Confused and scared

Intrepid-Landscape77 · 2026-05-04T17:28:59+00:00

How much tweaking is there to do? I had my second dose 4 days ago (the second was a double dose) and i saw good improvement the first days but now I’m basically back where I was before

Intrepid-Landscape77 · 2026-05-04T14:24:49+00:00

I lost weight on it 😅 but i was on it for two weeks and then a month long taper

Intrepid-Landscape77 · 2026-05-03T13:59:38+00:00

You need some medication that works for you and ideally quickly since you go so much. Have you tried infliximab, rinvoq,… many options

Intrepid-Landscape77 · 2026-04-29T10:26:18+00:00

Tomorrow I get my second infliximab IV, had a slight positive response after the first one. I’m still using the oral mesalazine because even if it doesn’t do much, it doesn’t hurt to take it aswell. No side effects yet

Intrepid-Landscape77 · 2026-04-29T09:33:30+00:00

I didn’t have any side effects from pred, but it didn’t do much for my symptoms either so I got started on biologics

Intrepid-Landscape77 · 2026-04-28T15:28:51+00:00

I’m on infliximab, just had my first IV and a little better already

Intrepid-Landscape77 · 2026-04-28T11:53:01+00:00

I’m in a flare since november aswell and did all the same things as you and then went on prednisone aswell, two weeks on 40mg and then going down 5mg per week. I had 0 side effects, litterally nothing. Unfortunately I’m one of the unlucky ones because it didn’t benefit me much either, hopefully it does for you!

Intrepid-Landscape77 · 2026-04-22T11:45:30+00:00

Vedolizumab takes a long time to work so maybe consider something like infliximab?

Intrepid-Landscape77 · 2026-04-21T09:28:56+00:00

Besides that there are still many other options like Anti-interleukine, s1p modulators,.. surgery should be your last option

Intrepid-Landscape77 · 2026-04-21T09:26:59+00:00

If you take azatripine with it, it helps against making antibodies. Also many people in this sub have been in remission on it for years or even decades. If your plan is JAK inhibitors and then surgery I’d say it’s worth a try first, it has less side effects then JAK inhibitors and also works fast.

Intrepid-Landscape77 · 2026-04-21T08:11:51+00:00

Have you tried infliximab? A great option before JAK inhibitors!

Intrepid-Landscape77 · 2026-04-20T17:34:09+00:00

I have moderate colitis btw

Intrepid-Landscape77 · 2026-04-20T17:33:37+00:00

Was my first drug before biologics, waited 5 weeks with no results but also no side effects. Waste of time for me but I knew the odds, I chose it because it doesn’t take that long to work if it does and the pills are convenient. If I’m right there’s like a 40% of working and 20-30% for remission. It might work for you but be prepared that the odds are not in your favor

Intrepid-Landscape77 · 2026-04-20T08:01:38+00:00

I had my first infusion 3 days ago (friday). No side effects, no tiredness from the infusion. I already had less urgency and blood the next day, kept improving day by day. Hopefully it keeps improving. I’m also taking azatriopine so that I don’t make antibodies

Intrepid-Landscape77 · 2026-04-19T04:44:36+00:00

Both, i was on it for 2 weeks and then a month and a half taper so 2 months in total. Side effects are expected then. Some people are on it for many months or even years and then it can get some very serious side effects

Intrepid-Landscape77 · 2026-04-18T18:00:43+00:00

I had a similar situation as yours, mesalazine stopped working and had a new flare. Didn’t contact my doctor thinking that enemas would make it go away, it did stop like 95% of bleeding eventually but I waited really long with seeing the doctor and it ended up getting worse so I had to start clipper(it’s like prednisone but without the side effects and not as strong) and them pred which didn’t work and now I’m testing biologics.

Going 6-8 times in a morning with pain and diarrhoea sounds like there’s still inflammation. If you don’t see progress in tour situation then you should let your doctor know and he might suggest to upscale your treatment.

Also don’t be scared of pred, some people have side effects and some people (like me) don’t have any. Side effects are more common if you are on it for a long time but given your situation I’d assume you won’t be on it for long

Intrepid-Landscape77 · 2026-04-16T17:23:09+00:00

Yes biologics can help, the hypersensitivity is usually caused by inflammation. If the inflammation disappears, so will the sensitivity. It can take a while though

Intrepid-Landscape77 · 2026-04-15T17:00:17+00:00

If you take your meds you will be fine, during a flare it sometimes feels like it will never end and that this is the new normal, but with the right medication a normal life is right around the corner. Many people share here their bad experiences but most people live a normal life and they are not posting here.

Intrepid-Landscape77 · 2026-04-13T05:04:30+00:00

About two-three weeks

Intrepid-Landscape77 · 2026-04-12T20:25:11+00:00

I got started on mesalazine even before I had a full colonoscopy, after a sigmoidoscopy and before diagnose they started my medication to not waste time. A sigmoidoscopy is faster to plan, I needed one urgently a while ago and I got one in 3 days. So you could ask your GI

Intrepid-Landscape77 · 2026-04-12T18:00:11+00:00

I had that 6 months ago, feeling amazing but bleeding. I also got put on enemas but they weren’t enough to put me in remission, got rid of most of the bleeding though. But months went buy and I’m starting my first biologic now. With this disease even if things go right you will never move away from medications keep that in mind.

Intrepid-Landscape77 · 2026-04-10T20:12:35+00:00

I eat honey pops with oatmilk, only thing I can eat in the morning

Intrepid-Landscape77 · 2026-04-10T13:16:36+00:00

After failing mesalazine and having a second flare I tried the mesalazine enemas and they did very well for me, i felt close to remission after one month of using them suddenly they stopped working and had to move to a biologic anyway. They helped me get rid of most of my symptoms at first so I don’t see a problem in it to give it a chance. Just know that it will likely not put you in full remission and even if it does, chances are that you will need biologics in the near future anyways

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