lupus and cerebral small vessel disease.

[Ali3]

Hi ,

I have had SLE for 17 years, and recently been diagnosed with cerebral small vessel disease. I have moderate to significant damage showing on my MRI scan, which shows the disease also in my brain stem.

If there is anyone that could give me any advice on this I’m would appreciate this.

My risk for strokes and vascular dementia has increased because of my situation.

I also have arthritis, severe osteoporosis, migraine and awful tinnitus.

Kind Regards

Ali

[Hoofprints]

Hi Ali3. I can't give you any advice as such, but just wanted to wish you well and share the fact that I too have white matter hyper intensities on my brain MRI.

The very good neurologist I had, and soon after lost to retirement, said these were likely due to small vessel vasculitis and fluid escaping from the inflamed small blood vessels in my brain.

I wonder if you have small vessel vasculitis as part of your lupus picture? This may or may not make any difference to your treatment, but it would enable you to perhaps see a vasculitis specialist for an opinion on your treatment. It might be that you would benefit from a change to your medication. Nothing to lose by asking.

I tested positive for the anti-C1q antibody (a test often overlooked by rheumatology) as well as having low complement levels and got a diagnosis of urticarial vasculitis syndrome. It's also an antibody that occurs in other autoimmune diseases such as M.S., lupus, sarcoidosis etc. Have you been tested for this antibody?

I don't think it means we will necessarily go on to get dementia, so try to not worry about that. If you can find a good neurologist, ideally one who knows about vasculitis, let me know. My retired neurologist specialised in Behcets disease and really knew his stuff. I have not been given a replacement neurologist over two years on, so sadly can't recommend one to you.

Good luck 🍀

[Ali3 in reply to Hoofprints]

Thankyou for your reply. Appreciate you giving me a few things to think about , and mention at my next appointment with my Lupus doctor. Kind Regards x

[Hoofprints in reply to Ali3]

You are most welcome.

It might be worth you posting the same post on the vasculitis site as there may be others there with experience of this.

Best wishes 💐

[YummyBear]

I do hope you are receiving the support and care from your Neuro Team. I received my recent MRI report stating 'a significant burden of chronic vessel disease but no lesion affecting the cranial nerve. Then signed me off to the GP. Nothing else was said. I feel this diagnosis is unacceptable in that there was no management plan mentioned from the Consultant Neurologist. I'm hoping my GP will discuss in detail as to what I may expect in the future! My health issues are imbalance and ear problems, both of which remain the same. I wish you well.