Other than medication has anyone foun... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,411 members10,622 posts

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

butlertammy profile image
11 Replies

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.

Written by
butlertammy profile image
butlertammy
To view profiles and participate in discussions please or .
Read more about...
11 Replies
MaryF profile image
MaryFAdministrator

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 profile image
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 profile image
Lure2

I agree with Manofmendip above!

Kerstin

butlertammy profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Lure2

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

Kerstin

Not what you're looking for?

You may also like...

I understand that APS can cause tiredness but has anyone found anything that helps?

My husband has had iron tests and put on iron tablets as surgery risky with being on warfarin but...
Vespa1 profile image

I am 70 years old and have APS. Is there anyone else older than me on this site that has got APS?

I would be so interested to know. Perhaps you have a relative with APS older than 70. Kerstin
Lure2 profile image

2018 be Done

Well my fellow Sludge Bloods -another years behind us and a NEW more exciting one to come. A...
jetjetjet profile image

Saw the rheumy at Duke yesterday . . .

. . . and she thinks that my hip pain is probably orthopedic in nature. So, I'm heading back down...
GinaD profile image

Moderation team

See all
KellyInTexas profile image
KellyInTexasAdministrator
HollyHeski profile image
HollyHeskiAdministrator
lupus-support1 profile image
lupus-support1Administrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.