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is there a connection?

Just wondered what link hypermobility has with lupus, Its just that i may have lupus and my daughter has severe hms so I wondered after seeing this article.
 

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Hi bex,

I dont think there is a distinctive link, there was one study done and 48% of the SLE patients had hypermobile joints, as opposed to only 15% who didnt have SLE. That's about all I could find on a quick look. Seeing as SLE is a connective tissue disease then it makes sense, but to what degree they were hypermobile they didnt state.

http://ard.bmj.com/cgi/content/abstract/61/11/1024

love
Lily
 

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Discussion Starter #5
I remember I posted this article because a lupus mother was worried that her child might have lupus. Her concerns about lupus were dismissed by the rheumatologist who decided the child ' only' had HMS and sent them on their not very merry way. The first point is that HMS needs to be taken seriously.

I have not found any reports of a link between SLE and HMS, but access to specialised articles is non existent these days. HMS certainly is a connective tissue disease but it is not autoimmune, rather a mostly inherited condition in the same group as Ehler's Danlos and Marfan syndrome.
The problem seems to come when lupus is a possibility but doctors dismiss it and don't fully investigate for co existent autoimmune connective tissue disease like lupus

Hypermobility syndrome (HMS) is a dominant inherited connective tissue disorder described as "generalized articular hypermobility, with or without subluxation or dislocation."[1(p586)] The primary manifestation is excessive laxity of multiple joints. Hypermobility syndrome is different from localized joint hypermobility and other disorders that have generalized joint hypermobility, such as Ehlers-Danlos syndrome,[1] rheumatoid arthritis,[2] lupus,[3] and Marfan syndrome.[4] Laboratory tests are used to rule out these other systemic disorders when HMS is suspected
From a sports journal 2000.

I suppose the message is to get as good a pediatric rheumatologist as possible if there are concerns a child has lupus. But a urine test CBC and ANA at the GP's can never go amiss

We have adult and very young members who have been diagnosed with both SLE and HMS but we can't draw any conclusions about a relationship from that

All the best
Clare
 

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Thanks for your research and yes HMS does need to be taken seriously, at her worst my six year old couldnt walk for more than ten minutes with the arthralgia it can cause, she still has daily physio etc and is disabled by the illness but still a happy cheeky monkey!!. I will be keeping an eye on her as she has had urine infections - only 2 but this is unusual at her age so thanks I will mention it when I see her consultant.Forewarned is forearmed and all that. She has a hard enough time so lets hope she doesnt have this extra cloud to hang over her head!!.Still very interesting. Thanks again.
 

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I know this was written in August but I was curious also. My daughter is hyperflexable, and has CNS Lupus. I also have 2 immune diseases and positivie ANA and are hyperflexable. My Aunt has Ehlers Danlos.

Sharon
 

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Hi,

Perthes Disease is something to mention to any Consultant for children suffering from leg/hip tiredness and pains. An x-ray will show the gap in the hip but a scan diagnoses better.

I have SLE plus I'm hypermobile. I have 4 boys - all hypermobile.

Eldest - has night-time pains.

2nd - receives physio and muscle have become to tight over accommodating the flexibility. One consultant suspected Perthes Disease (which is more common but rarely diagnosed). The consultants at our local hospital are very dismissive generally of any problems that present as minor and hard to diagnose. Not sure if they are dismissive due to Government guidelines on treatment or what!!!!


3rd - hypermobile, no pains
4th -hypermobile

Both my brother and sister and hypermobile.

I have a blood related cousin that had Perthes Disease (at age 2.5) and was treated. Her Mum has Lupus, both are Hypermobile

My Mum has MS and is hypermobile.

Best rule is to believe in your instincts and never give up. Always persist until a proper conslusion has been received. Never allow a doctor to dismiss a health issue, always have a follow-up to keep an eye on those mild symptoms whatever they may be.

Happy New Year to all!
 

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Hypermobilty

I was diagnosed with extreme hypermobilty in 5th grade, and now fibromylgia, and their looking at either Lupus, EDS, or that Marfan, I never thought the hypermobilty and Lupus could be linked!! After my problems with the sun I think we're leaning more towards the Lupus. I feel like a vampire all of a sudden, and I love the sun so much, it so sad to think it's what is making me ill.
 

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When my daughter (3 1/2) first started having trouble over a year ago, her hematologist sent us to a rheumy who said she is hypermobile (like myself) and therefore definately not autoimmune. Now her ANA and anti-dsdna are high. Do we take the referral back to the same doctor or find a new one to handle the SLE that her hematologist suspects she will develop eventually?
 

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Hi,

I think considering the last rheumy brushed your concerns aside you should definitely be seeking a new rheumy. Having read your other thread I would be finding one who has a lot of experience in paediatric rheumatology, AND who knows about lupus. That is a lot to ask of one doctor and you may have to travel some distance to a major teaching hospital to find someone like it. It is important that the doctor treating your daughter is very well informed and treats her properly.

Ask your haematologist for a recommendation. They may know of someone. Or you can post in the 'find a doctor' section of the forum. Someone might be able to come up with something there. I am really sorry you are going through all of this. I find it strange considering the symptoms and the blood work that you mention in your other post that the dr you are seeing still will not diagnose, it is very important that if your daughter has SLE or another AI condition she starts on treatment to prevent serious complications.

I hope that has helped.

Cally x
 
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