Saw the rheumy at Duke yesterday . . .

[GinaD]

. . . and she thinks that my hip pain is probably orthopedic in nature. So, I'm heading back down there in a couple of weeks to see an orthopedist. As far as the APS is concerned, she is running additional blood work that has not been run on me in the last 10 years looking for Glyco Beta B protein levels (I've heard of them on this site, but I really don't know much -- or even if I've got the name right,) and, of course, an ANA. So -- no diagnosis of the hip pain yet, but I feel I am back on course to getting a diagnosis, a treatment plan and/or prognosis. Ignorance is NOT bliss.

And yes, I do think this Duke doctor, Dr. Kraul, knows more about APS then I do. That was one of my objectives -- to find a rheumy knowledgable about APS and the more recent studies and conclusions.

(And a shout out to anyone headed to Duke -- the "Duke Condominiums" are a great place to stay. They offer a Duke Clinic patient discount, you get a bedroom a kitchen and a living/work space, free parking and free shuttle service to the Clinic -- for @ $100 a night! Good deal. And it was clean. And quiet. And there is an outdoor pool. And, improbably enough, an outdoor chess set. I opened with pawn to QP4 but left before anyone responded.)

[MaryF Administrator]

Hi there, you have made some good progress with this... and I had awful hip pain twice, once after each of my last children was born.. could hardly walk.. and at times not move. It was inflammation, although they never said the cause... I was relieved when it decided to go away though. Like the sound of the outdoor games! Also good to hear about the new medical avenue! Mary F x

[Hidden]

That's good news that they know so much! I hope I will be so lucky when I see the new rheumy they are sending me to!

I hope the ortho gets the hip sorted, I would sell my soul to get rid of this hip and back pain I have been having- going on nearly a year now and its REALLY getting old and not getting any better.

[GinaD]

SI, how many is us Hughies have hip/lower back issues? Should I start a poll?

Gina

[GinaD]

Yes, but I wonder . . . Is the frequency of lumbar/degenerative aging issues the same, lower or higher for us then the general population? And if higher, ( which I have come to suspect,) is it due to APS medication? Or life style changes? Or does the disease activity play a role? Or do a lot of us have some --I believe " comorbidity" is the word? such as thyroid issues? Or lupus? Or RA? Or one of those charming spondaloarthropothies?

[Salty]

Avascular necrosis (not enough blood supply) of the hip can occur due to APS. MIT has been well described by Prof Hughes and one of his colleagues Dr Sangle, an orthopedist. It is treated with anticoagulation. Don't know if that may be what you have or not.

[cami in reply to Salty]

I have lumbar issues also......disc degeneration and arthritis...have actually just had spinal injections which have not worked so awaiting to be stretched and injected again in the next couple of weeks! I was led to believe by my GP that aps causes arthritis to worsen due to circulation! certainly has for me!!! or may be its the sjogren's? my Doctor and I watched the arthritis in my knee go from not much to needing knee replacement within 2 years!!! it was so quick he could not believe it! there is of course ankylosing spondulitis an immune disease of the spine which I believe the glyco beta B test is for??? dont take my word on that though....I would have to look through all my paperwork to check as I have had the test! and boy have I got paperwork!!!!!xx

[3boys in reply to Salty]

I just replied to that. I have AVN, and it hurts!

[3boys]

'I have AVN, avascular necrosis. I have it and it hurts really bad! It is a loss of blood supply, they say I will need a new hip. But now I just deal with it. I hope you continue to get answers!

Good luck!

[Salty]

Cami, the beta 2 glycoprotein is one of the newer antibody tests for APS, like anticardiolipin. Lupus anticoagulant is the hird test(but is not an antibody)

3 boys: are you on warfarin or heparin? I had a stress fx/avascular necrosis of one of my toe bones and it got better quickly on anticoagulation. Most orthopedists don't know about this association with APS.

[cami in reply to Salty]

Thanks,,,,,,, knew I had heard of it!!!! saved me looking through paperwork!!! all these tests!!!!!! Just can not remember what each is for!!!!

[Manofmendip]

Hi Gina

I had a sudden onset hip problem in 2006.

Nothing showed up on an xray but after visit to one of Prof Hughes colleagues at the London Lupus Centre he told my GP to book me an MRI. This showed up fluid in the hip joint, fluid in the bone marrow, and transient osteoporosis/AVN. I saw a hip specialist who said that he was certain that APS had caused this and that it would pass with time. He did another MRI about a month later and things were very much better. The pain and lack of hip movement took months to go but were helped a lot by cycling, which improves blood flow and tissue drainage.

Best wishes.

Dave

[GinaD in reply to Manofmendip]

Very interesting. I have noted that cycling helps me, though if I opt for speed instead of a nice high rpm then the next day I am walloped with pain all up and down the left quadracepts.

Tell me. Was your hip pain bilateral? Or only on one side!?

[Manofmendip in reply to GinaD]

Hi Gina

My hip pain was just in the right hip and I had very restricted internal and external rotation but cycling was very possible to do.

I try to keep a highish RPM when I cycle these days, as I did when I raced years ago.

I am finding that recently I'm experiencing very tight and painful muscles, even at the start of a ride, and I get knotted, cramp like spasms after say 2 - 3 hours of riding, whereas even last year I could do a 100 mile ride without anything other than tired legs at the end of the ride.

Also interestingly I find that when I'm cycling I never experience my 'funny turns', which Prof Hughes says are small TIAs, whereas I can get them when I'm sitting or just moving around normally.

Best wishes.

Dave

[GinaD]

I see an orthopedist next week baal down at Duke again. Looks like we'll gt to drive down amid the remnants of Hurricane Issac. I'll. confirm rotation limitations, one provider noted no problem while anotheer found profound restrictions.

I'm still just a baby cyclist. Yesterday I hit 10 miles. 10 slow miles. But I find it wonderful to be able to travel on my own without pain. next month I hope to join my Trail Club, not for a hike, but for a 37 mile out and back bike ride on the Hocking/ Adena Bike Trail in Ohio.

I remember during my hike on The West Highand Way meeting a couple of couples who were biking from Cornwall to John o' Groats. If my hip does not improve perhaps I'll substitute this dream for a repeat of the WHW with the Great Glen Way added in.

Gina