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my little penguin

my little penguin

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DS saw Rheumo today.
I am still in shock even though I shouldn't be .
I knew it was coming but was hoping my gut was wrong .
Long of the short of it DS was dx with crohn's related arthritis today .
Doc said some of the joint issues were functional but others were definitely crohn's related arthritis .
I was shell shocked so I didn't ask which joints were which plus DS was in the room- I was trying to get him used to the arthritis word .
Low dose Mtx with folic acid this week- pill form so really low dose .
Plus swimming daily stretches etc...

Follow up in two months
I will ask more questions next time maybe .
Right now I am just trying to deal with the dx.

I assume crohn's related arthritis is a lifelong thing not a happens once in a while thing .
Of to read
Be back with more questions later
 
Can't say I'm shocked but sending so so many hugs. Did he say spondyloarthritis? If his SI joints are involved, then that's what it'll be.

M did really really well on the MTX + Humira combination. Better to treat it now than deal with the damage we're dealing with.

HUGS:hug: arthritis is no fun but can be managed well.

My older daughter is on the Humira + MTX combo and is doing GREAT! Her MRIs actually look better than two years ago after a year and half on Humira and MTX.
 
Doc didn't say but I will get the written summary later - easier than discussing it all in front of DS .
I assume SpA since he spent a long time on his hips and lower back asking which specific spots were sore .

Mtx is pills does your oldest take pills or shots ?
Last time he had shots
 
Shots for both girls always. M has lots of side effects with it, S a few, but manages to take it.
 
If he's absorbing okay, then you will do fine with pills. I'm so sorry there's another thing to absorb.

It's crazy how we hunger for answers but sometimes when you get them, you're left feeling shellshocked.

Claire has done MTX off and on for years. Most recently on for almost 3 years, I think. She's done SO much better at this age than when she was younger.

BIG HUG -

J.
 
M has been on 15mg and 25mg. Rheumatologist mentioned she would try 10mg soon but now that she's on Imuran not sure that's an option. S is on 15mg.
If his Crohn's is controlled, no harm in trying the pills. The shot is very easy and doesn't hurt really -- both my girls gave it to themselves.
 
Considering all his vitamin levels are good and he is growing - up 36 lbs and 7 inches in two and half years - i think he is absorbing really well .

Glad to hear it worked well for Claire .

DS is not dealing with it well - more whiny than usual.

I like arthralgia as a better term.

But seeing him look like a little old man walking out of the movies per DH a few weeks ago kinda knew then we needed to "do" something .
The kid stretches on his exercise ball every single day .
Vent over maybe
 
:hug: Like Maya I'm not surprised but sorry to hear about the new dx.

Just like IBD he will see better days.:hug:

Grace was low dose pred as a bridge therapy for 5 months. She had no side effects from it.

In my prayers.
 
So sorry you have to join this club as well. I hope the Mtx does the trick. I have tried to get Rheumatology to be more definitive in their diagnosis in regards to the spondyloarthropathies but I think it is a very grey and over lapping area. It doesn't help my scientific brain that likes everything to fit into a neat and tidy definition.
 
Thanks J
The more I read probably the axial kind since his crohn's has been "quiet" for a while ( since Oct ) except a day here or there .
 
FWIW in a bid to get my son more active I signed him up for sailing lessons last year. I may have created a monster because he LOVES it and it has become his sport of choice. It seems to be good in terms of getting him to stretch his back and move around a lot but not in a high impact sort of way. I also think there is a relaxation component to it in terms of being out on the water that he finds beneficial too. It has been way better than when I signed him up for lacrosse. :ybatty::ybatty::ybatty:
 
I'm so sorry to hear this, MLP. Even when the thoughts are lurking, it's difficult to hear them. :ghug: I hope you see improvement with the MTX - you both deserve som relief soon!! :ghug:
 
Spondylitis Association of America has some good info. They also have forums but not a lot of moms on there.
I have LOTS of articles, if you want some PM me.

Just a thought - going from Humira every other week to every week made a HUGE difference for both my daughters. One rheumatologist even told M she could do Humira shots every 6 days.

We see one of the best known researchers in AS (both girls and my husband are in a study) and there is a lot of hope - several very promising meds in the pipeline. Sending hugs, I know hard it is to get used to one more (very painful) thing:hug:
 
For now Gi controls humira
Rheumo controls Mtx

Tommorrow that may change

Docs and I like to only change one thing at a time
Makes things easier to figure out if they are working
 
MTX tends not to help axial arthritis. However M gets better everywhere when on MTX -- even her lumbar spine and SI joints, so it seems to work for her (though most, if not all, studies show that MTX does not work for AS - she is my weird kiddo).

That's why for spondyloarthropathies (with primarily spinal pain) our rheumatologist always goes from NSAIDs to Biologics -- does not bother with MTX and sulfasalazine, adds them in later if needed.

Anyway, something to keep in mind if his back does not get better - hopefully the MTX will be all he needs!
 
Well if that's the case we are toast :(
DS has already been on biologics for 20 months all the while getting more joint issues .
Gi and Rheumo agreed no more NSAIDs for him at all.
 
It seems like your son does things his own way too, perhaps he'll respond to MTX really well! Kids do seem to respond differently than adults, and all the studies are in adults.

Plus there's still weekly Humira, or you could add Arava or try Cimzia or Stelara or perhaps even Simponi (it's only approved for Ulcerative Colitis but apparently some GI's are using it off-label for Crohn's).

Both Cimzia and Simponi are in trials for Juvenile idiopathic arthritis, should be approved soon.
 
MLP
So sorry DS & YOU are going through this:ghug:
FWIW I had strange joint problems that it took years to diagnose & through that time I ended up with lots of joint damage. But, once I went on MTX it has been my miracle drug & has really given me my life back. I would have days that I couldn't go up the steps, but now it's 180 degree turn around. I am stuck with the joint damage that has already occurred but it's good that DS is getting what he needs before the damage occurs. It took a little while to tweak the dose of folic acid to manage the side effects (and let me say that medicine in general all makes me sick) This is like everything else with this crazy disease...everything works for everyone differently & if the doc didn't think it had a chance to work then he wouldn't have prescribed it. I'll be praying DS sees some quick relief!
 
MLP,
Sorry to hear about this new diagnosis! I hope the methotrexate helps quickly. My Grandfather was on MTX for arthritis for years and it really helped. I hope your son will respond quickly and get great relief from it!
 
So sorry to hear about the news. C is dx'ed with SpA, this has been a confusing term for me because I asked her if he had AS and she said she didn't call it that when it when IBD was present but essentially the result was the same. We are pushing for HLA B27 test next visit as well as an MRI.

C complained of back pain throughout the two years he was on remicade and combo remi/oral mtx. He is no longer on a biologic at this time but hadn't complained once about joint issues since starting the mtx injections. I hope DS finds relief quickly!
 
Clash said:
C is dx'ed with SpA, this has been a confusing term for me because I asked her if he had AS and she said she didn't call it that when it when IBD was present but essentially the result was the same. We are pushing for HLA B27 test next visit
Click to expand...

I've essentially heard this too. It is all part of the overlapping terms. I once asked a Rheumatologist if getting the diagnosis nailed down mattered and he said it did not as they treat the disease as it presents. The HLA B27 test will not likely clear things up. You are more likely to have the gene if you have AS but you can still have AS and not have the gene. Around here DS is negative for HLA B27 but still has all the other issues. I've even heard them mention psoriatic arthritis since you can have that without having psoriasis if you have a 1st degree relative with psoriasis and I have psoriasis! In the end it all results in essentially the same thing. This must be why rheumatologists seem to deal better with the grey areas then GIs.
 
Twiggy930 said:
I've essentially heard this too. It is all part of the overlapping terms. I once asked a Rheumatologist if getting the diagnosis nailed down mattered and he said it did not as they treat the disease as it presents. The HLA B27 test will not likely clear things up. You are more likely to have the gene if you have AS but you can still have AS and not have the gene. Around here DS is negative for HLA B27 but still has all the other issues. I've even heard them mention psoriatic arthritis since you can have that without having psoriasis if you have a 1st degree relative with psoriasis and I have psoriasis! In the end it all results in essentially the same thing. This must be why rheumatologists seem to deal better with the grey areas then GIs.
Click to expand...

^^^^^ Yes I've been told the same things.
Grace's Rheumy just said treat the here and now arthritis, knowing the future arthritis dx might change.

Plus I should add that I'm finally seeing improvement for Grace on Humira and mtx. Her joints still have issues but the pain seems much lower. :hug:
Now the trick is just staying here.
 
I have Crohn's related arthritis, as well. Surprisingly the first time I was on Humira, I noticed a massive improvement in my joints. Unfortunately I had to stop my Humira, and I'm back to severe arthritis. Hopefully the mtx works for you!
 
Oh MLP! I am so sorry you are both having to deal with this. Here's hoping a definitive (well as definitive as these rheumy things go) will get him the treatment he needs and he will get back to feeling better soon.

FWIW - they added mtx for O to treat psoriatic arthritis (10mg pill form) and it has helped tremendously. I know that is different but hoping you will have the same success!
 
The researcher my daughters sees calls spondyloarthropathies a spectrum. He says he doesn't care if patients have Crohn's related arthritis, AS, axial spondyloarthritis, juvenile spondyloarthritis or psoriatic arthritis -- he treats them all the same! Only insurance companies really care because they don't like to have to pay for biologics if they can get out of it (right now biologics are only approved for AS but he is trying to get the FDA to change that so that juvenile spondyloarthritis and axial spondyloarthritis can be treated with Anti-TNFs).
Some studies say HLA B27+ suggests a more chronic course of the disease.
 
Long of the short - spoke with Rheumo today to get clarification.
DS has JIA-JSpA( or ERA) - type 2 peripheral arthritis associated with IBD.
Way too many letters - I will get it down soon.
No signs of the spine yet .
His arthritis is independent of crohn's activity so it has to be treated .

:(

At least I can research now ;)
 
Abstract

Enteropathic arthritis (EA) is a spondyloarthritis (SpA) which occurs in patients with inflammatory bowel diseases (IBDs) and other gastrointestinal diseases. Diagnosis is generally established on the medical history and physical examination. It was, generally, made according to the European Spondyloarthropathy Study Group (ESSG) criteria. Rheumatic manifestations are the most frequent extraintestinal findings of IBD with a prevalence between 17% and 39%, and IBD is associated, less frequently, with other rheumatic disease such as rheumatoid arthritis, Sjogren syndrome, Takayasu arteritis, and fibromyalgia. Although the pathogenesis of EA has not been plainly clarified, the most popular theory supposes that joint inflammation occurs in genetically predisposed subjects with bacterial gut infections, provided an important evidence for a possible relationship between inflammation of the gut mucosa and arthritis. The management of patients with EA requires an active cooperation between the gastroenterologist and rheumatologist.
Click to expand...


From:

http://www.hindawi.com/journals/jir/2013/631408/


Review Article
Enteropathic Spondyloarthritis: From Diagnosis to Treatment
Rosario Peluso,1,2 Matteo Nicola Dario Di Minno,2,3 Salvatore Iervolino,1,2 Francesco Manguso,4 Giuseppina Tramontano,1,2 Pasquale Ambrosino,2,3 Carmela Esposito,1,2 Antonella Scalera,2,3 Fabiana Castiglione,2,5 and Raffaele Scarpa1,2
1Rheumatology Research Unit, University Federico II, 80131 Naples, Italy
 
Thanks for posting this MLP. Caitlyn suffers with a lot of joint pain even though her Crohn's is supposedly in remission. We have not been able to find a decent rheumatologist in our area that takes our insurance unfortunatly. The one we did see who is supposed to be the best in our area said there was no link between IBD and arthralgias and that was after we waited four hours to see him! We said thank you very much and never went back. We have been searching but still have not found someone to see her for her joint issues. We will keep looking.
 
Kim
DS has stable crohn's but his arthritis is independent of his crohn's activity.
The link between Ibd and joint pain was established in 1922.
Maybe bring NIH papers with you next time.
We are extremely fortunate with DS's Rheumo .
He has been supportive since the beginning two years ago.
 
Kim,
I'm so sorry to hear about your experience. I know the Arthritis Foundation has campaign to get funding for more pediatric rheumatologists. If you call the Arthritis Foundation (the person that's in charge for your state) then they might have suggestions about nearby ped rheumatologists or adult rheumatologists that have experience treating kids.

http://www.kidsgetarthritistoo.org/resources/find-a-doctor.php

I hope you find someone that can help Caitlyn!
 
http://medical-mastermind-community.com/uploads/Spondylitis.pdf

http://www.medscape.com/viewarticle/543896_5

The ESSG criteria require inflammatory back pain or synovitis in addition to one of the following: family history, psoriasis, IBD, urethritis, cervicitis, acute diarrhea, alternating buttock pain, enthesopathy, or sacroiliitis. There are no exclusions for the ESSG criteria. They are inclusive of psoriatic arthritis, reactive arthritis and IBD, all of which are excluded by the ILAR classification criteria thereby being more inclusive of other subgroups.
Click to expand...

From:

http://www.medscape.com/viewarticle/543896_2



Recognition and Treatment of Juvenile-onset Spondyloarthritis
Lianne Gensler, John C. Davis, Jr.Disclosures
Curr Opin Rheumatol. 2006;18(5):507-511.
 
Last edited:
Kim - I hate that. We've had joint pain with flares on occasion but MOST of the time, ours operates independently of what's going on with her gut. We need to find you a doc!

Hugs,

J.
 

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