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.

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.

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.

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.

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.

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.

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.

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 also like this explanation of arthritis and IBD and when they flare together or independently of each other. http://www.ccfa.org/assets/pdfs/arthritiscomplications.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.

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 .

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.

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.

http://www.dukemedicine.org/blog/growing-pains

a good explanation between the two.
I think anyways...still reading

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.

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!

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.

only MRI's were for his IBD so abdominal MRI's X2.
No XRAYS either.

ds has hyper mobility as well

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!

AZMom - the discussion is helpful to figure out what is what kwim.

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.

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?

http://www.healthline.com/health-slideshow/arthritis-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 .

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...!

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.

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. :facepalm: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.:runaway:


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.

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

http://www.kidsgetarthritistoo.org/

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?

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!

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

If you don't mind me asking mlp......

Do find your kids that have some form of JRA are prone to muscle spasms?


I can start another thread mlp if you think this is being directed in a different direction then you want.:hug:

Yes, definitely. Particularly in their backs. Both girls take Flexeril occasionally, but it makes them really sleepy the next day, so they try not to take it on school nights.

Maya142 said:

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.

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?

Click to expand...

This sounds right. I've been told that the exact diagnosis doesn't really matter because they treat the symptoms regardless. When I talk to regular people I just say he has arthritis because it is too hard to explain the details all the time.

DS is on 1 g of sulfasalazine twice a day. We tried giving him 1.5 g twice a day to see if it would have an effect on his abdominal pain but it didn't so we put it back down to the 1 g.

DS is negative for HLA-B27.

I don't think A has muscle spasms, but she does get a burning/tingling feeling in her legs and sometimes arms with exercise. We aren't sure if this is muscle or nerve related. The Rheumo believes it is claudication. At one point she was feeling this 24/7 but now it is more intermittent.

M is on 88lbs and on the same dose (she's pretty small though, 5'2). I wonder if it's too low? Something to think about. Thanks Twiggy!
Sorry to steal this thread MLP!

No issues learning a lot.
Lots of questions for Rheumo..
May ask about sulfanazine although DH is severely allergic to sulfa drugs - had brought it up as an option last summer everyone ( docs and us hesitated due to this ) but then the humira kicked in Gi wise....

Ugh...
His hands were bad this morning ( 1 week out from humira)plus fatigue he slept til after ten .

My husband can't do sulfa drugs either but both my girls have been fine with them! Worth asking about I think! It's a pretty benign drug.

Have you considered doing weekly injections? I feel like weekly injections are pretty common for arthritis patients. Mtx also helped my older daughter a lot in combination with Humira (actually it helped M too, she just can't tolerate it), though I know your son didn't do well on mtx.

I'm sure you have done this but I'll throw it out there anyways. Have you tried having him soak his hands in warm water? I'm thinking of a basin that you could fill and have him sit and soak his hands for a bit. It's not going to solve anything but might bring minor relief. We did this with DS's foot.

The sulfa drug issue is unfortunate. Have you tried NSAIDs? I know they are contraindicated with IBD but our GI has said that if needed my son could take them, although I'm sure he wasn't meaning on a regular basis. GI was adamant that NSAID use once and a while would be fine.

UGH! I wish there was a cure to all this autoimmune crap.

Yes Grace's OT therapist told me to soak Grace's hands in warm Epson salt when she gets home from school. Grace's right arm is affected so she uses a special pencils and scissors meant for kids with arthritis but she still hurts when she gets home.

M uses NSAIDs daily. In her case the arthritis is worse than the Crohn's, and NSAIDs actually reduce progression in AS (the newest research is showing that Anti-TNFs do too, but up until now, it's been debated whether they actually reduce progression or just symptoms) so she really needs to take Mobic daily - both GI and rheumatologist agree.
It took a lot of trial and error to find one that didn't tear up her stomach.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3882059/

More research... if anyone wants more links, PM me!

Claire took Mobic this last bad round. Both docs agreed on that one.

Trying parafin wax
Per Rheumo
Not sure if that will fix it

let me know how it goes. I bet Grace would love doing that but.:shifty:...maybe teaching a five year old to plunge her hands into wax is not the way to go.:facepalm:

my little penguin said:

Trying parafin wax
Per Rheumo
Not sure if that will fix it

Click to expand...

Now that’s a good old treatment! Everyone I have ever looked after that has had wax treatments for arthritic hands swears by them.

Dusty. xxx

My daughter did that in camp! I didn't realized it was also therapeutic. I thought they just did it for fun.

Jumping in here late, as usual...

Jae has been having chest wall pain for 6 days, with abdominal pain off and on, knee pain for a couple days, then her feet and legs hurt. It seems to be moving around. Her abdominal pain seems to be relieved by Maalox and no D, but the joint pains (enthesitis?) seem to be moving around and now no appetite again... She seemed to do well for about a month or two with little symptoms and was taking more or less a normal diet and slowly gaining weight. Do you think the joint inflammation could be A) just a side effect of not swimming twice a week, B) a sign that her Crohn's is swinging into a full-on flare, or C) other?

my little penguin said:

Trying parafin wax
Per Rheumo
Not sure if that will fix it

Click to expand...

I asked Grace's rheumatologist about this treatment and he said paraffin wax is a great help for sore hands and that he would write a prescription for me to pick up one.:dance: wow I thought for sure I would pay out of pocket.