off prednisone a week/on humira but think a flare is coming

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countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/2/2018 3:55 PM (GMT -7)   
Hi All

I just started my 7th week on Humira and weaned off of prednisone last Tuesday 12/26. This past Friday I started with some urgency and since then have been gassy and gurgly with more Bm's. I have not seen blood but this past flare did not start out with blood. I have no appetite and had gas and cramping that woke me up last night. Today I felt the same way and have had 2 Bm's with urgency. I know that doesn't sound like much but I was eating well and having 1 solid bm per day till the end of the prednisone wean and a few days afterward.

Secondly, I have been extremely depressed and cried all weekend . I cannot get a handle on my emotions and realize that weaning the prednisone is part of that. I scared myself because I felt like I wanted to die. I see a counselor but it's not that helpful. My GI doc doesn't want me to restart prednisone and wanted to see if Humira would kick in. I know many of you have it worse but I can't eat so I am not functional. I guess I have to give Humira more time?? My doc said it either works or it doesn't. I was thinking of trying Lexapro but also afraid of adding another drug into the mix right now with everything going on.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15676
   Posted 1/2/2018 4:18 PM (GMT -7)   
I am sorry you're concerned about flaring. Firstly, I think you should consider taking something for the depression if your doctor recommends it. Sometimes everything can hit at the same time, and it's easy to fall into a downward spiral, that's the last thing you need on top of the stress about a flare up. Definitely speak to someone if you're feeling depressed. Regarding Humira, people's results are varied. Some people have quick results, some slower, but after 7 weeks, you would probably notice positive improvement. It doesn't mean you would be 100%, but you would likely be headed in the right direction if you are going to. It's possible you could add something more to the Humira to get it to work better, like 6mp or imuran. Do you have an appointment to see your GI? I would make one sooner than later. It's better to have options and not need them, than to wait and wish you had called. Are you on rectals?
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
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Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 437
   Posted 1/2/2018 8:27 PM (GMT -7)   
It's probably too soon off the pred. to tell if you're lack of symptoms has been due to humira or the pred. Hoping it's the humira! Until my 7th entyvio infusion (which are 8 weeks apart after the 3 loading doses), I was having slight breakthrough symptoms as it got closer to the next infusion date. I used uceris foam and canasa suppositories during those times. Now that I'm mostly symptom free, I still am using canasa suppositories as the last colonoscopy biopsy in Sept. showed an area of microscopic active colitis. Dang colons take a LONG time to heal, plus I would imagine that whatever is causing the UC is still happening, but the meds are fighting against the symptoms only, not the cause, so seems reasonable to say that there's always ongoing stuff of some kind going on in there.

Wishing you luck, and seconding the adding of an antidepressant. I went on zoloft during the last flare because I was so depressed about dealing with UC and all its symptoms.
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/3/2018 7:34 AM (GMT -7)   
Thanks for responding and the support. The Humira had to be working as it got me off of prednisone in the first place. I was flaring at 15mg prior to starting Humira and effects of Humira kicked in 3 weeks after starting it. I think I am going through prednisone withdrawal as well with nausea, leg cramps and extreme anxiety. I am looking into getting in with a psychiatrist to help with that. I am just still feeling unsettled and have to wait and see if Humira can hold its own. I am continuing to use Balsalazide and Rowasa as well.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 228
   Posted 1/3/2018 7:57 AM (GMT -7)   
Hang in there Countess, you're only 7 weeks in. I saw some improvement at week 6, but was still flaring. I didn't feel the full effect until week 12 and then my colonoscopy showed some lingering inflammation and I went to weekly. With regards to the depression, if you think it's the pred then maybe you could hold off a bit, but if you think it's the disease causing the depression, which is highly likely, I would give Lexapro a try. I don't think I have it in my signature but I take 10 mg per day and it has helped immensely. I hope you start feeling better soon!
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira weekly
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/3/2018 8:53 AM (GMT -7)   
Mrs B

Did Lexapro give you any worse GI symptoms? I have heard it can cause transient diarrhea. I know it has helped my friend who has severe anxiety.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 163
   Posted 1/3/2018 7:36 PM (GMT -7)   
I was wondering how you were doing. I am sorry you are going through so much. I was so pumped when I started feeling better, and now it feels depressing to have more issues with Prednisone wean. It feels like having two diseases, UC, and prednisone. My Dad told me this morning that his GI doctor told him that every drop of Prednisone can activate some symptoms for a week to a week and a half. That helped me not worry quite as much. Then, I suppose there is the adrenal stuff once pred is completely stopped. My first time on Pred I took licorice root at the end, and I did pretty well. I am hoping it helps this time even though I have been on much longer. Hope you can get some relief!
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, 40 mg pred, waiting on Entyvio due to reaction Humira. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 228
   Posted 1/4/2018 6:24 AM (GMT -7)   
Hi Countess, I have been on Lexapro for about 15 years, prior to my UC issues. I don't recall having any issues with my GI system at that time. It doesn't seem to bother my UC but as with UC, everyone is different and after UC who knows how one will react. Sorry, wish I had a better answer for you.

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/4/2018 9:01 AM (GMT -7)   
Thanks Spring and Mrs B

My doc said it was ok to go back to 5mg of prednisone and take a slower wean down to 0 to allow more time for the Humira to fully work. I made an appt with a psychiatrist and will discuss which med to try. I think I set these high expectations and was doing so well GI wise while weaning the prednisone that it felt like a huge let down when I felt flare symptoms again.

Spring I agree that Prednisone itself felt like a separate disease esp. when on the higher doses. I am probably suffering from menopause emotions in combo with the prednisone wean so I am a mess.

Interestingly enough the 5mg for a day or 2 has already helped. My doctor told me that there is no way 5mg would have decreased any type of inflammation so quickly. The hospital pharmacist told me that my symptoms including the abdominal pain may have been attributed to prednisone withdrawal. I don't know what it is but I am TRYING to get it together.

thank you so much.. this forum is part of my healing

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11281
   Posted 1/4/2018 9:32 AM (GMT -7)   
When coming down the pred this time, I would recommend 1-mg pills for drops. Alternate your dosages day-to-day. For example, do 5-mgs one day, 4-mgs the next day, 5-mgs the next day, 4-mgs the next day and then stay there. That's helped some folks in the past. Up and down a bit seems to coax the adrenals awake again, reduce withdrawal, etc. Worth a try at least, that and smaller drops are usually helpful for most.

Oh, 5-mgs definitely has an affect! Craziness they'd say otherwise.

If this doesn't work then see an endocrinologist. In the end, gasteroenteroligists are clueless on the adrenal system, and hormones like prednisone. Endocroligists are the pros on hormones and adrenals, and in their mind, you should never feel withdrawal when pred is done correctly!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Does the 5-second-rule apply to soup?

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/4/2018 2:32 PM (GMT -7)   
ok thanks.. doc agreed to the 1mg tablets. I get concerned about osteoporosis which I already have but I don't know what else to do.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/11/2018 5:20 PM (GMT -7)   
I know I keep posting but I like all of your advice. I am on week 8 of Humira (just did a shot today) and have some mild flare symptoms this week with urgency pain and today saw a little blood. I am still on 5mg of prednisone and now afraid to wean. I know others say it takes time i.e. up to 12 weeks but I am getting a bit concerned about still being on prednisone and the left sided pain. I sent a message to the GI. I sure hope Humira works for me. My GI kept telling me I have relatively mild disease and that it would work quickly. UGH!!!!!
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15676
   Posted 1/11/2018 5:32 PM (GMT -7)   
Don't stress. You're down to 5mg, staying there for a little while isn't the end of the world. I say take your time, go slow with your 1mg tablets, and start to taper when you feel like the humira is at max benefit. If you don't respond, there are other options, but it sounds like, given your mild UC, you will respond. Some people do better on remicade since you can increase the dose & it's weight based, but I wouldn't go crazy worrying. Give yourself time. Why did you stop using the rectals and everything else? most people take multiple medications. Do you notice decreased symptoms immediately following the shots? Some people do shots more frequently if it wears off, but it sounds like you don't feel confident about it working since you can't stop the pred. I think you just need to think positive and stay steady for the moment. It takes some people longer to have results.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/11/2018 6:35 PM (GMT -7)   
NSSG thanks so much for calming me down. I am still taking the Rowasa and Balsalazide. I think the symptoms decrease several days after the shots and I seem to have flare symptoms the week the shot is due.
Yesterday I saw a psych doc and he ordered Mirtazapine for depression/sleep/anxiety etc. I was a little concerned because there was a 2013 article regarding Mirtazpine/Remeron and Cdiff so thats another worry but doc says there is no causal effect.

thanks again
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

Mak37
New Member


Date Joined Jan 2018
Total Posts : 17
   Posted 1/11/2018 10:17 PM (GMT -7)   
If you’re giving yourself the shot bi weekly try to ask your doctor if you can do it weekly instead. It sounds like the humira is wearing off too soon. Usually if they get you into remission by doing that then they will change it to bi weekly again.
Dx with severe pancolitis with appearance of Crohn’s at 7, now 20
Taking humira bi weekly for 3 months, lialda 3x a day 1.2mg, prednisone 40mg, calcium and vit D. Flaring since 2015

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15676
   Posted 1/12/2018 9:00 AM (GMT -7)   
I agree with Mak. If the symptoms are returning too soon, you could consider weekly injections. It's not uncommon.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
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