Sɔntɛm yu nɔ bin dɔn yɛri bɔku bɔt dis mɛrɛsin we dɛn kɔl Miglustat. Di rizin fɔ dis na bikɔs na spɛshal mɛrɛsin we dɛn kin gi fɔ wan sik we nɔ kin apin so ɔltɛm. So tide wi go tɔk bɔt dis mɛrɛsin we dɛn kɔl Miglustat, ɛn di sik we i de trit we dɛn kɔl Gaucher. If dɛn dɔn gi yu ɔ pɔsin we yu sabi dis mɛrɛsin, dis infɔmeshɔn go rili impɔtant fɔ yu.
Us kayn mɛrɛsin na Miglustat? Wetin i de du?
Fɔ tɔk am simpul wan, Miglustat na mɛrɛsin we de ɛp fɔ mek di nɔmal lɛvɛl dɛn na wan ɛnzaym we de ɛp fɔ brok wan kayn fat na wi bɔdi. Dɛn kin yuz am spɛshal fɔ trit Tayp 1 Gaucher sik .
Naw yu go de wɔnda wetin na Gaucher sik. Lɛ wi ɔndastand dat smɔl. Gaucher sik na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. wetin kin apin insay dis na dat di aktiviti fכ glucocerebrosidase, wan εnzym we nid fכ brok dכn sכm kayn fεt dεm na wi bכdi fayn fayn wan (especially glucocerebroside), de rεdכks כ ivin nכ de kכmplit. Dɔn dɛn kayn fat ya kin de na difrɛn pat dɛn na di bɔdi, fɔ ɛgzampul, na di splin, di liva, ɛn di bon mɛro. Dis kin mek wi gɛt difrɛn wɛlbɔdi prɔblɛm dɛn. So, wetin di drɔg Miglustat de du na fɔ ridyus di fɔmɛshɔn fɔ dɛn ɛksɛs fat dɛn de na di bɔdi.
Dɛn kin sɛl dis mɛrɛsin ɔnda di brand nem Zavesca . Bɔt mɛmba se sɔntɛnde dɔktɔ dɛn kin yuz dis mɛrɛsin fɔ ɔda sik dɛn bak. So if yu gɛt ɛni kwɛstyɔn, i go fayn fɔ aks yu dɔktɔ ɔ fama.
Wetin na di tin dɛm we a nid fɔ tɛl mi dɔktɔ bifo a yuz dis mɛrɛsin?
Bifo yu bigin fɔ tek Miglustat, sɔm tin dɛn de we yu fɔ rili tɛl yu dɔktɔ. If yu nɔ tɔk bɔt dɛn tin ya, dat kin mek yu gɛt prɔblɛm dɛn we yu nɔ nid. So tɔk tru to yu dɔktɔ bɔt dɛn tin ya.
- If yu gɛt prɔblɛm wit yu nerve , we min se yu de bɔn, yu nɔ de fil fayn, yu de fil tingling na yu an ɛn fut dɛn.
- If yu gɛt sik na yu kidni .
- If yu gɛt alɛji fɔ Miglustat, ɛni ɔda mɛrɛsin, it, it day, ɔ prɛzɛvɛtiv, tɛl wi, ivin if na smɔl wan.
- If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ, dis rili impɔtant.
- If yu na mama we de gi pikin in bɛlɛ.
We di dɔktɔ dɔn no bɔt dɛn tin ya, i kin disayd if dis mɛrɛsin fayn fɔ yu ɔ nɔ fayn fɔ yu, ɛn aw fɔ tek tɛm yuz am.
Aw ɛksaktɔli a kin yuz dis mɛrɛsin?
I rili impɔtant fɔ no gud gud wan aw fɔ yuz dis mɛrɛsin. Fɔ fala di dɔktɔ in instrɔkshɔn ɛn di prɛskrishɔn lɛbl we di famasi gi.
- Dɛn fɔ tek dis mɛrɛsin bay mɔt wit wan glas wata.
- Tek yu mɛrɛsin ɔltɛm , lɛk aw yu dɔktɔ tɛl yu. Fɔ ɛgzampul, if na tri tɛm insay di de, tek am jɔs dɛn tɛm dɛn de.
- Nɔ ɛva tek mɔ mɛrɛsin pas aw yu dɔktɔ tɛl yu fɔ tek.
- Dɔn bak, nɔ stɔp fɔ tek di mɛrɛsin wantɛm wantɛm if yu dɔktɔ nɔ advays yu. If yu du dat, dat kin mek yu sik wɔs.
A fɔ gi dis mɛrɛsin to smɔl pikin dɛn?
If yu de gi dis mɛrɛsin to yɔŋ pikin dɛn, yu fɔ tɔk to dɔktɔ we de mɛn pikin dɛn bɔt am ɛn fala dɛn advays. Sɔntɛm dɛn nid spɛshal kia.
Wetin yu go du if yu tek bɔku mɛrɛsin? (Ovadosage) .
If yu tink se yu dɔn tek dis mɛrɛsin tumɔs, kɔl pɔyzin kɔntrol sɛnta we de nia yu ɔ ɔspitul imejensi rum wantɛm wantɛm. Nɔ west tɛm.
Impɔtant notis: Dɛn dɔn gi yu dis mɛrɛsin fɔ yu nɔmɔ. Nɔ gi am to ɔda pɔsin fɔ ɛni rizin , ilɛksɛf dɛn gɛt di sem sayn dɛn we yu gɛt.
Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?
Sɔntɛnde, yu kin mis wan doz fɔ mɛrɛsin. If dat apin, nɔ wɔri.
- Tek di doz we yu mis as yu mɛmba.
- Bɔt if i dɔn lɛf smɔl fɔ lɛ yu tek yu nɛks doz we yu mɛmba, skip di doz we yu mis ɛn jɔs tek di nɛks doz na di tɛm we yu dɔn sɛtul.
- Nɔ ɛva tek dɛbul ɔ ɛkstra doz fɔ mek di doz we yu mis. If yu du dat, dat kin mek yu gɛt bad bad tin dɛn.
Us ɔda intarakshɔn kin apin wit dis mɛrɛsin?
Sɔm mɛrɛsin dɛn de we kin mek yu gɛt prɔblɛm we yu tek am wit Miglustat. Dat min se, dɛn kin ɔl tu ridyus di effektiv we Miglustat de wok ɔ inkrisayz di sayd ɛfɛkt dɛm.
- Wan mɛrɛsin we kin miks wit dis na wan mɛrɛsin we dɛn kɔl imiglucerase .
Dis list nɔ de ɔlsay. So, tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn (di mɛrɛsin dɛn we dɛn kin gi yu ɛn di wan dɛn we yu nɔ kin gi yu), ɔyl dɛn, tin dɛn we yu kin yuz fɔ it, ɛn if yu de smok, drink rɔm, ɔ yuz drɔgs we nɔ rayt. Sɔm tin kin miks wit yu mɛrɛsin.
Wetin na de tin wae yu fɔ tek tɛm wit we yu de tek dis mɛrɛsin?
Sɔm tin dɛn de we yu fɔ tek tɛm wit we yu de tek Miglustat.
- Si yu dɔktɔ fɔ mek dɛn chɛk yu ɔltɛm. Dis go ɛp yu dɔktɔ fɔ si aw yu de du ɛn if yu mɛrɛsin de wok fayn.
- Yu kin nid bak fɔ mek dɛn du sɔm lab wok we yu de tek dis mɛrɛsin. Yu dɔktɔ go tɛl yu bɔt dis.
- Sɔm pipul dɛn kin gɛt dayarɛa we dɛn de tek dis mɛrɛsin. If dis apin, tɔk to yu dɔktɔ bɔt wetin yu go du fɔ am. I go gi yu di rayt advays.
Speshal instrɔkshɔn fɔ bɛlɛ ɛn man dɛn:
Dis na pat we rili impɔtant, mɔ fɔ uman ɛn man dɛn we de tink bɔt fɔ bigin famili.
- Uman: If yu de plan fɔ gɛt bɛlɛ, ɔ yu tink se yu go gɛt bɛlɛ, tɛl yu dɔktɔ wantɛm wantɛm. Risk de fɔ mek di pikin we nɔ bɔn yet gɛt siriɔs sayd ɛfɛkt. So aks yu dɔktɔ fɔ no mɔ bɔt dis.
- Man: Nɔ plan fɔ bɔn pikin we yu de tek dis mɛrɛsin ɛn fɔ 3 mɔnt afta yu dɔn stɔp di mɛrɛsin. Yuz fayn we fɔ mek uman nɔ gɛt bɛlɛ insay dis tɛm. I rili impɔtant fɔ tɔk to yu dɔktɔ bɔt dis bak.
Wetin na di sayd ɛfɛkt dɛm we dis mɛrɛsin kin gɛt?
Lɛk ɔl mɛrɛsin, Miglustat kin mek yu gɛt sayd ɛfɛkt, pan ɔl we nɔto ɔlman kin gɛt am. Sɔm sayd ɛfɛkt dɛn kin siriɔs ɛn yu fɔ tɛl yu dɔktɔ wantɛm wantɛm if yu notis dɛn. Bɔku tɛm, sɔm nɔ kin siriɔs, bɔt if dɛn kɔntinyu fɔ de, i go fayn fɔ tɛl yu dɔktɔ .
Di sayd ɛfɛkt dɛm we yu fɔ tɛl yu dɔktɔ wantɛm wantɛm:
If yu gɛt ɛni wan pan dɛn sik ya, tɛl yu dɔktɔ ɔr pɔsin we de kia fɔ yu wɛlbɔdi biznɛs ɛn nɔ de te.
- Bɔn, swɛt, tingling filin – mɔ na di limb dɛm.
- Chenj dεm na di mεnstral saykl.
- di chenj dεm we de apin na di vishכn – di vishכn de kam bכku, lεk fכ si insay tu pat.
- Tremor – Di shek we di limb dɛn nɔ kin kɔntrol.
- Blɔd ɔ brus we nɔ kɔmɔn – If yu gɛt brus we nɔ kɔmɔn na yu bɔdi, ɔ if blɔd nɔ stɔp ivin frɔm smɔl injuri.
Sayd ɛfɛkt dɛn we nɔ kin siriɔs, bɔt yu fɔ ripɔt to yu dɔktɔ if dɛn kɔntinyu fɔ de:
Bɔku tɛm, dɛn tin ya kin dɔn insay sɔm dez, bɔt if dɛn kɔntinyu fɔ de ɔ de mɔna yu, tɛl yu dɔktɔ .
- Rɔnbɛlɛ
- Diziz we pɔsin kin gɛt
- Ed de at
- I nɔ kin want fɔ it igen
- Lכw sεl dεm – Dis na sכmtin we de afekt man dεm.
- Nɔs, fɔ vɔmit
- Bɛlɛ at pwɛl , gas
- We yu de lɔs yu wet
Mɛmba se dis list nɔ kɔmplit. If yu notis ɛnitin we nɔ kɔmɔn we nɔ de na dis list, tɛl yu dɔktɔ bɔt am. Kɔntakt yu dɔktɔ fɔ gɛt advays bɔt di bad tin dɛn we kin apin to yu.
Aw yu kin kip dis mɛrɛsin?
I rili impɔtant bak fɔ kip di mɛrɛsin dɛn fayn fayn wan.
- Kip am usay smɔl pikin dɛn nɔ go ebul fɔ rich.
- Stɔr am na rum tɛmpracha, bitwin 15 ɛn 30 digri sɛlshiɔs (59 ɛn 86 digri F) . Nɔ put am na say we wam ɔ kol pasmak.
- Nɔ yuz mɛrɛsin dɛn we dɔn pas. Trowe dɛn fayn fayn wan.
Fɔ dɔn, sɔm impɔtant pɔynt dɛn (Take-Home Message) .
Okay, so wi op se yu gɛt gud ɔndastandin bɔt dis drɔg we dɛn kɔl Miglustat.
- Mɛmba se dis atikul na jɔs sɔmtin. I nɔ de kɔba ɔl di ditel dɛn.
- If yu gɛt ɛni ɔda kwɛstyɔn bɔt dis mɛrɛsin, duya nɔ fred fɔ aks yu dɔktɔ, fama, ɔ ɔda pɔsin we de kia fɔ yu wɛlbɔdi biznɛs.
- Bikɔs Gaucher sik na sik we nɔ kin bɔku ɛn Miglustat na wan patikyula mɛrɛsin, i rili impɔtant fɔ fala yu dɔktɔ in instrɔkshɔn.
- Tek yu mɛrɛsin kɔrɛkt wan ɛn di rayt tɛm. Yu fɔ no bɔt di bad tin dɛn we kin apin to yu. Si yu dɔktɔ pan di de dɛn we yu dɔn plan fɔ du.
Wi de wish yu gud wɛlbɔdi!
` Miglustat, Zavesca, Gaucher sik, ɛnzaym, mɛrɛsin sayd ɛfɛkt, prɛskrishɔn drɔgs, Gaucher sik
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