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01-25-2018, 09:02 AM   #481
Maya142
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My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
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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
01-25-2018, 09:20 AM   #482
Leed2713
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My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
Sounds like gabapentin really would be worth a try. God love your girls dealing with crohns and arthritis warriors they are.

There has been no mention of a motility specialist to figure out why this is happening. I would be delighted if it was suggested as I would like to know what the cause is. The nhs is really stretched her and getting appointments can have a long waiting time. I must check with the gastro nurse if there are any motility specialists here that I can take him to. Do you know what could cause this ? xo
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Son diagnosed age 12 - July 2015

Past medication - 10 weeks modulen NG tube july 2015, Azathioprine

Surgery - Appendectomy, right hemicolectomy and part terminal ileum removed open surgery June 2016

8 weeks modulen NG tube June 2016

Current Medication - Started August 2016 Infliximab, azathioprine, vit D supplements started September 2016
01-25-2018, 09:24 AM   #483
Maya142
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I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.
01-25-2018, 10:07 AM   #484
Leed2713
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I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.
Gastroparesis has never really been mentioned. He actually had a barium swallow I think test was called last year when this all started. After it they actually commented on how fast it went from stomach through small intestine. He did have a narrowing from surgery resection site but was getting through fine. It seems to be after this that it slows down. I really will be finding out about a motility specialist as no one is suggesting what is causing this. I know ibs may cause this but surely then it would have always been an issue and not just started xo

Im so glad to hear that they are able to help your daughter with motility meds for the gastroparesis xo
01-25-2018, 11:29 AM   #485
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Just going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.

Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.

Ugh! The gut is so cloudy!
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Crohns & Remicade induced Psoriasis
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Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet

Last edited by crohnsinct; 01-25-2018 at 11:32 AM. Reason: typo
01-25-2018, 01:49 PM   #486
Maya142
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
01-29-2018, 07:21 AM   #487
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
Yeah that's what I was thinking that it wasn't the same but had been trying to find other possible causes for slowing down when it got to the large intestine. I have been reading the book I got from amazon and it has made me so interested in the pain management clinics mentioned. However none in Ireland or uk I can find. Its interesting too as aspergers syndrome is mentioned as well IBD. He also has aspergers syndrome. His school has contacted me today to say that he is so unhappy at school and they want a meeting.
01-29-2018, 07:28 AM   #488
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Just going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.

Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.

Ugh! The gut is so cloudy!
Oh it really is I wish I could help him as its really affecting his life now to the point that his school has just rang and want to meet with me. He is miserable all the time and says he just feels horrible all the time. Last year he was given some treatment for bacterial overgrowth as it was a suggested possibility. It didn't make any difference though. That is interesting about the celiac I am unsure if he was ever tested but will be asking the question xo
01-29-2018, 07:46 AM   #489
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
Thank u for the link also Maya142 xo I am going to take him to my GP as his consultant is so busy and see if they know where he can get transit test carried out
08-27-2018, 11:34 AM   #490
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My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.

How long do people give remicade a chance? How soon should we see a response?

it sucks being worried all the time.
08-27-2018, 11:47 AM   #491
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Some people have relief immediately and some can take 6 months to a year to see full results. My son saw immediate relief but took a full year to reach full remission.
Even with remicade it can take messing with the dosage and timing to see results.
It's so hard because we all want that immediate fix for our kiddos and waiting is tough!
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
08-27-2018, 12:51 PM   #492
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Antibiotics can really mess up the gut and so that might be clouding things right now. Give it a little time. It took my daughter 6 months to get a full response to Remade. Lots of tweaking doses and schedule etc.

If symptoms persist I would mention them to GI and see what they say.
08-27-2018, 01:58 PM   #493
Maya142
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I would say that you have to wait till the CDiff is cleared up. Then you will see if he is responding to the Remicade or whether he needs the dose or frequency increased. My daughter started out at 5 mg/kg but eventually needed 7.5 mg/kg and then 10 mg/kg every 5 weeks or so, before she went into remission. The good part about Remicade is that you have a lot of room to play with the dose and frequency, which is not the case with other biologics.

It took 3-4 months before my daughter felt GOOD on Remicade.

She also has had CDiff - twice - and it really is the absolute worst. Since you say he has had recurrent CDiff, are they treating him with Vancomycin? And has a fecal transplant been brought up?
08-27-2018, 02:10 PM   #494
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thank you for the quick responses. I'm so glad of all your supports- We have felt so alone.


He had one c-diff episode last month- treated 10 days of vanco., it came back and now they are using metronidazole for another 10 days. We are not yet at the fecal transplant step.

thanks for the remicade info... I need to be patient I guess, but its so hard...

Last edited by susangrant; 08-27-2018 at 02:12 PM. Reason: added a bit more
08-27-2018, 02:35 PM   #495
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We used Vancomycin both times - we were told that in IBD patients the recommendation is to skip Flagyl and to use Vanco. The guidelines for adult IBD patients also state that Vancomycin should be used....I'd bring it up if Flagyl does not work for him.

We were told my daughter would need to have CDiff 3 times to have a fecal transplant - so we aren't there yet either (and I hope we don't get there!!).

Hang in there. CDiff is really tough - I'd focus on keeping him hydrated and once he is done with the abx, wait and see how he does on the Remicade.

There is a lot of "wait and see" in the IBD world - I think it's one of the hardest parts!!
01-06-2019, 12:48 PM   #496
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Hi, not sure how this works, I just joined - I am a mother of a son who was diagnosed with crohns July 2018. Prior to finding this news, we learned that he had advanced arthritis in his hips, and then his Si joint. Arthritis exhibited symptoms before Crohns which was pretty silently doing it's thing in the background. Really surprised that he was even told to visit GI specialist and then learned about Crohns. Seems like as soon as we learned this, it got worse. He has been on remicade for 3 1/2 months and doing well, however, there wa a set back after his 3rd infusion and we had to speedily to another one 3 weeks before his 4th infusion. It appears he is metabolising quicky so doc wants to put him on 4 week schedule, and he is currently reloading. Has anyone heard of re-loading remicade. I have read many messages and haven't read anything about loading doses for the 2nd time. I too understand what you are all going through. Even when he is well, I am always worried that it won't last, and it's causing me anxiety! He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade. I am glad I found this thread. I think we would all trade places with our kids if we could.
01-06-2019, 02:50 PM   #497
my little penguin
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Welcome
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Peanutbutterlovesjelly

You can add calories with formula in addition to food

Ensure or boost both work well for adults
Some need semi elemental (peptamen)

Een can boost remission (exclusive enteral nutrition-formula only )
No solid food

Does nothing for his ankylosing SpondyloArthritis though

Sometimes remicade needs een plus mtx to get things under control

Ds was dx at age 7
Now is 15
Ds is a high metabolizer as well
He is currently on Stelara every 4 weeks
He was on remicade and humira over the past 7 years
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01-06-2019, 03:01 PM   #498
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Thank you for your reply. L probably had arthritis for a few years, although Crohns wasn't obvious, but the signs were not obvious - thought it was just how he walked, and even the chiropractor and family doctor didn't catch on right away. Anyway, this is all pretty new. How is your child doing with Stelara? Is Stelara good for both IBD and AS?
01-06-2019, 03:55 PM   #499
my little penguin
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Ds has juvenile SpondyloArthritis ( not AS - no spinal involvement yet)
But is his b27 positive so watching him closely
Stelara at high frequency(every 4 weeks) has helped both his arthritis and his Crohns
But still needs mtx and Celebrex for his arthritis as well


Humira also helped both but had to add mtx
Remicade he wasnít dx with arthritis yet (so it may have been helping ..,)
01-06-2019, 06:02 PM   #500
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Stelara is NOT good for AS. In fact, it failed in phase III trials and the study was terminated early.

Stelara does seem to work for peripheral arthritis but not for spinal (axial) involvement, which includes the SI joints. It's used in psoriatic arthritis but most rheumatologists will tell you that it's not very effective for that either.

To actually have an official diagnosis of Ankylosing Spondylitis, there has to be damage to the SI joints that shows up on x-ray. However, damage takes quite a while to show up - it can take 8-10 years, so it's rare to see it in kids/teens.

If there is no damage visible on x-ray but inflammation is visible on MRI, that means your son has juvenile axial spondyloarthritis (SpA). It has not yet progressed to AS and the goal of treatment is to prevent that progression.

My husband and daughters all have AS. Initially though, my girls were diagnosed with juvenile SpA. My older daughter progressed to AS in 5 years. My younger one took only 3. My husband has pretty severe AS - he also developed severe hip arthritis in his 20s. He has had 5 hip replacements, starting at age 30, fused SI joints, a damaged ankle and some spinal fusion.

Anti-TNFs are the best option for patients with both axial SpA and IBD. Typically Remicade or Humira. You want to treat aggressively, to prevent further damage to his hips and SI joints. My girls have been on anti-TNFs for years and my older daughter did great on them.

My younger one has severe AS - pretty much every joint of hers is involved, from her toes to her jaw. We made the mistake of not treating her aggressively enough when she was younger and only had a few joints involved, and she is paying the price.

She is 22 and it is looking like this year she will need a jaw replacement. She has very stubborn AS - we tried everything: Humira, Remicade, Simponi, Cimzia, Enbrel, Methotrexate, Arava, Imuran, Sulfasalazine and so on. We finally moved on to IL-17 inhibitors - Cosentyx and Taltz - and those have REALLY helped her. However, they can cause a Crohn's flare and aren't meant to be used in AS patients who also have IBD. But because my daughter's AS is SO much worse than her IBD, we chose to risk that.

Her IBD has been mild. Her Crohn's diagnosis was a surprise too - her only symptoms were lower right abdominal pain, some weight loss and occasional constipation. But her Crohn's has responded very well to anti-TNFs, thankfully.

Has anyone heard of re-loading remicade. I have read many messages and haven't read anything about loading doses for the 2nd time. I too understand what you are all going through. Even when he is well, I am always worried that it won't last, and it's causing me anxiety! He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade. I am glad I found this thread. I think we would all trade places with our kids if we could.
I have heard of reloading with Remicade. Usually it's done when there's been a break in treatment, but it makes sense to do it in your son's case, since there was no Remicade in his body and you're essentially starting from scratch.

There is also high dose Remicade - they can go up to 20 mg/kg every 4 weeks. My younger daughter tried that and it worked for a while. But she doesn't respond well to anti-TNFs in general. My older daughter does. She has had an easier time than her sister, thankfully. She has hip, SI joint, jaw, knee, ankle involvement. But anti-TNFs controlled her arthritis well (mostly) and she has been able to live a pretty normal life.

For juvenile spondyloarthritis, it is not uncommon to get Remicade every 4 weeks. The FDA approved dose for AS is 5 mg/kg every 6 weeks. For Crohn's it's started off at 5 mg/kg every 8 weeks and the dose/frequency is changed if necessary. Both my girls had infusions at every 4-5 weeks when they were on Remicade.
01-06-2019, 06:21 PM   #501
my little penguin
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Maya142
What was the dose and frequency of the AS trials with Stelara?
If it was the PsA dose of 45 mg every 12 weeks vs the Crohns dose of 90 mg every 4-8 weeks
Thatís a big difference.
I havenít seen the study recently
01-06-2019, 06:25 PM   #502
my little penguin
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In this prospective, open-label, single-arm, proof-of-concept clinical trial (ClinicalTrials.gov identifier NCT01330901), ustekinumab in a dose of 90 mg was administered subcutaneously at baseline, week 4 and week 16 in 20 patients with active AS. Eligible patients were required to have a diagnosis of AS according to the modified New York criteria and an active disease defined as a Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) score of ≥4 despite previous non-steroidal anti-inflammatory drug (NSAID) treatment. The primary study endpoint was the proportion of patients reached the Assessment of SpondyloArthritis International Society 40 (ASAS40) response at week 24.

RESULTS: At week 24, ASAS40 response was reached by 65% of the patients. ASAS20, ASAS5/6 and ASAS partial remission were observed in 75%, 50% and 30% of the patients, respectively. A ≥50% improvement of the BASDAI (BASDAI50) occurred in 55% of the patients. A total of 50% and 20% of the patients achieved the AS Disease Activity Score (ASDAS) clinically important improvement and major improvement, respectively. At week 24, 35% of the patients had an ASDAS inactive disease (ASDAS <1.3). Significant improvement of other patient-reported outcome parameters and active inflammation as detected by MRI as well as significant reduction of NSAIDs intake occurred during the treatment. Clinical response correlated with reduction of active inflammation on MRI and of serum C reactive protein level. Overall, ustekinumab was well tolerated.

CONCLUSIONS: In this prospective, open-label, proof-of-concept clinical trial, ustekinumab treatment was associated with a reduction of signs and symptoms in active AS and was well tolerated.
From

https://www.ncbi.nlm.nih.gov/m/pubmed/24389297/


Found this study from 2013
But no Crohns loading dose was used
And they waited 12 weeks from 2nd to 3rd shot
01-06-2019, 06:27 PM   #503
my little penguin
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Rheumatology key messages

20Ė40% of patients with AS do not respond to TNF inhibitor therapy.
Secukinumab is the first IL-17A inhibitor approved for active AS.
Both Janus kinases and IL-12/IL-23 inhibition show promise as targets in AS patients.
This one from 2018
Says it shows promise as well

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6238222/


Therapies in ankylosing spondylitisófrom clinical trials to clinical practice

Hasan Tahir
01-06-2019, 06:33 PM   #504
my little penguin
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Data from TOPAS prompted the initiation of a multicentre phase 3 trial programme. The first of two randomized phase 3 trials investigated the efficacy of ustekinumab compared with placebo in patients with AS, following an inadequate response or intolerance to TNFi therapy (TNFi-IR) [34, 35]. Patients received ustekinumab 45 or 90 mg s.c. at weeks 0 and 4, and then every 12 weeks to week 52. Patients in the placebo group received s.c. placebo injections at weeks 0, 4 and 16 before being re-randomized to ustekinumab 45 or 90 mg, with s.c. injections at weeks 24 and 28 and every 12 weeks thereafter [34]. The second phase 3 trial included patients with non-radiographic axial spondyloarthritis, and compared ustekinumab (45 or 90 mg) with placebo. Up to week 52, ustekinumab was administered according to the same schedule as that described for the phase 3 study in AS. Placebo was administered every 4 weeks until week 24, when patients were switched to ustekinumab [35]. These studies have been terminated since ustekinumab did not achieve key endpoints in a related study [34, 35].

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6238222/


Found it
So basically given the PSA dose at 45 mg to 90 mg EVERY 12 WEEKS

If itís only given every 12
I can say from what I have seen with ds alone
The drug is NOT effective at all for arthritis even at every 8
Let alone at every 12
Once he switched to every 4 things improved

My point is they may see different results of the dose was higher and given more frequently
Vs using the lower PsA dosing which is not going to be effective at all
01-06-2019, 06:58 PM   #505
Maya142
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Oh absolutely - I think if rheumatologists could prescribe a higher dose, it MAY work. But the fact is that most patients with a rheumatic condition aren't going to get more than 45 mg every 12 weeks or if they're over a certain weight 90 mg every 12 weeks.

90 mg every 4 weeks may have worked but there are no trials to support it. In the early study, yes it did seem to work. That was a proof-of-concept study though and a very small study - 20 patients!!

But until there are studies done again in AS, we cannot say it works. Most patients with AS do not have IBD and so they would get the PsA dose - 45 mg every 12 weeks. At most, 90 mg every 12 weeks.

We have been following Stelara for years - since 2012. We have talked to several top AS researchers all over the country whom study AS. All have used Stelara and none have had good results. ALL told us not to bother trying it, that it was unlikely to work for my daughter with severe axial and peripheral arthritis. We asked rheumatologist after rheumatologist and every single one said that in their experience, it did not work for AS or spinal disease in axial SpA.

Unless the pharmaceutical company is willing to fund trials with a higher dose - like 90 mg every 4 weeks, we just don't know. It may work for certain patients, but so far the evidence shows that it does not work - the study was terminated for axial SpA/AS.

JAK inhibitors and IL 17A and IL 17F inhibitors are what's coming next for AS - they are seeing very good results. IL-23 inhibitors also failed for axial disease, which is why I think Stelara is unlikely to work for most AS patients.
01-06-2019, 07:33 PM   #506
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OMG you are really informative and thank you so much for this information. My son had MRI on all his spine and the Si joint shows some erosion, and both hips have arthritis. He has been going to physio 3 x a week for 7 months now and that has helped, however, when he started Remicade late September, he instantly was walking much more easily. The rheumatologist didn't actually indicate he has AS, but she did say that we caught it early enough to treat it from getting worse, but it would have been better to get it earlier, or course. We lost almost 2 years with first the chiropractor, and then waiting for neurologist appts as the family doctor thought it might be neurological. It was only because he could no longer walk and tore his groin muscle that we found at at emergency via xrays that he had arthritis of both hips. It was daunting, and then the crohns which he had mostly asymptomatically for years - probably 5 years at least as he never went through the stage of eating a lot, and never had a very huge appetite. Remicade has been helping. I can't believe what you must be going through having your family with AS and IBD. You are very knowledgeable and thank you for sharing.
01-06-2019, 07:45 PM   #507
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Oh, as well, my son was negative for b27 and the rheumatologist indicated that it was the IBD that was probably first and then came the arthritis, although the arthritis presented itself first. I have read on enteropathic arthritis and often this is the case. I applaud you on all your knowledge and thank you again for sharing.
01-06-2019, 09:52 PM   #508
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Hi Jo-mom. Sorry to hear that it took your son so long to be diagnosed. That's common with kids and teens, unfortunately.

My daughter also started Remicade right away after her Crohn's diagnosis, and, like your son, the initial dosing wasn't enough for her. Her doctor reduced the dosing interval from 8 down to 6 weeks, and also added budesonide (an oral steroid) and methotrexate. My daughter was also already on EEN at that point, and she continued on that. With all those changes, my daughter started to do better, and after a few months, she was able to drop the budesonide and EEN. She still takes methotrexate, and she has needed an increased dose of Remicade several more times over the years, but it's still working for her 4 years later.

I've never heard of repeating the loading sequence, but I think it's likely to help in your son's case. Hope the new dose works well for him.
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
01-06-2019, 09:52 PM   #509
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Welcome Jo-Mom💕 my son is 12, he wa diagnosed with crohns age 9 and juvenile spondyloarthritis age 10. He started on 6 mp initially then switched to remicade and methotrexate because of the JSpA diagnosis. After the crohns diagnosis he continued to have elevated sed rate and joint pains for months. GI doc kept saying it was arthritis due to crohns but he wasnít having GI issues at the time. Maya and MLP really encouraged me to get a rheumatologist consult which was the best decision ever. His MRI also showed erosions on bilateral SI joints. Looking back, we noticed him walking different and wanting to rest a lot during soccer. He said his legs bothered him but we thought it was just growing pains. So Iím not sure if he had arthritis or crohns first but not sure if that matters too much. After only a couple remicade infusions his sed rate normalized and joint pains disappeared! It was like a miracle! After loading dosing he received remicade every 4 weeks and weekly methotrexate. After being symptom free and normal sed rate for a few months then remicade was decreased to every 8 weeks and we continued weekly methotrexate.

He has only had one set back in sept2018 had a ruptured appendix and so after surgery needs to be off his meds. He was off remicade for 11 weeks and started to get the achy legs again and sed rate was back up in the 50s. He just had remi end of December and next infusion is February so I am hoping to see that sed rate come down.

How often does your son receive remicade? Maybe he needs it more frequently. Does he take any other medications for crohns or arthritis?

Sorry your son is going through this❤️💜💙Iím glad you joined the forum🤗🤗🤗.
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Mom of Lincoln (age 12)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
01-06-2019, 10:03 PM   #510
Maya142
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Please ask your rheumatologist before seeing a chiropractor!!! They are NOT recommended for people with AS or axial spondyloarthritis. They can really hurt patients because they are typically not well-educated on AS (patients have inflexible or less flexible spines and often low bone density) and they can cause a lot of harm.

As for what came first, honestly, it's hard to know. It's a chicken and egg situation. I used to think that my daughter's arthritis came first but now I'm not so sure - she always gut problems - had trouble gaining weight, had diarrhea on and off. Her symptoms were mild and on and off, so her pediatrician always said it was a virus.

My girls are HLA B27+ though.
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