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In "remission" but miserable?!

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Crohn's Disease
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Posted 12/8/2015 4:57 PM (GMT 0)
Hi all,

I really just want to vent my frustration with this stupid disease and my messed-up body.

I am on Humira and just finished a 3.5 month long course of high dose prednisone. I am in clinical "remission" in that I don't have major GI symptoms right now.

But I am still feeling miserable! I am exhausted all the time, my lower back is killing me (to the point that I am walking funny), I have random other aches & pains, a rash on my neck, and a scalp problem that my dermatologist swears isn't from Humira but just mysteriously appeared 2 months after I started Humira.

I am 27 years old but I feel like I have the body of a 50 year old! I'm also dealing with the anxiety of waiting for my GI symptoms to return after finishing prednisone - I just got off a week ago and I know I COULD stay healthy, but I'm so scared that I'm going to wake up sick again one day.

Just venting... thanks!
Posted 12/8/2015 6:35 PM (GMT 0)
How fast was your taper for prednisone? I know that quick tapers always make me feel really crummy for a while after. By quick, I mean 5 mg every 5-7 days.
Posted 12/8/2015 7:31 PM (GMT 0)
My taper was slow in the grand scheme of things but did get kind of fast in the end... I was on 60 mg for 8 weeks, then 50 for 2 weeks, 40 for 2 weeks, 30 for 2 weeks, then I started getting some pretty serious/scary side effects so I tapered from 30 down to 0 over 3 weeks... a week at 20, a week at 10, and a week at 5.
Posted 12/8/2015 11:10 PM (GMT 0)
That is still kind of fast, actually. It feels like forever during it, but every single one of my GIs has had the rule of thumb be going down only 5 mg every 7 days, maybe 5 days if you're feeling up to it. I would go down 10 mg until I got to 30, then go down 5 a week. So yours is a bit fast, especially considering how high it was to begin with and that you were on that high of a dose so long (eight weeks at 60 mg is a long time!). So I would imagine that a lot of your feeling crummy is from tapering and going off of it.
Posted 12/10/2015 6:34 PM (GMT 0)
I agree with scifi that is fast.

At this point you can ride it out, or go back to a stable dose, and taper slowly.

I don't think you are in any actual danger, but you are going to be very uncomfortable for a while with loads of anxiety. What you really need is rest, and you will have trouble getting it until your adrenal glands stabilize.
Posted 12/13/2015 6:23 AM (GMT 0)
For real! I finally found someone who feels the way I do. I am 21 and i feel aa though i am in my 70s at least. I am in so much pain some days i wish I wasn't even alive. Every time I go to the ER, however, my blood work shows no high inflammatory markers (I have crohn's) and they tell me I cannot possibly be in pain because I am in 'remission." It makes no sense because the stomach cramps are so agonizing that they put me on my knees! I also have this constant pain everywhere on my body like you do. the main parts that hurt the worst are my back, my ribs, and my stomach. Its ridiculous! I feel you sweetie. Its like how can THIS be remission??! I'd hate to see what a flare feels like... So you are on humira? I was on Remicade but they stopped it because they told me it was the reason the rest of my body hurts so bad. Cleveland clinic told me I developed a 'lupus-like' syndrome from it! How sad. So maybe the humira is making your pain worse? Just a thought, but I know these diseases are supposed to hurt. Anyway, just wanted to let you know you are not the only one and I can't believe I found someone else who has this problem too. I truly hope you begin to feel better hun, as I know from experience this is no way to live. Take care
Posted 12/24/2015 9:41 PM (GMT 0)
I'm in a similar situation but i just chalk the fatigue and nausea to the Crohns. Humira helps a lot but it isnt a cure, the Crohns is still there. I try to get a lot of rest and take a good amount of b complex vitamins and vitamin D, that seems to help. Tylenol, and heating pads help with the joint and abdominal pains too. I'm trying to move to a warmer climate too as these darn winters are not helpful either. Hope this helps a bit but stay mentally strong and try to deal with these symptoms as many others do, you are not alone!
Posted 12/29/2015 3:31 AM (GMT 0)
This was me too. Even though my GI symptoms would occasionally subside, I never gained weight and always felt tired with joint pain. I take a lot of anti-inflammatory supplements, like bromelain, reishi mushroom, tumeric, PharmaNAC, Vit C & D but the thing that truly worked was AMAT (Atypical mycobacteria antibiotic treatment.) It all went away about three months after starting AMAT. There is all the info here: TheCrohnsInfection.org. This type of research truly gives me hope that we will see great things for Crohn's patients in 2016. Hope you all find relief and healing in this new year.
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