Going back up on the stupid PRED :(

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Angrybird

Angrybird

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Hi everyone, just thought I would have a winge about the fact that I have got to increase my dose from 20mg (only went down to this on Tues) back up to 25mg. This is due the soup that came out me arse this morning!!!! My IBD nurse says that I have been on the Aza 10 days this has not yet settled in and I am then trying to taper down from the only working med I am on, she is not surprised I am starting to have some problems. I am to stay on the 25mg until I see her on the 13th Feb where we will then review things. I am to call on Tues/Wed next week for todays blood results and if these are alright I am allowed to up the Aza to 50mg. Bit annoyed but hardly surprising given that crohns is such a **** of a disease.
 
Exact thing happened to me AB. But through perserverence...I got off the pred. You did say the Aza was a good drug for you in the past. Give it about 6 weeks. It will be a balancing act between it and the pred.

Sorry!!
 
Hi AB,

It took me 12 weeks for Aza to become strong enough for me to get below 30mg of Pred. Now I have the face of a chipmunk but am tapering at 20mg. Every morning I worry that I'll get 'the water of doom', which for me, means it's back. Nasty old disease, ain't it!!

Fingers crossed for you. Lots of distractions and little treats are req'd I reckon....

P

Pred 20mg
Aza 150mg (2.25mg/kg)
Pentasa 2g bd
 
It really does suck doesn't it hunni?

Hopefully you can reduce it when the Aza kicks in.

Fingers crossed for you AB.

Sending you some squishy hugs as well.

Xxxxxxx
 
AB, sorry to hear you had to up your pred and will be on it longer! Hope you start feeling better soon! By the way I love your name and profile pic, just love those Angry Birds!
 
Nearly finished angry birds.. Plants vs zombies is pretty good. Got me through three months of crap :)

Good work with the photo AB - the minute my Pred-chops subside I'm putting mine on!
 
Go for it now! Just think you can do 'before and after' pred picks :) I have already completed plants vs zombies....twice under different log in names (what a sad act) I have some AB Rio still do to but am holding off as when this is done I know I will have to wait for them to release more.
 
Know how you feel AB. I'm acting up again and my GI is talking about the possibility of trying: Remicade or putting me on either Aza or pred again. Don't like the thought of any of them. But, I think I'd rather try the Aza first since when I tried it last I was tapering off the pred just like you are now. Hope things will work out soon for both of us:)
 
Thanks everyone :) I am in a better mood today about this. 'They' do say these things are sent to test us after all!

Cross-stitch - definetly worth trying the Aza over the Remi, my alternative is Humira and I really don't want to go there. Also I am thinking that this leaves me with something still to try in years to come if (more likely when) things act up again. When will you see the doc about this?
 
Good for you! As far as I can see Aza seems to be more likely to work and for longer with lower risks. Gotta be worth giving it a good try. If it doesn't seem to be working after a few months look at the dosage before giving up. Also, I'm not sure whether it's correct or not but I was advised to take my calcium/vitamin D an hour or two after or before the pred. In case it stops it being absorbed properly.

I'm trying to avoid biologics for now too. Keep something in the toolbox for the years to come. My current 'plan B' is the diet treatment. I have a few weeks of elemental 028 ready to go....

Oh, and I've put a photo on. Hopefully it won't scare too many of the children :)
 
Glad to see the pic :) Where was it taken? Good luck with the diet, I really hope this works for you. What flavours have you got? Due to my previous issue with the Aza my GI is hoping a final dose of 125mg will keep me sorted (first time round I was on 200mg).
 
Pic was on the back of P&O cruise ship Ventura somewhere in the Med. In the happy days when 24 hour all-you-can-eat food was a good thing :)

I've got banana, pineapple and somethingorother and grapefruit. Am quite excited to start actually. GI said he doesn't think it's the right option for me and wants me on Humira instead. He says the diet will prob get me into remission but it'll come back. As far as I can see that sounds just like the drug approach but without the side effects. Food reintroduction scares me a little as I have some stricturing but I also have a blender so I should be ok.

200mg sounds a lot. It's meant to be 2 to 2.5mg per kg isn't usually?
 
It took about 4-6 weeks for aza to kick in for me. It worked well. Unfortunately any higher than 50mg wrecked my blood count. Fingers crossed it kicks in for you soon and you can get off the pred.

Angry Bird- Saw gastro yesterday down your way- wants to go down biological route and maybe elemental as well. I already have an nj tube so don't need to worry about the flavour...but not so keen on nothing by mouth for 8 weeks. He's talking to my local gi next week so they can 'discuss' me...
Slight thread hijack there..sorry!!
 
Not sure, I do know it was thought to be quite a high dose, it was most probably why I developed neutropenia. Oohh all you can eat buffet's....they sure were the good ol days :) Definetly go slow on the food re into, I think things like mash and other soft stuff is a good place to start.
 
Hiya AB!

aw it sucks big time but you'll get there! I was on a yo-yo regime with Pred for nearly a year and it healed me, eventually!
Wait til the Aza kicks in, you'll feel much better
I've got loads of squishy hugs for you all too! Sending them your way xxxxxxx

great to see your pics Paul & AB & Sharon xx
 
Littlemissh, just noticed your post :ybatty: Please keep us udated on how things go, I would perhaps start chasing the doc on Wed if you have not heard anything, it can't hurt to try and get an update sooner rathet than later. Do you know the biologic they will be discussing? How do you feel about this?
 
Hi Ab and thanks,
How do I feel- weirdly I am nervous but excited. I have had such a nightmare since diagnosis - been on pred since oct 2010, aza worked but then I ended up with neutropenic sepsis with severe leg infection- consented to have my leg amputated- didn't happen but needed 7 ops to get the infection under control. Then the crohn's crept into my stomach/duodenum and then perforated my duodenum. I have had more blood transfusions than I can remember and am back to transfusions nearly fortnightly.

Basically I will do or take anything to try and get my life back - I was a runner and walker, I have no job as of christmas...so REALLY hope biologics will fix me and am prepared to take the associated risks...just hope it works...
 
LMH! :ywow::hug:

Yup 6MP did the same thing to me as Aza did to you. (same drug technically) I have a 2 WBC and a 9 RBC right now. Even back down to 50mg and I'm not recovering well.

You Cambridge'ish girls....we need to have a bowl of soup together. (I'd say a drink...but..)

Surely...all of us are going to feel better soon damnit!!!!!
 
Littlemissh: that's a rough ride! You've done really well to get through it all. Lots of people have done so well on the biologics. Fingers crossed and best of luck!!

P
 
OMG littlemissh that just sucks! Fingers, toes, legs, eyes, everything! Crossed the biologic sort things out.

Misty lets forget the soup, I think we have all earned a drink, in fact I have just had half a bottle of wine and am feeling no pain :devil:
 
Misty you are a cab!

Sorry I couldn't resist. Lol

Enjoy your alcohol girls, have one for me Xxxxxxx
 
Angrybird said:
Thanks everyone :) I am in a better mood today about this. 'They' do say these things are sent to test us after all!

Cross-stitch - definetly worth trying the Aza over the Remi, my alternative is Humira and I really don't want to go there. Also I am thinking that this leaves me with something still to try in years to come if (more likely when) things act up again. When will you see the doc about this?
Click to expand...

Thanks. Not sure when I'll see the doc sounds like she's not interested in really seeing or doing much till my cold is gone. But, my husband did a little calculation yesterday with my symptoms. Sounds like even though I might still be having some challenges with my Crohn's/Colitis or whatever, looks like for now I probably just have a simple ulcer or so in my stomach. So, we're treating it as that to see what happens.

Glad to hear that you're feeling a little better mood wise. It's easy to get down when you're not feeling good. Still in this with ya no matter what. Take care.
 
Morning AB.

Have had fruits of the forest. Very tasty going down. It soon became renamed farts of the forest by my hubby as it repeated on me a lot!

Gave us a laugh.

Really tired again today. Have bought some lacto free milk and have been having that. Quite nice.
Mind you everything I have seems nice to me at the moment.

How are you today hun?
 
:D I am not too bad, just a little weary with a few twinges. I am having a nice chill on the sofa with hubby, he has forgiven me for the horrendous nuclear gas that was coming ot my butt last night. I swear I have never smelt anything like it!
 
I'd buy some from you AB to clear train carriages...always too busy and full of people coughing/sneezing on my way to work! x
 

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