It hurts-am I flaring?

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iluvsunflowers15
Regular Member


Date Joined Apr 2006
Total Posts : 395
   Posted 7/14/2008 7:03 AM (GMT -6)   
Since Friday of last week, my joints have been killing me! It aches and throbs. Its mostly in my wrists, fingers, shoulders, knees, and ankles. I was supposed to have a Remicade infusion last week, but my gyno told me to wait a month since I am on boric acid suppositories for an ongoing yeast infection. I just called my gastro doctor and left a message with the person who usually schedules the infusions. I hope to get an infusion sometime this week. I am going away next week to Disney with my mother for a mother/daughter trip. :) I want to feel good during the trip. Anyway, I don't feel like I am flaring. My uc symptoms have been okay. Only thing is that my bm consistency changes daily depending upon what I eat. I also have some cramps but otherwise feeling okay. Could it be that I am flaring without knowing it? Any suggestions as to what I should do?
 
I plan to call my Rheum doctor later. I am petriefied that he will put me on prednisone. The drug gives me really bad mood swings.
 
Thanks for letting me vent. If you have any suggesitons, I will greatly appreciate it. :)
 
Heather
Colazal 750 mg 3x3 daily
6-MP 50 mg (2) daily
Miralax-when needed
Rowasa-when needed
Been diagnosed with UC for 5 years


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/14/2008 12:00 PM (GMT -6)   
It could be a mini flare. Try hard to eat what you think is healthy. If you don't want the prednisone, just say no way. I am with you on that one. I hope you feel better soon and have a wonderful trip with your mom. What a great memory you will be making!
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 7/14/2008 12:01 PM (GMT -6)   
Do you have the Rowasa and if so, you could start them nightly to see if your symptoms improve.

Regarding prednisone...considering your situation with the infections....say a resounding NO! You have enough to deal with from my perspective

Are you still on the Colazal?
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


iluvsunflowers15
Regular Member


Date Joined Apr 2006
Total Posts : 395
   Posted 7/14/2008 2:46 PM (GMT -6)   
What else can I do to make the pain go away?
Colazal 750 mg 3x3 daily
6-MP 50 mg (2) daily
Miralax-when needed
Rowasa-when needed
Been diagnosed with UC for 5 years


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 7/14/2008 5:21 PM (GMT -6)   
I'm not on Remicade but I've heard a lot of people say that right before an infusion they start to flare, and especially if you're late for it I would think that could have some effect on it.
I definitely understand the joint pain... I went to Busch Gardens a few weeks ago and we were only there for two or three hours because it started raining hard, and my feet and ankles hurt SO bad after that I honestly thought I might need a wheelchair to get to my car! I was in tears hobbling all the way to the parking lot, it was terrible. Not to mention I was soaked and cold.

During one flare when my joint pain was exceptionally bad, I took glucosamine chondroitin and it really did seem to make a difference. I've read studies that say it doesn't help and some that say it does, maybe it was just the pain reliever in it, but I was getting throbbing radiating pain in my lower back and it went away after taking it for a short while.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar region of the spine from long term prednisone use. 

Currently unmedicated and flaring :(
Waiting for my appointment with the new GI on July 18th. Insurance finally kicked in, hooray!

 
 
 


iluvsunflowers15
Regular Member


Date Joined Apr 2006
Total Posts : 395
   Posted 7/14/2008 7:53 PM (GMT -6)   
My rheum doctor called today and wants me to take prednisone for three weeks starting with 15 mg and tappering by 5 mg every week. I have the medication but I am being indecisive if I should take it or not. It gave me pretty bad headaches. Any ideas?
Colazal 750 mg 3x3 daily
6-MP 50 mg (2) daily
Miralax-when needed
Rowasa-when needed
Been diagnosed with UC for 5 years


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 7/14/2008 11:32 PM (GMT -6)   
i've never been on it....but I'd say no.

Maybe you can "bargain" with him and say you'll do it on a fast taper over 10 days....at least it's an option. I believe that type of taper starts at 30 or 60mg...don't know that for sure.

A 15mg dosage isn't high, however...you may still have a difficult time with side effects and getting off it? But if it'll get you to Disney, maybe it's worth a try if it helps your pain.

You're truly between a rock and a hard place...I wouldn't doubt if the stress of all you've been going through is contributing somewhat...maybe you'll feel better once you come back.

Have you had a series of blood tests done to see if there's anything else going on?

Are the boric acid supps helping you?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 7/15/2008 12:25 AM (GMT -6)   
Can you guys explain your joint pain to me? I have had a constant dull left sided pain for a month it hit real hard a couple weeks back that I went to the Er . Now I have a bm everytime after I eat and gas. My gi thinks I have colitis. My concern is I have had pain in my joints/bones sometimes I can't walk because I feel my ankle or feet are crushing other times its a quick pulsating pain to my spine. Pains can last 5 seconds or an hour. Does this sound related to colitis? Going to get bone scan tomorrow.

iluvsunflowers15
Regular Member


Date Joined Apr 2006
Total Posts : 395
   Posted 7/15/2008 12:32 PM (GMT -6)   
King1234 your bone/joint pain sounds pretty similar to what I am going through. I have what you cal a dull ache throughout my body. I've noticed that carrying heavy things, stressing out or "losing it" can make it worse for me. My doctor has said that I need to find better stress management strategies to help my way of lifestyle. I have a hard time walking, especially getting out of bed in the morning. My ankles hurt as well as my elbows, fingers, shoulders, knees, etc. So, it might mean you do have colitis. Good luck with the bone scan. Keep us informed.

Quincy,
Yep, the boric acid suppositories have helped tremendously. Hopefully, a nice vacation with just my mother and me will help my symptoms vanish. My mother is one of the most understanding and compassionate people in my life. she would totally understand if I need a little more time getting ready in the morning due to my stomach woes or if I need to relax for awhile.

I've decided not to take prednisone. My boyfriend and I have discussed this. He gently reminded me of the horrible side effects I expereinced the last time I was on it. I had severe headaches, moodiness, still have achiness throughout my body, and just did not feel well. So, with that being said, I am going to take tyneol arthritis for my aches. It really does work. If that doesn't work, I will take Motrin. Of course Motrin is not the best thing to take due to have colitis but its better than prednisone (I think anyway :D ).

Also quincy, i totally agree that the stress portion does make my symptoms worse. I am going to relax and do what I have to do without having ANYONE bother me. :) Thanks for your advice!

Heather
Colazal 750 mg 3x3 daily
6-MP 50 mg (2) daily
Miralax-when needed
Rowasa-when needed
Been diagnosed with UC for 5 years


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 7/16/2008 12:10 AM (GMT -6)   
It sounds as though you have awesome support from your mom and boyfriend...that's soooo important in daily functioning even though it seems like the problems never end.

It's good the boric acid supps are helping. That in itself can improve your state of being.

I hope your holiday with your mom takes you to a better "place"...

Hang tough....for we can never have just "one" (thing going on).
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


iluvsunflowers15
Regular Member


Date Joined Apr 2006
Total Posts : 395
   Posted 7/16/2008 6:21 AM (GMT -6)   
Thanks Quincy for your kind words. After what happened last night, I decided to take the prednisone. I had such bad joint pain that I couldn't walk! Wow-its amazing how fast it works! The doctor wants me to take 15 mg a day (3 5mg pills). Is it better off to take 5 mg in the morning and then 10 mg in the afternoon? Or should I take all 15 mg at once?

Yeah, I am very fortunate to have a wonderful boyfriend who tries so hard to be empathic and helpful. My mother is my rock when it comes to this.

Heather
Colazal 750 mg 3x3 daily
6-MP 50 mg (2) daily
Miralax-when needed
Rowasa-when needed
Been diagnosed with UC for 5 years


pencilbeckett
New Member


Date Joined Jul 2008
Total Posts : 9
   Posted 7/16/2008 1:21 PM (GMT -6)   

hi there,

i haven't been diagnosed with colitis yet but my doc thinks that is what my problem is. my joints are killing me, they have done for around 8 weeks, my ankle is killing me. im on no meds apart from painkillers which dont really do anything. i had a pain in the back of my head the other night which really scared me and then a head ache for 2 days! my stomach ache only lasted for 3days and blood still appears in my pooh 10 days on from the tummy aches.

enjoy disney, im jealous, i love disney:-)


iluvsunflowers15
Regular Member


Date Joined Apr 2006
Total Posts : 395
   Posted 7/16/2008 2:51 PM (GMT -6)   
hi pencilbeckett,

i am sorry to hear that you are still not feeling well. i would definitely get it checked out. i hope your doctor can find a solution for you. thanks for the disney wishes. i cannot wait! :-D

Heather
Colazal 750 mg 3x3 daily
6-MP 50 mg (2) daily
Miralax-when needed
Rowasa-when needed
Been diagnosed with UC for 5 years


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 7/16/2008 3:24 PM (GMT -6)   
It's good you're having relief Heather....keep us posted as to how you're feeling.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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