UC and Joint Pain - a Personal Odyssey. READ!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Rot Gut
Regular Member


Date Joined Jun 2006
Total Posts : 63
   Posted 4/13/2008 5:28 AM (GMT -6)   
Good Morning Boardies,

This may serve as a wake-up call for some of the members. And I think it's important enough to start a thread. Someone mentioned far down in another thread DO NOT IGNORE joint pain. I checked mine off as "oh well, I am getting older".

But when I mentioned it to my GI it set off his alarm bells. 10 questions later he was pointing me to a Rheumatologist "stat".

I was surprised by the length of that first Rheumy appointment. He poked, prodded, questioned for 90 minutes and then sat down and wrote a BUNCH of orders for lab tests and x-rays. He said to start with Celebrex 1 or 2 times a day.

Celebrex alone did not do the trick and I wanted to hear my diagnosis so I went back in 30 days. I have Colitic Arthropothy. Well, enquiring minds like mine want to know so he needed to expound a little.

We UC'ers have a crummy immune system. We have inflamation. We're ripe for the taking on joint involvement, lung involvement....well involvement.

Multiple lab tests and lung x-ray suggested that he could be aggressive in my treatment.

I'm taking Celebrex twice daily and a whopping big shot of Methotrexate every Friday. It just gets more and more fun all the time!

Do I feel better? Yes and no. Some days after I work out the initial stiffness and get moving I have a GREAT day.

Other days I just am resigned to having "grandma's body" at the age of 53. 'Cause like all of you there's no OTC product to take to ease off the pain. Rheumy said it could take six months to get the full effect so I'm hanging in there. I'm only 3 months in and he just upped the MTX by half on Friday.

Rheumy said quite clearly - YOU are LUCKY your GI sent you in here. Early and aggressive treatment will keep you from joint deterioration and keep you moving. He said we WILL find the right combination and have you pain free again because we caught you EARLY!

EARLY AND AGGRESSIVE TREATMENT is the key.

I feel blessed to have alert and compassionate health care professionals on my team.

If you wake up with pain and stiffness that takes longer than 30 minutes to resolve you may have this condition. Remember Early and Agressive treatment may allow you to dance at your grandchild's wedding.

Sorry so long. I'm feeling the need to reach out today because it's important!

**Please edit signature to 10 lines or less (including blank lines)

Post Edited By Moderator (tjf) : 4/13/2008 6:02:40 AM (GMT-6)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/13/2008 5:57 AM (GMT -6)   
Sounds like you have both a great rheumy doc and GI! Even though what you have isn't nice, it's awesome that it was caught early enough. Did any of your bloodwork and x-rays show that you have that condition?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Rot Gut
Regular Member


Date Joined Jun 2006
Total Posts : 63
   Posted 4/13/2008 6:14 AM (GMT -6)   
Hi Sherry,

Bloodwork confirmed the high inflammation. Other tests weren't as definitive.

Chest X-RAY was clean as a whistle.

Rheumy wiggled and pressed all my fingers, toes, etc and asked literally 100 questions before he told me I'm a "classic" case.

The internet was VERY useful once a diagnosis was provided.

What's classic? Warm joints. Symmetrical involvement with hands, wrists, feet, ankles, knees, elbows and shoulders (not all in most cases). He says the spine is generally spared. Stiffness lasting 30 minutes or longer in the morning. Pain upon rising after sitting for an extended period of time. Lots more.

Curiously one of the medications used for treating this condition is sulfasalazine! So some of the boardies in here may already be "treating" their problem. Not me, it gives me violent headaches.

Happy Sunday!

I'm heading over to edit my signature as it's too long. Thanks moderator :)
Rot Gut

Left Side UC diagnosed in 1988 while pregnant with twins
Taking PREDNISONE for the first time! Almost done tapering. DONE!
Colazal
Canasa
Aciphex
Celebrex
Methotrexate injectable
Folic Acid
Whining

Post Edited (Rot Gut) : 4/13/2008 6:17:45 AM (GMT-6)


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 4/13/2008 6:18 AM (GMT -6)   
***Hey! Can you please limit your signature to 10 lines or less (blank lines included)?***
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/13/2008 6:19 AM (GMT -6)   
I was just wondering on how it presented itself because I'm sort of in a pickle myself and so far no doctor can give me an answer. I have been to so many doctors lately that I feel like I'm living there! The latest doc I went to was a rheumy and boy was that a visit from hades! Hmph......don't get me started on that one again! LOL But I've had xrays and MRI's both of which showed nothing wrong with my lower spine and hips, yet I'm in almost constant pain. I am scheduled for an EMG next week so I will see if the pain is nerve related or not, but I'm getting quite frustrated. What's sad is that I too feel like I'm in a Grandma's body and I'm only 38!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Rot Gut
Regular Member


Date Joined Jun 2006
Total Posts : 63
   Posted 4/13/2008 6:51 AM (GMT -6)   
Hi Tab and Red,

I did go over and clean up my sig as promised.

Red, I thought I had carpal tunnel at first since I spend literally all day doing repetitive tasks on my job as a computer network administrator. When I had a meniscus tear repaired last year I asked the surgeon for his opinion on the wrists at the same time. He handed me a couple splints - and essentially put a band-aid on the problem. So I dismissed the first symptoms.

This hit me hard at Thanksgiving. I went to visit my sister and within that weekend I felt like I had been in a car wreck.

I didn't want to go BLACK FRIDAY shopping. That's VERY unlike Rot Gut.

It progressed over Christmas and yet I put off seeking help. I was spending literally an hour getting ready for work. Hot tub, bio-freezing my ouchies, stretching, staying active at the gym in the afternoons, etc.

Yet the feeling that I WAS the car-wreck stayed with me.

That's what I mentioned to GI. Ding!

I hit every progression point I now know to be an indicator. Silly me.

Find the right Rheumy. Refuse to leave until he takes you seriously. Do NOT WASTE THE NEXT DECADES OF YOUR LIFE FEELING AWFUL!

Tell the nurse when making the appointment that you are NEW and will need extra time from the doctor. My GI did that for me and took the time to tell me that I should block out an hour. It ended up taking 90 minutes at the first appointment.

I do feel now that I'm on the mend and that my team cares about me as a person. I'm not just a line in their appointment book.

Blessings!

Rot Gut is a girl person, age 53, in peri-menopause, VERY physically active, and ready to feel great again.
Left Side UC diagnosed in 1988 while pregnant with twins
Colazal, Aciphex, Rowasa, Canasa for the UC
Celebrex, injectable Methotrexate and Folic Acid for Colitic Arthropathy

Rot Gut is newly certified as a MICROSOFT Professional.
Will that be for here or to go?


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5169
   Posted 4/13/2008 10:16 PM (GMT -6)   
Interesting diagnosis. I've gone thru 3 or 4 differing periods of joint stiffness, but bloods have always tested pretty much o.k. My gastro, who subspecializes in IBD, recommends testing vit D25 level-- because under a certain level of D, one's bones likely do not absorb calcium properly. What were your lung symptoms, Rot Gut? / Old Hat (nearly 30 yrs with left-sided UC ; currently on 3 Colazal daily for maintenance of remission, + daily Centrum Silver multivitamin, 1 tablet Glucosamine500/Chondroitin400 with gastro's blessing)

Rot Gut
Regular Member


Date Joined Jun 2006
Total Posts : 63
   Posted 4/14/2008 12:59 AM (GMT -6)   
Hi Old Hat,

I didn't have any lung symptoms. The Rheumy prescribed Methotrexate and when that is done they want a baseline study done as there can be side effects that cause lung involvement. He also observed that I work in a huge elementary school with many migrant children and wanted to rule out TB at the same time.

He's been VERY careful with me. I must return for bloodwork each month until he says I can stretch it to 60 days. Now THAT I hate!

Folic acid is REQUIRED with the MTX and "be sure to take a senior vitamin" every day too".

OH, it sounds like you've stayed on top of this with good folks. How are you feeling today?

Rot Gut
Left Side UC diagnosed in 1988 while pregnant with twins
Colazal, Aciphex, Rowasa, Canasa for the UC
Celebrex, injectable Methotrexate and Folic Acid for Colitic Arthropathy

Rot Gut is newly certified as a MICROSOFT Professional.
Will that be for here or to go?


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5169
   Posted 4/14/2008 10:17 AM (GMT -6)   
Thanks for lung explanation, RG. I've actually been doing better jointwise since taking the 2 supplements mentioned above. For a good while I had been taking the AARP mail-order multivitamin, which may not have been potent enough-- because I definitely started feeling peppier about 3-4 weeks after switching to Centrum Silver. It has 500 mg of vit D per tablet & somewhat less A than most multis-- which my gastro thinks is good. Of course that fact that Colazal helps me stay in remission from UC longer than earlier 5-ASA meds makes a big difference, 1st & foremost. Best wishes for your recovery; unfortunately, elementary schools can be great breeding grounds for problem microbes, especially when overcrowded. It's good that your Rheumy proceeds cautiously to explore all bases. / Old Hat

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/14/2008 6:50 PM (GMT -6)   
I find it very interesting that they use the word "arthropothy". I started developing joint pain in high school to the point where I was a Mayo Clinic without answers. Their final opinion: arthropothy. I've had periods of flares and remissions for 15 years - UC for about 5. I haven't seen a rheumy in a decade... Maybe the next time my joints flare I should...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Cortifoam, Aciphex, Forvia, and Pro-Bio, Calcium, Vitamin D
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Jane123
Regular Member


Date Joined Jul 2005
Total Posts : 407
   Posted 4/14/2008 9:39 PM (GMT -6)   
Isn't Celebrex an NSAID?  Aren't we supposed to stay away from those since they are so hard on the intestines?

Diagnosed Proctosigmoiditis August 2004, Pancolitis June 2005, Proctitis January 2007
 
Pentasa 2000mgs, Sulfasalazine 2000mgs, Rowasa nightly, Canasa as needed, Omega 3, Folate, SCDophilus, Calcium, SCD since 3/6/06
 
In remission
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/14/2008 10:18 PM (GMT -6)   
Yes, we are generally advised to avoid NSAIDS because they can irritate the digestive system and cause bleeding. Sometimes we have to balance the risks and benefits. I take Naproxen twice daily with food for my UC-related musculoskeletal pain. My choice would be to take narcotics, which would possibly be more harmful to me. Periodically I try to discontinue the Naproxen and take a non-NSAID analgesic instead. Within 12 hours my hip joints are so painful and stiff I can barely walk.

My GI knows the situation and why I have to take them. He okayed them because there are really no viable options.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


Rot Gut
Regular Member


Date Joined Jun 2006
Total Posts : 63
   Posted 4/15/2008 2:01 AM (GMT -6)   
Jane 123,

Rheumy is not thrilled that I'm taking 2 Celebrex a day and wants me down to 1 as soon as the increased dosage of Methotrexate kicks in. He's just not willing to leave me with no relief until then and we're not ready to go to a mixed cocktail of MTX and Enbrel due to cost.

He has lots of experience with us UC'ers and never fails to ask me about my "other symptoms" since it' represents the WHOLE me.

I have one shot at .7 under my belt now. Wish me luck - I'm trying to live happily ever after here!

Best of Tuesday to you!

Rot Gut
Left Side UC diagnosed in 1988 while pregnant with twins
Colazal, Aciphex, Rowasa, Canasa for the UC
Celebrex, injectable Methotrexate and Folic Acid for Colitic Arthropathy

Rot Gut is newly certified as a MICROSOFT Professional.
Will that be for here or to go?

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, April 26, 2018 1:44 AM (GMT -6)
There are a total of 2,955,759 posts in 324,254 threads.
View Active Threads


Who's Online
This forum has 162248 registered members. Please welcome our newest member, evelynray.
216 Guest(s), 5 Registered Member(s) are currently online.  Details
H-Bomb, Octobrsky13, Danielle1035, Ila24x7, Tall Allen