Think I just found out why I feel so ... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Think I just found out why I feel so bad and memory problems


My sister Nanny 23 had sent me articles I hadn't read when I posted!!! There's a site and I don't know how to put it on here that tells you if most deadliest drugs and side effects! It says that warfarin causes severe memory problems! I'm sure it does in some, but not in Kerstin! She'd be the best to answer that! I know I have to be on this med, but can I go to something else instead! I hate who I've become and wud choose to have me back no matter what the cost! I hate this way of feeling Like Dori all the time! So dumb that I go out and pass where I'm suppose to go or forget why I went out! Lately I choose not to go out and thatsNOT ME!!! Maybe Nanny 23 (the BRAIN)? Knows how to put that article on here for all to see! Or maybe you don't want it ! God Bless Y'All!!!

21 Replies

There are an awful lot of articles around which do not stand up, medically speaking/scientifically speaking etc, it does not mean that I don't read theml

I am sure you are aware that many people find their memory problems improve immensely on anti coagulation. For myself, having a very good diet improved things for me, I had always had a fantastic diet, but I removed gluten, completely, also having my B12 up to scratch, also my iron, and my vitamin D, and often the elephant in the room - the Thyroid. You are probably aware that if articles are not balanced I do take them off here anyway, keep well. MaryF

Debbweb01 in reply to MaryF

Hi Mary I was low on Vit D, B12, and Magnesium! Been taking vitamins my sister Lynn had recommended!!! You have always said that! After 5 days today is my best so far! Woke up feeling a bit stronger! Thx for all u do!

Never heard of that before. As a Hughes patient it doesn't make sense. I am not the only one here who relies on warfarin to improve cognitive skills? Intrigued to know what research/evidence the report is base on.

Debbweb01 in reply to panda60

I just read and article called worlds deadliest drugs that are approved by FDA an agency in USA! Which means nothing to me! They're all pocketing the money! Sorry if I started something I shud have kept my mouth shut on!!! It's only cuz I read it and have a friend who's been on warfarin for years and her memory very bad and her DICS told her it causes memory loss! She's real bad tho! I'm getting there and t a point that I wana stop all meds! I've always believed the body can heal itself, but in my case had I been on warfarin I'd still have my leg! So do I know does anyone know anything! Lol... Who knows!!!

Lure2 in reply to Debbweb01

Hi Deb,

Please do not stop all meds!


Lure2 in reply to Lure2

(It is too late and it went away). I do hope that you will not stop the anticoagulation!!!! It is difficult some days.......will be better you will see.


Debbweb01 in reply to Lure2

No Kerstin, I'm NOT going to stop all my meds! I'm just angry at my quality of life lately! I've been positive all throughout this process! Loosing my leg was devistating for me, but wen you saw me you'd never know cuz I refuse to let anybody see me down! I was told by therapist when in rehab for my leg that I was very hard on myself and needed to give myself a break! I tried but don't let on to anyone how I feel! I'm just superwoman and keep going! I NEVER ASK FOR HELP! If people can't see I need help and they don't offer I refuse to ask! I have this weird PRIDE PROBLEM! I refuse to show any weakness! Now I must get approved for a new leg with new foot too as this one is worn out! They say I'm very active and on my feet 18 hrs a day! What they didn't prepare me for and should have was wen you loose a leg you don't get better with time as I thought, you get worse! Your leg shrinks down to bone and ur walking on your Femur bone which is extremely painful! They give u a leg that don't fit anymore cuz they know the fight with insurance companies in USA! I will get my leg because with this leg in unbalanced completely and if I must threaten my insurance company again that I'll sue them if I get hurt and fall due to improper fitting! So I have a lot going on! My hubby has Alzheimer's and I can't get help yet cuz he's not bad enuf yet! My stepson is mentally disabled and I have taken care of him with love for 36 years! All of a sudden everything has been dumped in my lap and with this memory problem I'm making big mistakes! I can't afford mistakes in my life and was just angry at my situation! I must ask for help, but when I do go to all whom I've helped for years I'm refused the help! They're selfish individuals who don't know how to help others! I have my sister that helps me with her brain and vitamins and research! I have a couple of friend that we help each other! But mind you they know I'll never ask and they volunteer to help ! Then I accept the help! I guess my upbringing made me this way because my sister Lynn is the same tough person and very stubborn like me! Not saying that's good, but it's who we are! We were taught to work hard and we wud be fine!!! That's how we have lived and I've had to stop doing that since beginning of August and hate to even admit how weak I am! As weak as I was I babysat my friends 90 yr old hubby who is blind for 4 hours yesterday! She is there for me so she had to go out and she's a very young 73! Healthy as a horse and she helps me by cooking for me! So it's like the barter system! Thank you for caring! I was angry cuz I can't be on my feet for 18 hours anymore ! I want quality of life instead of quantity! Love to you dear KERSTIN! You are so very special to me and my sister! Be well and GODSPEED!!!

Lure2 in reply to Debbweb01

Hi Deb,

I think that your INR is at a rather good level today as you have written a long and just perfect answer! When we have a low and not sufficient INR it is possible to see it on the writing.

Even "normally people" (I mean without APS) forget things when they have too much to think and worry about. We are not 25 any more even if we think we are.

Write down as much as you can!

I know that I am lucky to live in Sweden with our Health Care System. We are spoiled here I know.

Good luck to you and also to your sister!


Her docs! Thx for ur replying

One issue to consider when reading about warfarin side effects – the vast majority of patients on warfarin Take it because they have a sticky spot in their circulatory system, such as an artificial stent in the heart. Or due o to an heart arrhythmia. In other words there is a potential obstruction in the circulatory system and thinner blood makes it more likely that the blood will not get stuck. But we have sticky blood syndrome. Our blood is more likely to clot anywhere. Studies that focus on the general warfarin population create results that compare apples to oranges. Yes, in the general population, warfarin does increase the risk of a brainbleed which is horrid for memory. But that aint us. ( unless our INR go skyhigh out of control. )

That above post should've said less likely for the blood to get stuck. I do not understand why there are times when my iPhone will lot let me correct a mistake. Geror!

There are so many reasons for memory problems. But in our condition one clear reason is this syndrome. Professor Hughes has said that memory problems is the most common neurologic symptom in APS. For me warfarine relieves also this symptom. I have had same kind of memory problems as you Debbie and I think it's because of this APS, since it has been so much better with Warfarine. I think you shoud not to worry about the medication. God bless!


My memory problems do not get better with Warfarin. But I also have sleep apnea and never get a good nights rest anymore. I was all prepared to watch my show last Thursday. Had my dinner all set up and then realized it wasn't Tuesday. I missed the show and had to watch it on demand lol. All this because who knows what. I am also dull now from 5 years of pain meds. I can't function without them, as my pain just can't be managed any other way. I go for 5 days without pain meds and my leg just flares so bad it drops me to my knees. I guess sometimes we are just forced to have to take meds to live. I also have to inject up insulin anytime I want to eat anything other than just meat. If not, my blood sugar goes to 250 and stays there for hours. I can't allow that to happen, so I use insulin whenever I want to eat a sandwich, a piece of cake, or a pizza. I will not deprive myself of the good foods. I can't do low carb or gluten free. I commend all of you who can do it. I love food and it is the last pleasure I have left. Warfarin has not given me any trouble except for my INR being stubbornly low for 4 months. It has finally busted loose and was 3.7 last week. I am happy with that. I just adjusted my dose to bring it down to 3.0. I have not had too many side-effects except for some brain fog and tiredness, but that has seemed to lessen over time. I have also never had any bleeding issues in almost five years, and supposedly no new clots; but that I think is not accurate. I'm still alive and thankful for the protection Warfarin gives me. I hope you feel better soon!

Debbweb01 in reply to Hidden

Yes I too have sleep apnea! Undiagnosed of course! Cuz I know I have it, if I get tested and it's on my medical records, then I'm a Parriah in med field as far as any surgeries! I'm already a complicated patient to all my docs! So don't need to be officially DX'd! Lol...

Hidden in reply to Debbweb01

I know when my sleep apnea kicks up. I am so tired I forget what day it is and I am unable to even read on the internet. It makes my brain hurt.


He have both pulmonary symptoms. I know you have been low earlier when using Warfarin. You had an INR of away.... you had an INR of 3.7 and was happy with that. I also feel ok when I have that INR or even a little bith higher. I do not understand why you should want it back to an INR of 3.0.

If I have that low INR I have to take a Fragmin-shot. If i were a Specialist of APS (we know I am not) I should tell you to stay at an INR OVER 3.0!

Take care

Kerstin in Stockholm

Hidden in reply to Lure2

My eyes start to hurt and headache with higher INR. I don't want it down, but my doctor wants it down. He does not understand APS and he will not treat me if I keep it too high. Also, I wanted to make sure it was stable. I was taking a lot of Warfarin. 10 mgs one day and 7.5 the next. I wanted to make sure it wasn't climbing higher. Also, I got the INR result 5 days after my blood was drawn due to my doctor always being out of the office. So, I just wanted to be safe. I get another INR test tomorrow and I will push for the results on the next day. My care is lacking. I just let it slide, as I am on very cheap government insurance and only get poor providers. The healthcare system is messed up in the USA to say the least. If my INR is low, I will go back to old dose. If it is good, I will continue on 7.5 mgs a day every day and maybe 10 mgs on Sunday to give the INR a slight bump.

Lure2 in reply to Hidden

I have understood that the healthcare system in the US is a real problem for so many APS-sufferers. That is a shame really as you need a Specialist and have a stable INR and also lung-function tests. I have also lung/heart-symtoms with APS.

I do not understand why you get pain in eyes and head when the INR is higher. I get that when the INR is low.

You should always have your INR the same day or the day after and not 5 days later!

Could you change GP at least as he does not sound very helpful.


Yes but I finally got my Hemo to ok it! I'm happy with 3.7 he may not b but I am! Thx Kerstin! I'm taking my vitamins! I was low in D, B12, and Magnesium! I now have osteoporosis again! My neck is actually curving! Between that and RA and SJOGRENS I need to start my Plaquinil! Been avoiding it due to my weakened stat, but today feel a bit stronger! DK if vitamins are helping or what!!! Must be ! Mary always tells us to watch that!

I have been on Coumadin since 1992 and am almost 76. My memory is fantastic. The only thing that Coumadin has done to my head is caused my hair to thin

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