APS but do I have something else as well?

[Greenmil3]

Obviously I have APS but not sure if I’m suffering a flare up or if something else is wrong. I had a bad day Tuesday and have not been able to work since. I have no energy and have weak legs and can’t think too clearly. I do have Cerebral involvement with my APS but not felt like this before. Been coughing for about 4 months but lung X-rays have been clear in the past. I’m not too sure if I have had another cerebral event or if the lethargy and exhaustion is something else. Getting very frustrated feeling like this.

[lupus-support1 Administrator]

I recommend you see your doctor as s/he is the only person who can advise you.

I hope you feel better soon.

With good wishes,

Ros

[KellyInTexas Administrator]

I second the advice Ros has offered you.

So sorry you are having this difficulty… APS affects everything,

[Bobbydoodle]

It’s just awful when it’s floors you like that isn’t it. I have APS (take warfarin for that) and a couple of years later I was diagnosed with Lupus SLE (hydroxychloroquine and vitamin D prescribed at that point). I find it hard to distinguish which is causing the symptoms as both seem to cause similar in terms of fatigue.

What medication do you take as I know some people who has APS also take hydroxychloroquine which can help fatigue?

On another note what is cerebral involvement? Hadn’t heard of that for APS and it’s good to know as I find it hard it is harder to find information on APS so I like to learn along the way.

Good luck if you decide to see your doctor.

[KellyInTexas Administrator in reply to Bobbydoodle]

Cerebral involvement:

TIA

Stroke

Seizures

Migraines/ Hemiplegic are if special concern.

Neuro psychiatric ( very broad - includes migraines, brain fog, low mood, aphasia, ataxia, visual confabulation, auditory hallucinations , ( can be signs of temporal lobe epilepsy or stroke)

These are just a few. Please ask your specialist for actual clarification from a real doctor, as we are not medically trained to explain this properly.

[Greenmil3 in reply to Bobbydoodle]

Bobby

Diagnosis is Cerebral APS with Lupus like syndrome (not SLE)

Current drugs are

Hydroxychloroquine 400mg

Lansoprazole 30mg

Pregablin 50mg

Warfarin 8mg / 7mg

Amitriptiline 20mg

Atorvastin 40mg

Co-Codamal 30/500 2 a night and as needed

I am under both Guys Haematology and the National hospital for Neuroscience and Neurosurgery.

I have never had DVT’s or a full stroke but have been told my brain damage is due to multiple minor strokes. If you look that up all you find are TIA information and it’s not that!

I have not had the chronic fatigue that I had last week before. It wax so bad I could hardly stand up.

I am not actively managed although can go back to Guys whenever I feel a need but as they put it there is nothing more we can do for you, you are on all the right drugs!

I am having a further form of a PET scan next month as have already had 2 standard PET scans in the last two years. So I will wait to see if further brain deterioration.

Maybe I had some new novel form of Covid or severe bronchitis.

Thanks for your messsge

[GinaD]

If one is diagnosed with an antoimmune disease, one's chance of acquiring a 2nd increase by 50%. Do keep a journal of symptoms along with food and activities log. Maybe you have developed a food sensitivity and spotting a correlation between food and symptoms may help identify that. Consulting with a trained nutritionist or a functional medicine doctor can also help spot any of these.

[Jianna35]

pubmed.ncbi.nlm.nih.gov/272...

[Greenmil3 in reply to Jianna35]

Thanks but not very helpful for me

[Lure2]

As APS means too sticky blood I wonder if you have anticoagulation and if that anticoagulation is helping you as it needs to be rather strong. If using Warfarin you perhaps need a high INR and also stable. You have seen Specialists I have read. I know you used Warfarin before. You were then surprised that some drugs could change the INR. So many things can change the INR. Also we have to test it often otherwise we can have a drop without knowing about it. This is a difficult illness and we need very good Doctors who are willing to support us with our sticky blood. It is difficult to diagnose us with the correct diagnose and treatment as many autoimmun illnesses have the same symptoms and they go hand in hand. Many of us also have several diagnoses. The Specialist is important that he or she is very knowledable .

[Greenmil3 in reply to Lure2]

Lure

Thanks for your words