In Remission with Severe Joint Pain

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New Member

Date Joined Jul 2008
Total Posts : 12
   Posted 8/10/2008 9:55 AM (GMT -7)   
I am in remission from Crohns and have changed my meds over the past 2 months.  It has caused me severe and disabling joint pain.  I simply cannot function without pain medication.  All of my joints from my toes, feet, ankles, knees, hips, shoulders, elbows, wrists and fingers are affected!  My Gas. Dr told me that he didn't think it was the withdrawal from prednisone or continued use of Imuran that was causing the problem based on the fact that he had never seen anyone with symptoms as severe as mine from either of those.
Personally, at first I thought it might be a side effect of the Imuran that I continued to take after the Prednisone.  (I have been off Prednisone for 6 weeks after being on 30mg/day for 10 months.)  I thought the prednisone was simply hiding the side effects of the Imuran.  So with my Dr's instructions, we stopped the Imuran a week ago to see if the joint pain would stop.  It has not stopped.
Now I am wondering if my joint pain is being caused by withdrawal from the Prednisone and not the Imuran.
I am 57 and was only diagnosed with Crohns 2 years ago.  I want to continue working until I am 62, but I don't think I can make it if this joint pain continues.  I have to take a vicodin every four hours and even then it hurts to walk or get in/out of a chair.  Without a pain pill I have to stay in bed and bear the pain even then.
Has anyone else experienced anything like this?  The only other drug I am taking is Asacol.  But, I have been taking that since the onset of Crohns two years ago and it never seemed to give me any problems.  Which most likely to be causing my joint pain, the prednisone withdrawal or the use of Imuran without the Prednisone?

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 8/10/2008 10:14 AM (GMT -7)   
Hello Banjonut. I'm sorry you are experiencing such pain! It is so debilitating!! Can you tell us how you got off the meds, meaning what taping schedule did you use?
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 8/10/2008 10:40 AM (GMT -7)   
Is it possible that the GI tapered you too quickly off of the Prednisone? Or, could the Prednisone have been masking pre-existing inflammation? Just a thought..... Blessings, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 8/10/2008 11:41 AM (GMT -7)   
There are a number of reports of joint pain from Imuran. See:
I don't know what the process is that causes the joint pain, but it might possibly be reduced by taking vitamin E if it is from an immune system inflammation due to IgE.

New Member

Date Joined Jul 2008
Total Posts : 12
   Posted 8/10/2008 2:12 PM (GMT -7)   
Sorry, I failed to include "how" I came off the steroids.
From 30mg per day, I decreased my daily dosage by 2.5mg per week.  So, I don't think that was too fast.
I started having pain and stiffness around my joints during the final 3-4 weeks of my prednisone.  I thought it was probably a normal occurance to have "some" discomfort when coming of steroids and it probably is.  But, since the time I was completely off of the Prednisone I have been experiencing a condition making me like a very aged person.  If I stand too long, it aches my joints and I have to sit down.  If I sit or lay down too long, I have to get up but it is very painful to do so.  My joints do not want to flex...just ache...and then give me pain when they are under an otherwise normal stress.  Without a pain pill I just can't function away from home.  Normal body movements by going to work, shopping or even church are currently tolerable with a pain pill, but definitely not without pain suppression.  Most fortunately, I have an administrative position that requires no physical labor beyond walking or doing whatever I need to do to stretch and try to help alleviate any pain.  But even this I don't think I can endure much longer if this condition doesn't clear up.
Again, I am off steroids and have now been off Imuran for about one week to see if that might help also.
I am scheduled to see a rheumatologist in three weeks as that was the earliest I could get an appointment.  I have my own doubts that he will be able to help because I simply do not have rheumatoid athritis.  At least that is what my primary physician's blood test have shown.
Being off today on Sunday, I have pushed myself to NOT take but one pain pill this morning.  It has been about 8 hours now and today is better than the previous few days.
I am SOooo hoping that it does prove to be the Imuran.  I am NOT recommending people avoid Imuran!  It is the only thing that stopped new occurences of my chrons disease.  However, now that I am in remission, I may be able to stay off of it long enough to isolate that as a culprit in MY case.  (Everyone has their own sensitivities to different things.)
Thanks in advance for any tips and/or comments.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 8/10/2008 2:22 PM (GMT -7)   
Hi Banjonut,

You are requiring a lot of pain meds and I am wondering if you need to wean of the steriods even more slowly -- but I am certainly NOT an expert in such things. I am not saying you don't need the pain med -- I fully support taking what you need! -- I just think that level of pain is not something you should tolerate. Can you get an appointment with your GI very soon? I'd demand to see him/her because this doesn't sound normal! I remember my sister being scolded by her Doc because she suffered needlessly for weeks as she waited for her next appointment. He said she should have called.

I'm hoping others with more experience will chime in soon. Take care of yourself.
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  No other symptoms.
Allergic to Remicade and Humira.  Currently on 6MP.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/10/2008 6:21 PM (GMT -7)   
Hi I too have developed a pain condition . What caused it I don't know but I was on pred. and Imuran .After getting off them I now have about what you describe and sometimes if I get down on my knees I find I don't seem to have a lot of strength to get up. I take a tylenol but not often . I need to go to a Dr. sometime I guess to see what is up but have been coping. Sure hope you find out what is going on. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Regular Member

Date Joined Jul 2008
Total Posts : 440
   Posted 8/10/2008 7:01 PM (GMT -7)   


I understand what you are going through! I am 41 and was diag with CD in 2005 after a hysterectomy, an appendectomy 8 weeks later, followed by a re-section in the small intestine of 18 inches that CAME APART after surgery!!! followed by a week in ICU and a great bout of C-dif. 10 months later I had to have a hernia surgery to fix how poorly they put it together! And all in the Mayo Clinic state! Can you believe it?

Anyway, my GI put me on prednisone for a year in 2006 with a  tappered down that was pretty slow...but when it was totally out of my system I had joint pain terrible! I too was on Imuran/Asacol at the same time.  I felt like my GI doctor didn't care about my joint pain. He'd ask me if I told my primary physician about it. I have to be physical and on my feet at my job. Finally, got an appointment with a Rhuem...he thought I had Reactive Arthritist. Which I guess means after a severe auto-immune outbreak this happens as a secondary problem. I don't know. He set me up for Remicade. Then when my GI doctor got wind of taking Remicade he said no! He wanted to wait till things were really bad with me. Really BAd....what does that mean? I had lost 40 pounds and felt like death. The pain took about 2 months to get better. I missed alot of work and felt like crap! Cried alot. But, now 2 years later  I'm in another bout of Joint pain for about 2 months now. They come and go. I'm frustrated. Now, my GI doctor says to take glucosamne? The whole word GLucose makes me nervous. And now reading about levequin and Cipro on this web site makes me wonder if I'm not experiencing effects of an Antibiodics that I've been off and on throughout. Some days I feel like I need an advocate just to deal with my disease. I joined this to hopefully gain knowledge. I don't know if this will help you or discourage you. Sometimes it just helps to know your not the only one.



New Member

Date Joined Jul 2008
Total Posts : 12
   Posted 8/11/2008 6:47 AM (GMT -7)   
Sorry you have really been through so much.  For someone to suggest glucosomine to you is to say they don't know what they are talking about as far as the pain associated with your (our) situation.  It has nothing to do with joint deterioration which is what all that shark cartalige stuff is for.  Test will undoubtably show that your joints look just fine.
You mentioned about Cipro or other antibiotics possibly contributing.  I personally don't think so because I have taken several rounds of those for the CD and never had any joint problems with that one or any others.
From the responses to my inquiry thusfar, it certainly seems like the prednisone is the most likely culprit.  I kind of hope so since at least there seems to be light at the end of the pain-tunnel once I go through a certain length of time.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 8/11/2008 6:56 AM (GMT -7)   
I recently did a quick 10 day burst of Pred to stop a flare, which it did. But the following week after getting off the Pred my hips hurt so bad and everytime I got up from a sitting position it was like someone stabbed me in my hip area. It took alot of pain meds and about 10 days to 2 weeks but it did get better. Hope that helps some.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

New Member

Date Joined Apr 2009
Total Posts : 2
   Posted 4/4/2009 9:44 AM (GMT -7)   
My daughter suffers from Behcets disease and is treated with high doses of prednisone.  We swear that there is withdrawl from prednisone but the docs say no.  Hope you start feeling better soon.  My daughter is suffering from severe joint pain, nausea and just feels horrible all the time.  Presently we don't know if it's the Behcets or the drugs that are to blame.  Hang in there...I have friends who have Crohns and it's awful.  You're not alone.

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 4/4/2009 3:47 PM (GMT -7)   
When is your joint pain worse? In the morning, before you wake up or later at the end of the day? These could indicate what is the culprit behind your issues. Joint pain that is worse in the morning may be an extraintestinal manifestation of Crohns and your prednisone, as stated previously, could have been helping with this...
Hope you get to see the Rheumatologist soon, they are usually very good with deciphering the type of inflammation (Inflammatory types such as RA or Crohn's, OA, Reactive Arthritis, etc.)
"The earth laughs in flowers"

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 4/4/2009 6:47 PM (GMT -7)   
I had to taper 2.5 mg every week off a dosage of 60mg prednisone daily for 6 months. Around the last 2-3 weeks of prednisone I kept hitting a wall in that my flare kept coming back. I had to stay on the 2.5mg for an additional 3 weeks and then the joint pain hit! I saw a Rhemy and he diagnosed me with the osteoporous and fibromyalgia. The Fibromyalgia I had always thought was a knockoff diagnosis when they couldn't find what was wrong. I was wrong! The Rheumy put me on Tramadol (Ultracet) for the Fibromyalgia and Glucosamine. Tramadol is a pain reliever that I can not get through a day without, exactly as you describe your pain levels to be. It is not a narcotic either. The osteoporous is being treated with Citrical Calcium Supplements, Vitamin D (prescription strength) and Reclast infusions once a year. Having said all this, 3 weeks is a long time to have to wait to see the Rheumy but unfortunately that is usually how it is. I believe your problems came from the prednisone. I have been on Imuran for 3 years now and have never had a joint problem from that. It does give me migraines and I had some nausea at first, however, I take it at night now and it doesn't bother me a bit anymore. I would also suggest taking your temperature every hour for a couple of days making sure you don't eat/drink anything hot/cold within about 1/2 hour prior to taking your temp. I found out when my joint pain & fatigue was at it's worse I was running a low grade temp which amplified the joint pain as well. Low grade temps are common among some of us especially those taking Imuran. It is also not uncommon to develop other auto-immune diseases after being diagnosed with CD. We wish you luck in getting relief soon and please post your results so that it will help others.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.

New Member

Date Joined Jul 2008
Total Posts : 12
   Posted 4/4/2009 8:51 PM (GMT -7)   
My apology for not posting since my last post of July 2008.  At that time I had just completed the step-down of 2.5mg/week of prednisone such that I was off that drug.  I had been on prednisone for almost a year to curtail ulcerated bleeding in my colon from Crohns.  The prednisone was the only thing that worked, so I had to use it.  When my condition went into remission in April, 08, I spent the next few months stepping down to get off of it...and must step slowly off prednisone.  In fact, the longer you are on it the slower the step-down should take.  I found this out through personal experience.  Here's how it went for me.
First, I am glad that prednisone was available as it truly was the only thing that curtailed the bleeding.  Granted the azothioprine was needed to stop my autoimmune system from causing new ulcerated spots.  But, it was the prednisone that inabled the bad spots to stop bleeding and mostly just scar over.
After being on 30mg/day of prednisone for about 8 months I was found to have diabetes.  This was so bad that I had to do the daily monitoring and injections.  Fortunately in my case, withing a couple of weeks of getting completely off prednisone, my pancreas "came back" and started producing normal amounts of insulin.  My blood sugar went completely back to normal and has stayed that way.
Starting during the last week (down to 2.5mg per day) and continuing after being off prednisone, my joints began absolutely killing me.  It hurt to sit.  It hurt to stand.  It hurt to walk.  It hurt to turn over in bed.
After two months of taking 4-6 vicodin pills per day to enable me to hobble into my office job, I finally went to a rheumatologist.  Until then I had been bouncing back and forth between my gastroentrologist and my regular family doctor.  Neither of them seemed to understand the reason I was having such pain.  The rheumatologist told me he knew all about my pain because prednisone is also used with his patients for arthritis.  He told me that for "his" patients that have been on a 30mg/day dose for that long (close to a year), he takes them down at about 5mg/month (break that down per week).  He said decreasing at 2.5mg/week was too MY case.  He said the joint pain would start getting less and less.  That was encouraging since I had been suffering for over 2 months.
So, I carefully continued using pain pills as needed.  After about 4 months, my family doctor wanted me to switch to a slightly lighter pain pill...darvocet (darvon).  And even then, he tried to limit me to 30 pills per prescription and expected that to last for 30 days.  I tried my best to get by on that for about 6 weeks and then said the heck with it.  I went back to the rheumatologist.  He said that my condition could easily take more than a year to get over...maybe longer.  He gave me new prescriptions.  One prescription is for Ultram-ER (ER= extended release...Ultram is the same as Tramadol) which I take one in the morning with an extra strength Tylenol.  The other prescription was for 500 darvocet pills with up to 5 renewals.  He said that I should only take them as needed, but he expected that would cover me for about six months.
With my condition ever so slowly getting better, on "good days" I am able to get by with only 2 darvocet pills.  On "bad days" I may have to take 4 pills.  Darvocet is so mild that there has actually been much medical discussion about just taking it off the market.  I can tell you that the idiot medical people that are asking for that just don't realize that Crohn's patients cannot take things like aspirin or ibuprophen.  It makes our colons bleed.  Vicodin (for med to severe pain) and Darvocet (for mild to med pain) do NOT make the colon bleed.  I hope that neither are ever done away with because they do have a useful purpose.  And with personal commitment to controlling the usage, dependency is practically a non-issue...especially with darviset.
Today, 9 months after being off prednisone, I can stand and walk for extended periods of time, with the help of a darvocet about every 6 hours.  I can really tell that my joint pain is going away...very very slowly...but it is going away.  I believe the rheumatologist was "spot on" with his analysis.
I have been off all other medication for my Crohn's for about 10 months with the exception of asacol.
I hope this helps anyone else going through a similar situation following prednisone use to understand their joint pain and what they "might" expect. smilewinkgrin

Post Edited (Banjonut) : 4/4/2009 9:54:32 PM (GMT-6)

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 4/4/2009 8:57 PM (GMT -7)   
Becoming undone is spot on with his/her question. If your pain is worse upon awakening in the morning and eases as you get moving around, then it is likely a manifestation of the Crohn's. Spondyloarthropathy [also called enteropathic arthritis] is quite common in those of us that have Crohn's. My guts have been in remission for about 3 years but my arthritis is out of control. A rheumatologist is your best bet in getting to the bottom of your joint issues. My GI is a great guy but my rheumy is the one that has gotten me able to move again.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

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