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Posted 5/30/2017 6:25 PM (GMT 0)
Its been a little bit since I've had a question. Still use this great place for info and advice.

Well twice now I've tried to taper from 30 to 25 without success. 40 to 30 wasn't much of an issue. I've had a total of 6 Humira shots now and start bi weekly single doses this week. I had 2 great days last week in a row so I thought Id taper down to 25. Nope. I did 25 Sunday and even halved a half to be above 25 yesterday and still got woken up last night with urgencies. Upon waking today I went back to 30 cause the day was starting off with pain. What in the............

Maybe I just haven't given the Humira enough time to overpower the need for Pred? I am just so ready to taper because of this humungous, evil, eat like my husband appetite.
Posted 5/30/2017 6:27 PM (GMT 0)
What if you alternated between 25 and 30 for a while? that helped me stay stable below 10 mg.
Posted 5/30/2017 8:32 PM (GMT 0)
How often are you doing the humira shots? I'd say humira isn't working enough yet. The humira shots can be done weekly...
Posted 5/30/2017 9:12 PM (GMT 0)
Hi Mom2boys - id love to alternate between 25 and 30 but cant even get to 25 without symptoms increasing. I guess I should also be completely honest, with myself, that at 30 I still deal with some symptoms but they really increase if I go any lower.

Hi Ipoop - my shots are every 2 weeks. 1st was the 4 loading, 2 weeks after was the next 2 loading and then this Thursday is a single. I'm getting real impatient -can you imagine that?

Doc did mention at last visit that he may need to do a sigmoid to see what else is going on since I seem to be stuck. I've had some weird flutters in my gut area, kinda hard to explain, but last time I had flutters I was preggers and that is medically impossible now.
Posted 5/31/2017 11:45 PM (GMT 0)
Or maybe go down on the pred 2.5 mg every other week? My doc had me on a taper- 60mg, 50mg, 40, 30 until 20 mg..and then was a slow taper by 2.5mg each week. I got down to 5 mg and had to bump back up to 20mg but it was working for a while.

Alternating days is a good idea. Have you run this by your doc?
Posted 6/1/2017 6:40 PM (GMT 0)
Hi Doggie
Just had my Humira shot. The nurse, from Abbvie, said within the next 2 weeks I'd see a lot of improvement. I'm going to hold off on trying to taper again until this shot kicks in - and I also see the doc next week. I am really wanting to be done with this steroid but I have to be more patient.
Posted 6/1/2017 8:34 PM (GMT 0)
Sounds like a smart plan. Good luck!
Posted 6/20/2017 6:59 PM (GMT 0)
Welp, had a sig done about 2 weeks ago and there has been no change to the UP ulcerations/inflammation, not even a little bit, since colonoscopy in March.
I'm being referred to a specialist in Chitown for an expedited appointment. My Humira levels are good and I don't have antibodies to it but there has been no improvement after 8 shots, Daily 100 mg of 6 mp, Canasa twice a day and pred. At today's appointment the GI wanted me back up to 40 pred and I had a sh**fit because every 2 week appointment I'm packing on the pounds but at today's appointment I hadn't gained so he said to stay with the 25 until I see the Specialist. Hello big fat puffy moon face.
Was supposed to go on a 2 week vacation soon, wanted to go back to work, wanted.......normal life. (I know you all that flare for months and months get this for sure). I just keep thinking - next month, next month, next month....now I'm past 6 months. I guess I really have been in denial - either that or my fairly optimistic personality has been keeping me afloat. Not so much today.
suck a duck
Posted 6/20/2017 7:04 PM (GMT 0)

iPoop said...
How often are you doing the humira shots? I'd say humira isn't working enough yet. The humira shots can be done weekly...


I asked about this at today's appointment. The response was basically since I have had zero change that upping the dose wouldn't help - but - since I'm being referred to one of the leading specialists in our state, I will definitely ask again when that appointment happens.
I'm having anxiety just thinking about that darn Chicago traffic. Better take a box of Imodium for that roadtrip.
Posted 6/20/2017 8:11 PM (GMT 0)
Has there been any improvement at all on Humira since you started it in May? You can certainly ask about weekly and also about trying another biologic, likely a different class of biolgics entirely like Entyvio, Stelara (off-label), or xeljanz (off-label). Of those, entyvio would be the easiest to get a prescription for, as it is currently approved for the treatment of UC (the others are not). In my mind, having no antibodies to humira, and no clincial response from it, likely means you've failed the tnf-alpha blocking class of biologics (almost futile to try remicade or simponi), thus the other types of biologics were suggested.
Posted 6/20/2017 9:56 PM (GMT 0)

iPoop said...
Has there been any improvement at all on Humira since you started it in May? You can certainly ask about weekly and also about trying another biologic, likely a different class of biolgics entirely like Entyvio, Stelara (off-label), or xeljanz (off-label). Of those, entyvio would be the easiest to get a prescription for, as it is currently approved for the treatment of UC (the others are not). In my mind, having no antibodies to humira, and no clincial response from it, likely means you've failed the tnf-alpha blocking class of biologics (almost futile to try remicade or simponi), thus the other types of biologics were suggested.


Thanks for your response, Ipoop
The improvement has been so slight, I may have dropped a daily bathroom visit or two. Blood is a big concern because I deal with that daily. After reading my reports when I got home today I can understand the blood part better because there was a comment made that "at the touch Patient bleeds."
Well expedited appointment as in tomorrow. This is good but it didn't allow me enough time to get my slides to take, only the reports, but I have my book of them to take with.
Oh and thank you for what you wrote about the tnf blockers and that I may have failed. He did mention all of that today but once I found out I was being referred on I was pretty much wrapped up in thought with that. He basically said what you did that I have probably failed the med and that upping it wouldn't help.
I really do appreciate your advice/idea's. They are always helpful.

Post Edited (gozalot) : 6/20/2017 4:12:55 PM (GMT-6)

Posted 6/20/2017 11:03 PM (GMT 0)
I just thought of something. could be just a fairly newbie to long term flare situation - but - my psoriasis is completely gone! So the 6mp or the Humira cleared that up, so if its the Humira does that mean I should be responding to it for the UP, also? I've been on steroid creams for a few years and all they did was maintain the psoriasis, not improve. 1st time in probably 10 years I'm completely clear!
Posted 6/21/2017 12:06 AM (GMT 0)
Humira is a psoriasis treatment. Working for one condition has no guarantees of working for the other. I believe stelara is also a psoriasis treatment. Entyvio isn't.
Posted 6/21/2017 9:14 PM (GMT 0)
Darn, was hoping if Humira worked positively for one autoimmune condition it would automatically work for the other.
Interesting appointment. Truthfully, much of the info I received today I already knew from researching on this site, web and articles.
Adding an enema - I know, it's about time, right? He didn't seem too surprised that Uceris didnt work for me. More blood work to possibly up the 6mp to 125 or 150, depending how that all works may add in an antibiotic and possibly the weekly shot of Humira. I did acknowledge after the 4 loading doses, then the 2 loading 2 weeks later,that I felt I was getting somewhere, it was when I started the biweekly that I have felt stuck with zero progression.
More wait. That's ok I guess - par for the course.
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