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Imuran/Prednisone, confusion, frustration,....

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Posted 9/26/2011 5:30 PM (GMT 0)

Hi all,

OK, bit of a saga, but here goes.

After I was diagnosed with CD in March, it was finally brought under control a few months later through 40mg Prednisone per day. At that stage my GI started me on Imuran as the (hopefully) long term solution with a very gradual weaning off of the Prednisone as the Imuran built up in my system.

(Aside: I did end up in emergency early on because of a reaction to the Imuran and possibly confusing instructions between the GI and the pharmacy. I am a big guy at 250lbs so my Imuran dose was 250mg/day. The instructions I received were 100mg/day for a week then up to 250mg/day. Well a few days into the higher dose I started to get severe alternating sweating/chills and unstoppable shaking. At first I thought it was a really nasty bug but it got so bad that I went to emergency who said they thought it was a side effect of the Imuran).

Back to the main plot!

After stepping up the Imuran dose slowly to 200mg/day I decided to stop there after my previous nasty experience. By now I had substantially reduced my Prednisone level. However, I was finding that even at that dose my CD was well under control and I felt better than I had for a long time.

Then the problems started.

As I weaned off the Predisone totally I started to experience some growing side effects. First, I noticed increasing joint and muscle pain, particulalrly in my hips, shoulders and neck. I also started to find that my CD was getting less under control and some of the dreaded symptoms were starting to return.

Right now I see two possible causes:

1) The Imuran was never really doing anything and the CD benefits I was experiencing were a result of the Prednisone alone. Now that I have stopped the Prednisone the symptoms are returning along with joint pain either from Predinsone withdrawal or as a side effect of the Imuran. OR

2) The symptoms I am now experiencing are 100% due to the after effects of stopping Prednisone. Not only is this causing me inflamation in my joints but possibly also in my intestines as well.

I am still hoping that it is 2) above and at some point the Prednisone effects will wear off, although I am getting less hopeful as the effects seem to be getting worse not better as time goes on (I've now been totally off Prednisone for 4-5 weeks).

I am due to see my GI later this week and really don't know what he will suggest. He might say that the Imuran isn't working and I need to go up to the next step of Humira or Remicade which I would prefer not to do at this stage. Or, he might say I should try the full 250mg/day of Imuran as per his presciption.

Has anyone else experienced anything like this? I have read about the side effects of Imuran and have also read of the after effects of stopping Prednisone but don't know how long before these should wear off.

Thanks if you have read this far.

Cheers,

Graham

Post Edited (Canuck Guy) : 9/26/2011 11:33:54 AM (GMT-6)

Posted 9/26/2011 5:59 PM (GMT 0)
Imuran can take 4-6 months to reach full efficacy. I believe the joint pains you are suffering are from weaning off the Prednisone. Things in the joint pain area usually improve in a week or two, but can sometimes take longer depending on the person. Could be you maybe weaned off the Prednisone too quickly. Maybe going back onto it for a bit, and slowing down the wean will give the Imuran more times to kick in and allow you to slow down the wean process so you are not suffering so much joint pain. Also just fyi, many of us suffer with joint issues related to our Crohns. I know I also suffer with osteoarthritis and fibro along with my Crohns. Also there are blood tests that can be done to see if you are on the correct dose for you of Imuran. Just a thought!! And welcome to Healingwell by the way:)
Posted 9/26/2011 7:52 PM (GMT 0)
Is your GI aware of your ER visit?

Sounds like you were on some level of prednisone for about 6 months?

I had a similar schedule, starting last October. Was on some level of steriods for about 6 months. After weaning off, I started having pain in my hips, leg muscles, and some of my joints. It hurt to get up and down off the floor to play with my kids. I had weaned off steriods at the same time as starting Humira. This sort of joint pain is a possible side effect of Humira, but can be (and was) ruled out via blood test.

My doctor said it was steriod withdrawal side effects, that I could go back on a low dose of steriods, and re-wean, but it would just delay the inevitable side effects in her opinion. I can't remember how long she said that the side effects could last, but they stuck with me for about 3 months, with some occasional weaker pain persisting into a 4th month. The 3rd month was definitely better than the first month, but I recall those first two months being fairly painful. Just sitting at my desk for 30-45 minutes at work, and the first few steps to get up and walk around would hurt.
Posted 9/26/2011 9:58 PM (GMT 0)
Hi Gail, thanks for the information on the Imuran kick in time and the Prednisone effects; it has certainly been more than a couple of weeks off the Pred for me but I guess we are all different.

Hi Clonehead, it definitely sounds as if we are/were in similar situations except for the follow on medication being transitioned to from Prednisone. I was in fact on Prednisone for about 9 months altogether as my family doctor put me on it before my GI diagnosed CD for sure via a colonoscopy 3 months later. Your description of the pain/difficulty getting up after sitting is EXACTLY what I am experiencing; I feel like I am 94 rather than 54....

Yes my GI does know about the ER visit. I think it was caused by a miscommunication between him and the pharmacy on the Imuran prescription instructions as he was surpriised I had jumped from 100mg to 250mg in one step and said I should have stepped up slowly. However, the instructions on the pill bottle specifically said to make the jump so that must be how they read his prescription.

The more I hear of experiences that great people like you share on here, the more I am inclined to just tough out the joint pain for another month or two and perhaps even try and upping the Imuran to the prescribed level. I will discuss with my GI on Weds but will suggest this as the aproach I would prefer unless he has strong objections.

Thanks again,

Graham

Post Edited (Canuck Guy) : 9/26/2011 4:25:30 PM (GMT-6)

Posted 9/28/2011 6:47 PM (GMT 0)
I'd definitely mention it to the doctor. Everyone's doctor has different approaches, and even different treatment plans for different patients given their individual history. But yes, our stories do sound similar, and I hope it is just a steriod withdrawal because if that is all it is, it will eventually wear off.

I know what you mean about feeling older than your years. Turning 30 didn't bother me. 35 didn't bother me. But I had my 37th birthday during my flare and joint pain issues, and I felt like I was 87.

Good luck with your doctor appt today! Keep us posted on how it went.
Posted 9/28/2011 11:07 PM (GMT 0)

OK, so I met with the GI and went through what has been happening.

The bottom line (no pun intended) is that he thinks it is too early to tell if what I am experiencing is caused by coming off the Prednisone or the Imuran not working on my Crohn's. If it is the latter then it will mean a jump to either Remicade or Humira as the next step.

As he didn't want to take that step unless it was mnecessary, he wants to wait 4 weeks to see how things are at that time.

I feel happy with that approach.   

Thanks,

Graham

Posted 9/29/2011 3:03 AM (GMT 0)
Prednisone didn't work for me and wreaked havoc on my joints, so bad that i couldn't sleep. Ultram ER 100 mg once in AM and once before bed. Couldn't believe the difference in the joint pain! Also, Entocort 3 mg/3x day. It's a steroid and more than 85% is absorbed in the colon, so none of the nasty side effects like the moon-face, insomnia, acne, etc. that you get with the pred. Suggest it to your doc if you'd like to get off the pred. I was on the Entocort for over 2 years, takes about 3 weeks to kick in but i had no side effects.
Posted 9/29/2011 12:30 PM (GMT 0)
When I first got diagnosed, I was on 40mg of Pred for almost a year. Everytime I tapered off of it and for several weeks after that, I would have the most horrendous pain in my knees and legs. I think it took a long time for it to go away completely.

Also, with the Imuran I remember when I started the first time I didn't have many side effects since I tapered up from 25 to 100 with a few months before each jump. I did get really tired, but didn't have any ill effects. I restarted it about a month ago straight at 75 and I'm EXHAUSTED and my hair is falling out. There's a possibility that a big jump like that can cause some changes in your body chemistry as its getting worked out. But to let you know, I don't remember arthritis being a side effect of Imuran.

Also, something to think about is a blood test from Prometheus. It checks the amount of good/bad metabolites and whether or not they're in the theraputic range. Though I think you need to be on the med for the 4 months that it's needed for fulll potency. I'm having one done at the 4 month mark, to make sure everything's kosher. Only thing that sucks is that it's not usually covered by insurance.
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