Update!!

[Niks]

Hi all

Just thought I'd give you an update. My 18 year old daughter is finally starting to feel a little better!! She has gone from 9stone 8lb at end of August to 7stone 4lb, at her lowest!

This is her second attempt at pred. She is now taking 30mg daily. I think last time she tapered off far too soon. There is no talk of her reducing at the moment, but she has actually gained a whole 4lb in the two weeks she's been back on pred!!! YAY!

Her stomach cramps have all but gone, and her BMs are getting back to normal, after having obstuctions and severe constipation.

One question I do have is..... What do people normally get prescribed once off of pred??? I am scared that she will become very unwell again if she just tapers off?

Niks

 

[Lisa]

Hi Niks - glad your daughter is feeling better on the pred. There are many different medications that can be used - from Asacol to imuran to the biologics like Remicade and humira. Her GI doctor really should be discussing this BEFORE she tapers off the pred - as you don't want her to start to flare again while a new medication starts to work. Remember, some medications do take days to weeks to become effective!

Has she been on any medications in the past besides the prednisone?

 

[Clash]

That is great that she is starting to feel so much better and has gained some weight. Has her GI discussed a maintenance med for her to start on? Alot of the CD medications require a bit of time to build up to theraputic levels so alot of times a maintenance med will be started while on pred and will be building up so that as you taper off the pred the maintenance med can take over.

There are different meds prescribed depending on the severity of disease and whether the GI subscribes to the "bottom up approach" starting at the lower meds and working up to the stronger ones as needed or the "top down approach" where they start with the stronger drugs, hitting it with the big guns to gain control.

You can look through our treatment forum(<---click here), it has the different treatments available for IBD and members' experience with them. There is a wealth of information there.

 

[Niks]

Hi Pasobuff

The only other meds have been pain relief, ondansetron for sickness and nausea (at her worst she couldn't tolerate anything, was bringing it back up within minutes), 20mg pred foam. Also salofalk 1g. omeprazole 20mg, calceos and several laxatives.

Her IBD nurse has been calling every 3 or 4 days to see how she is, we are still waiting for GI appoint though!!

Niks

 

[Niks]

Hi Clash

We have only actually seen her GI once on the last time she was admitted to hospital!! We are waiting for an appointment with him. Her IBD nurse seems very good though, we will get her on his case!

Niks

 

[my little penguin]

Depends on the doc and disease location plus severity .
Most have the child start the maintence med the same time as the pred to give the maintence meds time to work , lessen the time on pred and lessen the likelihood of a relapse.
Some docs start on an ASA ( pentasa , asacol etc...)
But that is usually reserved for very mild cases.

Most start on 6-mp or Imuran ( immunosuppressants )- these take 3-6 months to be effective .

Then there is methotrexate ( 6-8 weeks ) to be effective also immunosuppressive.
Then biologics ( remicade , humira ) 3 induction doses (6 weeks)

 

[Farmwife]

So glad to her your DD is doing better.
As far as your question I have no knowledge BUT
other great parents will be along to answer that for me.
Hugs to you both.:hug:

 

[Sascot]

Hi, glad to hear things are better. At our hospital in Glasgow, the GI's start kids on Azathioprine first then 6mp if they fail that. I'm surprised they haven't started your daughter on one of those. Most tend to start something that will continue to help after the Pred is finished. Definately worth chasing up that GI appt!

 

[Niks]

Hi Sascot, Jaime is 18 so no longer a kid!! Her IBD nurse has called today with an appointment in clinic for next Thursday. She's staying on 30mg Pred until then and will work out a treatment plan next week.

We are just glad that she is feeling better at the moment. This is the best she has been since about August, if not longer!

Thank you for all your messages and advice xx

 

[kimmidwife]

Niks,
Glad to hear she is doing better. As some of the others said there is a variety of medications the doctors use. Look at the treatment section to familiarize yourself with some of the options. The important thing is to get a maintenance medication going before starting to wean of the prednsione. SOme of these medications can take several months to kick in.

 

[DustyKat]

Hey Niks,

Nothing to add to the fab advice already given but would just like to wish you luck with appointment next week. :goodluck:

Be sure and let us know how you get on!

Dusty. xxx