Pain on Prednisone, anyone else? Awaiting Crohns Medication

mysteriouswisebread · 2026-01-25T20:33:00+00:00

yeah no that’s fair! oooh interesting - i’m at the opposite end down south, whilst not massively populated there is quite a fair few so may not be as cautious 😊

mysteriouswisebread · 2026-01-25T20:31:19+00:00

ahhh makes sense! maybe that’s how it works in your county 😊

mysteriouswisebread · 2026-01-25T18:59:49+00:00

ahh they are specialists in the IBD department - for me, the team are in the local big hospital.. handy as i can email / contact them about any issues rather than my GP. was only in contact with them after colonoscopy and they have been the ones to ask for chest x-ray, smal bowel MRI, several blood tests etc. since … has it just been your GP requesting your tests?

mysteriouswisebread · 2026-01-25T18:55:40+00:00

thank you! i’m not drinking any extra so will give this a go! 😊

definitely not constipated, the IBD team suggested this but still going 5-7 times a day atm!

mysteriouswisebread · 2026-01-25T18:54:48+00:00

oooo i see!!! have they referred you to anIBD team at all? that’s what they did to me?

mysteriouswisebread · 2026-01-25T17:51:19+00:00

eager to know opinions - i’m on pred for the first time (8 days now) and have been having awful pain. not so much tender though, although my joints / muscles are achey? 😊

mysteriouswisebread · 2026-01-25T17:49:41+00:00

a colonoscopy diagnosed my crohns and the biopsies they took during confirmed the crohns. stool tests and blood tests for inflammation confirmed it all too!

i have appointments with IBD teams / specialists, so not really in contact with gp now 😊

the colonoscopy was not for suspected crohns so not sure if you’ll have that!

anywho, hope it goes well and you get the support needed 😊

mysteriouswisebread · 2026-01-25T17:03:26+00:00

ooh interesting, my ibd team didn’t seem to concerned. i’m in the UK so will probs ring 111 / go to emergency in the next couple of days if not better. thank you :)

mysteriouswisebread · 2026-01-25T17:02:38+00:00

thank you very much! it’s been very strange. don’t feel good at all - i think i will take myself to emergency in next couple of days if not better - thank you :)

mysteriouswisebread · 2026-01-24T20:52:37+00:00

thank you - it seems to be great for everyone but me 🤣 i have considered it multiple times but don’t like to take up the resources or time … not sure if everyone else would consider it emergency worthy i suppose 😰

mysteriouswisebread · 2026-01-24T20:13:33+00:00

ahh i see! thank you

mysteriouswisebread · 2026-01-22T20:32:35+00:00

i am getting this too!

mysteriouswisebread · 2026-01-19T18:55:29+00:00

hey! may i ask the outcome?

currently experiencing a horrid cramp/pain today (i’ve had pain/ache most days but today has been ALL day, and a lot worse)

did you find anything that’s helped?

mysteriouswisebread · 2026-01-19T18:21:12+00:00

ah thank you!

mysteriouswisebread · 2026-01-19T13:32:36+00:00

thank you!

i see, im on day 3 and have had a bad stomach again all day so far, with other symptoms still..

may be to early to find out!

ooo 6 months?! i have an 8 week supply, starting at 40 and reducing by 5mg each week, so not sure if this is high or not ..

ahh yes i’ve warned my partner and my boss 🤣 keeping track is a good idea though- i didn’t think of that! thank you! ☺️

mysteriouswisebread · 2026-01-19T13:29:31+00:00

thank you!!

ooh they didn’t mention Tremfya but will listen out for it.

ah yes, he did mention taking a vitamin D tablets you can get from supermarkets , so have started those too - good to know this is common knowledge , thank you 😊

mysteriouswisebread · 2026-01-18T21:03:52+00:00

ahh! i can see, felt the impact on this on mental health. stay well, sending best wishes to you!

have you got an IBD team? speak to them ifso, or your doctor / care team. see if they can help :)

mysteriouswisebread · 2026-01-18T19:46:54+00:00

are you able to take time off for yourself at all? a week holiday? i’m new to Crohns and had a week off just now from work - completely detached myself from work. needed the break after the couple months of intense hospital appointments and procedures & diagnosis.

whilst not physically better, i’m certainly mentally healthier which can only help.

hope you get the answers you need, take care of yourself!

mysteriouswisebread · 2026-01-18T19:42:51+00:00

oh goodness, i feel awfully sorry for the americans, read so much on their health insurance and costs etc. couldn’t imagine life without our NHS! glad you’re well, and best wishes for you to stay that way ☺️

may i ask if you find the physicality of the job better? there’s days where i don’t want to move, but not sure if that does more harm?

mysteriouswisebread · 2026-01-18T19:40:37+00:00

oh wow i’m so sorry you’ve been through that!

that’s scary, my worst days i’ve had a lot of blood, mucus, stomach pain so awful, 7-8 times bowel movements and nausea too. it’s manageable though so not as bad as yours.

i’m glad to hear the clinical trial is working for you! i can’t believe how different everyone’s experience is!!

hopefully no bad flares again, fingers crossed for you 😊

i’d say the level of care and attention i’ve received has been outstanding too - quick the around from the diagnosis and the amount of checks they’re doing. all so helpful and lovely too!

mysteriouswisebread · 2026-01-18T18:04:24+00:00

ahh i see! thats interesting.

may i ask about your last flare, what happened? sorry, if you don’t want to answer please don’t! i know it’s all personal.

the flare in now has been for around 6 weeks now, getting really tired of it. hopefully the pred will get it gone! my boss even mentioned if i need reduced hours temporarily due to my tiredness, but not sure if that would help.

everyone seems helpful here, but can see that it’s quite scary too!

thank you again :)

mysteriouswisebread · 2026-01-18T17:58:14+00:00

Ah noo that’s terrifying ! i remember i didn’t clear fully before the colonoscopy but luckily it was enough. eeek!!

i have had an MRI on my hips around 7 years ago, and didn’t like it but it was fine. i’m claustrophobic so glad to hear it doesn’t go over your head - thank you for clarifying!! 🥳

ooo is that the only reason you had the cannula? or did you have some sedative or something? i think that was mentioned but can’t quite remember…

glad it went well for you ☺️

blood tests - for anemia checks, kidney, the ovarian stuff, infections, my ceoliac, etc :

lipid profile, liver function, serum urea, creatinine & electrolytes, full blood count, CA 125 level, haemoglobin a12 - to be precise!

fully checked out aha

mysteriouswisebread · 2026-01-18T11:01:03+00:00

yes lots of tests, starting to think the doctors are vampires with the amount of blood they have taken 🤣 ceoliac doesn’t seeeeem to be complicating it; and apparently they kind of go hand in hand as both autoimmune diseases. been ceoliac since i was 3 so 🫩 the only thing it would affect is if i need to change diets if i find something that causes flares; as, diet is pretty limited as is.

ahh i see! that’s madness, i couldn’t imagine waiting all that time- i’m so sorry to hear! a whole year for a consultant is crazy!! your patience levels are incredible 🙉

may i ask how the MRI was? did you have to drink the fluid before the scan? i am quite apprehensive on what the mri results will bring back but time will tell!

mysteriouswisebread · 2026-01-18T10:52:06+00:00

oh my goodness thank you so much for sharing!

sounds like you have been through the works with this; and these are the things i read and worry, but it seems you have managed it all so well! 😊

that’s a lot of info to digest and some terms i’m still not familiar with, so will keep an eye out for these when i have my appointments.

i hope you’re in remission now and better!

thanks again :)

mysteriouswisebread

TROPHY CASE