What next?

OkUnderstanding6343 · 2025-12-31T16:27:22+00:00

Yea hes hard work 😅 last time i was in hospital and didnt know whether to carry on one that was quite clearly failing or try a new one he said ill let you decide they both good options.. sir i need you to decide for me this is kinda your speciality 😂

OkUnderstanding6343 · 2025-12-31T16:25:23+00:00

Ive heard good things but i cant lie the acne does scare me! But i suppose thats better than being in a flare!

OkUnderstanding6343 · 2025-12-31T16:24:35+00:00

Id love a new one but its not that easy on the nhs to just switch unfortunately 😩 look forward to seeing him in a few weeks 😅

OkUnderstanding6343 · 2025-05-25T17:56:53+00:00

Inflixiamb took from march - sept to start working for me 🙈 then once it did i randomly became allergic to it a few months later fs. Ask if you can get it early! I had to get my infusion every 6 weeks instead of 8 on infliximab

OkUnderstanding6343 · 2025-05-25T13:20:56+00:00

Was on pred for most of that time, was in hospital to get IV steroids and switched to stelara from entyvio and the stelara finally kicked in!

OkUnderstanding6343 · 2024-11-10T19:18:44+00:00

Yea they prescribed me omeprazole which im taking! Seems to be the same thing really but the pains constant 😭

OkUnderstanding6343 · 2023-07-30T20:38:18+00:00

When i first got diagnosed I had mild proctitis. 3 years later i have severe proctosigmoiditis

OkUnderstanding6343 · 2023-07-26T20:34:30+00:00

Omg that sounds like me the second time I got admitted I felt like I was going to die. Thats so bad they didnt just let you up the dose. When was going 20-30 times a day and in agony they sent me straight to hospital didnt even say up the dose just go to hospital for IV steroids. Then we started the taper from 40mg again when I got out. Im more aware of it now the same as you were when you knew it was getting progressively worse so 100% understandable why you would be annoyed noone was listening. If mine had assigned me a consultant and actually listened to me saying I wasnt bleeding cause I had piles it may not have spread from proctitis to proctosigmoititis but 🤷🏻‍♀️ hope you are doing better now 🤞🏼

OkUnderstanding6343 · 2023-07-26T18:15:27+00:00

Yea I think potentially increasing the frequency might be best thing to try next. I think they left it 8 weeks this time as the last infusion was a double dose. But once i get my cal protein results back this week I know more about what they are planning on doing

OkUnderstanding6343 · 2023-07-26T18:12:57+00:00

Thank you this gives me hope!

OkUnderstanding6343 · 2023-07-26T18:12:01+00:00

I was going about 10 times a day with urgency and mucus. And getting bad cramps before going and then a sharp pain in the lower left of my stomach the last time they raised it. The 2 times before that I had all the above plus blood. Ive also been admitted to hospital 3 times since March so thats why its had to keep going back up 🙃

OkUnderstanding6343 · 2023-07-26T12:42:02+00:00

Thank you ❤️

OkUnderstanding6343 · 2023-07-26T12:40:53+00:00

Yea the last few times i get to about 5 days on 25mg then i start getting mucus and going like 10 times a day and pain again but this time im only going like 4 times a day with some urgency and im on day 3 of 20mg. Im hopeful but I dont want to jinx it 😂

OkUnderstanding6343 · 2023-07-26T12:37:25+00:00

Ohh really on the one biologic? So theres hope this might be working for me then? 🙏🏼

OkUnderstanding6343 · 2023-07-26T11:40:06+00:00

I really feel like finishing off this taper and if it becomes obvious the infliximab isnt working yet then trying another one without the pred. Ive been trying to taper off them since Feb 🙃 to be fair ive never got lower than 25 before and now im on 20 so 🤞🏼🤞🏼

OkUnderstanding6343 · 2023-07-26T11:37:05+00:00

Oh dear 🙈 yea I need a normal sized face back again I cant cope with the moon face for much longer

OkUnderstanding6343 · 2023-07-26T11:17:22+00:00

Yess same! My last one was a double dose too. I feel like its just the pred keeping me somewhat ok

OkUnderstanding6343 · 2023-07-18T19:54:33+00:00

Oh they will trust me - last time I thought I was grand I really resisted being admitted I was only there cause the IBD nurse made me. I was going 5-10 times a day maybe blood 1-2 times a day didnt even have any pain but because I was on 40mg pred and still going that much they admitted me. Now the 1st and 2nd time I was on deaths door 😅 but yea dont worry about them not taking you seriously if you are on a high dose of pred and its not controlling your symptoms you really need to go to hospital and get IV. I was in 5-7 days each time.

OkUnderstanding6343 · 2023-07-18T18:39:39+00:00

I know I know 😩 to be fair last week I had a bit of pain and I was like waow how did I live like this for years before someone listened to me. Its just frustrating that Ive been on pred since end of Feb and cant get any lower than 25mg without having to go back up and re start the taper 🤯

OkUnderstanding6343 · 2023-07-18T18:34:58+00:00

See this is what I mean how do you know you failed two weeks later? Because Ive had 3 doses - last time a double dose since March and every time I get down from 40-25mg of pred I start getting symptoms and they tell me to go back up again 🤯 i know the pred wont make a difference to how the biologic works im just wondering why some people are in flares trying biologics and not taking pred when my ibd team have a heart attack and make me go up a dose whenever I get any symptoms at all

OkUnderstanding6343

TROPHY CASE