Taking Aspirin for APS: When taking... - Hughes Syndrome A...

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Taking Aspirin for APS

drob32 profile image
20 Replies

When taking aspirin, what dosage do you usually use, and how long does it take to feel the effects?

For example, let's say you are taking 2 baby aspirin in the morning. Do you feel clear headed right away, or is this effect something that takes time to build up?

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drob32 profile image
drob32
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MaryF profile image
MaryFAdministrator

I take two Aspirin a day and it's effects were felt over time rather than instantly, but it is best to get your GP or Consultant to help with setting the correct dose for you. MaryF

BamaGal profile image
BamaGal

I was told to take one. Within a month I noticed that the livedo reticularis was better but far from gone. After two months I, without the advice from my Dr., increased it to two. DO NOT ADVISE YOU TO DO THIS. Now the Lacey rash is gone. But that's not what you asked. I've been on aspirin now for about three or four months and have noticed that some of the brain fog appears to be a bit better.

Lure2 profile image
Lure2 in reply to BamaGal

I took one baby-Aspirin when I had been diagnosed with APS (I had all the antibodies and in high levels and still have in 2015.) and had neurological symptoms. That was in Stockholm in year 2002. It helped for some years but after an operation I had more severe symptoms and I finally had to do what the doctors suggested. I had to start warfarin which I did not want to do at all.

Before I started warfarin the doctors suggested that I should try with the double doze of baby-Aspirin, which did not help my neurological symptoms at all, but instead I had problem with my stomach. I have primary APS and if you also have Lupus it can be different perhaps.

Sometimes we have to test. Warfarin made me feel a lot better I can tell.

Kerstin in Stockholm

jetjetjet profile image
jetjetjet in reply to Lure2

You mirror me my friend -

how has my buddy been.

miss you kerstin-- Casey and i were just discussing that :-)

Elfie1 profile image
Elfie1

Hi, I was on 300mg of aspirin daily, for approx. 2years. I helped my migraines for a while, but I also have cerebral vasculitis hence the bigger dose. I'm now on a heparin trial which is even better, I think my stomach needed a break from all that aspirin. In answer to your question, the aspirin helped within a few days and I haven't had that awful foggy sensation since. All the best. Elfie

drob32 profile image
drob32

Thanks for the replies everyone. I'm currently looking into the science behind it. There are some interesting non-prescription supplements I've been researching such as serrapeptase, and nattokinase that break down the fibrin which is partially responsible for the clotting issues. In any case, I'll guinea pig myself to try everything and report back.

France4445 profile image
France4445 in reply to drob32

I'm happy to see someone else looking into natural blood thinners.. I have been using nattokenase and serrapeptase plus ginko biloba for about three years... I started using guaifenesin ( main ingredient in mucus relief products) . It works fine but gave me headaches... I also use Chinese Salvia,,, The Chinese link sticky phlegm with sticky blood,,,,,,, I was having TIA'S and my airways were being coated with phlegm so sticky that it would wake me from a sound sleep because I couldn't take a breath,, Thank Goodness it would break loose before I passed out,,,, anyway the natural blood thinners stop the TIA'S and the sticky plhegm...... One thing to think about is Vit. K,, it is in many foods,,, and is a natural vitimin to make blood clot... So you must double up on the blood thinners if you eat Vit. K foods,,, I wish you the best.. France

Lure2 profile image
Lure2 in reply to France4445

Could I ask as I am interested, if you have got a diagnose of APS?

What were the symptoms when you had your TIAs?

I am most interested as when I started warfarin my neurological symptoms just disappeared and that is what Kay Thackray describes in her book about Sticky Blood.

As I have read a lot about APS and been on this site for several years I have learnt so much from listening to other members. Actually we learn so much from eachother.

Did you try Baby-Aspirin as I understand that you did not go that far as to try warfarin. And then you can not stop warfarin when you have once started.

You do not eat Vit K-vegetables. How much of a doze do you take and what is the name of your bloodthinner?

Kerstin in Stockholm

France4445 profile image
France4445 in reply to Lure2

Hello Lure2

No, I was never diognosed with Hughes S. I stumbled accross Hughes S. on the internet... After visiting many doctors and many tests and getting nowhere this information sent me screaming to a hemotologist.. The blood workup showed my fibrin count was above 600.. 400 being the top of safe or normal ??? It was as the information in the Hughes Syndrome said it would be but the Doctor told me that I didn't have a problem with sticky blood because a couple other factors in the blood workup didn't show any serious abnormalities... I had just started having the sticky phlegm problem.. I mentioned this to the doctor and he, sarcasticly said to go talk to my GP about that, as though it was beneath him to even consider that this symptom could be related to sticky blood... but he did say to try Muscinex... I told him cold meds made my stomach upset and he said he thought the main ingredient was a natural plant base...( guaifenesin ) So I tryed it . I was desparate ... and it was amazing.. It stopped the sticky phlegm and the TIA's ... Later I found an article .. Via Chinese medicine, that sicky blood and sticky phlegm went hand in hand... I suppose that since I couldn't find a doctor in my area that knew about Hughes S. So was never formally diognosed, that is is possible I don't have it...... However what I do for my problems with the blood thinners has kept me from having the TIA's and the phlegn coating my airways... You are right to assume I have never been on Warfarin... but I did experience a feeling of well being,, A lot of muscle pain and some veritgo disappeared,, Can't really remember all of my symptoms as this was three years ago... As far as Vit. K vegitables go, I do eat them from time to time,,, and I just double up on my blood thinner supplements...... I will stay away from prescription blood thinners as long as I can... but have to say I had an episode four nights ago that scared me ,, I feel off the wagon a bit in making sure I was taking enough and regularly of my blood thinning supplements and I had a TIA scare,, It was very mild compared to the ones I was having 3 years ago.. but it sure got my attention.. I checked my phlegm and it was like rubber cement, so I took some asprin and got back on a regular schedule of my supplements.. Also I get pain in my ribs , just below my Left breast.. and this stopped when I had started the blood thinner supplements.. and it had started hurting me again.. Now I'm feeling ok but taking nothing for granted... Sorry I don't have more info for you and hope you don't write me off because I haven't had a formal diognoses.... Take care,,,, Hugs France

Lure2 profile image
Lure2 in reply to France4445

Thank you for that long answer. We know that people have seronegative APS and I guess that you have not yet taken any bloodsamples to find out if you have the antibodies of APS.

How old are you? Do you live in England? Have you read on Hughes Syndrome Foundation about typical symptoms of APS?

If you do that and then think you have those symptoms I think you should try to have an APS-Specialist to talk to.

You mentioned Aspirin. Do you take that every day and as a bloodthinner? I took one Baby-Aspirin to start with before I had to convert to warfarin that really helped me. They say that a low dose of Aspirin (low dose has effect and does not effect your stomach negatively) can help. I did that on doctors prescription. It helped me.

Read Sticky Blood Explained by Kay Thackray and you will understand this illness better.

I hope you will find a nice APS-doctor because so few doctors understand us.

I wish you good luck and I hope you stay with us on this friendly site where we try to help eachother.

Kerstin in Stockholm

France4445 profile image
France4445 in reply to Lure2

Hello Kerstin... My name is France Ciel d'August,, I live in a small town in the Pacific North West Coast of the United States... Raymond is in Washington state... You asked in your previous response about how the TIA's felt....... Scary more then anything.. I woke to loud pounding.. I thought someone was pounding on something outside my bedroom window.. I tryed to set up but it was a struggle... when I opened my eyes it was like fireworks... lots of flashing lights and round flashes like fireworks.. It was at that point that I realized the pounding was in my head...... By the time I got to my bathroom and had a little water the flashing and the pounding had stopped... I exercise from 9 to 9:30.. a TV show called " Sit and be Fit.. half sitting half standing but lots of good stuff,, stretching, weights ,, balls ,, elastic bands.. .. I noticed that i had a hard time for almost a month following directions and just paying attention... It was what I called my re-hab... I didn't know what had happened .. In a few weeks I had another one with the same MO.. This time I went to the doctor.. He told me I was having TIA's............. I was about sixty seven when that happened.. I am now seventy... acually I like to say I have been on the planet for seventy years... I know so many people that are worse off and better off then me so age doesn't matter that much.. Living in the US is part of my problem because the doctors here in the Pacific NW don't recognize Hughes syndrome.. At least that is what I ran into three years ago.. Thank You so much for your concern and I will look into the APS test and will order the book by Kay Thackray... How about you... What were your neurological symptoms ? I don't know anyone around my area with this problem so it is very interesting to me for you to share your story.... Was your surgery connected to Sticky blood..? and did the APA cause any problems with sugery... Did they have to do anything special for you ? I will stop now as I don't want to wear you out... Hugs ,,, France

Lure2 profile image
Lure2 in reply to France4445

You do not wear me out. On the contrary! We learn so much from hear other stories of APS.

I am 71 in June and I have had APS (as I had my first real TIA) since 2002.

I had no feeling in the right side of my body. I do not think it was my leg but my arm, hand face and even the right side of my tongue! My eyes were jumping up and down. Later I had Vertigo and I could not see on my right Eye for some minutes. That came some month later I think.

I think you should, as a member, put a post (question) on this site and perhaps someone else living in the same area knows a doctor specialised in APS. I have recently been an Administrator here but are no longer. But still interesting and want to help if I can from time to time.

Look at apsaction.org where you can found APS-doctors from different countries.

You need to take the antibodies for APS.

When we are enough anticoagulated we feel a lot better. Most of my neurological problems disappeared after warfarin.

That book is really good.

Kerstin in Stockholm, Sweden

France4445 profile image
France4445 in reply to Lure2

Wow, your TIA sounds more like a full blown stroke !... At least from what I have read on the subject, the amount of damage you had is more in keeping with a regular stroke.. I'm so happy you survived that stroke.. One thing I didn't mention in relationship to TIA's is that after the first one I was alert to the pounding noise, also the loud heart beat in my head and a whoosing noise ,, Any of these sounds start and I adjusted my sleep position fast.. I use pillows to build up a slope for my upper body and I use a foam filled neck collar so it is much harder to get into a position that brings on the TIA'S.. After I learned about sticky blood and started taking the suppliments I wasn't always being threatened by the TIA'S and sticky phlegm,,, But I still sleep on the slant... Very interesting that we are the same age.. I will be 71 August first.... Do you have a facebook page.. If so, you can find me .. France Ciel d'August... Wondering if you have myelin sheath problems ? I do and I take supplements for it.. helps a lot and also I rub Vicks Vapor Rub on my feet and sometimes my legs ( from the knee down) The vicks sounds kind of funky but I swear by it... Not only does it reduce the discomfort it acually reversed some of the damage... I was so impressed.. I heard about it way before I tryed it because it just seemed so improbable. I will mention that I had Polio when I was about five years old... It affected my whole body but not to the the point I was paralized like so many.. By the way how did your T3 and T4 tests come out.. ? Big healing Hug.. France

drob32 profile image
drob32 in reply to France4445

I haven't had a TIA yet, but hopefully I won't I'm not on any "meds" only aspirin until a doctor can even evaluate me.

I'm 32 now, but I'm pretty sure I've had Hughes symptoms that were more low grade since I was 19 or so. After my knee surgery last year, it was fully triggered.

One thing I wanted to mention about nattokinase and serrapeptase is that there is a supplement called Neprinol that contains these and more, and people seem to swear by it for bring up fibrin.

Rosemary76210 profile image
Rosemary76210

I have been on one 325 full strength aspirin a day for about 6 months. I had a stroke on my optic nerve after cataract surgery. My vision has not improved, and I still get dizzy. I really haven't noticed any improvement with it, but I think my thyroid is messed up since it is twice as big as it should be. Since the thyroid tests come back normal, the doctor just has me get a sonogram once a year to check for nodules.

Going back to OT, the effects should be almost immediate.

I take one before I start watching TV, so that I can actually see.

butlertammy profile image
butlertammy

That's interesting APSNotfab... I've had hypothyroidism ever since I was 10... ''Miraculously' since moving here 8 years ago Mr Drs keep saying my tests are fine... But I have all the hypothyroid symptoms... My only specialist is my hemotigist... Maybe I should go back to him (which I've only seen once) or ask for a different specialist?

Lure2 profile image
Lure2 in reply to butlertammy

Are you on warfarin or Aspirin? I have read that you have stopped warfarin. The symptoms could perhaps be related to APS. We can not stop anticoagulation.

I Think you should see an APS-doctor and ask them to take all bloodsamples also for APS.

I am going to my Hematologist next week and they are now taking T3 and T4 just for the sake of it. I have been operated 10 years ago for hyperparatyroidois. No symptoms today.

Best wishes from Kerstin in Stockholm

butlertammy profile image
butlertammy in reply to Lure2

I'm on aspirin daily but I had a Tia around Christmas and my gp doesn't seem worried as my head ct scan came back clear... I've been so I'll since then and struggling to get to work more than3 days a week as a result... And just fed up with feeling like something is wrong. Same story as most of us I think...

Lure2 profile image
Lure2 in reply to butlertammy

It sounds that you do need an APS-doctor!

My head scans have always been clear the times they have taken them. As I have all the 4 antibodies for APS and in high titres also, there have not been any dobut about my diagnose.

I have had a lot of microembolies, small tiny TIAs not usually seen on MRI.

I understand you and your husband now live in England. England also accept "seronegative" to be a diagnose. They do not do that in the US. Here in Sweden I do not know.

Pleas see an APS-doctor or go private to London Bridge!

Kerstin

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