Slow progress on Budesonide

[doylep]

:depressed:
Can anyone relate to long period for Budesonide to take proper affect...
I am nearing 7 weeks starting on 9mg and reducing to 6mg....

My GI specialist says things may fluctuate from good to bad and we need
to look at how things are after a few months.....

How does reduction in a flare happen for most? Can you go backwards in symptoms after a few weeks and then get better?

I am fast believing that Budes is having no affect (or little) on me...

Thanks for any feedback...

Peter

 

[Astra]

Hiya Peter

I was on Budes years ago, did diddly squat for me then, just come of it this second time round, thank god, it's just awful!
I healed perfectly with Pred tho, I only went on the Budes for a couple of months for joint pains, withdrawal from the Pred, wish I hadn't cos it made me really foggy and ill, but I didn't have abs pains or D, so I don't know whether it worked this time or not!
I believe Budes is very mild, a 10% derivative of Pred, so why not ask for Pred to blitz your current flare?
good luck Peter
xxx

 

[MapleLeafGirl]

Budesonide didn't work for me either. I was on it for eight weeks and felt some initial relief for the first week or two, but then nothing. I ended up having to go on prednisone.

 

[afman]

it didnt work for me this flare. i changed to pred after a week and feeling better after 3 days of pred

 

[doylep]

Just a quick update...
Finally I am seeing some improvement on the Budesonide... its taken 8 weeks but abdomen pain is definately reducing .... still having some good days and some bad and I have no idea what the odd pain in my elbows, knees is and if it will fade as well...
I am running another month at 6mg and then reducing to 3mg....
I'll keep posting wth my experience as time goes on......
Peter

 

[DustyKat]

Thanks for the update Peter. It's good to hear that the Budesonide is finally having some effect and I hope it stays that way for you.

All the best,
Dusty

 

[Dexky]

Glad you came back Peter!! What about the surface type pain? Are you still experiencing that as well?

 

[Julz]

My GI told me 24-48 hrs i'd start to feel better with in, week 10 an no luck.. so i feel ya.. glad its starting to kick in though!!

 

[doylep]

Dexky
Still have back pain and my left thigh muscle for some reason is really painful first thing in the morning...... some abdomen pain but not as bad as it was.....
Blood with stools today for first time now making me panic a bit... haven't had this before... should I worry?
Peter

 

[NatalieMT]

Took me atleast 2 months to feel better from Budesonide. I started on 9mg, then moved and 6mg for the best part of a year. Then out of nowhere I started feeling really rough again, back up to 12mg and I've just come back to 9mg this past week. It seems to be a very up and down medication. I still have pain although it's not as bad as it once was and my D definitely has calmed down (although apparently steroids draw extra water out of the bowel). Crohn's and GI issues in general seem quite hit and miss anyway and it's all very individual as everyone seems to react to medications differently.

 

[Astra]

Hiya Peter

If you have blood in stools, is it bright red? or dark red?
bright red, pillar box red, could indicate a hemmie
dark, almost browny red, indicates old blood from inside
if this is the first time, then I would mention it to your gastro, give him a ring
xxxx

 

[doylep]

Thanks Joan... its bright red so I think its from lower down..... already emailed my GI specialist.... as u say could just be hemmie ..........if so its inside, and there is no pain with it...
Never a dull moment....


Peter

 

[Zalanicht]

Was on 9 for a little over a week then went to hospital so it didn't work soon enough. I was put on Pred and it seemed to work fast.

 

[doylep]

Well another week on Budesonide and I feel like I am going backwards.....
No more blood though and GI happy its low down and not an issue....phew

Three more weeks and I am going to ask for pred .... hope I am doing right thing! Thought as my crohns was mild that Budes would sort it but not so far...
Peter

 

[DustyKat]

I'm sorry to hear that things are sliding back again Peter. FWIW I think you are going about things the right way. Can't say you haven't given the Budesonide a good go, maybe it's worked to a degree but just not enough to knock it on the head. Thanks for the update and please keep us posted!

Thinking about you, :hug:
Dusty

 

[Dexky]

Peter, I don't think anyone likes to be on pred but it did knock EJ's crohn's symptoms into remission pretty quickly. He had the moon face and the spastic energy but at the end of it he was fine!! Wish you the best man!!

 

[Astra]

Hiya Peter

you've given the budes your best shot, but it's not blitzing the inflammation, Pred will do that for you, it healed me nicely, I'm in remission now, I probably wouldn't wait 3 more weeks, give him a ring, and swap for Pred.
good luck
xxx