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Adalimumab so far...

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Ulcerative Colitis
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Posted 4/20/2022 2:07 AM (GMT -8)
Hi everyone,
So I've been on Adalimumab now for just over a month. First 4 injections were on the 14 of March, then I had 2 injections on the 28th of march and 1 injection on the 11th of April.

Honestly after the first 4 jabs I started to see improvement. After bleeding daily for over a year, I stopped bleeding straight away. I also started to have good BM's, no urgency. This has been great up until this Monday. I still don't bleed thankfully and have solid BM's but I have that bloated, empty ill feeling in my belly again that reminds me of this disease. Some cramping too.

I'm not sure if its coincidence that on the 11th I went down to 1 injection every 2 weeks now and dropped from 4 1,200mg Mezavant (mesalazine) pills to 2 last week, or if this may be an episode of IBS which I've been told I also have.

I'm also still on the 200mg of Azathioprine and still doing the Salofalk 4g enemas Mondays, Wednesdays and Fridays (this was also changed from daily when I lowered the Mezavant dose last week) and in fact I was great during last Saturday and Sunday, solid BM's and no issues, come Monday I didn't feel great, sam today.

I'm not sure what to make of it but of course my mind goes into the negative part of is this still working?

What do you reckon?

Thanks
1Wish
Posted 4/20/2022 3:07 AM (GMT -8)
I wouldn't have dropped any of the other meds so fast. Can you go back up on the mesalamine until you are in a sustained remission?

Sometimes foods can cause gastro issues, or even just an ordinary 24-48 hr intestinal bug.

It's too soon to tell if it's stopped working. It's a great sign that you had such an immediate response. It can be increased to weekly shots if needed, but I think you just need a little more time to tell if that would be necessary. The biggest challenge I have had to overcome with UC is patience .... we all want meds to flip a switch and get us back to normal right away. Unfortunately, they don't usually work like that.

If you continue to feel like you are back sliding, check with your doc about possible increasing to weekly shots.
Posted 4/20/2022 5:05 AM (GMT -8)
Thanks CCinPA, are you referring to re-increasing the oral or rectal meds? I feel that even though I reduced the oral dose, its still a good 2,400mg.

I was previously doing rectal enemas, max oral mesalazine dose for over a year and a half with not much luck. It has definitely been the Humira that has helped me improve.
Posted 4/20/2022 5:26 AM (GMT -8)
I was referring to this:
"I'm not sure if its coincidence that on the 11th I went down to 1 injection every 2 weeks now and dropped from 4 1,200mg Mezavant (mesalazine) pills to 2 last week"

Since you saw a change after you dropped from 4 to 2, maybe go back up to 4 and see what happens after a few days.
Posted 4/20/2022 6:09 AM (GMT -8)
I agree with upping your oral mesalamine. You could also up the enemas (or increase both).
Good luck.
Posted 4/20/2022 8:49 AM (GMT -8)
When I started Adalimumab I too had a good response initially then a big step backwards which lasted about a fortnight if I remember correctly but then I began to make progress again.
For me the fortnightly injections never seemed to get me to remission, it got me really close but not quite there. Just recently I've gone to weekly injections and so far so good it seems to be working.
Posted 5/21/2022 2:02 AM (GMT -8)
Hi everyone,
I've been on Humira now for a couple of months. Bi-weekly injections. I stopped bleeding literally 2 days after my first initial 4-dose and to be honest I had been feeling better every week, normal solid BM's, no urgency or any other symptoms. Felt completely normal again!

To my shock today though, I went to the bathroom and although it was solid, there was quite a lot of blood, blood covering the BM.

Of course this has brought me down in a serious way, I'm now doubting everything again and can't wrap my head around why this would happen now all of a sudden after feeling amazing for the last couple of months.

I am also still on 200mg of Azathioprine daily which just adds to the stress because this is a combo therapy yet I've just bled a lot.

I have been off the Salofalk enemas now for a couple of weeks as per my docs advice after tapering down to 3 times a week after being on them previously (before Humira) for a good year or so.

I'm confused and worries right now. Can bleeding sill happen every now and then? Does this mean the meds are starting to not work?

The only thing I did out of the ordinary yesterday by the way was go go-Karting. I seriously doubt that has anything to do with it though right? Too much stress on the body maybe?

I'd appreciate any advice you can give me right now.

P.s. external anal fissures has been a thing for a while too now, cant seem to fix that.

Thank you,
1Wish

Post Edited (1Wish) : 5/21/2022 5:44:16 AM (GMT-6)

Posted 5/21/2022 7:20 AM (GMT -8)
I have to wonder if the fissures are what is causing this bleeding? Why not go back on enemas? You can always discuss the possibility of doing weekly injections, however, most likely you will be told it's too soon. I think I remember you live in Spain? Talk to your dr & let us know what he/she suggests.

Try not to get down, I know it's rough.
Posted 5/21/2022 10:40 AM (GMT -8)
Go back on the enemas if bleeding continues and tell your doctor. Sorry. I don't think go-karting had anything to do with it
Posted 5/21/2022 3:27 PM (GMT -8)
Definitely not the fissures because these are external around the opening of the anus and are more like paper cuts, there was no blood on the toilet paper but there were blood covered BM’s.

I’ve gone back to the enema tonight and will do it every 2 days until I speak with my doc.

I don’t get how being on Azathioprine + Humira this is happening now 2 months later when things appeared to be going great.

Is it possible the Humira is not in full effect yet after 2 months?

I’m surprised something like rectal meds are even needed being on 2 immunosuppressive medications… this concerns me a lot.

1Wish
Posted 5/22/2022 5:14 AM (GMT -8)
I had a blimp like that after beginning Humira.
I had a good initial reaction for about a month, then a week or so of loose, bloody bms then back to good again. I think I even posted here about it.
Posted 5/22/2022 5:50 AM (GMT -8)
A lot of people have to treat both ends this is not uncommon.
Posted 5/22/2022 11:29 AM (GMT -8)
Hopefully it will only be a bump also and I get back on track. For now I'll be doing the salofalk enemas every other day which is likely what my GI would suggest anyway.

I actually have a Calprotectin test tomorrow and since I usually take a few samples leading up to the day in case I can't go on the morning of the test.

Would it be better taking in the one from the same time I saw blood, today where I didn't see blood or a fresh one if possible tomorrow morning?

1Wish
Posted 5/22/2022 12:01 PM (GMT -8)
Calprotectin is generally higher first thing in the morning (as it's had time to accumulate overnight) So I always try to get a sample from the first poop of the day for a "worst case scenario". Having done these for a while, I also find a difference in the results if i used a salofalk the night before or not (i.e. it's lower when I used salofalk) so again for worst-case scenario I do it the morning after I haven't had a salofalk.
Posted 5/22/2022 12:48 PM (GMT -8)
That's interesting because my GI always mentioned that the Salofalk the night before does not affect the result.
Posted 5/22/2022 8:45 PM (GMT -8)
I'd drop off the most recent sample. I think Humira can sometimes take 3 months to fully kick in, if I'm remembering correctly. It sure sucks if you still have to use the enemas despite being on the other drugs, but maybe you won't have to forever. I'm really glad I don't need them anymore after 13 years of needing them, a lot of that time daily.
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