A question about prednisone

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CarolinAlaska

Holding It Together
Joined
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The doctor prescribed prednisone 20 mg twice a day. In my experience, I've been taught that it should all be given once a day in the morning. J has enough trouble sleeping and giving her this burst in the evening seems wrong. Has anyone got any understanding of why she would dose it this way? How have your kids had to take it?
 
A was on 40mg at her highest dose and we did 20/20. The doctor prescribed it that way and I just never questioned it. She did have issues sleeping but it became our new normal. I hope the prednisone helps her symptoms.
 
They want a steady stream of Pred in the system
DS has had it prescribe split dose every time he has had Pred for IBd

Not feeling good in general makes it hard to sleep
 
We also did it like that. M had a really hard time sleeping.
 
DS was initially px'd 40mg once a day, but the emotional ups and downs were crazy hard, so his GI said to split it 20/20 to maintain a consistent dose in his system. It helped a ton. He still didn't sleep much - just wasn't tired, so he'd just read during the night. The lack of sleep didn't seem to affect him during the day.
 
Ive never heard of this side effect with pred, but anything is possible right...what i know however is that we are at greater risks of leg thrombosis with crohn's. and more so when the flare is active. I would consult the dr asap to be safe. could also be joint inflammation expression.
 
MLP, her swelling went away in August and didn't come back until 2 days ago. Now it's back and I'm trying to figure out why. The pediatrician just thinks she is an enigma. Her other hip and knee hurt, but currently not this one.

Actually yesterday she thought the swelling was in both legs after being at the movies for 5 hours.
 
Definitely let your GI know! Isn't edema a side effect of Prednisone?
 
Google says yes but I'd check with your GI.

More common

Aggression
agitation
anxiety
blurred vision
decrease in the amount of urine
dizziness
fast, slow, pounding, or irregular heartbeat or pulse
headache
irritability
mental depression
mood changes
nervousness
noisy, rattling breathing
numbness or tingling in the arms or legs
pounding in the ears
shortness of breath
swelling of the fingers, hands, feet, or lower legs
trouble thinking, speaking, or walking
troubled breathing at rest
weight gain
 
She seems to have hit her peak of wellness at 107 lbs, but has started backsliding into her old symptoms - more loose stools, more pain, missing school. Today she finished her last dose of 14 days of Flagyl. Tomorrow she starts weaning the prednisone by 5 mg every 4 days.

Jaedyn's cheeks are getting puffy, but her swollen leg from last week is getting better. She is having partial seizures more frequently, but fewer full seizures.
 
Sending HUGS! I hope you get an answer SOON and it's the answer we hope for (Remi :) ).
 
I'm so frustrated. Even before we started lowering prednisone, she is hurting again in the right lower abdomen again and bowels are starting to mess up again. If the doc doesn't have a plan when we meet Dec 3, I think I will blow! My patience with this whole process has run out. My hope that resolving the c. Diff would resolve her problem is quickly fading. I want to get her off this ride...
 
So we're weaning prednisone, and until now J's moods have been quite pleasant. Yesterday she was a mess. Her face is moderately broke out, she has a double chin, which is odd for her skinny, but puffy face. She was sad, and her tummy hurts again. Poor girl.
 
Last edited:
Your poor girl! Tell J it takes a while, but her puffy face will go away. M was also not happy about the puffy face.

Sending hugs :ghug:!
 
Yeah that
Lp wasn't too thrilled about the puffy face
Lasted a long time
Sometimes a slower wean is easier from symptoms but harder from

Puffy face etc...
 
The puffy face thing is so hard on anyone, but much more so for young people. I'm sad to hear that she is getting her symptoms back so soon after, or even before stopping the flagyl, and I'm sure her mood has to do with having to deal with all of this. Will they re-test her again to see if the c-diff is gone? I think they did this with N after he finished his course of flagyl. I do hope they have a plan in place at your appointment!
 
Quick question
Has she ever done elimination diet ?
Or had testing for gastric emptying since those can cause similar pain
And the abx speeds up the system
 
Quick question
Has she ever done elimination diet ?
Or had testing for gastric emptying since those can cause similar pain
And the abx speeds up the system

We have not done elimination diet, just a very slow start on solids after EEN.

Her pain is almost always down low, below the belly button. No gastric emptying study. Would antibiotics or prednisone override that problem?
 
The puffy face thing is so hard on anyone, but much more so for young people. I'm sad to hear that she is getting her symptoms back so soon after, or even before stopping the flagyl, and I'm sure her mood has to do with having to deal with all of this. Will they re-test her again to see if the c-diff is gone? I think they did this with N after he finished his course of flagyl. I do hope they have a plan in place at your appointment!

I asked one of the docs but he didn't seem to think they'd need to retest. Our appointment with GI is Thursday.

She says her tummy was doing really well, then doubled her over after her BM. She isn't having diarrhea, just "wormy" shaped stools like she had on EEN. The symptoms restarted about the same time she stopped Flagyl, but like the same day.
 
Her pain is almost always down low, below the belly button. No gastric emptying study. Would antibiotics or prednisone override that problem?

Certain antibiotics would speed up gastric emptying - Erythromycin and sometimes Azithromycin are used for Gastroparesis. However, J's pain sounds kind of low for gastroparesis - typically it would be stomach pain, above the belly button. She'd also have nausea and fullness after meals.

If her pain is increasing and BMs becoming worse while tapering prednisone, I'd think it was a Crohn's flare and not something else.

My daughter also had a CDiff test after she finished with antibiotics (she was on Vancomycin). In her case, the test was negative.

REALLY hope you get some answers and a concrete plan on Thursday :ghug:!!
 
We had our hospital follow-up today. Jaedyn is doing very well for the past couple of days. I guess she is doing too well on the prednisone and increased dose of 6MP, so Remicade is back off the table. She said that if Jaedyn flares again she'll go right to it and not put us through 50 million tests again since finally in the hospital she had had elevated inflammatory markers and low albumin, which somehow in her book confirmed her Crohn's.

On the bright side, Jaedyn has reached the 50 kg (110 lb) goal we set - up 14 lbs since the day she was admitted. She is finally eating food pretty ravenously, and yesterday drank 7 Ensures to boot. Hopefully she'll just keep getting better and better. Her tummy pain was a 0/10 for the first time that I can ever remember.:soledance:

Joint pain is still up. Her appointment with rheumatology is next Tuesday.
 
That's great that she's feeling so much better, and that her weight is back up! Has she started tapering the prednisone?
 
Hmmm...I think I would feel better if GI said, well it looks like it was definitely c diff or sibo and not the Crohn's rather than it was a little flare because hello...she is on prednisone! What happens when you taper the steroid?!

Sorry I know you are really excited about the weight gain as am I! I know what a haul that has been for you guys but again...she is on prednisone...guess I am just a bit cautiously optimistic here.
 
Hmmm...I think I would feel better if GI said, well it looks like it was definitely c diff or sibo and not the Crohn's rather than it was a little flare because hello...she is on prednisone! What happens when you taper the steroid?!

Sorry I know you are really excited about the weight gain as am I! I know what a haul that has been for you guys but again...she is on prednisone...guess I am just a bit cautiously optimistic here.

We're definitely still in the same boat here. You should have seen the look Jaedyn gave her when I asked her whether Remicade is back off the table and she said that it was back off the table unless Jaedyn started to feel bad again. Jaedyn told her, "I don't want to have to go back to that place again. I never want to feel like that again!" She seems to think that tweaking the 6MP may have fixed everything.
 
Sorry I agree
Most folks with ibd will feel great on pred especially over 20 mg
Same with weight gain
Not getting the warm and fuzzy
Prepared now for the other shoe to drop at 10 mg or below
Our Gi won't say a med is working until your off pred for at least two weeks
 
Arghhhh how frustrating. Why wait till she flares AGAIN?

Sorry but I agree with the above. It's pretty clear that it's inflammation if the steroids are doing wonders. It really sound like J needs Remicade. Poor J -- she is right, she shouldn't have to feel like that again!!

Glad she gained weight though, I hope she can keep it on even after tapering the pred!
 
I second the others. I cannot understand how the doctor doesn't see that it is the prednisone that caused her to improve so much,
 
That's great she is having no tummy pain. Sorry she is having to wait and see again for the Remicade! Fingers crossed she gets a good while feeling better first
 
J is having a bad go at coming off prednisone. She is really emotional, foggy brained, body aches (knees and butt), and having a hard time doing her school work. She's crying a lot, her face has terrible acne, and she has a double chin. Her abdominal pain is back, but not severe. Mixed into all this is the fact that she is increasing her lamictal, so I don't know what is causing what.
 
Carolin,
How fast is she weaning? Also is she taking a vitamin B supplement?
It is reccomended when weaning off prednisone.i would also wonder if the lamictal could be interfering with her mood as well. It is definitely hard to say which is causing which.
 
Carolin,
How fast is she weaning? Also is she taking a vitamin B supplement?
It is reccomended when weaning off prednisone.i would also wonder if the lamictal could be interfering with her mood as well. It is definitely hard to say which is causing which.

By 5 mg every 5 days. She wants her to do a faster wean because of her osteoporosis. No on the B supplement. Any particular B?
 
No good ideas but sending HUGS! We dealt with acne and mood swings (lots of tears) on pred and while tapering too. Mood swings are quite common on pred - our GI dept. jokingly calls it the "mean medicine."

Really hope she feels better soon :ghug:.
 
Hugs
That's a
Fast wean
But honestly even a slower wean wasnt good for Ds joints
Only weaning 1-2 mg per every two weeks was slow enough and that took forever
Wouldnt recommend it

Where is she at now?
How much to go ?
 
Poor girl! I hope this is just a bump in her recovery... and just a side effect of the taper. She definitely deserves to simply feel good for longer than just a week or two at a time! :ghug:
 
That sounds so hard--for her and you. I'm sorry that she's having such a rough time, and I hope she feels better soon. :ghug:
 
I'm sorry to hear J is having such a rough time. Can't she catch a break, please????

My son had similar problems coming off pred. Man, what a nightmare. He was aware of how he acted but seemingly unable to stop it. We slowed the wean down to 2.5 mg per 2 weeks. He still had joint pain and it extended the acne, sleepiness and puffy face stage. The joints hurt only slightly less when he went down slowly. In hindsight, since his gi symptoms were fine, maybe we should have stayed with fast wean and just held on thru the ugly time. I don't know.

I hope the J who wakes up tomorrow is happier and in less pain.
 
Hugs
That's a
Fast wean
But honestly even a slower wean wasnt good for Ds joints
Only weaning 1-2 mg per every two weeks was slow enough and that took forever
Wouldnt recommend it

Where is she at now?
How much to go ?

She's at 25, going to 20 mg tomorrow - split in two doses.
 
Poor girl! I hope this is just a bump in her recovery... and just a side effect of the taper. She definitely deserves to simply feel good for longer than just a week or two at a time! :ghug:

I think she only had one really good day where GI pain was zero. We see rheumatologist on Tuesday. It can't get here soon enough.
 
Sending BIG hugs - I really hope the rheumatologist is helpful.

Does her GI know that her symptoms are back as pred is being tapered? Typically, that's an indication that something isn't right!
 
Good luck on Tuesday
Realize if it's her first Rheumo visit
They have to observe the issue through visits for 6 months
Unless things are really bad
:hug:
 
Arthritis criteria is that the docs have to have seen the same condition for at least six months in the office
Unless they see damage on X-ray MRI etc...

Some will treat prior the dx but there are levels
Most use therapy ( pt/OT ) first
Hot cold therapy /wax /electric blankets
Recommend swimming in a warm water pool

NSAIDs pills or gels second

Then after official dx if you have failed the other stuff listed above
Methotrexate for peripheral joints
Biologics for spine
 
I have met kids who got prescriptions for biologics on their first visit.

However, the arthritis usually has to be very bad for that to happen. When my daughter's first MRI results got back to the doctor, I got a call the same day saying that they would like to put her on biologics. That was just two weeks after she was diagnosed. We ended up trying other things first - NSAIDs, Sulfasalazine and then went to biologics. In hindsight, I wish we had gone to biologics immediately.

In our experience, if the child does not have IBD, NSAIDs at least are prescribed on the first visit. If a kiddo does have IBD, then they probably try other options that MLP listed first. We were only offered MTX after both my girls had started biologics, because they had disease in their SI joints (axial arthritis) and MTX typically does not help with that (but does help with other joints - peripheral joints).

It depends on your rheumatologist, but even though ours could feel and see inflammation in certain joints, she wanted MRI's for both my daughters. So be ready for those. X-rays also are a possibility.

These are the diagnosis criteria for JSpA (also called Enthesitis Related Arthritis):

ERA is defined by the International League Against Rheumatism as arthritis and enthesitis of at least 6 weeks’ duration in a child younger than 16 years, or arthritis or enthesitis plus two of the following: sacroiliac tenderness or inflammatory spinal pain, HLA-B27 positivity, onset of arthritis in a male older than 6 years, and family history of HLA-B27-associated disease.7 Common clinical manifestations of ERA include arthritis, enthesitis, and acute anterior uveitis. In the first 6 months of disease, oligoarticular (in four or fewer joints) disease is most common. The most commonly affected joints at diagnosis are the sacroiliacs, knees, ankles, and hips.6 The small joints of the feet and toes are also commonly involved.8 Midfoot joint inflammation, or tarsitis, is highly suggestive of the diagnosis.

Axial disease is common in children with established ERA. By 2, 4, and 5 years after disease onset, as many as 15%, 53%, and 92%, respectively, of children with juvenile spondyloarthropathy (SpA), a condition that encompasses most children with ERA, develop symptomatic sacroiliitis.9 Up to 35%–48% of children with ERA have clinical or radiographic evidence of sacroiliitis (Figure 1A).6,10–12 Untreated sacroiliitis may progress to spondylitis, which is a condition characterized by radiographic findings of corner lesions (Figure 1B), erosions, syndesmophytes, diskitis, and ankylosis or fusion of the axial joints. Once sacroiliitis has developed and changes are visible on radiographs, treatment can be problematic.

This has great info about diagnosis: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3518441/
 
So, he said something about Type 2 Crohn's related arthritis and hypermobility syndrome. Does this mean anything to anyone?
 
my little penguin will correct me if I'm wrong, but I think Type 2 is peripheral arthritis that involves small joints (the hands). It may or may not flare when the IBD flares.

Remind me which of J's joints hurt?

Hypermobility is common and can also cause pain. My daughter also has it (but is only hypermobile in certain joints - not all).

Arthropathy associated with IBD can involve both peripheral and axial joints. IBD associated arthropathy is considered a type of seronegative spondyloarthropathy (SpA). Spondyloarthropathies (which also include Ankylosing Spondylitis (AS), Psoriatic Arthritis, Reactive Arthritis, and Undifferentiated SpA), are characterized by axial and peripheral joint disease with inflammatory features and classically a negative rheumatoid factor. Spondyloarthropathies share a common genetic predisposition, including HLA-B27 association. Extraarticular manifestations such as skin manifestations, dactylitis, enthesopathy, and eye disease can also be seen. IBD-associated arthritis is more akin to AS than to the other subtypes of SpA in that it is more likely to be symmetric and continuous, whereas reactive arthritis or psoriatic arthritis can be asymmetric or have non-continuous lesions within the spine. The European Spondyloarthropathy Study Group criteria (ESSG) are most commonly used for classification of SpA [3].

Orchard et al. [4] defined two categories of IBD patients with peripheral arthritis. Type 1 is a pauci/oligo-articular arthritis with swelling and pain of five or fewer joints, particularly affecting large joints in the lower extremities. Type 1 arthritis tends to be acute and self-limiting, and correlates with IBD activity. Joint symptoms can occur prior to the diagnosis of IBD. Type 2 peripheral arthritis has a more polyarticular (affecting greater than five joints), symmetrical distribution, affecting upper limbs predominantly (MCPs commonly affected). Type 2 peripheral arthritis may be chronic and is less likely to parallel the IBD activity. In both types, peripheral arthritis tends to be non-deforming and non-erosive. The possibility of an alternative diagnosis, such as Rheumatoid Arthritis or PsA should be considered in IBD patients who develop erosive arthritis.

Axial arthropathy in IBD can involve isolated sacroiliitis (frequently asymptomatic), inflammatory back pain (IBP), and AS. As the terms AS, sacroillitis and IBP have some overlap, the distinctions can be confusion. AS required the presence of sacroiliitis on imaging in addition to either back pain and stiffness for greater than 3 months that does not improve with rest but does improve with exercise, or limitation of motion in both the sagittal and frontal planes, or limitation of chest wall expansion after correcting for age and gender. Sacroillitis is defined as inflammation of the sacroiliac joint, and can be asymptomatic or painful. Inflammatory back pain is a clinical diagnosis, and does not require imaging. The Calin criteria can be used to differentiate IBP from mechanical back pain, and are fulfilled if at least 4/5 are present: (1) age of onset <40, (2) duration >3 months, (3) insidious onset, (4) morning stiffness, and (5) improvement with exercise [5]. New IBP criteria developed by the Assessment of SpondyloArthritis International Society (ASAS) in 2009 may have better specificity than the Calin criteria [6].
 
Did he suggest any treatment for the arthritis?

More info, from Medscape:

IBD-associated arthropathies
Axial arthritis (sacroiliitis and spondylitis) in inflammatory bowel disease (IBD) has the following characteristics:

Insidious onset of low back pain, especially in younger persons
Morning stiffness
Exacerbated by prolonged sitting or standing
Improved by moderate activity
More common in Crohn disease (CD) than in ulcerative colitis (UC)[2]
Independent of GI symptoms
Peripheral arthritis in IBD demonstrates the following characteristics:

Nondeforming and nonerosive
More common in CD with colonic involvement than in UC
May precede intestinal involvement, but usually concomitant or subsequent to bowel disease, as late as 10 years following the diagnosis

Type 1 (pauciarticular [< 5 joints])[4] - Acute, self-limiting attacks, lasting less than 10 weeks; asymmetrical and affecting large joints, such as the knees, hips and shoulders; strong correlation to IBD activity, most frequently with extensive UC or colonic involvement in CD; associated with other extraintestinal manifestations of IBD

Type 2 (polyarticular [>5 joints])[4] - Chronic, lasting months to years; more likely symmetrical, affecting small joints of the hands; independent of bowel activity

Enthesitis affects the following parts of the body:

Heel - Insertion of the Achilles tendon and plantar fascia
Knee - Tibial tuberosity, patella
Others - Buttocks, foot
 
Her pain is mostly in the hips, low back and knees with less frequently in shoulder blades ankles and wrists, and least frequently in thumbs. No plan, just some labs, 3 view sacral xrays and come back in 3 months. :(
 
That's weird. That sounds more like axial arthritis (spinal/SI joints) than type 2 of Crohn's related arthritis. The type that would not respond to Imuran or MTX, but would respond to NSAIDs or Biologics.

Also, sacral x-rays usually would not show anything at this point. X-rays don't actually show inflammation, they just show damage. It can take 8-10 years for damage to show up on x-rays (of course, it can be faster too). That's why MRI's are usually done, especially on kids.

But often doctors will treat based on the symptoms and don't require the MRI. The no treatment thing is not good - do they want the arthritis to progress or cause damage to her joints? It's like not treating Crohn's - over time inflammation causes damage. And once damage is done, it's done. It's not reversible. I don't mean to scare you, but if she does have arthritis, it is very important to treat it.

I know pediatric rheumatologists are very hard to find, but do you think a second opinion would be a possibility?
 
^^^^ yeah what Maya142 said

Ds has type 2 his is bad in his hands which is independent of his crohns
He does have arthralgia and enthsitis in his hips lower back heels knees neck and wrists

Doc tried pt therapy first since Ds was already on humira
Later tried mobic
Then added Mtx
And then increased Mtx and increased humira frequency
Ds saw Rheumo for a year and half before dx but his hands didn't get stiff etc until after a year of seeing Rheumo in all fairness

Ds has never had an MRI of his joints but
It wouldn't change the meds since his Rheumo is very aggressive and goes by symptoms and what he can see
 
Another prednisone question: is it common for her face to get chubbier and chubbier while weaning off prednisone?
 
Hmmm my daughter's face became less puffy but very very slowly. It took a long time to get back to normal.

Could it just be that she's gaining weight?
 
Another prednisone question: is it common for her face to get chubbier and chubbier while weaning off prednisone?

My son may not be typical because it took him 4 months to taper...

But his face got fuller each week, I swear, as he weaned. Maybe it was just the cumulative effect of the pred? After consulting with dr Google, I worried that he was retaining water and there was something else going on. Face returned to normal about a month or two after taper finished. But the acne...oh my...I hope and pray she is in the majority who skip that side effect! It was difficult to look at him without thinking about all the odd things going on in that area!
 
My son may not be typical because it took him 4 months to taper...

But his face got fuller each week, I swear, as he weaned. Maybe it was just the cumulative effect of the pred? After consulting with dr Google, I worried that he was retaining water and there was something else going on. Face returned to normal about a month or two after taper finished. But the acne...oh my...I hope and pray she is in the majority who skip that side effect! It was difficult to look at him without thinking about all the odd things going on in that area!

Yeah, she definitely has acne from it. I'm assuming that will resolve too?
 
My daughter's acne went away once she was off Prednisone. It really took a long time for her face to get less chubby though and back to normal - I'd say about a month after the taper finished.
 
I have a friend who's daughter has hyper mobility syndrome. She sees a rheumatologist who's only recommendation is physio and some supports. She takes pain killers regularly but that's it - very frustrating
 
A was diagnosed with hypermobility syndrome although I don't believe she truly has it. I think she's flexible because she's a dancer! But her Rheumo blamed her joint pain on hypermobility syndrome and I could never convince him otherwise. Mtx did not help her joints and neither did PT. Her pain was mostly in her back, knees, wrists, and occasionally ankles and one shoulder. She never had swelling or decreased range of motion. Just stiffness and pain.
 
A was diagnosed with hypermobility syndrome although I don't believe she truly has it. I think she's flexible because she's a dancer! But her Rheumo blamed her joint pain on hypermobility syndrome and I could never convince him otherwise. Mtx did not help her joints and neither did PT. Her pain was mostly in her back, knees, wrists, and occasionally ankles and one shoulder. She never had swelling or decreased range of motion. Just stiffness and pain.

That sounds like J, except she's super loose jointed and feels like her knee caps are going to pop off if she stands too long or runs. It definitely seems the joint pain is getting worse over time. I actually think there are some key studies missing since they've made this syndrome, such as what treatments work for people with mixed Crohn's and HMS. The 6MP helps her belly and inflammation. Will the Remi do more? If not, what can help? The prognosis seems to be very ugly for EDS-3. Is irretractable pain is in her future?
 
Does she exercise ?
That is one key thing for either EDS
Or arthritis and most pain management
Excerise increaes muscle which supports the loose joints and tendons
I have hypermobility -3 since I was tiny and yes your knee hip etc can feel like they are barely hanging in there
But it's not too bad after you figure out how to strengthen things
Our Rheumo recommends swimming first
No stress on joints
Automatically stretches things
And works multiple muscle groups at once uniformly while supporting the joints
Works for hypermobility stuff and for arthritis stuff
Ds has been swimming competively since age 6
Helps a lot
 
6mp did seem to help her joints but we had to discontinue due to liver toxicity. Prednisone definitely helped. I know she had more than just normal aches from dancing, and I don't think she had arthritic damage, but I have no idea what exactly caused her pain and stiffness. IVIG seems to help as well so I can assume it's an immune issue....maybe.

I hope you find something that works for J. Kids shouldn't hurt like that. Breaks my heart when they do.
 
That sounds like J, except she's super loose jointed and feels like her knee caps are going to pop off if she stands too long or runs. It definitely seems the joint pain is getting worse over time.

That does sound like hypermobility. We have been told just PT to strengthen the muscle around the joint.

We have not noticed any change in hyper mobility and the associated pain on biologics (M's shoulders are very hyper mobile and cause her a lot of pain). Swimming and the exercises her physical therapist gave her made a BIG difference. She doesn't have EDS though.

I have met kiddos (well, really young adults) with EDS - many do live with pain but also live pretty normal lives. The two kids I met did not have Crohn's, so they just took NSAIDs for pain. Neither was in a wheelchair or anything like that.
 
Could J try Voltaren gel? Less is absorbed systemically, so it's not as hard on the GI tract. My daughter uses it a lot on her knees.
 
Thanks everyone. I was stupid to look it up on the general internet - I always freak myself out when I do that.
 
Sending hugs - both my girls are HLA B27+ and so is my husband. Doesn't really mean anything except that she's more likely to have JSpA/AS.
 
^^^ yeah that
DS is hla positive
90% of kids with JSpA are positive

But so are a lot of Northern Europeans or 8% of the population that don't have arthritis
 
90% of caucasians with AS are HLA B27+. It varies for other groups (my kids are half Indian and no one can tell us what the percentage is). For African Americans, it's like 50%.

I'd hope her rheumatologist is taking her joint pain more seriously now...how is J feeling?
 
She is starting to have diarrhea and abdominal pain again. The abdominal pain has gradually gotten worse, but today is the first day of diarrhea since getting her c.diff under control. Joints have been okay, but hips are hurting again today.
 
Poor J :( - I hate that she has to flare before they'll consider Remicade.
 
Sorry to hear this. Fingers crossed that your GI will finally consider biologics.
 
She is starting to have diarrhea and abdominal pain again. The abdominal pain has gradually gotten worse, but today is the first day of diarrhea since getting her c.diff under control. Joints have been okay, but hips are hurting again today.

I'm going to hope, pray, send positive energy, and everything else towards the idea that J just has the virus that some of our kids have had.

And also towards that dr feeling some urgency to put her on some new things. Like now.

Edit: I may have missed this, but have you ever done a second opinion at another children's hospital? Boston gave a pov on my son remotely as did Cincinnati.
 
She's actually on her 3rd GI. She started in Alaska. Our struggle started when we moved to Illinois and they doubted her diagnosis for a year. The first GI lasted two visits and I fired him. This GI works with a team of about 4-5 other ped GIs who see thousands of IBD kids in the Chicago area. They were making decisions based on her numbers without ever seeing her, and also doubted her diagnosis until her second admission this fall when she got c.diff and finally her FC levels, crp, esr and albumin levels matched what her body was saying... I understand where they are coming from, but the process took so long... Now she's on prednisone and I guess they may feel that taking care of the c.diff and increasing her 6MP may do the trick, but I'm not holding my breath. Now that we know each other, I don't want to start all over with someone else! What I'd do to have my Alaskan GI back!

Good news is that Jae's D is gone today... I was starting to worry about whether the c.diff was back or whether she was flaring. She was going thing sores in her mouth, and her appetite and weight are beginning to wane too. We'll keep reporting and wait and see...
 
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