Yu ɔ sɔmbɔdi na yu famili gɛt wan sik we nɔ kin bɔku we dɛn kɔl hATTR? Yu dɔktɔ dɔn gi yu wan vaysin we dɛn kɔl Inotersen as tritmɛnt fɔ di nyurolɔjik prɔblɛm dɛn we kin kɔmɔt frɔm am? So tide wi go tɔk klia wan bɔt dis mɛrɛsin, aw fɔ yuz am, ɛn di tin dɛn we wi nid fɔ tek tɛm wit. Bikɔs dis na mɛrɛsin we kɔmplikt smɔl, i rili impɔtant fɔ ɔndastand am gud gud wan.
Wetin na dis mɛrɛsin we dɛn kɔl Inotersen?
Fɔ tɔk am simpul wan, Inotersen na wan mɛrɛsin we dɛn kin yuz fɔ trit di nerve damej pan di wan dɛn we gɛt wan patikyula jɛnɛtik kɔndishɔn we dɛn kɔl hereditary transthyretin-mediated amyloidosis (hATTR) . Dɛn kin sɛl am ɔnda di brand nem Tegsedi.
Naw lɛ wi si wetin na dis kɔndishɔn we dɛn kɔl hATTR. Dis na sik wae nɔr kin bɔrku wae kin pas frɔm jɛnɛreshɔn to jɛnɛreshɔn tru jin dɛm. biכs fכ di abnכmal mכtεshכn dεm na wan protin we dεn kכl transtayrεtin, we de prodyuz na wi bכdi in liva, dis protin de kכlכp εn dכn na difrεn pat dεm na di bכdi, spεshal wan na di nεv sεstem. Dɛn dipɔsit ya (amyloid deposit) de pwɛl di nerv dɛm ɛn kin mek di limb dɛm nɔ de fil fayn, pen, wik, i nɔ kin izi fɔ waka, ɛn i kin afɛkt di at ɛn kidni dɛm bak.
So wetin di Inotersen vaysin de du na fɔ kɔntrol di prodakshɔn fɔ da abnɔmal protin de ɛn ridyus mɔ damej pan di nɛv dɛm. Dis nɔto mɛrɛsin fɔ di sik, bɔt i kin ɛp bɔku fɔ kɔntrol aw di sik de go bifo, dat na fɔ mek di sik wɔs.
Mɛmba se yu kin yuz dis mɛrɛsin bak fɔ ɔda mɛrɛsin dɛn lɛk aw yu dɔktɔ tɛl yu. So fala wetin yu dɔktɔ tɛl yu ɔltɛm.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Bifo yu bigin fɔ trit yu wit Inotersen, i impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri. Mek shɔ se yu tɛl dɛn bɔt:
- Kidni sik: If yu gɛt ɔ yu dɔn ɛva gɛt ɛni kidni sik.
- Blɔd prɔblɛm: If yu gɛt wan sik we de mek yu nɔ gɛt bɔku rɛd sɛl, wayt sɛl, ɔ pletlɛt na yu blɔd. Dis na impɔtant tin bikɔs dis mɛrɛsin kin afɛkt yu pletlɛt kɔnt.
- Alɛji: If yu dɔn gɛt alɛji fɔ Inotersen, ɛni ɔda mɛrɛsin, it, ɔ day.
- Bɛlɛ: If yu gɛt bɛlɛ, ɔ yu de op fɔ gɛt bɛlɛ insay di nɛks tɛm.
- Lakta: If yu na mama we de gi yu pikin in bɛlɛ.
Bay dis infɔmeshɔn, yu dɔktɔ go disayd if dis mɛrɛsin fayn fɔ yu ɛn us ɔda tin dɛn we yu fɔ tek tɛm wit we yu de trit yu.
Aw a fɔ yuz di mɛrɛsin?
Dis na injɛkshɔn ɔnda di skin. Bɔku tɛm, dɛn kin gi am wan tɛm insay di wik.
- Trenin: Yu dɔktɔ ɔ nɔs we tren go sho yu klia wan aw fɔ pripia dis vaysin ɛn aw fɔ injekt yusɛf na os. Nɔ wɔri, i rili izi wans yu dɔn yus to am.
- Fɔ fala di instrɔkshɔn dɛn: Tek di mɛrɛsin jɔs lɛk aw dɛn tɛl yu fɔ tek am, di rayt tɛm, ɛn nɔ ɛva tek am pas di mɔni we dɛn tɛl yu fɔ tek.
- Fɔ trowe nidul dɛn: Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti. Dɛn fɔ put dɛn na spɛshal kɔntena we gɛt shap tin dɛn. If yu nɔ gɛt wan, yu kin gɛt wan frɔm yu dɔktɔ ɔ ɔspitul.
- Ɔvados: If yu tink se yu dɔn tek bɔku mɛrɛsin, nɔ panik ɛn kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kɔlɔmbɔ Nashɔnal Ospital, ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
- If yu mis wan doz: If yu mis wan doz, tek am as yu mɛmba. Bɔt if i nɔ rich tu dez te yu tek di nɛks doz, skip di doz we yu mis. Jɔs tek di nɛks doz na di tɛm we dɛn dɔn sɛtul. Nɔ ɛva tek dabl doz.
Sɔm sayd ɛfɛkt dɛn we pɔsin kin gɛt we yu de tek di mɛrɛsin
Lɛk ɛni mɛrɛsin, Inotersen kin mek sɔm sayd ɛfɛkt. Sɔm pan dɛn tin ya kin siriɔs, so i impɔtant fɔ no bɔt dɛn.
| Sayd ɛfɛkt we pɔsin kin gɛt | Ficha dɛn we yu fɔ wach fɔ |
|---|---|
| If yu gɛt dɛn sik ya, go to yu dɔktɔ ɔ ETU wantɛm wantɛm. | |
| Alɛji Riakshɔn dɛn | Skin rash, it, swel na yu fes, lip ɔ tong, i nɔ izi fɔ blo. |
| Blɔd we nɔ de kɔmɔt fayn | Blak ɔ blɔd stɔl, rɛd ɔ dak brawn urine, vɔmit sɔntin we tan lɛk kɔfi grɔn, rɛd spat na di skin, blɔd we nɔ kɔmɔn frɔm di gam, nos, ɔ yay. |
| Di sayn dɛn we de sho se pɔsin gɛt strok | Yu kin chenj yu yay, yu kin kɔnfyus, i nɔ kin izi fɔ tɔk ɔ ɔndastand, yu ed kin at bad bad wan, yu fes kin swɛt ɔ wik wantɛm wantɛm, yu an ɔ yu leg kin at, yu kin gɛt prɔblɛm fɔ waka, yu ed kin tɔn. |
| Di sayn dɛm we de sho se di kidni dɔn pwɛl | I nɔ izi fɔ pis ɔ chenj di urine we de kɔmɔt. |
| Di sayn dɛm we de sho se di liva dɔn pwɛl | Dak yɔlɔ ɔ brawn urine, yu yay ɔ yu skin de yɔlɔ, yu de fil lɛk yu taya, yu gɛt fiva, yu de fil pen na di ɔp rayt say na yu bɛlɛ, yu de nɔs. |
| Tɛl yu dɔktɔ if dɛn tin ya de kɔntinyu ɔ if dɛn de mɔna yu. | |
| Kɔmɔn sayd ɛfɛkt dɛn | Ed pen, joyn pen, mɔsul pen, nɔs, vɔmit, taya, rɛd, it, ɔ pen na di say we dɛn injekt. |
Ɔda tin dɛm wae kin miks wit dis mɛrɛsin
Ɔda mɛrɛsin dɛn we yu kin tek kin intarakt wit Inotersen, we kin afɛkt di we aw i de wok ɔ di sayd ɛfɛkt dɛn we i kin gɛt. So, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek. Tek tɛm mɔ wit dɛn mɛrɛsin ya:
- Di tin dɛn we de mek blɔd tan: Na mɛrɛsin dɛn lɛk wɔfarin, apixaban, klopidogrel, ɛn aspirin. If yu tek dɛn tin ya wit Inotersen, dat kin mek yu gɛt mɔ blɔd.
- Di mɛrɛsin dɛn we de mek pɔsin fil pen (NSAID): Na mɛrɛsin dɛn lɛk ibuprofen ɛn naproxen. Dɛn tin ya kin afɛkt di kidni dɛn bak ɛn i kin mek di blɔd kɔmɔt mɔ ɛn mɔ.
- Ɔda mɛrɛsin dɛn we kin afɛkt di kidni dɛn na: sɔm antibayɔtik ɛn diuretik (mɛrɛsin dɛn we de mek di urine kɔmɔt mɔ).
- Vitamin A: Yu vaytamɛn A lɛvɛl kin go dɔŋ we yu de tek dis mɛrɛsin. So, i rili impɔtant fɔ gɛt inof vaytamɛn A.Tɔk to yu dɔktɔ bɔt di it ɛn vaytamɛn dɛn we yu de it, ɛn tek vaytamɛn A sɔpɔtmɛnt if nid de.
Dis list nɔ kin gɛt ɔl di intarakshɔn dɛn we pɔsin kin gɛt. So tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn, ɛbul mɛrɛsin dɛn, vaytamɛn dɛn, ɛn sɔpɔtmɛnt dɛn we yu de tek. Mek shɔ se yu tɛl yu dɔktɔ if yu de smok, drink rɔm, ɔ yuz ɔda drɔgs.
Mɛsej we dɛn kin kɛr go na os
- Inotersen na wan drɔg we dɛn kin yuz fɔ trit di nerve damej we wan patikyula jɛnɛtik kɔndishɔn we dɛn kɔl hATTR kin mek.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ bɔt ɔl yu mɛrɛsin (especially kidni ɛn blɔd) ɛn alɛji.
- Lan aw fɔ injekt di vaysin kɔrɛkt wan. Trowe di nidul ɛn sirinj dɛn we yu dɔn yuz fayn fayn wan.
- Go to dɔktɔ wantɛm wantɛm if yu gɛt ɛni siriɔs sayd ɛfɛkt, lɛk we yu de blɔd we nɔ kɔmɔn, sayn dɛn we de sho se yu gɛt strok, ɔ yu gɛt siriɔs alɛji.
- Dis mɛrɛsin na fɔ yu nɔmɔ. Nɔ sheb am wit ɛni ɔda pɔsin fɔ ɛni rizin.
- Kɔntakt yu dɔktɔ ɔltɛm ɛn atɛnd di tɛst ɛn apɔntinmɛnt dɛn we dɛn dɔn plan fɔ du.
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