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my story (as short as possible...)
mild crohns. remicade (for severe crohns etc) -dr hoped for fast remission. nope. after 2 times remicade and 2 times humira..after 2nd time.. later- i went to take bath. felt stiff. maybe 5 minutes (?) later-i was in a pain i never knew before. like fire going through my insides and joint pain all over. i was in my later 30s by now + never had arthritis or similar.
ultimately--ended up on fentanyl.
dose: two 75 mcg patches (150 mcg) every other day.
--- BUT... before fentynal.. i was on many various pain meds. stronger and stronger. but i still couldn't function..so he finally put me on fentynal. i was scared of it.. but ended up staying on it.
i was also seeing a rheumatologist taking methylcortisone every month.
lastly- i was put on methotrexate.
i was seeing drs in nyc near my parents and chaned some early-but..finally-my rheumatologist and pain dr.
my rhematologist was NOT appy i was on 60-70(mcg?) methylcortisone
for about 4 years! he dropped it to 40. i was on it 4 more months but last 2 times (months) -i had manic attacks.. and they were scary bad. -finally i asked to get off- cold turkey. -yes. but had to keep in close touch and if i had any major symptoms-off to hospital. i got off. but ..my adrenal glad at first did not function. it took over a year to bit by bit function again. the fatigue was horrible. not even close to like being very tired. and i had more pain..but not bad..since i was on fentynal.
off methotrexate about a year and a half (?) after i got off the methylcortisone. also on pentasa for crons..but that i think is safe. and a few other things.
2 weeks ago is wen i found i had to get off fentynal. -i was glad..and not.
it allows me to live my life! but..i know ..it is full of dangers. also-
my rheumatologist did extra blood tests.. -to have positive ana is to be expected.. but (one?) was a test to check for lupus. ---it was positive. -he said it is likely the crons etc .. but.. still..we need to monitor. ...anyway:
so.. i take two 75 mcg fentynal patches.. my dr set te schedule..like wit many oters also having to get off it. plans for withdrawal much depended on the kind of patch..as well as ones illness...and more.
i get off 1/4 of 1 patch every 2 weeks.
1st lowering -i was shaking a bit.. and the dr right away said yes.. this is enough reason to put on the clonidine patch. shhakes stopped.
yesterday.. i dropped something glass..and all te bending. etc..plus other errands that day- by night i was in some pain..and a little shaky.
i am guessing it is just-i overdid it but--i was only a little lower in dose.. -and before -if i did the same.. i'd feel it--but not like that..and was almost always fine te next day. yesterday..te pain was worse by nigt..and still ere in morning to even a little now. and some shakes..but less.
... tonight i am set to take te next step in lowering.
tonight is te nigt set to take only half of 1 of the 2 patches. .. i admit..
i am worried the more i lower.. the worse the pain will get.
i hoped -as the dr did.. that i would be ..at least not even close to like back then. yes.. withdrawal will be hard..and get harder.
but..i am scared of going in to the hospital.. so will do all i can to be here.
any replies will mean a lot.,
i wrote a reply to melissa.. but also added my story too.. as i was confused about one ting w new posts.. i am new.. but also.. shaky..and -
well. really want to read oters comments..
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