duschenova mišična distrofija
Pozdravljeni.
Sin Žiga ima DMD in prvi zadnjem pregledu pri nevrologinji so nam svetovali jemanje steroidov.
Malo sem se pozanimala in za tako bolezen v tujini jemljejo zdravilo pronizon, v Sloveniji pa ga jemljejo samo nekateri. Zanima me, če ima kateri od staršev otrok z isto ali pa podobno boleznijo kakšne izkušnje z jemanjem tega zdravila?
Hvala za odgovor.
Tinake,
najrbž imate v mislih prednizon?
To je je sintetični kortikosteroid, ki se uporablja pri zdravljenju različnih boleznih. zdravilo ima kar nekaj kratkoročnih kot tudi (lahko) dolgoročnih posledic.
Vas zanimajo izkušnje staršev s prednizonom v povezavi z DMD ali vsa zanimajo tudi izkušnje z jemanjem omenjenega zdravila v zvezi z drugimi boleznimi?
Tu je link do ene super (tuje) strani za starše otrok z mišično distrofijo: http://community.parentprojectmd.org/ Imajo tudi forum. Sicer je v ang, ampak je ogromno staršev katerih otroci jemljejo steroide, če malo vprašate za mnenja vam bodo zagotovo povedali o lastnih izkušnjah.
Pozdravljeni.
Zanimajo me predvsem izkušnje staršev otrok z DMD ali pa odraslih oseb, ki jemljejo to zdravilo.
Nevrologinja nam je svetovala, naj začnemo jemati po zdravilo prej, ker ima boljše učinke kot pa takrat, ko se bolezen že razvije. Na Soči pa so mi povedali, da naj bi jemanje tega zdravila upočasnilo bolezenski proces in zmanjšalo oziroma upočasnilo zaplet bolezni predvsem sprememb na srcu in pojav skolioze. Stranski učinki pa so predvsem debelost, osteoporoza in motnje razpoloženja.
Če povem po pravici se bojim prihodnosti. Žiga ima že sedaj motnje pozornosti, koncentracije in razpoloženja, kaj pa bo potem, če se odločimo jemati po zdravilo, pa ne vem.
Na tisti strani ki sem jo zapisala je celotna sekcija foruma posvečena samo zdravljenju s steroidi. Ogromno je informacij, če vas zanima nekaj točno določenega-se pravi izkušnje staršev-samo malo pobrskate po tisti sekciji, pa se bo našlo ogromno odgovorov. Lahko tudi odprete novo temo z enakim vprašanjem, medtem ko boste tu morda po dveh tednih dobili en odgovor, se jih bo tam zagotovo našlo več, saj je celotna stran skupnost staršev, ki imajo otroke z mišično distrofijo. Samo predlagam.
Odločitev boste morali sprejeti sami-steroidi res upočasnijo potek bolezni, vendar imajo ogromno stranskih učinkov. Odločiti se morate, ali so stranski učinki nekaj s čemer se boste lahko spoprijeli oziroma če je vse skupaj res vredno poskusa. Na tisti strani je okrog 80% otrok z DMD na steroidih(večina na deflazacort, ker ima manj stranskih učinkov, nekaj tudi na prednizonu). Kolikor sem brala, je večina staršev zadovoljnih-otroci so mobilni dosti dlje kot so pričakovali-stranski učinki so nekako 50-50. Pri nekaterih otrocih zelo izraziti, pri drugih niti ne. Jemanje zdravila lahko kadarkoli prekinete če bi bili stranski učinki res prehudi.
Žal ne poznam osebno nobenega otroka z DMD, niti njihovih staršev. Vse informacije ki jih imam so od staršev otrok z DMD ki sodelujejo na tistem forumu. V kolikor to sicer ni relevanten vzorec, se mi je na splošno iz prebranega zdelo, da imajo s steroidi kar dobre izkušnje. Je pa res, da jih ima večina otroke na deflazacortu, ki ima manj stranskih učinkov, ga je pa menda zelo težko dobiti. Je tudi kar nekaj staršev ki so prednizon zamenjali za deflazacort, predvsem zaradi vedenjskih težav, ki so se potem malo umirile. Ampak dvomim da se to pri nas da dobit(govorim na pamet, nimam pojma kako je s tem, samo domnevam), tako da je prednizon edina možnost. Deflazacort večinoma naročajo iz velike britanije ali kanade. Ne vem če to pri nas gre, lahko pa vprašate zdravnika.
Tu sem skopirala nekaj (pozitivnih in negativnih) mnenj staršev katerih otroci jemljejo steroide:
“But after looking at research documents I felt it best to give it a try then settled on Prednisone when we saw how difficult obtaining Deflazicort might turn out to be. Alexander has been on it for aprox. 2 years and there were behavior issues at first and they still crop up sometimes but we are managing through them. Sometimes he will lose his temper over nothing and exhibits frustration, but then his body is failing him when he wants to just be like everyone else. His classmates and teachers are all aware his infrequent outbursts are a side effect of not only the steriods but his condition. Everyone tries to ignore him when he does it and that works well.”
“To steroid or not to steroid is an agonizing decision. As far as I know there are no tests that can predict side affects. Originally, we were not going to use steroids. We began them a year and a half after his diagnosis (at age 6) because he was declining so much faster than we expected. We wanted to give him as much time to play and be a kid as possible. So, with a lot of trepidation we started them. You’ve probably read about the differences between prednizone and deflazacort. We went straight to deflazacort because of fewer side effects. Really, he has had very few and minor side effects physically and behaviorally. One thing we kept in the back of our minds, is that if the side affects were more than we expected, we could always discontinue the deflazacort.”
“My son is going on 15 years old and has been taking steroids since he was 5 years old. He started on a low dose at first every other day and then when he started to progress to a point when he could not get up completely from the floor, we went to every day. At this point, we started to notice changes but only in his face. Our son has never had any issues with behavior. Although at times he may get extremely frustrated and cries. He has never had any issues in school.Our doctor always told us “would you rather deal with the side effects, or would you like your child to walk as long as possible?” We always wanted our son to walk and remain mobile for as long as possible. He only just recently, 3 months ago, became completely wheelchair bound. Only now is he being taken down off steroids, at our request, and will most likely stay on a low dose of prednisone after this time.”
“We found Deflazacort to be fine. We did have some anger issues (which we had prior to steroids as well). I “fixed” those with Barleans FIsh Oil Supplement and possibly the green tea extract (that seems to have helped, not sure how, but maybe the caffeine). I think he is doing great, test results show it, he almost doubled his speeds, he runs super fast (that scares me as I’m always worried). We give lots of liquid calcium, magnesium and vitamin D to help his bones. He hasn’t had stunted growth yet due to steroids, but he has only been on them for a year and a few months”
“We started our son on Prednisone and it was absolutely horrid. It changed the personality of our son as well as his disposition. He ate like mad, and exhibited serious signs of ADHD. This is what we had to take into consideration – do we keep him on this horrid drug to extend his life – or get our wonderful child back and possibly shorted his life by offering no medications. We chose to try Deflazacort. He is perfectly back to himself and doing very well.”
(vir: http://community.parentprojectmd.org/forum/topics/no-steroids?id=1187424%3ATopic%3A57749&page=3#comments)
Ste povprašali na društvu distrofikov? Morda bi vas tam lahko povezali z drugimi družinami ki imajo otroke z DMD.
Draga Tinakre!
Tudi moj sin ima DMD. Smo na istem, kot vi. Zdaj je čas, da se odločimo za jemanje steroidov, pa kar ne vemo, kaj bi. Njegova nevrologinja, ki je trenutno odsotna, je rekla, da steroidi zamaknejo potek bolezni za približno 5 let. Ta, ki jo nadomešča, pa nam je na zadnjem pregledu povedala, da gre le za leto ali dve zamika. Če velja prva trditev, se nagibam k jemanju, sicer pa ne. Žal še ne vem, katera trditev bolj drži. Obe zdravnici sta znali povedati dobro in slabo o steroidih. Ko pa sem ju vprašala, kako bi se odločili, če bi šlo za njuna otroka, mi nista znali dati pravega odgovora, oziroma sta bili bolj proti, kot pa za. Sicer pa tudi sama opažam, da steroidi v tujini niso tak bavbav, kot pri nas.
Žal ti ne morem svetovati. Še sama ne vem, kako naj se odločim. Morda pa skupaj pridemo do rešitve.
LP, Katarina
Mislim da je čisto odvisno za koliko časa steroidi zamaknejo potek bolezni, ker tudi ta pri vsakem poteka čisto drugače. Nekateri so zelo dolgo mobilni, drugi ne. Mislim da je 5 let zamika že kar maksimum.
Sem pa drugače dobila podatek da je možno deflazacort (tisti steroid ki naj bi imel manj stranskih učinkov kot prednizon) dobiti kjerkoli, in sicer z receptom preko interneta. Točno od kod se naroča sicer ne vem, lahko se pa pozanimam.
Pri naročanju preko spleta bi vseeno svetovala previdnost.
Sicer pa je tako, če potrebnega zdravila ni moč dobiti pri nas, nam zdravniki tudi svetujejo, kje se ga da dobiti.