Come off steroids and in flare up within 24hours!

[Cozmo]

I've been on a 6 week reduction of steroids(prednisone) since getting diagnosis. I've tapered the latter reductions which has extended it to about 9 weeks. I had my first day off them yesterday. Come evening time I'd started to flare up a little but I just went to bed hoping it would simmer down. I awoke at 2:52am in full flare!

I had one steroid and some Co-Dydramol, and then another steroid half hour later and spent the rest of the night in sketchy sleep before getting up for work. I'm going to go go back to one prednisone a day and go and see my doctor to inform him tomorrow.

This is my first time of being on, or coming off steroids. Does it mean that the Pentasa isn't working?(been 9 weeks now). A lot of you on here seem to stay on steroids permanantly, I'm fearful that that's what I'm going to have to end up doing(and then suffer all the side effects). Surely they treat the symptom rather than stopping the cause? It still doesn't feel right, and I'm still not producing semen, so there is still probably something more going on like a fistula.

Have you guys experienced anything similar when stopping steroids? If the Pentasa isn't working I'm tempted to go on a free drug trial that has been offered to me. Are any of you on the trial drugs at the moment? If so, how have you found them? Would you recommend them at all?

As always, very grateful for any replies...

Peace Love n Unity :hug:

 

[Niks]

Hi my daughter doesn't have a diagnosis yet, but as soon as she gets down to 20mg she starts to become unwell!!


I don't know about the Pentasa. I hope you get some answers soon and start to feel better. Good luck

 

[Susan2]

Very few people today stay on steroids permanently. They are usually used to get some control over severe Crohn's symptoms so that other medications can be more effective. Unfortunately, however, people respond differently to the various medications used for Crohn's. Often a number of types of meds have to be tried before an effective combination can be arrived at.

Talk to your doctor about the different meds and also about the trial that you are contemplating joining. Do you know what drug it is that is being tested?

 

[SilverFirePrime]

I had almost the exact same thing happen to me, but the time to flareup was about a week. It turned out that the Pentasa was doing jack squat. I was actually grateful for this, as I was taking 16 of them a day.

My GI ended up putting me on an alternating 10mg/15mg dosage until I had a surgery to remove a foot of intestine and close a fistula. All totaled, I ended up on Prednisone for almost 11 months.

 

[hainman]

very common,i have had the same problem at least 3 times coming off them,got to about 5mg and bang,Flare up,my last attempt took some time but it eventually settled down but ive been put back on them to get me through Xmas and a waitning op so no doubt i'll be back in the ****....litterally
I also suffered a bit of withdrawl after being off them that wasnt pretty!!!!

 

[CrohnsChicago]

Im sorry you are still not feeling well even after treatment . Unfortunately this does happen to many of us. There can be a lot of trial and error before we find what works.

Discuss this with your doctor as well as your options.

It could be that you need a longer time on the steroids (which is usually not recommended). If that is the case, discuss the possibility of using Entocort which is a milder version of prednisone with fewer side effects.

It could be that you need to up your dosage of Pentasa to help encourage healing. It could also very well be that you need to resort to another avenue such as an immuno-suppressor (Imuran, 6MP, Humira, Remicade) to help put you in remission and maintain it.

Treatment is meant to try and get you into remission/stop flares. It's important to find the right treatment that does just that.

Good luck with whatever choice you make and feel free to keep us posted on this thread :hug:

 

[Cozmo]

Very few people today stay on steroids permanently. They are usually used to get some control over severe Crohn's symptoms so that other medications can be more effective. Unfortunately, however, people respond differently to the various medications used for Crohn's. Often a number of types of meds have to be tried before an effective combination can be arrived at.

Talk to your doctor about the different meds and also about the trial that you are contemplating joining. Do you know what drug it is that is being tested?

Thanks Susan. yep, it looks like I'll have to try some other medication combinations, I'll speak with the doc tomorrow.

The free drug trial people haven't informed me what drug it would be. They are running from an East Yorkshire hospital in Hull(if anyone knows anything about them?)

Thanks again :hug:

 

[tots]

It's sad but true. it's very common to flare back up when you taper down or just get off
prednisone.

I hope you feel better very soon!


Lauren

 

[Cozmo]

I seem to get more sense and constructive advice from here than I do from a lot of the doctors and specialists. I've been back to the doctors yesterday and I've been prescribed 1ml prednisone tabs so that I can try tapering the reduction even more, going down from 5mls a day to 1ml. I'll give it a go but as SilverFivePrime says it seems that the copious amounts of giant tablets of Pentasa I'm taking are doing Didderley Squat!

Thanks to everyone who has replied.