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Posted 11/19/2017 3:32 PM (GMT 0)
I had UC for almost 20 years, was on and off Pred, and recently had jpouch surgery. My second surgery was two weeks ago and since then, my joints have been really painful. It started with my hips and now it's my knees, feet, ankles, and hands (my thumbs and knuckles). I was thinking it was just side effects of coming off pred, but I was off it over 6 weeks ago. I shouldn't be feeling it kicking in now.

I was on Vitamin D, B12, and Iron before my surgery bc I was low (bc of the UC), and I started it back up after the surgery. Maybe I don't need it and it's causing this as a result? Today I stopped all of them.

It's gotten so bad that when I get up from sitting down, getting out getting out of the car, or getting out of bed, I have to stand for 5-10 seconds to get my body ready to walk. I'm only 37, so I don't think it's an age thing. It got so bad last night just rolling over in bed, that I told myself I'm calling my doc. Could it be arthritis or something as a result of being on the pred? Any suggestions?
Posted 11/19/2017 4:01 PM (GMT 0)
My withdrawal was worse 4 weeks after my surgery. It was really bad, I couldn’t sit for very long and had a hard time getting out of bed.

I think our experience are different than most UCers because we were on high doses of steroids for a long period of time, then we had surgery and tapered very rapidly. Most UCers taper much slower because they still have IBD symptoms, surgery eliminated our symptoms so we got off of Prednisone too quickly.

Maybe try going back on steroids and see if your pains go away, then taper slower.
Posted 11/19/2017 6:46 PM (GMT 0)
Ugh, it sucks right? I did experience nausea, dizziness and headaches that my gastro attributed to withdrawal symptoms. So I figured if I’m over that, then I should be over this too, no?

Unfortunately I’m not interested in going back on prep for any reason, it’s just horrible. Thinking of maybe making an appt with my primary care physician?
Posted 11/19/2017 7:03 PM (GMT 0)
I think that I mentioned in one of your surgery threads that withdrawal was the worst part of my surgery experiences.

I ended up taking sulfasalazine that I had a script for, it is also an arthritis drug. I’m not sure that it helped but around that time I started to gradually get better.

A small dose of steroids could help with the withdrawal but not give you the side effects of the higher doses.
Posted 11/20/2017 12:32 AM (GMT 0)
I came off Prednisone nearly a couple of months ago and I am seriously struggling like yourself. I need help getting out of a chair..the pain in my feet is shocking..once upright I shuffle around for a bit and then i can walk, but it takes a couple of minutes.

I am unable to tie my shoelaces or pick anything up off the floor. Its bad; real bad but i wont take a low dose pred. I do kinesiology and this confirmed it is definately the Prednisone so try not to worry as i read it will get better but it takes time.

If anyone went through the same can you let us know how long it took you before you started to get better.
Posted 11/20/2017 4:00 AM (GMT 0)
So sorry you’re going through the same thing. But it does make me feel like at least it’s not just me! How long were you on it most recently? And what dosage?

I’ve been on it longer when i was in my 20s but it hit me hard this time for some reason. I was on anywhere from 40-60 mg from Feb- May and then tried to taper, unsuccessfully. I stayed between 20-40 until my surgery in late Aug and didn’t taper completely until the end of Sept/early Oct. 9 months isn’t long, for me, but my body sure disagrees!

From reading other posts it may even take a few months to get better. I may give my gastro doc a call and see if he has any suggestions. I’ll never get my strength back post surgery if i can’t walk without pain!
Posted 11/20/2017 2:28 PM (GMT 0)
You can always see an endocrinologist to see if your Adrenal glands have returned to their normal Cortisol production since ceasing pred. Pred is synthetic cortisol, and as we taper off pred the normal cortisol production should resume. It doesn't always happen. An endocroligist can test your body's cortisol levels, and see if they are normal or not. If not, assist in waking back up your Adrenals and resuming normal cortisol production.
Posted 11/20/2017 3:49 PM (GMT 0)
In our experience gastros really don't know about prednisone tapers and their advice for relatively quick tapers may work for people who are on it short-term, but not long term.

When my husband went off prednisone, slowly according to the GI, he had terrible symptoms and went back on prednisone and saw an endocrinologist. She treats people who lose their colon and taper too quickly. Her view is that with a proper taper you will not experience terrible withdrawal symptoms (which is what it sounds like you may have). But it takes time. They will put you on hydrocortisone which is in your system shorter term than prednisone so they can regulate it to simulate typical adrenal activity, and it is easier for them to test adrenal function.
Posted 11/20/2017 3:58 PM (GMT 0)
There are other steroids that with restart your adrenal functions without the prednisone side effects. I forget which one they gave me for the 1st time that I had withdrawal about 10 years ago. I told my GI that I couldn't go on Prednisone again, he called up his friend who is an endocrinologist who treats anabolic steroid users and got me the correct script. It helped a lot and I didn't have those nasty side-effects. I wish that I could remember the name of it. I think it started with a D, like dexa- something.
Posted 11/20/2017 5:31 PM (GMT 0)

Doggiedo said...
So sorry you’re going through the same thing. But it does make me feel like at least it’s not just me! How long were you on it most recently? And what dosage?

I’ve been on it longer when i was in my 20s but it hit me hard this time for some reason. I was on anywhere from 40-60 mg from Feb- May and then tried to taper, unsuccessfully. I stayed between 20-40 until my surgery in late Aug and didn’t taper completely until the end of Sept/early Oct. 9 months isn’t long, for me, but my body sure disagrees!

From reading other posts it may even take a few months to get better. I may give my gastro doc a call and see if he has any suggestions. I’ll never get my strength back post surgery if i can’t walk without pain!

I was on Prednisone for 13 months, which is a long time. The dosage varied, latterly it was high (60) when I was admitted to the hospital. I wont take anything, I am just going to ride it out, but I think your situation is a bit different, having just had surgery, you need to move around a lot and so I think I would see someone in your shoes. I am sorry you're having to deal with this as it is very painful on top of everything else that you have been through..
Posted 11/20/2017 7:13 PM (GMT 0)
I have recently started Azathioprine (this is third week I am on it) and am weaning slowly (2.5mg/wk, currently at 15 mg/wk) off pred. Starting a few days ago I started to feel like total crap, slightly nauseous, everything hurts and I am completely fatigued and brain fogged. My hips hurt and shoulders, and now elbows are starting. I wake up in pain at night. We need to find something to make us feel better! I messaged my Dr this morning and they are going to do bloodwork to see if I am having problems with the azathioprine. In the meantime I am going to take some Tylenol. I feel like I have been clubbed from behind with a 2 x 4 and then someone jumped up and down all over me.

Post Edited (tiredofallthispoop) : 11/21/2017 6:24:16 AM (GMT-7)

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