necrosis episode, prognosis, treatment , others' experience please

[marycath]

[daisyd]

I have just found out that my back pain has been caused by the lack of blood supply to my bones Osteonecrosis

I don't thinks its very common

My consultant asked me if he could write a ? reasearch paper on it. he is going to talk about in his rheumatology lecture.

I started on Warfarin following an improvement since my heart attack when put on clexane, Had bone biopsy in may following Dexa scan which showed dense bones unlike oesteoporosis.( I had a dexa scan because I was on clexane and they needed to find out if I had oesteoporosis.

I don't know if thieir is any treatment for it.I am going to have physio in November.probably to maintain my posture.

I have been off sick sinse January with memory problems. My back ache has improved as i can lay down when I need to.

Hope this helps

by the way I must have had Hughes syndrome for about 15 years.only on Asprin until Oct 09.

My Heart attack was the best thing that ever happened to me.

Hope this helps

Love Karen xx

[marycath]

Hi Karen

thanks so much for your very quick reply. I had noticed someone had mentioned necrosis, and I'd hoped to get an answer. Glad you are getting some ideas from doctors, and I'll search online about osteonecrosis being a lack of blood supply to bones.

As you said, the heart attack has helped you in some ways. I had a dexa scan in 2008, and like yours it says not osteoporosis, even though I have had bone fractures, but the wrong height,(too high) was on my Driving certificate, so the scan results could be wrong. My mother had a sudden hip collapse at 79, though very healthy apart from leg thromboses, and it was pinned/repinned and infected, mum dying 3 months later. My father's mother also had a broken hip, but recovered well.

I've had severe cardiovascular attacks for many years, with no help from Aussie doctors, until last year I found a eye specialist here who knows APS, who gave me the referral to London to London Bridge Hospital. At last I am on Plavix since May, though APS/Lupus tests in early 2007 were positive, just on Plaquinel, but no doc to help.

So sorry that you have to be off work for the time. I remember how that was. Hope the memory problems are not too severe, I try to find many ways to overcome it if I can. I certainly hope the physio for your posture and back problems will be successful. Your reply has certainly helped, as I'd flown from Sydney in Aug, and had the calf severe pain and much bruising, and the Doppler scan did not show as a DVT, and have had no answers yet. Since then (end of August) I have bruising in many places. The scan mentioned 'fat necrosis', and one skin doctor said could be from a former injury- eg Netball, but with first stroke in coma, I'd been told after brain operation my left leg was paralysed. But the history then has been lost. Looking forward to hearing improvement for you. Cheers Mary

[richardbailey]

Hello Marycath

I had a necrosis episode in 1996/7 this was before my APS diagnosis but I was diagnosed with an unspecified peripheral vascular disease as the Dr’s were at a bit of a loss as to what the problem was, that I now suspect was APS.

The episode started with generally feeling very fatigued with pain in limbs and head, some of my toes becoming very painful turning deep red to purple this fluctuated, with some toes unaffected some worse than others day to day, after an angeogram I was hospitalised when one turned black. For ten days or so I was treated with Aspirin, Heparin and an intravenous drug I cannot remember the name of, this improved the symptoms and I was discharged, I returned to hospital a week or so later (may have been a month) as things had deteriorated, drugs as before, one toe was particularly bad and became gangrenous and was amputated. Taking an aspirin a day the symptoms slowly disappeared over the following year, apart from the amputation I have lost a small part of my big and little toes on the left foot this I pad out with self-adhesive felt from the podiatrist, which eases the walking.

Ten or so years on it don’t seem so bad but it was really grim at the time. It never ceases to amaze me how we can overcome adversity and adapt, I hope this helps and all my best wishes for the future.

Rick.

[marycath in reply to richardbailey]

Hi Rick

thanks so much for your quick reply and good wishes. That was an awful episode for you back then with such pain, surgery and worry as a vascular disease, and then later to have D/X of APS. I agree how we can overcome so many things, but for me it was since the early stroke and on and on, till final APS diagnosis last year. Now to find a vascular specialist, not too easy in my part of the world.

[jessielou in reply to richardbailey]

Hi Rick

Welcome and glad to meet you, sorry to hear what happened to you.

I admire you`re attitude and know it makes all the difference with the difficulties these autoimmune conditions put in our paths.

Sheer bloody mindedness keeps us going through adversity!!

Hope you well today.

Take care, gentle hugs Sheena xxx xxx

[Storky]

Its amazing how having what other people would think is a traumatic and life threatening event can end up turning your life around. Karen I know how you feel with your heart attack because it took me having a stroke to get my diagnosis of APS and sjogrens finally, but already had been told I had Hashimotos, HC and then FM.

Whats interesting from your blog is that I also have really bad back pain but facet joint and trigger point injections do nothing to help. Scans show degenerative osteoarthritis, stenosis and bursitis but now knowing I have APS you have to start wondering about the possibility of necrosis. Perhaps when I get to Tommy's I will ask about this unless they dont deal with that there and I should see somebody else......but who? After another 3 hour marathon at the anticoagulation Clinic yesterday I am feeling very jaded and worn down already by all of this with the prospect of going back on Thursday enough to make me want to jump off the nearest bridge!!

[jessielou in reply to Storky]

Hi Lyn

Sorry things tough at the minute hon, I hope Tommies can get things sorted, I`m sure they can refer you to relevent specialty (??spelling) Blessed brain fog.

Please don`t jump of any bridges, would miss you!! But I do understand where you`re coming from!!

Hope you feel better soon!!

Take care gentle hugs Sheena xxxxxxxx

[daisyd]

Hi sorry I haven't replied before. I know what you mean about the bridge but don't do it.

I think Tommy's will be able to sort it out for you, if not ,they will refere you on

Things alway seem worse when we are tired don't they and things are bad enough when we are not

Good luck with your appointment

Hope this makes sense

Love karen xx

[Berrie]

I have AVN in both shoulders now and it is considered second in pain to bone cancer according to info I've found. BUT there is a very good support group

avnsupport.org/

and it talks all about this in every aspect. The only solution for my shoulders is FULL double replacement of shoulders (WOW) which would be impossible for a person with 50+ years of agressive Antiphospholipid Antibody Syndrome, Lupus, LA, you nme it....My APS is generally consiered "primary" but other docs say it is secondary to the Lupus. I just know it's many many complicated,complex situations and my back started breaking three years ago (5 times) and that was out of the blue, but has brought an onsllaught of clotting problems (giant hemtomas, completely black/purple limbs (two full leg, two full arm, pitch black for WEEKS and hurt cuz it brought on a superficial phlebitus, etc. not DVT, but still pretty awful). It's really hard to keep up with. But this new AVN is the most painful and restrictive of anything to date and on that site, it seems to be a familiar song. I can barely use my arms (I can type strangely), but eating and picking up a hanger it's a joke!!) Hurt all the time and each doc has said NO surgery for someone with this many coagulation isssues (stroke 1991 just to name another). I was shocked to learn of the bone death because it didn't show up on exrays (until too late) and an MRI and a "hunch by Rheumy. The more I learn about it on that site and its links, the more complicated it is.

Even with such a long history of blood disorders/ lupus/ and all this stuff, I had not yet been exposed to info about AVN. PLEASE PLEASE everone, check this site out and its links: it is a revelation because it is ammunition in the form of INFORMATON

avnsupport.org/