Have any of you been diagnosed with small vessel disease as well as the Hughes. I believe this means we could develop vascular dementia .

[Zamalek]

Has the Hughes caused the small vessel disease, and the memory problems could be the start of

vascular dementia.??/

[Lure2]

.Hi

When I started Warfarin and had an INR over 3.0 my neurological symptoms disappeared. But I have still a little left of vascular dementia (call it so if yo like),. I have been tested by a Norwegian professor of Neuropsychology regarding vascular dementia or memoryproblem.

We get memory problems if we are not enough anticoagulated. I was told by a specialist that I had micro-embolies

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

Hi I hope this is useful, a paper for you to look at: clinexprheumatol.org/articl...

MaryF

[Lure2 in reply to MaryF]

Thank you Mary!. Interesting indeed.

Kerstin

[DannyBoy1 in reply to MaryF]

This is a great summary and confirms a couple new things for me. Thank you Mary.

[MaryF Administrator in reply to DannyBoy1]

Thank you for feedback, I/we do our best to try and give good information and of course we all learn from reading it, always something new, or a new angle or article. MaryF

[Lizlauren in reply to MaryF]

Hi all, I have vascular disease with both inner corroded artery's having severe calcification. I don't have the anti-phos S. but factor 5 Leiden for which I am now all the way up to taking 10mg of arixtra daily. This drug is not a home med but a hospital one; I need it because even though my inr stays around 2.2-2.5 im throwing dozens of pulmonary emboli insitu. doc's would like it at 1.9 but I have had 3 massive bleeds-lung, needing a thoracotomy with decortication, 10 blood trans (my crit was 15 on my way into o,r,) A perennial bleed, 7 blood trans and a maxillary artery bleed after a surgery. Now you know why I refuse to raise me dosage of ant-coag. My question is does anyone have an opinion on not having a better inr range for better control of small vessel disease which has now caused severe memory loss. balance problems an ear ache that comes and goes and the calcification issues I'm having. I also got a diag of epilepsy. too add to this list sle with mult organ involvement including my hypothyroidism, which is an important part. I have developed fibrosis of the lungs, Raynaud's, a uncontrolled case of hereditary angio edema presently which is picture worthy in a medical book, grossly swollen eyelids face, tongue, throat, hands and lower legs. Major G I issues with pain and peristalsis issues. Hands and lower legs tingle burn and ache.

Does anybody see something in my problems that you might be experiencing? I know this is a hughes syndrome forum and I have factor 5 Leiden and they are different, but I see so many of the same brain issues on this fab site. Does anybody see something that my Doc's ar not, I have lost my faith in them and I feel like their missing another possible diag. Thanks for your time

[MaryF Administrator in reply to Lizlauren]

Certainly you need to look at your B12 and iron levels, and also check out your vitamin D, if any of these are low it will not help. Pernicious Anaemia can easily be missed. Also if you have gut issues, consider giving up gluten entirely, it is possible to be gluten intolerant without having Coeliac Disease Also you Thyroid probably needs more investigation, the current TSH test is very unreliable and if you are on thyroxine it may not be doing the job, some with autoimmune do better on the natural desiccated thryoid treatments.

health.harvard.edu/blog/vit... MaryF

[Lizlauren in reply to Lizlauren]

I meant to say my Doc's want my inr much higher then 3.0 not 1.9.

[SueLovett]

Yes I have Small Vessel Disease and told caused by APS. I am on Clexane but still suffer from quite severe cognitive impairment however I don't know how much worse it would be without theClexane. Have just been prescribed steroids as well. X

[Zamalek in reply to SueLovett]

Could you tell me why you dont take Warfarin? Have you not had a clot? Following a clot in 2008

Prof.Khamashta put me on Warfarin. When I transferred to St.Thos. under the NHS my INR

level was reduced over a year, from a previous 3-4 under Prof.Khamashta to 2-3 under another

Consultant at St.Thos. However Hydroxychloroquine was added, which has helped tremendously

with the fatigue and terrible muscle pain. However it is my brain which causes me most anxiety, and

I have asked for my INR levels to be increased, they are now at 2.5 - 3.00.

Has anyone mentioned vascular dementia to you, perhaps I am worrying unduly about deterioration.

[Bonnie39]

I was told I have this and that this was the cause of my stroke and TIAs, whoch were initially put down to stress and "cluster headaches". However, due to a year and a half severe (what I tjought) ear pain my neurologist spoke to a haematologist who said I shoild have my blood tested and sure enough it came back with a +ve ANA, plus lupus anticoagulant and antiphospholipid antibody syndrome.

The stroke and TIAs were then put down as clotting events, I was put of lifelong warfarin with an initial INR target of 2 - 3 which has now been raised to 2.5 - 3.5.

HTH.

[Lure2]

The problem is gone if you have an APS-doctor that understands that you need a therapeutic INR-range between at least 2.5 - 3.5 and to aim for the upper half. I do not feel good under 3.0 but I selftest so I can decide for myself.

Best wishes from Kerstin in Stockholm

[SueLovett]

In answer to your question I am on Clexane because I am allergic to Warfarin. I have suffered from TIA's and have lesions on the brain. Unfortunately I am allergic to lots of medication including Hydroxychloraquine which is disappointing as I understand it really helps. X

[Zamalek]

Thank you for your reply Sue, and I am sorry about your unfortunate allergies to medication.

In fact I have been taking hydroxychloroquine for about 18 months now. I found that it has helped quite

considerably, I guess I worry about the dementia possibility too much instead of just getting on with

things. If I didn't have the knowledge I wouldn't be worried.

[Lizlauren]

thanks so much, great article.