Hi all,
Posted over in the main AS forum and was suggested I post here sorry for some of the repeated info.

My almost 15yr old has just tested positive to RA and HLA-B27.
She has had issues with her right shoulder for some time now but we had put that down to all her swimming and surf lifesaving training. Then last year her wrists started to swell and hurt, more so her right wrist. But her left wrist /arm can not rotate out like normal. If she puts her arms out in front she can not rotate her left arm so that the palm is facing up.
She did see the doctor about this who did some x-rays and she was given anti inflammatories to help with pain and swelling but then nothing.

Then early this year she had a bad accident from her bike that only made her wrists worse, now 3months later her right wrist just keeps getting worse. She can barely write or do simple things like brush her teeth/hair. (she is right handed)
So doc ran some more blood tests. Tested her for HLA-B27 again even though she had already tested positive before and checked her RF. Again positive.

Doc has referred her to the rheumy I see but thinks she has early onset adult RA as opposed to juvenile RA.

I have so many questions but I guess the main ones are.
What are the differences between AS and RA?
Does the HLA-B27 gene affect RA or only AS?
What syptoms should I look out for/what to expect?

Also I was reading a little on RA and it did mention issues with growth particularly jaw. She has a bad underbite and acidic saliva that eats away at her teeth, fillings are erroded away within 12 months. Is there any link between this and RA or AS or just a little extra bonus?

Many many thanks in advance.
Trish

Hi Trish,

Here are some links that you may find helpful:

http://www.aafp.org/afp/2005/0915/p1037.html

http://www.bcguidelines.ca/guideline_ra.html

This link should take you to a thread with many useful links:

http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=374764#Post374764

The key differences between RA and AS are:

RA: polyarthritis (5 or more joints); usually affects joints symmetrically; typically affects finger and toe joints (as well as others); often RF positive; joint damage but no fusing; does not commonly affect the back.

AS: oligoarthritis (2, 3, 4 joints); SI joints, asymmetrical lower joint involvement; heel pain; often HLAB27 positive; iritis or uvitis common.

Of course there are other differences but those are some of the most obvious.

Hope that's helpful.

I am sorry to hear about your daughter's test results, that must be hard for you. I was dxd 2 years ago with RA and I have a hard time using my right wrist. The thought of a young person having RA is big news to digest. I have only a few things to say after the last two years of RA.
I would take prednisone for a couple weeks at a time but never long term, it is VERY hard to get off of and can cause so many bad side effects.I am still taking pred and tapering 1mg a month and it is very hard for me to wean off of it, but I am slowly doing it.
Secondly, diet has helped me tremendously even though I do not have AS, I felt sooo much better when I started taking away the grains and dairy. She needs to grow so I am not saying don't let her eat grains and dairy, I am just saying if she is in a bad flare you may want to help her pain for a few days by avoiding grains and dairy , it does help my pain levels tremendously. You may want to read "Eat to Live", by Dr.Fuhrman, he has helped RA patients with diet and he has kids of his own that eat what he prescribes as a help to put RA into remission. I read the book and I think it is a good resource. I'm not againest medication, but I think if you can help her with diet , why not try it , right.
Again, sorry you have to go through this, I'll say a prayer for the both of you. Take care,
Sheri

my impression was that RA is inflammation in the synovial fluid and the spondyloarthropathies involve inflammation of the entheses.

are her joint problems more "in the joint" problems? or more enthesitis (tendonitis, torn tendons and ligaments)?

i'm guessing since she is RF positive, what the answers are.

and while AS may involve HLAB27, only ~25% of undiff spondy patients have that gene. plus spondyloarthropathies usually involve inflammation within the GI system as well (even when asymptomatic, often inflammation in the ileum). but a lot of gastritis and IBS if not downright IBD with the spondies.

i don't know as much about RA, so don't know the association with RA and GI inflammation. much more familiar with that as it applies to the spondies.

my naturpath doctor said she has an RA patient who did the food allergen testing, then stayed away from the foods that she's sensitive to, and that helped her a lot.

my compounding pharmacist told me that the way i describe LDN helping me is the way his RA clients describe it helping them.

read recently that a lot of people are both gluten and casein sensitive and steering clear of those helps a lot of people. for me its the casein.

Thank you all so much. I have a lot of reading to do obviously. Thanks for the links.

Not sure what the issues are with her joints at this stage as she has only had basic x-ray that show no signs of anything obvious in her wrists. I will be pushing for MRI for more answers.

Of note is just recently she has been having a lot of problems with pains in her tummy. Up high not "female" pain. Did not even bother to mention this to doc as he was quick to refer her and thought as it was settled at the time we will just bring it up when she sees the rheumy.

Also of note: She has been getting a lot of headaches lately as well as lower back pain. Headaches worse than the back pain though. No idea if any of this fits in or if it has anything to do with eachother.

Probably made a wrong decission today when I let her go and play rugby with the school. She is in a world of pain now but she really wan't to do it and I figure it will likely be the only time she ever gets to do it.

Well I best get started on reading those links.
Thanks again.

I am sorry that your daughter is experiencing problems. Arthritis in childhood is a much misunderstood disease. The signs, symptoms and problems associated with it are different then adult disease. I am glad to hear that she has been referred to a Rheumatologist, but it would be better to see a Pediatric Rheumatologist if that is at all possible. (They are few and far between.) If she does have Spondylitis or RA, (the chances of her having both are remote) her doctor should be able to help her get her symptoms under control so that she can lead a completely normal life. Early diagnosis and early aggressive treatment have been shown to be most effective in dealing with juvenile Arthritis/Spondylitis.



Most children with Juvenile Arthritis (in any form) do not have a positive Rheumatoid Factor. The positive Rheumatoid Factor result in a child can be an indicator of more adult type RA.



Juvenile Ankylosing Spondylitis does exist, but is extremely rare. This diagnosis would indicate that the patient had enough evidence on imaging to diagnose adult AS (Sacroiliitis bilaterally grade2+ or unilaterally grade 3+). Most kids with Spondylitis have Juvenile Spondyloarthropathy (JSpA - think Undifferentiated Spondy) or Enthesitis Related Arthritis. JSpA can affect the back, and really any joint, but predominantly effects joints in the feet, ankles, knees and hips. Enthesitis Related Arthritis is more enthesitis related and seems to be applied more frequently to kids who are HLA-B27 negative.

HLA-B27 has a relationship to AS but not to RA. It is possible to have RA, be HLA-B27+ and not have AS. As you know HLA-B27 is a perfectly normal gene in 8% of the population. Most never develop AS. Even with HLA-B27+ and the strong family history, her chance of eventual AS is increased to 20%. However, add in the current joint pains and other symptoms ..... Best to let a qualified Rheumatologist make that assessment.

While waiting to see the Rheumatologist, I would take note of any joint swelling, heat, or pain/stiffness she experiences. Other symptoms like fatigue, lethargy, fever, etc should also be communicated to the Rheumatologist. Any indication of eye involvement should be dealt with immediately - JRA can effect the eyes too.

By the way, in the US anyway, JRA is now more commonly referred to by physicians as JIA - Juvenile Idiopathic Arthritis. I don't know if it is the same in other countries. It is generally considered Juvenile (JRA, JIA, JAS, etc) if the problem begins before the age of 16 - regardless of the form or severity of the disease.

I hope she gets in to see the Rheumatologist soon.

I am sorry your daughter is suffering with pain. It must be hard on you too seeing her suffer.

I would get her in to see a good GI doc, Rheumatologist and get her tested for food sensitivities/allergies. I do believe our autoimmune issues usually start in the gut. Maybe try putting her on an antiinflammatory diet too in the meantime.

In terms of letting her play rugby, a girl needs to play and socialize. In my eyes, you did nothing wrong as a Mom letting her play. She will have to learn through trial and error how much activity she will be able to tolerate.

Hope you get some answers soon.

Shari

Thank you all.
Good news is because I called my rheumy and told him about my daughters referral he has decided to see her as an adult patient. And instead of the normal 12 month wait list for new patients she has an app on the 5th June so not long now.

Not so good news is she came home today with a lot of pain in her lower back/si area. First time she has ever had the pain this bad. Whilst I was sympathetic I tried to not make too big a deal of it. I don't want her getting all worked up before she has seen the rheumy.

Thanks for caring.

Well I have done an update on the main forum. Daughter went to my rheumy and he has now diagnosed AS due to SI damage shown on x-rays. He says the RA+ is just an aside and he will not diagnose RA for her but he has diagnosed AS.

I am sure I have read others here have both. What do you think are the chances of my daughter having both and how do I tell?
Thanks