prednisone withdrawal and joint pain

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bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 7/1/2008 9:45 AM (GMT -6)   
I've been completely off Prednisone for almost two months now.  I had some occasional, mild joint pain even as I tapered, but nothing I couldn't manage.  In the last two to three weeks it has blossomed into constant, all over joint pain.  Standing up hurts my knees, shoes make my toes ache, putting on or taking off a bra is misery, swinging a purse over my shoulder or putting a phone to my ear makes my elbow scream.  I felt this way, although not quite this bad, last fall after 6 weeks or so off of Pred.  At the time, I was led to believe that it was a reaction to being off the Pred.  Has anyone else had this kind of reation?  Is it truely the Pred that has caused this problem, or was it maybe masking arthritis symptoms?  I'm scheduled for my next Remicade on Thursday, and I've got really mixed emotions.  I'd love for the joint pain to ease up, but if it does, does that mean it's the Crohn's doing it to me, and not the med?  As much as I'm not enjoying this, I'd rather believe it's a temporary reaction that will fade than another symptom that I may have to deal with long-term.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2120
   Posted 7/1/2008 9:50 AM (GMT -6)   
Isn't that also a side effect of Remicade? I haven't been on it yet, but I thought that's what I heard. Could also be joint issues from Crohn's all on it's own. It's hard to say, but I'd make sure and bring it up with your doc. Whatever is causing it, I sure hope it goes away soon!

I'm down to 10 mg of pred, and I get minor aches and pains. I think I'm just paying more attention to every day aches though, since I know I'm tapering down.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 10 mg *eek*, Asacol, Questran, Toprol XL (for high blood pressure).


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 7/1/2008 10:07 AM (GMT -6)   
I don't think after being off Pred for two months already that it is the cause of your pain still. I think Jen77 has a good point and maybe its the Remicade either causing it or could be because your due for another dose soon. I would talk to your GI about this.
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.


Veronica Ballerina
Regular Member


Date Joined Nov 2007
Total Posts : 67
   Posted 7/1/2008 11:38 AM (GMT -6)   
Hello, have you been on pred for a long time? When I stopped taking Prednisone after 6 - 8 weeks I had terrible joint pain, I am also taking Remicade, but I do not believe it is from it, my GI Doc, said it could be yes from Pred, I did a test, I took 5mg of pred and the pain have pratically disappeared. I still have joint pain, but they are not so bad anymore.
Veronica Nunes - 27 years - Brazil


LBJ
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Date Joined May 2005
Total Posts : 511
   Posted 7/1/2008 11:42 AM (GMT -6)   
Like Nanners said, I don't think after 2 months you should be in that much pain from the pred. I'm tapering down too and have been on pred in the past and never had joint pain like what your describing. But we are all different too. So I would definitely talk to you GI about it.
I was on Remicade in the past too but I only had 3 treatments before it landed me in the hospital. I hope you find out the cause of your pain soon!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 25mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
                           Wellbutrin
No Surgeries
 


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 7/1/2008 11:42 AM (GMT -6)   
I have joint pain but got worse when I started the pred 2 weeks ago, on 35mg now along with Humira biweekly. My knee has a shooting pain every now and then and I rememebered it from the last time on Prednisone and also get charlie horses (muscle spasms). I am really hoping as I taper it goes away soon. Who knows between meds and the disease and aging it all combines I think.
Tough times don't last long, tough people do!


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 7/1/2008 11:43 AM (GMT -6)   
I have joint pain but got worse when I started the pred 2 weeks ago, on 35mg now along with Humira biweekly. My knee has a shooting pain every now and then and I rememebered it from the last time on Prednisone and also get charlie horses (muscle spasms). I am really hoping as I taper it goes away soon. Who knows between meds and the disease and aging it all combines I think.
Tough times don't last long, tough people do!


Julia Hill
Regular Member


Date Joined Mar 2008
Total Posts : 488
   Posted 7/1/2008 11:57 AM (GMT -6)   
I went through this also, and was diagnosed with remicade induced lupus. I stopped the remicade and was put on prednisone and only then did the joint pain subside. My rhuemy has done special blood work on me every 6 months for 1 1/2 years since this happened and only last month did my DNA come back neg meaning the ana and ena were positive for drug induced lupus (side effect of remicade). Just reading your post brought back terrible memories of the pain. I hope you get some relief soon.

Julia

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 7/1/2008 1:03 PM (GMT -6)   
It's worth mentioning to my doctor, but I'm not too concerned about this being Remicade induced.  I had the same problem last fall when I came off the Pred, and that was long before I started Remicade.  The joint pain went away within 48 hours of going back on Pred, which makes me wonder if it's a withdrawal symptom or an inflammatory symptom that was suppressed by the drug.  Whichever, I'd like to find a way to deal with it that doesn't involve going back on The Evil Drug.  I'll wait it out if I must, but so far it only seems to be getting worse, not better.

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 7/1/2008 7:15 PM (GMT -6)   
Bektold-I had the same thing happen when I went off pred. It was about 1-2 months later that my knees and hip were just so stiff and sore.  I went to my GP for something unrelated and told them about it--ending up having an x-ray and diagnosed with arthritis. HOWEVER, the prescribed a NSAID that I never filled and within a couple of weeks, the soreness, pain and stiffness completely dissappeared.  I don't think we'll ever hear a medical doctor admit any of this.  I believe it was a prednisone withdrawal symptom and who knows what this drug really does in our bodies??  Hopefully your pain will clear up soon :)

AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Canasa suppositories 1000mg, as needed
 


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 7/1/2008 7:52 PM (GMT -6)   
Babs- I'm glad to hear it cleared up for you- I hope it does the same for me!  My guts are doing pretty well right now, but it's kind of demoralizing to be hobbling around like somebody's grandma!  (I'm only 33.)  I didn't even have the energy to go to my pilates class last night, and I know that would have helped me.  I just couldn't do it.

Banjonut
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 7/14/2008 9:16 AM (GMT -6)   
I was diagnosed with Crohn's at the age of 55 after suffering with bleeding for months before.  After the first year, the low level drugs I was taking had to be increased because my condition continued to get worse (a couple of hospital stays involved).  Once I was put on Asacol (1600mg/day) and Prednisone (30mg/day), the bleeding stopped.  But I experienced a flare up that put me in the hospital about 6 months ago.  I had Azathioprine (Imuran) added to my drugs (100mg/day).  After a few months I was doing so well, the doc had me taper off the Prednisone at -2.5mg each week.  Once my Pred. got down to about 7.5mg/day I stared experiencing "some" muscle aches in my feet, hips and knees.  The lower the steroids got, the stronger the aches in my joints which grew to include my shoulders, elbows, wrists and fingers and somewhat in my upper spine area.  Thinking it was just coming off of the Prednisone after being on it for a year, I waited before going back to the doctor.
At first I thought I was coming down with Fibromyalgia because the symptoms are very similar.  However, after reading everything I can read on this (from people with much the same drugs that I have been on), it does seem that the Azathioprine is the likely culprit.

The Prednisone kept my existing ulcers from bleeding and the Asacol and Azathioprine (Imuran) have kept new ulcerated incidents from occuring. Twice before using Azathioprine when I tried coming off of the Prednisone, I experienced bleeding and those associated problems.  After about 4 months of being on Asathioprine, I was able to phase out Prednisone with no recurrence of bleeding, etc.  "If" it weren't for the severe aches in my muscles/tendons around my joints, I would feel great!
I am not sure if this will continue as long as I keep taking the Azathioprine.  I am using Vicodin (Hypercodone) as needed to get through the pain.  I typically have to take 1-2 tablets at a time and as many as 3 or 4 per day.

My family doctor was unfamiliar with Azathioprine and the side effects like those I am experiencing.  And my gastro. said he had not seen patients experience this level of joint aches/pains after coming off Prednisone.  (We both feel that Prednisone was masking or hiding the pain until I came off of it.)  Nevertheless, he wants me to stay on the Azathioprine to avoid my coming out of remission.
 
For now I'll keep taking the Asacol, Azathioprine as prescribed and take the Hypercodone as needed to get through the pain.  I am hoping the joint pain will eventually subside or even go away.
 

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/14/2008 7:38 PM (GMT -6)   
Hi I got off the pred. 3 or 4 months ago and now I am having elbow pain and some finger joint pain as well as find it hard to get up off the couch at times. I never had this much problems before . I did take Rem. and Imuran last year . I don't know what is causing it either. lol gail

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 7/14/2008 8:28 PM (GMT -6)   
I saw my Rheumatologist today, and she wants to switch me from Imuran to methotrexate.  I'm not over the moon about the whole self injection thing, but if it's either going to treat the joint issues or solve a side effect issue I'm willing to try.  At first she suspected I'm not at a high enough Remicade dosage, but after reviewing the records that's not the case.  I feel like without the Pred my GI symptoms are only under marginal control, and the cumulative joint pain is miserable.  (No one joint hurts that bad, but all of them hurting together is wearing me out.)  I too feel the Pred was masking the joint problems.  And I can't live the rest of my life on Pred, so we're going to have to do something else.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/15/2008 6:31 AM (GMT -6)   
Wishing you good results and hopefully that will make the difference you need to releave the discomfort. lol gail

chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 7/29/2008 8:41 PM (GMT -6)   
Hello,
I had UC (aggessive UC) and was on prednisone for 1 1/2 years and they said I was steriod dependent so I had surgery Feb 25th and they removed my entire colon. about a month or so after surgery and being off prednsione, I started having aches in my elbows and fingers then my knees, hips feet. I am now 5 mths post op and like 4 mths after being off prednsione and I still have joint pain - all the time. I am unsure if it is better but I know it is not worse. I have not gone to the doctor to get checked out because I am enjoying being off med's but I am still praying that it is just a prednsione withdraw symptom that will eventually go away. So, keep me posted on how you do.
Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.

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