Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Joints and stiffness


 
04-11-2014, 11:37 AM   #1
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Joints and stiffness

DS does see a Rheumo for a follow up soon..
That being said
He has had stiffness in his hands /fingers every day for the past 5-6 months.
He wears resting hand splints every night for both hands to decrease the severity of the hand stiffness . They are still stiff all day everyday though.

He just added ankle and foot pain within the past few weeks.
His mobility in his neck and lower back are worse .
He can't touch his toes or bend his neck back to get eye drops for example without pain.

He doesn't have swelling or redness of the joints just stiffness .
His Gi stuff is fine so it's not that .
He does swim 4-5 days a week for over an hour a day .

I guess my question is two fold
Can you have arthritis and not have swelling /redness?
Wouldn't the humira stop the stiffness if it was arthritis ?
Also if it were related to crohn's shouldn't his Gi stuff be in a different place than it is??

Going to tAlk to the Rheumo any advice on what questions to ask or any treatment that may have helped your child that I am missing.
__________________
DS - -Crohn's -Stelara -mtx-IVIG
04-11-2014, 11:52 AM   #2
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
C's knee joints, ankles and sometimes wrists flare with his disease but his back is a different dx and the rheumatologist said that he needs a biologic to stop fusion but he has had that lower back pain since dx and had been on remicade that entire time.

I'm so new to this new dx that I'm unsure of all that it entails but Maya142 maybe be able to give you more guidance.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-11-2014, 12:35 PM   #3
DanceMom
Senior Member
A has pain/stiffness too, but no redness/swelling. I'm anxious to hear the replies on this thread as it would apply to her as well.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
04-11-2014, 03:00 PM   #4
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
YES yes yes MLP!
Neither of my girls have redness/swelling now that they are on Humira. Both are still very stiff - cannot touch their toes (though both have permanently lost mobility in their lower backs), hips don't move well. A lot of the pain can be from enthesitis - inflammation where tendons/ligaments insert at the bone.
Look up enthesitis related arthritis or spondyloarthropathy.
Spondylitis.org is a good resource.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-11-2014, 03:01 PM   #5
Jenn
Senior Member
 
Jenn's Avatar
 
Join Date: Jul 2011
Location: San Diego, California
Even though Humira is used for arthritis, it can cause joint pain. Wouldn't hurt to follow up with the GI as well as the Rheumo.
__________________
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
04-11-2014, 03:04 PM   #6
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
More resources:
http://www.cincinnatichildrens.org/h...dyloarthritis/

http://www.aboutkidshealth.ca/en/res...arthritis.aspx

We have found that while anti-TNFs help a lot, they don't take away the pain and stiffness completely. That's why both my daughters are on combinations of meds- Humira + sulfasalazine +nsaid and Humira+ mtx+ nsaid. Studies have showed that this type of arthritis is very hard to control in terms of pain and stiffness (unless you're part of the lucky subset that are greatly helped by Anti-TNFs). Both my girls have had disease progression and both will likely need hip replacements even though they've been on anti-TNFs for years.
04-11-2014, 05:45 PM   #7
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
MLP - You can absolutely have arthritis symptoms while your gut is normal. Been there. Done that!

Like Maya said.....Humira may not be your DS' magic bullet.......in terms of the joint pain anyway.

Sounds worth a visit to me!!!!

J.
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-11-2014, 07:10 PM   #8
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Same thing for Grace. Can't bend her head back to take eye drops.
When her neck hurts now I have her lay down to get her eye drops.

I asked the rheumatologist about whether the JRA and Ibd will run together or independently. She said can be either way. She made said it's important to start treatment right away.


As for questions.......
Ask how they dx JRA.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-11-2014, 07:32 PM   #9
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
I also like this explanation of arthritis and IBD and when they flare together or independently of each other. http://www.ccfa.org/assets/pdfs/arth...plications.pdf

M's arthritis and IBD seem to flare mostly at different times (and sometimes together for double the fun). For example, her last scope and pill cam were clean, and her belly feels pretty good, but we're in the hospital right now dealing with an arthritis flare.
04-11-2014, 07:55 PM   #10
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
DS has been seeing Rheumo for almost a year every two to three months .
DS is just getting frustrated by the constant stiffness.
Rheumo briefly mention the arthritis word as we were walking out the door but not as something DS was dx with kwim.
Officially DS has arthralgia and myalgia associated with crohn's.
I just am beginning to think its more than that .
04-11-2014, 09:26 PM   #11
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
They reclassified Claire's JRA as crohns arthralgia about a year ago but her doc told me it was just semantics. We are going at it the same way.
04-11-2014, 09:56 PM   #12
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
Does arthralgia lead to loss of mobility and joint damage? I thought everything I had read said that it didn't?
Not sure though because we got the arthritis diagnosis first and it's pretty clear that it;s separate from the Crohn's.
04-11-2014, 10:38 PM   #13
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
http://www.dukemedicine.org/blog/growing-pains

a good explanation between the two.
I think anyways...still reading
04-11-2014, 10:40 PM   #14
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
I'm sure you're right. You've been through this with 2. Think it has anything to do with the HLB-27 (did I get that right???). Claire was rf+ and ANA+ Polyarticular JRA. She still has rf & ANA but I swear he told me she was reclassified.

Claire hasn't had permanent mobility loss to this point. Longest was a wrist that took about 6 months to completely get motion back.

Ironically when her joints aren't inflamed, we have hypermobility problems.

J.
04-11-2014, 10:42 PM   #15
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
Has he had any imaging? MRIs?
Both my daughters had warm, swollen joints (knee for M, knee and ankle for S) when they were first diagnosed. But I've been told that had their first symptoms been in their backs (SI joints for example) we wouldn't have seen the swelling or redness.
I'm sure your rheumatologist will say more - keep us updated!
04-11-2014, 10:43 PM   #16
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
You know what MLP....maybe he said that because she went so long without a joint flare up. That's a good article. And she did complain with no visible inflammation sometimes. After this hand episode, I suspect he's had another mind change!!!! Lol

J.


04-11-2014, 10:44 PM   #17
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
only MRI's were for his IBD so abdominal MRI's X2.
No XRAYS either.
04-11-2014, 10:45 PM   #18
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
ds has hyper mobility as well :LOL:
04-11-2014, 10:46 PM   #19
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
Maya142 we were warm and swollen at dx with 7 joints. At worst arthritis flare, the count was 14 joints but never hips, shoulders or spine. Went a couple of years without visible swelling until last year. But the hand episode this year (still ongoing) was more dramatic.

Sorry to high jack your thread, MLP!


04-11-2014, 10:58 PM   #20
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
AZMom - the discussion is helpful to figure out what is what kwim.
04-11-2014, 10:59 PM   #21
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
C's knees have never been warm or swollen when having joint pain during flares, peripheral arthritis. He had complained about his lower back since CD dx but since the first rheumatologist said probably deconditioning it just kept being put on hold.

When the new rheumatologist saw him and did the physical exam it really surprised both C and I at his reaction when she pressed low down on his back at the SI joint, he literally came off the table, spondylitis or spondyliarthropathy. She did say he had great range of motion and he had xrays that day, they were clear. So I thought does that mean no inflammation but both Maya142 and rheumatologist nurse said no just no damage. The nurse said that the rheumatologist stated inflammation was definitely present.

I hope you find answers for DS.
04-11-2014, 11:15 PM   #22
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
DS has never had any swelling or redness, just PAIN. He has had enthesitis once in his hip and once in is heal, both times required a course of pred. He takes sulfasalazine to maintain remission and I once thought it wasn't doing anything and we tried (with the doc's ok) to wean him off of it and he almost immediately flared with the enthesitis in his heal. His flares of enthesitis have always been independent of his GI flares. Rheumatology calls my son's limb issues Crohn's related enthesitis. I know they follow him very closely for ankylosing spondylitis but until he has back involvement it is just enthesitis. I tried to tease out a more definitive term and it seems like a lot of the spondyloarthropathies are annoyingly overlapping. I once asked about this and the rheumatologist basically said it didn't matter what they called it.

Maybe ask about adding sulfasalazine. It is a fairly benign drug and is used quite a bit in the arthritis world.

Has he gone to physio? The peds arthritis clinic that my son goes to has a physiotherapist that he sees as well. The physio is actually my "go to" person to contact if my son is having any limb issues as she takes millions of measurements and can tell if there are any changes and is then the best advocate with rheumatology.

Has he been tested for the HLA-B27 gene?
__________________
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-11-2014, 11:39 PM   #23
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
http://www.healthline.com/health-sli...s-arthralgia#7

This slide show highlights how hopkins , NIH and other don't agree on the definition of the terms .

So now I am really confused .
04-11-2014, 11:40 PM   #24
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
We also have hypermobility problems with certain joints. I think it's more common than they let on. Both girls though have lost a LOT of mobility in their lower backs which is very worrisome (not that they care that they can't touch their toes).
They are both HLA-B27+ (which is a gene associated with AS - I think something like 80 to 90% of caucasians with AS have that gene).
AZMOM, I'm surprised they reclassified Claire if she's RF+ but rheumatology never fails to confuse me...!
04-12-2014, 06:40 AM   #25
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
Twiggy930, the rheumatologist basically told us the same thing about spondylisrthropathy and AS. She doesn't call it AS but the results are the same: fusion.

MLP it is all so confusing.
04-12-2014, 07:18 AM   #26
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Basically the same thing for Grace.
She was dx with polyartular arthritis but the rheumatologist told us that might or will change in time. Sadly the back is becoming an issue.

Grace is very hyper-mobile.
At mayo they examined her for Ehler-Danlos (sp?) But they felt she didn't have it but said if around ten she's still like this they might want to reexamine her. She's already dislocated her knee, shoulder and two toes but was able to pop them back in without a problem.
Meanwhile I was freaking out in the corner.


Yes, I'm confused by my research on how they dx certain types of JRA. Grace I feel was dx very fast but she had 15-17 joints affected already. They started the Mtx right then and there.

I also wonder if her hype mobility is playing an issue right now.
04-12-2014, 08:22 AM   #27
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I don't know if you have this link but this is the web-site the rheumatologist gave us.

http://www.kidsgetarthritistoo.org/
04-12-2014, 09:06 AM   #28
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
I like that website too.
I think this is what most of our kids have (Twiggy's son, Clash's son and my girls):

"Enthesitis-related arthritis: This type, which wasn’t included under the JRA criteria, involves inflammation of the entheses, sites where tendons attach to the bone. Boys are more often diagnosed. The arthritis can be mild, involving four or fewer joints in roughly half of cases. In some children, arthritis can move to the spine. Frequently, they test positive for the HLA-B27 gene.

Over time, your child may develop one of the various conditions known as juvenile spondyloarthropathies, which may but do not necessarily affect the spine. Some of those diseases include: juvenile ankylosing spondylitis, arthritis associated with inflammatory bowel disease and reactive arthritis."

AS is officially diagnosed when there is sacroilitis that shows up on X-rays. Before that it is called juvenile spondyloarthropathy, undifferentiated spondyloarthropathy or enthesitis-related arthritis. It's more common in boys.
Inflammation in the SI joints might show up by MRI but unlikely to see it in kids on X-ray which is why most kids don't get AS diagnoses. Juvenile AS is a possibility though, that's what my daughters have officially been diagnosed with. We've been told time and time again it's rare to see JAS in girls (but my husband has AS which increases their chances of having it).

Twiggy930 - I'm really happy to hear Sulfasalazine worked for your son, I was just beginning to give up hope for my daughter! What dose is he on, if you don't mind me asking?
04-12-2014, 09:08 AM   #29
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
One last thing - we have been told M's hypermobility might be adding to the pain but when she's on the right combination of drugs, she's fine in terms of pain, so I really don't buy it!
04-12-2014, 09:20 AM   #30
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
Funny you say that, Maya. They've told me that too when C complains of joint pain and the stiffness/swelling isn't present.


Reply

Crohn's Disease Forum » Parents of Kids with IBD » Joints and stiffness
Thread Tools


All times are GMT -5. The time now is 08:29 PM.
Copyright 2006-2017 Crohnsforum.com