Flaring from prednisolone..

[sweetangel2080]

Hi all
This summer tried alternative meds and taking away all the meds I had that didn't help...
it worked well in that my symptoms got better painwise and constant urge wise so was off meds for a good 7 weeks or so

however frequency was still playing up and low capacity (100ml) so doc decided prednisolone for a month starting 30mg and titrating down to 20, 10, 5mg would give my bladder a boost to get things under control..

week 1 was okay, niggling bladder feelings started coming back , pain back sometimes, frequency up a bit..
week 2 now and am flaring awfully

pain is back with a vengeance in that can hardly move, need my heat pad on full, urethral area is burning, bowels seem to be playing up and causing bladder to get worse (upset stomach it seems like) and the constant urgency and frequency and not having hardly any output each time

urghhhh

anyone else been on this??

i can't come off them straight away, have to titrate down so down to 15mg today and 10mg friday...

but from what i read, prednisolone should help me not make me worse???

i feel AWFUL. esp. as things were a little calmer over the last month

i can't attribute it to any other meds and don't want to go back on the others yet as then if this med does work, won't be able to tell.#

all my old meds didn't help before anyway so no point taking them to help me now and don't know what to do...

guess have to wait it out and then go back on elmiron if things dont calm down

urghhhhhhhhh, i have so little med options left...tried everything.... just steroids was an experimental thing to get my bladder under control...

sorry i just needed to vent and get some support
have been away from the boards for so long as was away having treatment and looking forward to things looking up

and now back to square 1

i just want to LIVE a life...like i know all of you can understand that

i am 26 and cannot work, cannot do anything much at all due to this IC over the last year.
over the summer, i was finally not housebound and bedbound anylonger

still had bad IC but was looking to do a small job, could go do errands, shopping, little things when my ic wasn't playing up...but small things that made me feel alive rather than sitting in bed with heating pad, not being able to move at all....

i hope either the prednisolone helps or things calm down when off it

it can just get me down sometimes....
people around you are just like don;t worry, u have no disability or anything but all around i see people doing daily stuff, work, shopping, going out to eat.....and i think I used to take all this for granted as when I go anywhere am always flaring and looking for the loos or can't wait to get back to heat pad and my house and ic friendly food rather than sitting in pain, holding on to go to the loo, not eating or drinking much at gatherings or family occasions as foods not good for IC..

urghh....IC is hard.......even harder for those of us who don't respond to meds...

[OrlandoP]

Hi all
This summer tried alternative meds and taking away all the meds I had that didn't help...
it worked well in that my symptoms got better painwise and constant urge wise so was off meds for a good 7 weeks or so

however frequency was still playing up and low capacity (100ml) so doc decided prednisolone for a month starting 30mg and titrating down to 20, 10, 5mg would give my bladder a boost to get things under control..

week 1 was okay, niggling bladder feelings started coming back , pain back sometimes, frequency up a bit..
week 2 now and am flaring awfully

pain is back with a vengeance in that can hardly move, need my heat pad on full, urethral area is burning, bowels seem to be playing up and causing bladder to get worse (upset stomach it seems like) and the constant urgency and frequency and not having hardly any output each time

urghhhh

anyone else been on this??

i can't come off them straight away, have to titrate down so down to 15mg today and 10mg friday...

but from what i read, prednisolone should help me not make me worse???

i feel AWFUL. esp. as things were a little calmer over the last month

i can't attribute it to any other meds and don't want to go back on the others yet as then if this med does work, won't be able to tell.#

all my old meds didn't help before anyway so no point taking them to help me now and don't know what to do...

guess have to wait it out and then go back on elmiron if things dont calm down

urghhhhhhhhh, i have so little med options left...tried everything.... just steroids was an experimental thing to get my bladder under control...

sorry i just needed to vent and get some support
have been away from the boards for so long as was away having treatment and looking forward to things looking up

and now back to square 1

i just want to LIVE a life...like i know all of you can understand that

i am 26 and cannot work, cannot do anything much at all due to this IC over the last year.
over the summer, i was finally not housebound and bedbound anylonger

still had bad IC but was looking to do a small job, could go do errands, shopping, little things when my ic wasn't playing up...but small things that made me feel alive rather than sitting in bed with heating pad, not being able to move at all....

i hope either the prednisolone helps or things calm down when off it

it can just get me down sometimes....
people around you are just like don;t worry, u have no disability or anything but all around i see people doing daily stuff, work, shopping, going out to eat.....and i think I used to take all this for granted as when I go anywhere am always flaring and looking for the loos or can't wait to get back to heat pad and my house and ic friendly food rather than sitting in pain, holding on to go to the loo, not eating or drinking much at gatherings or family occasions as foods not good for IC..

urghh....IC is hard.......even harder for those of us who don't respond to meds...

The only thing I can offer today, which I offer with all my heart, is understanding. Today, I have to start teaching (adjunct), and have millions of hours of work, consulting, and actually some fun stuff like art exhibitions which don't seem so fun because I'm in so much pain.

When I'm flaring, which is 5 months and counting, all I can think about is IC. Tomorrow, I go to the OBgyn for my annual, and am going to ask about a few more options, but I've been drug resistant so far.

One thing I haven't tried which some folks seem to have good luck with is Topamax. I've also been reading about the anti-malarial drugs, but freak out when I read about all the things they can do to your eyes (I'm an artist, so that matters a lot!)

[leelee88]

Oh Goodness, I had one of the worst experience with predisone<sp? steroid injection. About 2 hours after i got it. I went to pee and it swelled everything up and burned like someone had poured gas on me and set me on fire. I couldn't get out of bed for 2 weeks. I couldn't even walk it was so bad..This was 7 years ago I was dx was Vulvodynia right after that.. It was truly a nightmare. Now when the nurces ask if I am allergic to anything, that is the first thing I put down..They look at me funny..I say dont ask just trust me...

[leelee88]

Oh im sorry just thinking about that exp brought back horid thoughts.. I wanted to say.. I hope you start feeling better soon.. It sure seems you are going through a rough time right now.. My prayers and thoughts will be with you..:pray: ((((hugs))))

[sandymarie]

I had totally forgotten until your post this morning. My daughter has started it for a cold and she is flaring and I forgot that it did me the same way. I got a pain shot once with nubane and predisone and within 35 to 45 minutes I was burning and in pain like I had never been before. It sounds weird that a pain shot would run you crazy with pain, but I knew within a short time that we did not agree. It was the last of that type of meds for pain that I have ever had since. I hope you feel better soon.

JJ:pray: