New here,

[mandy]

new here,

Join Date: Feb 2009
Posts: 1

new here
hi, i have just joined today so i dont feel so alone with this disease.
I am 40 and have had crohns/colitis for 20 years although the doctors cant seem to decide which one i have!
I have just got over a recent bout of it and am on pred which i am slowly coming off, also on ascacol and imuran for the last 3 months, i have been getting better until last week and as i reached the golden no. of 5mgs pred my symptoms have come back, pain in the right side, cramps after eating, sore mouth , etc.
i am wonering if it the cd coming back or if its the body reacting to he tapering of preds.
Doctors are usless and my hospital consultant cant see me until april, am still waiting for results of biospsy which were taken in december!!!!
Does anybody have an ideas or suggestions.
thanks

 

[My Butt Hurts]

Hi Mandy - welcome to the forum!
I would call every day about your biopsies, they shoudln't take that long to give you an answer on those.
How fast did you taper off the pred? Sometimes people find they need to ramp back up to 20 mg (with Dr. permission) or so for a while until they feel really good, and then taper very very slowly.

 

[Agent X20]

Hi Mandy
Welcome to the forum
I'm also on Asacol and Imuran. The Imuran could take up to three months to start working properly. Over the long term it's made quite a difference for me, but it takes a while to get going

 

[bethyd78]

Hi I'm Beth I have been sick for years with belly pain drs couldn't decide what was
wrong they thought either uc or cd. I just wanted to tell you there is a promethes
test I'm not sure of spelling that gives you a definitive diagnosis. Well I have Cd
and have been on pentasa for probably 12 years. I tried entocort and prednisone
but it made me totally crazy. I have been told there is absolutely no reason for this belly pain I'm having I have been told I am addicted to pain meds and every other thing in the world. Still hanging in there.

 

[mandy]

Hi, my butt herts, agentx20, thanks for the welcome.
I have emailed my consultant and he wrote back and said there was a back log at the lab and thats why my test results are taking so long, but i find it hard to believe that it would take over 2 months!!!
He also thinks it coulod be colitis but i have all the symptons of crohns and was told it was crohns the last time i had a really back attack and was in hospital, so dont know what to think now.
I was put on imuran as i had become steriod dependent and could get past 20mg without being ill but have managed to get to 5mg but gone back to 6mg as i was feeling bad again and am waiting to see if that settels it before i go down again. Cant wait to be off pred, i put on loads of weight, my hair fell out, my fingers and face and feet would swell up by the end of the day and i didnt feel right, very confused and found it hard to get through the day, but now i am coming off them i feel better except this little flare up i am getting now.This has been going on this last may, getting fed up with now:ybatty:

 

[jamie2462]

Hey mandy,

How did you go from 5 mg to 6 mg? Are you breaking your pills tiny or something??
My doctor said if i started to get the flare up again like you seem to be then to go back up one pill *Mine are 5mg pills which is why I was asking. Not being smart.*

for a week and then after a week when you go to taper, taper down half a pill instead of a whole one and try that..and if it still didnt work...stay at the higher amount and contact my GI.(break those lil suckers in half...but they are so small I was sitting here trying to imagine breaking them into 4 or 5 pieces. You see my confusion on my end. *)

Anyhooo thats what my doc said to do...just relayin his message..he kept me from dying so I will do anything he says after the other bunch of "useless people" that were trying to "help"me at the ER. lol.

 

[mandy]

hi jamie, my doctor gave me some 1mg preds to make it easier to taper thats how i have gone upto 6mg but its not working, feel really ill again so last night went back upto 10mg to see if that helps and waiting for idiot doctor to phone and see what they think, not they have done any good so far!!
Its such a shame cos i was on my way down and went through all the pain of reducing, now it feels like back to square one without any help from the docs.
:depressed:

 

[kello82]

jamie--lol they come in 1 mg tablets too, for if youre having a really rough time tapering.

welcome to the forum mandy!
sorry to hear that youre having so much trouble, i went through similar nightmares with the pred. it was really really hard for my body to cope with the withdrawal.
i hope that youre docs get their act together and get you a different treatment plan soon. maybe then you can get of the steroids

 

[mandy]

kello82, , have spoken to crazzy doc!! and she thinks that 10mg will be enough to sort the flare up, i hope so, then we can taper really slowly.
Do u find when u have a flare up u feel so weak, i not rushing to the loo now but i feel so limp an washed out, how long does it take for pred to kick in, does any one know.
thanks for the help, dont feel so alone now on this forum and have learnt so many helpful things.
mandyx

 

[nia]

Hi Mandy
have just been diagnosed and so have just joined this forum...you are the first person I've contacted....ppartly because we're the same age!!!
I also have Rheumatoid arthritis which doctors don't think is linked...although both are auto immune diseases, what I'm coming to is I have been on prednisolone for 13 years for a blood disorder I no longer have! but when I did try to get the dose down it caused all kinds of side effects, aching muscles, sore mouth, all kinds of strange things, 5mg is a low dose but try taking 4x1mg for couple of months then very slowly come off them!!! good luck....I'm doing the same thing!!!

 

[mRae85]

I have not been that low ever, I got started with 15 mgs, then they took it up to 40mgs and well, I can tell ya that you don't want to stop cold turkey when it is that high! Aching muscles is a part of my day to day life due to the Crohns, but if you break out in a rash GO TO THE ER... just a friendly tip from someone who ignored that little issue and now looking back I feel very lucky because when you get a rash that is usually the first main sign that your body is seriously not in good shape and you are entering adrenal crisis. I however did not know this then and didn't even read about it untill right before I managed to get my refill. Once I did get back on it though it took about a week for me to see the rash clear up and all signs of withdrawal to go away. I can't say any of the Crohn's symptoms are completely gone, but at least they are not being ignored. I look at pred as not helping but better than nothing because I suppose it is holding it back from getting worse

 

[nia]

Oh god have just read your post...and I have had a horrid rash for the past week... spoke to doc on phone and we put it down to a reaction to new drug (Humera injections) for 'crohns' and Rheumatoid arthritis'. gone on anti histamine which not really worked, I am seeing him in person tomorrow morning and am going to mention what you asid...thanks!!!