Other than medication has anyone found anything that helps with memory and tiredness? Mine has severely got worse in last 6 months...

[butlertammy]

I've only been on 1 baby aspirin a day for the last year. I sleep about 8-10 hours a night. And always had memory issues but seems to have gotten significantly worse and now really struggling at work and home.

[MaryF Administrator]

Well I am doing very well on LDN.... but do not take Warfarin or similar, now aspirin twice a day... but I also have four other diseases and had such late diagnosis due to being sero negative systemic Lupus for years... that the standard drugs and most antibiotics even... render me in full allergy. It is suiting me well, but most doctors have not heard of it. It is the most success I have ever had with anything, I have even reduced my thyroid support! Mary F x

[Manofmendip]

Hi Tammy.

Who is managing your APS? it may be that Aspirin is not sufficient to keep your symptoms at manageable levels. I am on Fragmin injections and 75mg Aspirin and I used to be on Warfarin and 75mg Aspirin.

Best wishes.

Dave xx

[Lure2]

I agree with Manofmendip above!

Kerstin

[butlertammy]

My gp referred me to a haematologist but I've only seen him the one time about 18 m ago to review my test results. My gp has been managing it since but hasn't made any suggestions for another test... I'm in his office Monday for a flu jab so maybe I will put a request in for a blood draw.

[jetjetjet]

Hi - tammy - i was put on hydroxychloroquine a few years back , it has helped with many symptoms-- it might be something to consider- as far as the drawn out feeling ?? but it may help -- i take 400 mls a day. just a thought .------------ jet

[Salty]

I agree with Dave as well. I also take heparin and an anti-platelet agent, the combination allows me to be free of headaches, trouble thinking and other things. I'm not sure what blood test you are thinking of getting, but once you have been diagnosed with two positive tests 12 weeks apart, there is really no point in repeating the antibody tests/LA.

[daisyd]

Hi you definitely need to see a Haematologist or Rheumatologist as soon as possible I was on Asprin and it wasn't good enough. I see in the past you have have had TIA' s

If you can afford it, go to London bridge and have an appointment with someone who knows about this condition

Please don't leave it.

[Manofmendip]

Hi Tammy

I agree with daisyd that an appointment with Prof Hughes or one of his team at the London Lupus Centre, London Bridge Hospital would be a good idea. Where are you in the UK?

Prof gave me a two week trial of Fragmin in 2002, which had a big effect on my symptoms, so I was put on Warfarin.

I also agree with Salty that if you have had two positive tests 12 weeks apart then you have APS and it needs appropriate management by a Dr who is knowledgeable and up to date on the disease.

Best wishes.

Dave x

[TJSTICKYBLOOD]

I'm on warfarin and plaquenil but still have problems with my memory and brain fog. Medicine wise I can't give a cure but I use a lot of memoir aids setting alarms, reminders in my phone. Putting notes in my outlook calendar at work. Writing things down to refer back to. It's not fool proof but has helped me a bit.

[YvonneW]

Hi. I can't afford to go privately, and see the wonderful haematologists at Guy's Hospital.There is a directory of local UK APS specialists available on the Hughes Syndrome Foundation website:

hughes-syndrome.org/self-he...

Good luck.

[Lure2]

And of course we shall stay away, if possible, from the medicaments that will affect your brainstatus. That is real important!

Kerstin