Back up on the pred Grrrrrr!

[porter89xxx]

So ive just come back from the g.p surgery and have been told to go back up on my pred from 15mg to 20 again for another week to see if i feel any better, i really dont understand this i felt fine on 20 then as soon as i have come down on 15 mg im getting the pains back round my belly button that feels like its pulling and just a nagging pain also the tiredness is coming back and going to toilet more even though he said he could not hear any bowel sounds., what the hell is going on??

 

[Astra]

Poor you Amy
you've been thro so much these past few months.
When I tapered to 15mg all Hell broke loose! It was upped to 25mg for another month and this did the trick.
You've obviously got a lot of inflammation still going on there, other than that, I don't know the answer.
Really hope you get some relief upping the Pred
Take care xxxx

 

[xoxava]

I really don't have an answer for you but I hope you start to feel better soon. I know how aggervating pred is. I've been on 40 mg for 2 months and 80 mgs for 7 months previously. I'm sure my body isn't very happy about this!

 

[ameslouise]

Sorry to hear this - we've all been there!

Maybe you need to taper more slowly - by 2.5 mg or 2 mg. That's what I did last time and it was much easier coming off of it.

Good luck! - Amy

 

[littlemissh]

Exactly the same thing happened whenever I dropped below 20mg. I'm now tapering 2.5mg every 4 weeks but also now on aza. First day on 15mg today so can't say if it will work but have been 'stable' on 17.5mg.
Are you on maintenance meds? Until I was put on aza I could not drop below 20mg.
When you seeing your gastro team again?

 

[porter89xxx]

Hiya thaanks for your replys, I am on pentasa 2 tablets 2x a day I really don't understand some peoples experiances about also under 20mg and it all kicks off again its really weird, the pain literally started coming back 2 days into weaning to 15mg and got the pain of the pulling under the belly button and a dull naggin pain, has anyone else had this. I am seeing the gastro in london on 23rd march so 2 weeks tomorrow.

 

[littlemissh]

My pain is mid and upper right. It became persistent whenever I dropped steroids pre aza( basically because inflammation increases again) but now I only get with eating.
Good luck with appt.

 

[Grey Hawk]

You guys really taper that slow? The first time I was on it, I was tapering at 10mg a week and I was on it for I think 5 months in total.

 

[littlemissh]

The original plan was 5mg reduction per week but I just became ill again. Slower and slower tapers were tried and as I said I am now trying 2.5mg 4 weekly plus aza.