Joint Pain - Please Help!! :-(

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Lisa E.
Regular Member

Date Joined Jun 2008
Total Posts : 47
   Posted 5/18/2009 9:28 PM (GMT -6)   
Well, this is a new one for me.  Has anyone else experienced crippling joint pain?  I cooked a beautiful dinner last night and felt wonderful.  My UC is finally slipping into remission (or so I thought).  about an hour before I went to bed, my joints started to hurt.  My son has a virus, so I thought I might have been coming down with something and expected to wake up with a fever and chills.  Instead I woke up in unbearable pain. 
Every joint in my body hurts, starting from my toes to my shoulders.  It is sensative to the touch.  At one point, the pain was almost unbearable.  I went to the doctor and he said it was UC related and put me on Methylprednisonol (sp) for six days.  They wouldn't stop until they gave me those steroids.
I know joint pain is a side effect, but is it usually this severe and debilitating?  My fingers and calves are so swollen.  My fingers are almost gnarled looking.  It hurts to type.  I could hardly make it up and down the stairs.  I'm so darn confused.  I need an "expert" opinion.  Has anyone else experienced this???  Right now I feel like the Tin Man looking for his oil can.
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.

Elite Member

Date Joined May 2003
Total Posts : 30213
   Posted 5/18/2009 10:47 PM (GMT -6)   
Hi...I don't have that experience, but I truly feel for the pain you're going through. I remember when my sister's arthritis in her hands started, she was in agony as well with the changes happening.

I would suggest you see a rheumatologist as soon as possible to address the reasons for the arthritis, whether it be UC-related or for whatever reason.

I hope you feel some relief soon.

*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 5/19/2009 8:43 AM (GMT -6)   
I've always had some sort of joint pain over the years. I even went into the doctors on several occasions but nothing every showed up and it was chalked up to me flaring with my Uc. Then I hit remission and instead of the joint pain getting better, it got worse. It started really in my knees, then my hips, now it's in my fingers and back. It was when I hit remission and started to having an increase of pain that I realized that something wasn't right. I've have had every test under the sun but nothing has shown up (yet). But now the pain is on both sides of my body as opposed to one like it was before. I know I have arthritis, what kind - I'm not sure. I'm leaning toward RA but honestly I just don't know. So it's very possible that you are experiencing your first arthritic flare up. I agree that maybe you should go see a rheumatologist. If it is arthritis, the earlier you can catch it, the less damaging it can be on your joints.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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Serenity Now
Veteran Member

Date Joined Jan 2009
Total Posts : 2077
   Posted 5/19/2009 9:00 AM (GMT -6)   
I had some joint pain when I was taking Asacol, but it wasn't nearly as bad as what you are describing! Sounds terrible, I hope something can be done for you.
ack, 42, Vancouver BC
DX: UC (Pancolitis) as of Jan2009.  Symptoms first began June 2008.
Current Meds: Ferrous Sulfate, plus various supplements
Previous Meds: Jan-Mar 2009: Asacol 800 mg (1 pill x 4 daily), stopped Mar14/09. 

at wit's end
Veteran Member

Date Joined Jun 2007
Total Posts : 565
   Posted 5/19/2009 5:52 PM (GMT -6)   
I've had some joint pain on and off at different times throughout my colitis, and I've had colitis for over 22 years, I am having pain  in my knees and elbows right now, with tenderness also, along with calf cramps, have had for about a month or two now on and off. I am very stiff when I get up in the morning.

Diagnosed with left sided UC in sigmoid colon and rectum 1986.
Put on Azulfidine 2 X 3 a day and Rowasa enemas 60mg.
Have been pretty much in remission overall other than a few flares over the past 21 years.
Medicine changed to Asacol 400mg 2 pills X3 times a day. Taken off all meds in 2004.
Diagnosed with acid reflux 2005. Put on Protonix 40mg.
Have been using Canasa 1000mg suppositories nightly since January 2007.
Was put back on Asacol 400mg 2 pills 2X a day in July 2007 maintenance. 

Regular Member

Date Joined Sep 2007
Total Posts : 365
   Posted 5/19/2009 8:00 PM (GMT -6)   
I remember back in the late '90's (wow I have had this too long) going on a business trip to Chicago... We ate lunch out on the pier and I remember not being able to keep up with the group because of severe knee pain... I had to stop frequently and was very slow walking... I was told it was related to my UC and flaring at the time. It happened on and off for a few years... It hasnt bothered me lately, but to be honest with you I still have dreams about trying to walk places but can't do it because of knee pain.... It was very painful and relentless, and I am glad that it has subsided for now....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided UC, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"

Regular Member

Date Joined Feb 2007
Total Posts : 385
   Posted 6/4/2009 1:21 AM (GMT -6)   
again this isn't a diagnosis but you may want to look into fibromyalgia or chronic fatigue syndrome. they run hand-in-hand with UC.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.


Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.

Regular Member

Date Joined Oct 2008
Total Posts : 27
   Posted 6/4/2009 1:42 AM (GMT -6)   
Yup, I get joint ache, in my toes and particularly in my back. However this eases after I have been up and about for an hour. This is currently my only UC symptom. I am hoping, now that I have ditched Aziathropine for LDN that all the extra endorphins floating around in my system will easy the discomfort.

It is recommended that exersize is used to counteract the aches and to prevent damage. I am a great believer in rigorous exersize to combat chronic conditions like UC, RMA and asthma. I run 10 km every other day and go to body combat, body pump, yoga and step classes at my gym each week. My GP tells me that this has helped my pains and my asthma too.
DX Sept. 2008 aged 45. Moderate / Severe pan UC; Prednisolone tapering from 80 to 20 mg; Asacol worked well, but stopped after hepatitis. Azathioprine 100 mg since November 2008. Prednislone tapered off. Surgery hinted at. Azathioprine increased to 150 mg 21.01.09 with predifoam included for 2 weeks. February 2009. Colonoscopy indicates mild UC, left side only. May 2009 no UC symptoms except joint ache. LDN 3.5 mg from 30.5.09. 4.5 mg from 30.6.09. Probiotics, Aloe Vera, zinc, copper, peppermint oil, a low GI diet, high roughage and a protein supplement since DX.

Veteran Member

Date Joined Mar 2009
Total Posts : 765
   Posted 6/4/2009 2:17 AM (GMT -6)   
Im sorry about your joint pain. I did have knee pain after my last flare. It took two months to go. Have you jumbed onto the chrones board they may be able to help. Ive seen this often on the chrones board.
Female 32 years old
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity

Regular Member

Date Joined Jun 2009
Total Posts : 173
   Posted 6/4/2009 2:23 PM (GMT -6)   
I've had terrible joint pain at times with my UC. It went away on its own, not sure what triggered its appearance or disappearance. During my last bout with it, I couldn't walk up and down stairs and my husband had to make all the baby bottles because I couldn't screw or unscrew anything. Then we bought a minivan with power doors to help me cope and after that my arthritis went away... So just go spend a lot of money on a special arthritis minivan and you should be all cured!!
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