy'uyu muti kiboneka ku isoko.

Uyu muti ushobora kugira amazina y'ubwoko butandukanye mu bindi bihugu, ariko Sohonos nicyo gice cy'ibanze uzahura nacyo mubikorwa byinshi by'ubuvuzi.

Buri gihe koresha ubwoko nyabwo n'imiti yategetswe na muganga wawe, kuko imiti itandukanye ishobora kugira ubushobozi butandukanye bwo gukora cyangwa imikorere.

Izindi nzira zo kuvura Palovarotene

Kugeza ubu, nta zindi nzira zihari zo kuvura FOP zikoresha palovarotene. Uyu muti niwo wa mbere kandi wenyine wemewe na FDA uvura iyi ndwara idasanzwe.

Mbere y'uko palovarotene iboneka, kuvura FOP byibanze ku kwita ku murwayi no kugabanya ibimenyetso. Abaganga bamwe baracyakoresha imiti itagenewe uwo murwayi cyangwa imiti igeragezwa mu bihe bimwe na bimwe.

Niba utabasha gufata palovarotene kubera ingaruka zayo cyangwa izindi mpamvu z'ubuvuzi, muganga wawe azakorana nawe kugira ngo akore gahunda yuzuye yo kuvura irimo gukora imyitozo ngororamubiri, kugabanya ububabare, n'izindi nzira zo kuvura zifasha.

Ubushakashatsi ku miti mishya ya FOP burakomeje, kandi igeragezwa ryo kuvura rishobora gufasha abarwayi bamwe kubona imiti igeragezwa.

Ese Palovarotene iruta izindi nzira zo kuvura?

Kubera ko palovarotene ari wo muti wemewe gusa uvura FOP, kuyigereranya n'izindi nzira zo kuvura biragoye. Ariko, igaragaza iterambere rikomeye mu kwita ku barwayi ba FOP.

Mbere ya palovarotene, uburyo bwo kuvura bwari bugufi ku kwita ku murwayi, gukora imyitozo ngororamubiri, n'imiti yo kugabanya ibimenyetso nk'ububabare n'uburwayi. Nubwo ubu buryo bukomeje kuba ingenzi, ntibuvura indwara yihishe.

Palovarotene itanga uburyo bwa mbere bugamije kugabanya ikwirakwira ry'indwara. Ubushakashatsi bwakozwe bwerekanye ko bushobora kugabanya imikoranire y'amagufa mashya n'imvubura, cyane cyane mu gihe cy'uburwayi.

Uyu muti ukora neza nk'igice cy'uburyo bwuzuye bwo kuvura burimo izindi nzira zo kuvura zifasha. Itsinda ry'abaganga bazagufasha gusobanukirwa uko palovarotene ijyana n'uburyo bwawe bwose bwo kuvura.

Ibikunze kubazwa kuri Palovarotene

Ese Palovarotene irakwiriye abantu bafite izindi ndwara?

Palovarotene irashobora gukoreshwa neza ku bantu benshi bafite izindi ndwara, ariko bisaba gukurikiranwa neza. Muganga wawe azasuzuma amateka yawe yose y'ubuzima n'imiti ukoresha ubu kugirango amenye niba bikwiriye kuri wowe.

Abantu bafite ibibazo by'umwijima, indwara z'impyiko, cyangwa umubabaro bashobora gukenera gukurikiranwa by'umwihariko mugihe bakoresha palovarotene. Itsinda ryawe ry'ubuzima rizagena gahunda yawe yo kuvura n'igihe cyo gukurikirana bitewe n'ibyo ukeneye.

Buri gihe menyesha muganga wawe ibijyanye n'indwara zawe zose n'imiti ukoresha mbere yo gutangira gukoresha palovarotene. Ibi bifasha kumenya uburyo bwo kuvura bwizewe kandi bwiza.

Nigute nzakora niba nanyweye palovarotene nyinshi bitunguranye?

Niba unyweye palovarotene nyinshi bitunguranye kuruta uko byategetswe, vugana na muganga wawe cyangwa ikigo gishinzwe kugenzura uburozi ako kanya. Ntukegere kugirango urebe niba ibimenyetso bigaragara, kuko ibikorwa byihuse bifite akamaro.

Kunywa palovarotene nyinshi bishobora kongera ibyago byo kugira ingaruka zikomeye, harimo ibimenyetso by'uburozi bwa vitamine A nk'umutwe ukabije, isesemi, n'imihindagurikire y'ubureba.

Kora urutonde rw'imiti unywa kandi ukoreshe igikoresho cyo gutegura imiti niba bifasha. Niba utazi neza niba wanyweye umuti wawe wa buri munsi, mubisanzwe birizewe gusiba uwo munsi kuruta gushyira mu kaga kunywa imiti ibiri.

Nigute nzakora niba ntasibye urugero rwa palovarotene?

Niba usibye urugero rwa palovarotene, unywe ako kanya wibuka, keretse igihe kigeze cyo gufata urugero rwawe rukurikira. Muricyo gihe, siba urugero wasibye ukomeze gahunda yawe isanzwe.

Ntunywe imiti ibiri icyarimwe kugirango usimbure urugero wasibye, kuko ibi bishobora kongera ibyago byo kugira ingaruka zikomeye. Niba ukunda kwibagirwa imiti, tekereza gushyiraho ibyibutso kuri terefone cyangwa ukoreshe porogaramu yo gukurikirana imiti.

Niba usibye urugero rwinshi cyangwa ufite ibibazo bijyanye na gahunda yawe yo kunywa imiti, vugana n'umuganga wawe kugirango akuyobore uburyo bwo gusubira mu nzira neza.

Nshobora guhagarika ryari kunywa palovarotene?

Ugomba guhagarika gufata palovarotene gusa uyobowe na muganga wawe. Kubera ko FOP ari indwara ihoraho, abantu benshi bakeneye kuvurwa igihe kirekire kugira ngo bagumane inyungu.

Muganga wawe ashobora kugusaba guhagarika imiti niba ubonye ingaruka zikomeye zitashobora gucungwa, cyangwa niba uburwayi bwawe buhinduka mu buryo butuma imiti itagira akamaro.

Niba utekereza guhagarika palovarotene kubera ingaruka ziterwa n'imiti, banza uvugane n'ikipe yawe y'ubuzima. Bashobora guhindura urugero rw'imiti yawe cyangwa gutanga ubufasha bwiyongera kugira ngo bagufashe gukomeza kuvurwa neza.

Nshobora gufata izindi miti hamwe na Palovarotene?

Imiti imwe n'imwe irashobora gukururana na palovarotene, bityo ni ngombwa kubwira muganga wawe ibyo ufata byose, harimo imiti yandikwa na muganga, imiti igurishwa ku isoko, n'ibyongerera imiti.

Ubusanzwe ugomba kwirinda ibyongerera imiti ya vitamine A mugihe ufata palovarotene, kuko guhuza ibyo bishobora kongera ibyago byo guhumana kwa vitamine A. Muganga wawe ashobora kandi guhindura urugero rw'indi miti imwe n'imwe.

Buri gihe banza uvugane n'umuganga wawe mbere yo gutangira imiti mishya cyangwa ibyongerera imiti mugihe ufata palovarotene. Ibi bifasha kwirinda imikoranire ishobora guteza akaga kandi bigashimangira ko imiti yawe igumana umutekano kandi ikora neza.