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Help my crohns is back again

S

Sweetcaroline

Hi I am new to this site & just wanted to see if other people have experienced a flare up as soon as they stop prendesilone. This is my 4th flare up since my diagnosis in 2009 (i had been previously told i had IBS in 2001 so i cooldve had this a lot earlier than my diagnosis) after losing an awful lot of weight & continuous vomiting & extreme pain and nearly 5 admittance into hospital a week or 2 at a time over 3 month period & lots of tests they finally diagnosed crohn's. I have a few flare ups that weren't as bad as that first one, given prendesilone & imuran they have kept it under control whilst giving me energy back but every time I have finished my prendesilone the fatigue and pain comes back I live with it..what else can I do, until it gets steadily worse & a flare up occurs. I stopped my imuran when I was pregnant with my daughter then had a another flare up when she was a few months old & this time
My meds worked fantastic I had never felt better I felt like I used too full of energy then I started to taper & it hits me hard again bam I am exhausted & in pain this lasted for another 8 months until yet another flare up I started yet again on prendesilone & imuran i started tapering my steriods but didn't experience any difference this time I had slight pain all the way through no energy at all this time to be honest I was scared to come of:sign0085::sign0085: the steroids but my doctor said I must I stopped it last Friday and I am in agony again I can barely sit or hold
My daughter, and any excersion exhausts me drastically. I have 4 children so that in its self is tiring but I am dead on my feet & have to sleep in the day just to get through the rest of the day. I am worried that I will
Need a resection earlier than I thought due to so many flare up recently & the fact the mediation didn't really effect it at all this time. I told the doctor that I didn't want to stop the steroids & I now have to make another app with the doctor who will now probably start me on another high course of steroids (along with all the side effect which I hate..Y:sign0085:coming back) has anyone else had a flare up come back so quick?? Or can anyone give me any other ideas for anything else I an do to help with the fatigue or pain? Thanks.
 
Rebecca85

Rebecca85

Location
Nottingham, UK
Sounds like you need to be on a maintenance med, once the pred has you in remission the maintenance med takes over and lets you come off the pred without your symptoms returning. I see you have tried Imuran but it doesn't seem to be working for you! Could you maybe go try a higher dose? Or maybe it's time to switch. There are other drugs in the same sort of category (6mp, methotrexate) or it might be time to try a biological drug (humira, infliximab/Remicade).

If you do end up going on steroids again, when it's time to taper off you could ask for a really slow taper. Some doctors like you to decrease every few days, but some people have had success by only lowering the dose every 2 weeks, or by halving tablets and only dropping a half at a time. And if your symptoms do start to come back, then go up a level until they disappear before trying again.

To be honest though, I would be wondering whether to try another doctor because it doesn't seem like this one is listening to you!
 
KayleighK

KayleighK

I took my last 5mg last Monday after being on it for 7 months. I'm currently on Pentasa, Azathioprine, Infliximab and omeprazole. I've only been on the infliximab 6 weeks so I don't think it's kicked in yet. But I feel like I'm flaring again!! I'm being put on a liquid diet to try ans rest things. So just to say yes you can flare as soon as you stop pred. UGH!!!
 
R

ruthyp

yes, i have the same problem! im on mercaptopurine 30mg, but whenever i get to 15mg of pred, i start flaring again! it is a very scary time.

the best advice when i did come off completely last year, was i came down 1mg a week once i got to 15mg, it was a very very slow process but i did eventually get off of them, unfortunatly i got the ulcer in feb so iv been back on them now but it was possible to come off, just very slowly. xx
 
M

marjory2020

Surgery, meds and kids

You may very well need another surgery. It sounds like your case is pretty extreme! What reason have your doctors given for ending the pren when they did? Could you have kept it going for a little longer in order to solidify the good feeling before tapering off? In the meantime, if you can get a nanny or a friend or whoever the lucky man is to take care of the kids sometimes, that would help the fatigue!

Sweetcaroline said:
Hi I am new to this site & just wanted to see if other people have experienced a flare up as soon as they stop prendesilone. This is my 4th flare up since my diagnosis in 2009 (i had been previously told i had IBS in 2001 so i cooldve had this a lot earlier than my diagnosis) after losing an awful lot of weight & continuous vomiting & extreme pain and nearly 5 admittance into hospital a week or 2 at a time over 3 month period & lots of tests they finally diagnosed crohn's. I have a few flare ups that weren't as bad as that first one, given prendesilone & imuran they have kept it under control whilst giving me energy back but every time I have finished my prendesilone the fatigue and pain comes back I live with it..what else can I do, until it gets steadily worse & a flare up occurs. I stopped my imuran when I was pregnant with my daughter then had a another flare up when she was a few months old & this time
My meds worked fantastic I had never felt better I felt like I used too full of energy then I started to taper & it hits me hard again bam I am exhausted & in pain this lasted for another 8 months until yet another flare up I started yet again on prendesilone & imuran i started tapering my steriods but didn't experience any difference this time I had slight pain all the way through no energy at all this time to be honest I was scared to come of:sign0085::sign0085: the steroids but my doctor said I must I stopped it last Friday and I am in agony again I can barely sit or hold
My daughter, and any excersion exhausts me drastically. I have 4 children so that in its self is tiring but I am dead on my feet & have to sleep in the day just to get through the rest of the day. I am worried that I will
Need a resection earlier than I thought due to so many flare up recently & the fact the mediation didn't really effect it at all this time. I told the doctor that I didn't want to stop the steroids & I now have to make another app with the doctor who will now probably start me on another high course of steroids (along with all the side effect which I hate..Y:sign0085:coming back) has anyone else had a flare up come back so quick?? Or can anyone give me any other ideas for anything else I an do to help with the fatigue or pain? Thanks.
Click to expand...
 
S

Sweetcaroline

Thanks so much everybody! I've got an appointment soon with my gastro doctor so i will keep you informed. I think the imuran did not have time to work (it takes 3 months to enter your system) as I had only started back on it the same time as pred when my flare started up & as my last blood test results showed up that my indicator markers were still spiking so it showed I was still flaring but as it was my GP not my gastro doctor who advised it so i shouldn't have taken his advice as he is not specialised in crohns treatment. By hey ho I've coped with it before & I haven't got long to go till my app so lots of painkillers till then me thinks. Lol!
 
LindaS

LindaS

It is very possible to flare as soon as you go off the predisone or even as you taper. I am glad you have a GI appointment set up. You might need to try a biologic such as Remicade or Humira. Before my first surgery I was predisone dependent. Of course, back then, they didn't have the biologics that are available now. I hope you can find something to ease your symptoms.
 
R

ruthyp

Rebecca85 said:
Ruthy- 30mg seems to me to be rather a low dose of mercaptopurine. Is there are a particular reason why your dose is so low?
Click to expand...
They say i have an enzyme missing in my blood that cant break down the drug itself, i originally got put on Azathireprine (not sure of spelling) but that made me really really unwell, apparently because of this missing enzyme :/

there are a few drugs iv been told i wouldnt be able to tolerate in high doses and i get alot of side affects from drugs because of this thing i dont have.
x
 
Rebecca85

Rebecca85

Location
Nottingham, UK
Ahhh that makes sense. One thing I have heard about is using a drug that interacts with the 6mp or aza- like allopurinol. Because of the interaction it increases the strength of the med without increasing the dose- so no more enzyme is needed. Might be worth asking about.
 
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