leg pain with ibd unrelated bone issues

December 13, 2008

Hello everyone, I haven't posted in a long while (I read and posts in

fits and bursts). I was wondering if anyone else here has a lot of

trouble with pain in their legs and feet, but in addition to having

psc & ibd also has some kind of structural deformity or separate

medical issue with their feet &/or legs --so the pain isn't strictly

psc/ibd. My 14yoson has psc & ibd and he also is severly flat footed

with severe pronation and pes planus valgus. Some of the bones in

his feet have deformed over time and he doesn't walk 'normal', is

misaligned from feet to hips. For the better part of a year we were

told his chronic pain was due to his ibd or psc and he saw a

rheumatologist for this. We didn't know his feet were malformed

(they didnt' appear that way when he was younger and he was active).

Anyway, we saw the physical problem with his feet only a year ago

when he was standing barefoot before us and he began treatment and

care for it then, but did not progress this year as we were told he

would and remained very inactive (and is now disabled). The

orthopedic surgeons we've consulted with feel his pain IS due to the

immune disorders and not the structural deformities, that

inflammation in the body is aggravating the already atypical bones,

muscles, and tendons involved. We've 180'd back to trying to work

out the pain in his legs from his ibd/psc now and I was looking for

anyone who might have also dealt with this combo of structural

problems AND psc/ibd inflammation within the body. Also, our son has

autoimmune hives and we've wondered on our own if this might also be

part of the pain-inflammation issue for our son since it has never

been fully controlled (so always present in some level in his body).

He was in remission for a while w/ his ibd and then 'mostly' in

remission with it after that, but his foot & leg pains never abated --

just seems odd to me that ibd would be the cause even when it

is 'gone'. He isn't in a great deal of pain all the time, but is in

some level of pain all the time, usually low. I highly doubt I'll

find some with the same combo of issues, but maybe with similar

ones?? I'd love to know how you manage day-to-day and how the pain

is managed medically, as well. Also, what type of doctor(s) manages

this with you and what meds do you (safely) take to help? We are

trying to make decisions about whether our son should have surgeries

to 'help' the deformities and somewhat realign his feet (and when -

and which surgeries). If we were able to separate the conditions as

they are related to pain, foot deformities from immune disorders (and

also which specific immune disorders) that would help us a great

deal. If we could eliminate the immune-caused pain that would be

even better.

Thank you, and I hope everyone is able to have a good holiday season

(whichever holiday you celebrate).

Meghan, mom to 14yo Wyatt -psc, ibd, fap (inherited condition), gerd,

autoimmune hives

December 14, 2008

Hi Meghan;

Can I recommend reading this article on biological therapy for

extraintestinal manifestations of IBD:

Inflamm Bowel Dis. 2007 Nov;13(11):1424-9.

Biologic therapy in the management of extraintestinal manifestations

of inflammatory bowel disease.

Barrie A, Regueiro M

Division of Gastroenterology, Hepatology and Nutrition, University of

Pittsburgh School of Medicine, University of Pittsburgh Medical

Center, Pittsburgh, Pennsylvania, USA.

The inflammatory bowel diseases (IBD), notably Crohn's disease (CD)

and ulcerative colitis (UC), are systemic inflammatory diseases

primarily involving the gastrointestinal tract. Twenty percent to 40%

of patients with IBD develop extraintestinal inflammation and

symptoms, known as extraintestinal manifestations (EIMs).1-7 The most

common EIMs affect the joints, skin, eyes, and biliary tract. The

EIMs associated with IBD bear a negative impact on patients with UC

and CD. Thus, the successful treatment of EIMs is essential for

improving the quality of life of IBD patients. For most EIMs, their

resolution often parallels that of the active IBD in both timing and

therapy required. However, some EIM such as axial arthritis, pyoderma

gangrenosum, uveitis, and primary sclerosing cholangitis run a

clinical course independent of IBD disease activity. The advent of

biologic response modifiers, e.g., tumor necrosis factor-alpha (TNF)

inhibitors, has improved the treatment of IBD and its associated

EIMs. This article reviews the therapeutic experiences of the 2 most

widely used anti-TNF neutralizing antibodies, infliximab and

adalimumab, for immune-mediated EIM of IBD. PMID: 17567879.

Full text avilable at:

http://www3.interscience.wiley.com/cgi-bin/fulltext/114278996/PDFSTART

It talks about joint, skin, eye and biliary manifestations, and

identifies those that may run a course separate from IBD, and those

which may or may not respond to tumor necrosis factor inhibitors,

which tend to block inflammation. I was wondering whether your son's

orthopedic surgeons had taked with you about this possible therapy,

given that they " feel his pain IS due to the immune disorders and not

the structural deformities, that inflammation in the body is

aggravating the already atypical bones, muscles, and tendons

involved. "

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

December 14, 2008