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Remicade levels low and antibodies present

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Posted 11/15/2019 1:48 PM (GMT -7)
My doctor told me to wait until I get my Imuran test results back before starting the Humira, so I guess I have to wait a few more days.
35 years old; diagnosed UC March 2007 (couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since 12/25/16 until I started smoking again in 2018 after 9 yrs quit. Re-quit smoking. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Started Remicade 7/25/19. 50 mg pred 10/29/19.
Posted 11/16/2019 8:01 AM (GMT -7)
Imuran enzyme test results came back today and were normal, so I guess I can do my Humira today afterall. I really hope Imuran doesn't make me throw up. I hate throwing up!
35 years old; diagnosed UC March 2007 (couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since 12/25/16 until I started smoking again in 2018 after 9 yrs quit. Re-quit smoking. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Started Remicade 7/25/19. 50 mg pred 10/29/19.
Posted 11/16/2019 9:14 AM (GMT -7)
I never vomited but I did get nauseous on Imuran. It was better when I took it at night because I slept through the worst of it.

Best wishes for Humira! I hope it kicks in quickly. It might kick in after the loading doses for you because you likely still have remicade in your system. Fingers crossed for speedy relief!!
60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.
Posted 11/16/2019 10:09 AM (GMT -7)
Thank you! FedEx just dropped off my Humira (they even gave me a cute little sharps container and bandaids. Is it weird I'm oddly excited about this? Lol.)! I think I'm just gonna do it on my own. I don't feel like driving 40 minutes one way to the hospital to ask if the lab people will show me.

I took my first dose of Imuran 2 hours ago after a snack and so far no side effects. I plan to switch to taking it at night. I just wanted to take a dose before the Humira. And yeah, I probably still have Remicade in my system, plus 50 mg of prednisone the past 3 weeks, and now the azathioprine, so really I have 4 immunosuppression agents working on me right now!!! I'm thankful I work from home and can avoid a lot of germs/sick people!! Thanks for the well wishes.

Oh, also, you gotta love when the first thing you see when you open the box is a warning saying "some people have died from taking this medication. Most of them were also on steroids or methotrexate." :/ Lol.

Post Edited (Sara14) : 11/16/2019 10:12:25 AM (GMT-7)

Posted 11/16/2019 10:13 AM (GMT -7)
Did you do the shot yet?
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
Posted 11/16/2019 10:59 AM (GMT -7)
I just did it. That was super easy. I didn't feel any pain or burning at all. After the first shot though, when I pulled the needle out, quite a bit of liquid came out. The instructions say to call Humira if more than a few drops of liquid are on the injection site. Only a drop or two was there with the second injection, so maybe I did something wrong the first time? I waited until the yellow indicator light was finished moving and even a little longer to be safe because I counted to 15. I've never been thankful for my belly fat before but today I am. Lol.
35 years old; diagnosed UC March 2007 (couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since 12/25/16 until I started smoking again in 2018 after 9 yrs quit. Re-quit smoking. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Started Remicade 7/25/19. 50 mg pred 10/29/19.
Posted 11/16/2019 11:39 AM (GMT -7)
Glad it went well. Now - hope it works for you!
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
Posted 11/16/2019 1:14 PM (GMT -7)
Yes! Thank you!
35 yrs old; dxd UC March 2007 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec 2016. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Remicade 7/25/19 (worked 2 months). 50 mg pred 10/29/19. Began Humira & Imuran (150 mg) 11-16-19
Posted 11/16/2019 6:52 PM (GMT -7)
Wishing that Humira brings you a blissful remission.
Diagnosed: Moderately Severe UC in September '11
Currently: Remission per CRP and FCP
Medication: Lialda 4 pills, once daily
Tried Uceris 3/19 for 8 wks, did not put me in remission
Entyvio started June 12, 2019
Supplements: Boswellia, mushroom extracts, Astragalus
Posted 11/17/2019 5:06 AM (GMT -7)
Thank you very much! I'm sure it's too early to have any effect, but I didn't need any pain meds yesterday, and so far today I feel normal (granted it's only 7 a.m. here, lol). Going to start tapering prednisone tomorrow. Been on 50 mg 3 weeks.
35 yrs old; dxd UC March 2007 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec 2016. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Remicade 7/25/19 (worked 2 months). 50 mg pred 10/29/19. Began Humira & Imuran (150 mg) 11-16-19
Posted 11/17/2019 5:16 AM (GMT -7)

Sara14 said...
I just did it. That was super easy. I didn't feel any pain or burning at all. After the first shot though, when I pulled the needle out, quite a bit of liquid came out. The instructions say to call Humira if more than a few drops of liquid are on the injection site. Only a drop or two was there with the second injection, so maybe I did something wrong the first time? I waited until the yellow indicator light was finished moving and even a little longer to be safe because I counted to 15. I've never been thankful for my belly fat before but today I am. Lol.

That happened to me one time and I called Humira and they sent me another pen (after getting an ok from my doc) because I didn't get the full dose. If there was a lot of liquid you didn't get the whole dose. Do you have another pen you can use until they send you another? Or perhaps you can get another pen from your doc? At least give your doc a call and let him know what happened and see what he says. When I did my loading doses it was 4 pens, but I think they do it in just 2 pens now.

When it happened to me I used one of the other pens I had and waited for Humira to replace the mis-fired pen for my next dose. They took so long I had to get a sample pen from my doc's office so I had it for my next shot. I ended up with an extra pen which gave me some peace of mind in case it ever happened again (it didn't thankfully!)
60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.
Posted 11/17/2019 5:24 AM (GMT -7)
Ok, thanks for the info. I called Humira yesterday, but they were closed. The starter dose was 2 80 mg pens. I do have one more 80 mg pen that I'm supposed to use in 2 weeks, but I don't really want to do another one since I have no idea how much of the medicine I did get. I definitely got some because the needle went into my skin. And the second pen went just fine. It may have been user error versus a misfired pen. Lol. I felt like I did everything right, but maybe I just needed to wait a bit longer before pulling it out or maybe I needed to push the pen into my skin harder.
35 yrs old; dxd UC March 2007 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec 2016. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Remicade 7/25/19 (worked 2 months). 50 mg pred 10/29/19. Began Humira & Imuran (150 mg) 11-16-19
Posted 11/17/2019 6:37 AM (GMT -7)
I’m so glad it all worked out for you Sara!

I’ve had some leakage before and my doc’s recommendation has been to not inject a second pen. You’re exactly right, it’s impossible to know how much medicine got in.

I really hope Humira works for you!

Best,
Lisa
Posted 11/17/2019 6:56 AM (GMT -7)
Thank you, Lisa!
35 yrs old; dxd UC March 2007 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec 2016. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Remicade 7/25/19 (worked 2 months). 50 mg pred 10/29/19. Began Humira & Imuran (150 mg) 11-16-19
Posted 11/17/2019 7:10 AM (GMT -7)
Mine were just 40mg pens and the mis-fire was a maintenance dose so my situation was a bit different. With the 80mg pens I'm sure you got plenty of med.
60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.
Posted 11/18/2019 9:12 AM (GMT -7)
Thank you. I just talked to my Humira ambassador. She said it's possible I was squeezing my fat too firmly and squeezed some of the medicine out. That was actually my guess, too. She's going to call me and walk me through my next injection over the phone.

Yesterday and today I feel completely normal (knocking on wood)! It could be the prednisone finally kicking in after 3 weeks on 50 mg, I guess. I dropped to 40 mg today.
35 yrs old; dxd UC March 2007 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec 2016. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Remicade 7/25/19 (worked 2 months). 50 mg pred 10/29/19. Began Humira & Imuran (150 mg) 11-16-19
Posted 11/18/2019 9:46 PM (GMT -7)
I’m usually pretty good with injections, but reading about your experiences has made me feel squeamish! I hope you get everything sorted and feel well again!
Posted 11/19/2019 6:57 AM (GMT -7)
Oh, no, it was extremely easy. I couldn't even feel it. I just didn't get quite all the medicine (probably because I accidentally had a death grip on my fat and squeezed it back out, lol). Thank you. I have felt almost completely normal going on 3 days now! smile Still on a ton of prednisone so time will tell but fingers crossed.
35 yrs old; dxd UC March '07 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec '16. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Delzicol, 6, 2xday; Rowasa. Remicade 7/25/19 (worked 2 mos). 50 mg pred 10/29/19 (Tapering:40 mg 11-18-19). Began Humira & Imuran (150 mg) 11-16-19

Post Edited (Sara14) : 11/19/2019 7:08:36 AM (GMT-7)

Posted 11/21/2019 1:31 PM (GMT -7)
I had like 3 normal days, then I dropped to 40 mg pred and now I'm back to my poops being "compacted," for lack of a better word. I am having to sit and strain to get it all out. I'm still going quite a bit, but it's really weird. And I'm eating a ton of fiber and Metamucil wafers and water and I'm exercising about 30 min most days. And I haven't taken any pain pills in days, so it isn't that, which I thought may have been causing that before. I miss being able to take pred and then get off it and be normal and in remission. My doctor told me the other week that pred doesn't actually fix anything. Then why was I always able to take it, taper right off, and be in remission for 6ish months before...? He also said it does not lose effectiveness over time. Well, that seems like what's happened to me and others on this forum say the same. I hate that I messed up my Humira shot and didn't get the full dose. Hopefully I got most of it.
35 yrs old; dxd UC March '07 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec '16. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Delzicol, 6, 2xday; Rowasa. Remicade 7/25/19 (worked 2 mos). 50 mg pred 10/29/19 (Tapering:40 mg 11-18-19). Began Humira & Imuran (150 mg) 11-16-19
Posted 11/21/2019 1:42 PM (GMT -7)
Prednisone is a potent immuno-suppressant, it ceases/mutes the attack of your immune system. The less of an attack that's mounted, the less new inflammation and damage can be caused. That enables your body to heal itself. The affect from pred depends on the dosage being enough, and the length of treatment being long enough that the immune system attack is shut off for long enough that your/my immune system enters a dormant/quiet state. That way, ceasing pred keeps us into a remission. It's why you want to be 90% or more healed before ceasing pred, and be on pred for 2-months or more. If you stop pred too fast, or are not healed enough the immune system just attacks with renewed vengeance once the pred immuno-suppressant is gone.

Disease progression in extent and severity can mean pred doesn't respond as fast or fully as in the past. Pred doesn't get weaker, rather your UC flare is more potent than in the past. Necessitating more pred.
Moderator Ulcerative Colitis
John, UC Proctosigmoiditis in Remission
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP; nightly Rowasa
100% Invisible illness: just because you feel like crap doesn't mean you have to look like it
Posted 11/21/2019 1:48 PM (GMT -7)
I guess. My UC was so terrible when I first got it though and I didn't even need pred back then, so it feels like the meds stop working, but maybe you're right.

I was on 50 mg for 3 weeks this time (including 4 days on 60 mg). That's a long time at that high of a dose. I know Humira takes a while to kick in, but I thought I could at least start tapering (and dr said I could). Anyway, thank you.

I used to be able to taper it in 5 weeks and be fine. Maybe I shouldn't have started tapering yet. I'm just so worried about bone loss. Im getting another dexa scan in February.
35 yrs old; dxd UC March '07 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec '16. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Delzicol, 6, 2xday; Rowasa. Remicade 7/25/19 (worked 2 mos). 50 mg pred 10/29/19 (Tapering:40 mg 11-18-19). Began Humira & Imuran (150 mg) 11-16-19

Post Edited (Sara14) : 11/21/2019 1:51:38 PM (GMT-7)

Posted 11/21/2019 2:30 PM (GMT -7)
Should I go back up to 50 or just deal with it? Im probably having 5-7 BMs a day but they are what I call compacted, sometimes more on the constipated side but not really because I'm still producing a lot. Sorry tmi. Lol. And Im exhausted.
35 yrs old; dxd UC March '07 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec '16. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Delzicol, 6, 2xday; Rowasa. Remicade 7/25/19 (worked 2 mos). 50 mg pred 10/29/19 (Tapering:40 mg 11-18-19). Began Humira & Imuran (150 mg) 11-16-19
Posted 11/21/2019 2:45 PM (GMT -7)
Are you passing solids or diarrhea? Not sure what compacted means. For reference, bristol stool chart: https://www.webmd.com/digestive-disorders/poop-chart-bristol-stool-scale

Constipation often means rectal inflammation.

Not sure I would go back up at this point, unless you have gotten a lot worse. You can certainly slow the taper rate a little to give humira more time to do it's thing.
Moderator Ulcerative Colitis
John, UC Proctosigmoiditis in Remission
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP; nightly Rowasa
100% Invisible illness: just because you feel like crap doesn't mean you have to look like it
Posted 11/21/2019 2:56 PM (GMT -7)
Solid. Like it looks all pushed together, not healthy or normal. Kinda like number 2 in that chart. What poop would look like if it had been constipated and stuck in there for a while...only it is weird because I am going 5 or more times a day so I dont know why it looks like it does.

Ok, thanks.
Posted 11/21/2019 5:26 PM (GMT -7)
This afternoon I got so exhausted, I could barely work. I went to lie down to take a nap and lied in bed for 3 hours, didn't really fall asleep though, but felt like I got hit by a bus. I felt like i could barely get out of bed! I'm wondering if the Imuran is doing this. Maybe it's unrelated, but I don't feel right at all. Today was my 6th day on it. I'm going to go get bloodwork tomorrow. I felt fine this morning and got enough sleep last night.
35 yrs old; dxd UC March '07 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec '16. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Delzicol, 6, 2xday; Rowasa. Remicade 7/25/19 (worked 2 mos). 50 mg pred 10/29/19 (Tapering:40 mg 11-18-19). Began Humira & Imuran (150 mg) 11-16-19

Post Edited (Sara14) : 11/21/2019 5:32:17 PM (GMT-7)

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