ʻO Enspryng lāua ʻo NMOSD: E aʻo e pili ana i kēia maʻi laha ʻole (Neuromyelitis Optica Spectrum Disorder)

Ua ʻike koke anei ʻoe i kahi loli i kou ʻike, ʻeha maka, a i ʻole ka mae a nāwaliwali paha i kou mau lālā? Hiki paha he mea ʻē aʻe. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi kūlana i ʻike pinepine ʻole ʻia ma ko mākou ʻāina, akā he mea nui loa ia e makaʻala. ʻO ia ka Neuromyelitis Optica Spectrum Disorder , a i ʻole NMOSD no ka pōkole. He maʻi autoimmune kēia e hoʻopilikia nui ana i kou mau maka a me ke kaula spinal.

He aha ka NMOSD? Pehea e hana ai ʻo Enspryng?

I ka ʻōlelo maʻalahi, ʻo NMOSD ka wā e hoʻomaka hewa ai ka ʻōnaehana pale ponoʻī o kou kino, ka ʻōnaehana e pale ai iā mākou mai ka maʻi, e hoʻouka i kāu mau hunaola olakino ponoʻī. ʻO ke kikoʻī, hoʻomaka kou kino e hana i nā antibodies e kūʻē i kahi protein kikoʻī i loko o kāu ʻōnaehana nerve i kapa ʻia ʻo 'aquaporin-4 (AQP4).'

ʻO kēia hoʻouka kaua ke kumu nui o ka mumū, a i ʻole ka mumū, a puni kou aʻalolo optic (ke aʻalolo e lawe ana i nā leka ma waena o kou maka a me kou lolo) a me ke kaula spinal. Ke hoʻomau nei kēia, hiki iā ia ke alakaʻi i ka nalowale o ka ʻike a me ka paʻakikī i ka hele wāwae.

ʻAʻohe lāʻau lapaʻau no NMOSD i kēia manawa. ʻO ke kumu nui o nā lāʻau lapaʻau ka hōʻemi ʻana i ka mumū, ka kaohi ʻana i nā hōʻailona , ​​a me ka pale ʻana i nā hoʻi hou ʻana.

ʻO kēia kahi e komo mai ai ʻo Enspryng . He lāʻau lapaʻau biologic hou ʻo Enspryng. Hiki i kēia lāʻau lapaʻau ke kōkua i ka pale ʻana i ka hoʻi hou ʻana mai o NMOSD, ʻoiai inā loaʻa iā ʻoe nā antibodies anti-AQP4 a mākou i kamaʻilio ai ma mua i loko o kou koko.

Hana ʻo Enspryng ma ke kāohi ʻana i kahi protein ʻē aʻe i loko o ko mākou kino i kapa ʻia ʻo "interleukin-6 (IL-6).` No ka mea, pili pū kēia protein i kapa ʻia ʻo IL-6 i ka mumū i hoʻokumu ʻia e nā antibodies anti-APQ4. No laila, ke kāohi ʻia ʻo IL-6, hoʻemi ʻia ka mumū, hoʻomalu ʻia nā hōʻailona, ​​a hiki ke hoʻemi ʻia ka maʻi.

Pehea e pono ai iaʻu ke hoʻohana i kēia lāʻau lapaʻau?

He inikini ʻili ʻia ka Enspryng. Hāʻawi pinepine ʻia ia ma ka ʻōpū lalo a i ʻole ka waena mua o ka ʻūhā.

• Pono e hāʻawi ʻia nā inikini mua ʻekolu i kēlā me kēia ʻelua pule.
• Ma hope o kēlā, pono ʻoe e pā i hoʻokahi manawa i ka mahina.

He mea nui loa ia e hoʻomanaʻo i nā lā kikoʻī e pono ai ʻoe e loaʻa i kēia mau inikini. E hoʻonohonoho i kahi mea hoʻomanaʻo ma kahi kalena a i ʻole ma kāu kelepona. Inā poina ʻoe i kahi inikini, pono ʻoe e kamaʻilio me kāu kauka e pili ana i ka mea e hana ai ma hope.

Mai hopohopo, e aʻo kāu kauka iā ʻoe pehea e hāʻawi ai iā ʻoe iho i kēia inikini, kahi e hāʻawi ai, a pehea e hoʻololi ai i kahi i kēlā me kēia manawa. E holoi mau i kou mau lima ma mua o ka hāʻawi ʻana i ka inikini.

Pehea e mālama ai i ka lāʻau lapaʻau?

Pono e mālama ʻia kēia lāʻau lapaʻau i loko o ka friji . Akā, mai waiho i loko o ka pahu hau. Eia kekahi, mai lūlū i ka lāʻau lapaʻau. E lawe i ka lāʻau lapaʻau i waho 30 mau minuke ma mua o ka hoʻokomo ʻana a e hoʻokuʻu i ka mahana o ka lumi. Mai hoʻomehana i ka lāʻau lapaʻau i loko o ka microwave a i ʻole me ka wai wela.

Pehea i noiʻi ʻia ai kēia lāʻau lapaʻau?

Ua hana ʻia ʻelua mau noiʻi nui e nānā i ka palekana a me ka pono o Enspryng. Hoʻohālikelike kēia i ka Enspryng me kahi placebo, kahi lāʻau lapaʻau ʻaʻohe mea hana. ʻO kēia ka manawa e hiki ai iā mākou ke ʻike maoli inā he pono maoli a he ʻino paha ka lāʻau.

Ua loaʻa i nā mea komo a pau i kēia haʻawina ka NMOSD, kahi moʻolelo o nā relapses, a me kahi helu ma waena o 0 a me 6.5 ma ka Expanded Disability Status Scale (EDSS), kahi unahi e ana i ko lākou pae o ke kīnā. (ʻO nā helu EDSS o 0 ke ʻano he ʻaʻohe kīnā, ʻo 6.5 ke ʻano he palena i ka hele wāwae.)

Ua nānā nui ka noiʻi i ka lōʻihi o ka manawa i hala ai ka hoʻi hou ʻana o ka maʻi. Eia kekahi, ua uku ʻia ka nānā ʻana i nā loli i ka `Visual Analog Scale (VAS)`, kahi e ana ai i ka ʻeha, a me ka `Functional Assessment of Chronic Illness Therapy (FACIT)`, kahi e ana ai i ka luhi.

He aha nā hopena o ka noiʻi?

Ma nā haʻawina ʻelua, ua emi iki ka hoʻihoʻi ʻana o nā maʻi e lawe ana iā Enspryng ma mua o ka poʻe e lawe ana i ka placebo. ʻO ke ʻano kēia, hiki iā Enspryng ke hōʻemi i kāu mau hōʻailona a me ka helu o nā hoʻihoʻi ʻana.

Eia nō naʻe, ʻaʻole i loaʻa ka pōmaikaʻi nui i nā maʻi me ka ʻole o nā antibodies anti-AQP4 mai Enspryng i hoʻohālikelike ʻia me ka placebo.

Pehea e mālama ai i nā hopena ʻaoʻao inā loaʻa lākou?

ʻO nā hopena ʻaoʻao maʻamau o kēia lāʻau lapaʻau, ʻo ia ka maʻi ihu a me ka ʻāʻī, ka ʻeha poʻo, ka luaʻi, ka ʻulaʻula o ka ʻili, ka gastritis, ka luhi, a me ka ʻeha ma nā lālā a i ʻole nā ​​​​​​hui. E haʻi i kāu kauka inā loaʻa iā ʻoe kekahi o kēia mau mea.

Nā maʻi

Aia kahi piʻi iki o ka pilikia o ka loaʻa ʻana o nā maʻi maʻamau a koʻikoʻi paha i ka wā e lawe ana iā Enspryng. E haʻi i kāu kauka inā e mālama ʻia ana ʻoe no kahi maʻi. Eia kekahi, e haʻi koke i kāu kauka inā loaʻa iā ʻoe kekahi o kēia mau hōʻailona:

• Anuanu, ʻeha kino, kuni, ʻeha puʻu, ʻū mau
• ʻUlaʻula a pehu paha ka ʻili
• ʻŌpū ʻeha, maʻi kahe
• Ke kuni nei i ka wā e mimi ai a i ʻole ka pinepine o ka mimi

ʻŌhūhū

E haʻi i kāu kauka inā loaʻa iā ʻoe kahi ʻulaʻula ʻili i ka wā e lawe ana i ka lāʻau lapaʻau. Inā pālahalaha koke ka ʻulaʻula ma kou kino a puni, e hele koke i ka lumi pilikia o ka haukapila (ETU).

ʻAʻole kēia wale nō nā hopena ʻaoʻao hiki ke loaʻa. Inā loaʻa iā ʻoe kekahi mau hōʻailona e hoʻopilikia nei iā ʻoe, e kamaʻilio me kāu kauka e pili ana iā lākou.

He aha nā hoʻokolohua e pono e hana ʻia ma mua o ka hoʻomaka ʻana o ka lāʻau lapaʻau a i ka wā o ka lāʻau lapaʻau?

Ma mua o kou hoʻomaka ʻana iā Enspryng, e hana kāu kauka i kekahi mau hoʻokolohua koko e nānā i ka hana o kou ake, ka maʻi hepatitis B, ka maʻi puʻupuʻu, a i ʻole nā ​​maʻi ʻē aʻe. Pono paha e hana hou ʻia kēia mau hoʻokolohua i ka wā o ka mālama ʻana. No laila he mea nui loa ka hana ʻana i kāu mau hoʻokolohua i ka manawa kūpono.

Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?

ʻAʻohe pilina nui i hōʻike ʻia ma waena o Enspryng a me ka meaʻai a i ʻole nā ​​​​lāʻau lapaʻau ʻē aʻe. Eia nō naʻe, he mea nui e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā lāʻau lapaʻau no nā kūlana ʻē aʻe, nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui). Hiki i kēia ke kōkua i ka pale ʻana i nā hopena ʻaoʻao i makemake ʻole ʻia.