Do all the aps symptoms disappear with proper anticoagulation mess?

[Calico]

If not, which symptoms persist? Also, anyone here on arixtra instead of warfarin?

My hematologist says arixtra is more powerful.

[Salty]

My constant migraines, blank spells in my thinking, stuttering and bone pain (with evidence of stress fracture/avascular necrosis of my metatarsal bone on MRI) all resolved on lovenox and plavix. Lovenox is more effective for me than warfarin. I also have dysfunction of he autonomic nervous system diagnosed at the Mayo Clinic that has not resolved with anticoagulation. Prof Hughes says he has seen many cases of various autonomic disorders associated with APS but like most other neurologic manifestations of the disease it usually responds to proper anticoagulation. That has not been the case for me. I'm going to try IVIG soon.

[SueLovett]

No!

It is an autoimmune illness and research is ongoing.

Recent studies are pointing to APS causing other symptoms and complications.

There was some discussion regarding this at the Annual Patient's conference, it is worth watching.

My symptoms have not resolved with Clexane, although there was a dramatic improvement at first. I think the fact that most of us who comment on this site have ongoing health issues.

[jean48]

Yeah I think the anticoaglation meds helps to prevent future blood clots and stroke. For me the joint pain, attention deficit and brain fog prevails.

[Calico]

Thanks everyone for your input. Despite being on arixtra and aspirin I continue to have fairly severe neurological symptoms. Just wondering if that is unusual or I should push for different anticoagulation. Obviously not as simple as that.

Appreciate that folks on this site respond and in a timely and thoughtful manner.

[Salty]

I would push or lovenox/clexane trial to see if your symptoms improve and if they do, it would be worth a trial of warfarin --Prof Hughes recs INR 3.5-4 for pts with neurological APS.

[jessielou]

Hi hon,

I find symptoms improve when anticoagulants and inr at right levels, but not disappear, no!

I think we are all different in how our bodies react to meds,

There is still so much to learn with Hughes syndrome, it's a slow process, sadly

I hope you feeling ok today.

Take care gentle hugs love Sheena xxxxxx

[Manofmendip]

Hi Calico

I had very good symptom control on Warfarin for 7 years from 2002, apart from a clot in my right hip and some ischemic bowl problems. At the end of 2009 I had a return of migraines and in February 2010 the start of my 'funny turns' as I call them; a sense of being pushed or turned or tables moving while I'm stood or sat at them. Prof Hughes has put me on Fragmin instead of Warfarin and this has had mixed results; some weeks are good and other weeks I have multiple 'funny turms' per day.

Anticoagulation only helps with clotting issues but not the other, inflamatory effects of the antibodies on various tissues.

Best wishes.

Dave

[CanaryDiamond10 in reply to Manofmendip]

Dave: Could you "funny turns" be attributable to inner ear imbalance? Or something, like a cyst or tumor, pressuring a nerve? Just a thought. Maybe at your next MD appt. you could inquire.

True story: My brother, relished hunting season as the rest of the State of Utah considers October the Holy Month of the Hunter. They close schools for a week because many fathers and sons still get the family's winter meat hunting moose, elk, bear. deer, etc., and freeze it for the year. My brother, having six girls and wife to feed, went hunting every year. During one of those years a tick had crawled inside his ear as he slept and was munching on his inner ear causing excruciating pain. Of course he waited till the pain was unbearable, went to the ear doctor and the culprit was discovered having dinner! My brother was scheduled for outpatient surgery the next day but it took weeks to heal and get his balance back. He never recovered full hearing. Honest to goodness that is a true story and the emergency room doctor says he sees it all the time in October in Utah.

Just a thought, worth a look to get rid of those funny turns.

Smiles and good wishes,

Canary

[Manofmendip in reply to CanaryDiamond10]

Hi Canary and thanks for your suggestions.

Thankfully, I have had a recent CT scan of my cervical spine and vascular imiging and also an up to date MRI/MRA of my brain; these have ruled out tumours and other compromises of nerves or blood vessels and the MRI showed no changes over the previous three scans, over a period of 30 months. The vascular imaging did show normal, minor, age related, arterial changes but no major restrictions to blood flow, such as would cause my problems.

It is very likely that the 'blood sludging' - that Prof Hughes thinks are at the root of my problems - is causing basal and vestibular ischemia and this is certainly why my ears buzz and whistle during a 'funny turn'.

Smiles, hugs and very best wishes.

Dave

[happee1]

hi,since i have been on warafin i do feel better.. i can usually tell if i am to low in my pt level and i do still get flare ups..but over all i think i am better on the warafin instead of plavix..

i did really good on plaquinal but i am allergic to it..

i don't think it ever just goes away but can be controlled to some measure somewhat like arthritis it is with you forever but you can control it a bit..

[Rhian21]

I found out that I have APS after having 6 MC's. I have not had a DVT thank goodness. I also have Ankylosing Spondalitis osteo arthritis and Fibromyalgia. My APS test results fluctuate between positive and negative. I take aspirin and hydroxychlorine. My symptoms are as bad as they were before I took meds I'm afraid. In particular the migraines, joint pains, lethargy and giddyness. I've always put my back pain, groin pain and back spasms down to the ankylosing spondalitis and I guess I've learnt to just ignore or get on with a host of other symptoms i.e. the vein rash, hearing loss etc ..

[Salty]

Calico, what neurological problems are you having?

[Calico]

Hi Salty, symptoms include difficulty swallowing, all kinds of dizziness, very loud ear ringing, weak leg(s), vision issues, headaches and numb ears, back of head.

These all come and go but there is always one or more of them at any one time.