At an appointment with Rheumatologist he told me that taking a daily asprin for APS is useless and I can stop?

[minnietwo]

I have aps and blood clotting disorders MTFR and 677 thrombophilia?

[77tiger05]

See another doctor NOW!!!!!!

[Susandraper64]

I'm on warfarin and have to blood tests every 2/3 weeks to test my INR is between 2.5 and 3.5. My first rheumatologist didn't believe I had anything wrong with me and never beleived I had a blood clot when I did. My GP and the haemotologist I went to see found out I had APS and lupus through blood tests I had I now see dr wickramaratne at brentwood community hospital who really knows her stuff.

[marycath]

Hi Minnietwo

sorry you have had an unfeeling/unknowing rheumy. I had to go to 5 rheumies all the same over the length of Australia with none interested re positive tests etc; long years of cardiovascular probs, as well as 4 skin specialists etc Being up in northern Queensland did not help, but continued to be in WW forums - that helps. Luckily a new eye specialist from Europe knew APS, is helping me, gave me the referral to London I wanted. London doc said positive APS, gave me details of Sydney rheumy, so have been down twice. Just as well, still some probs. One just has to seek out the best. Hope you find the doc you need.

[MaryF Administrator]

Great advie above Marycath, yes to find somebody who knows, and and has seen somebody with the knowledge is a good idea. There are others in Oz who have managed to find a APS user friendly medic. I myself take aspirin for APS/Lupus, as does one of my children, my headaches reduced in intensity by the next day,. which says everything to me. Mary F - sounds like the contact in Sydney would be a good bet..

[jetjetjet]

hi minnie- doc s wont let me take asprin, matter of fact the only time ive taken asprin, it was baby 81 s and that was only when i was off the warfarin,one week. but i have read here where alot use asprin along with thier other meds.sounds like you need new doc though --good luck and keep us informed and up dated ----------------------- jet my range is also 2.5-3.5 , i test inr every three days, bad problems, unstable , bounce .

[Lindajoy]

Both of my brothers take an aspirin a day. One had three heart attacks before aged 50, the other had numerous TIA's before 50. Neither has had another attack since starting treatment with aspirin. Luck? I don't know, but it seems to be helping.

[Lori-Bowers]

Please see another doctor and keep taking your aspirin, even though an anticoagulant is best. I had several years when the doctors I saw wouldn't believe that APS even existed. I am thankful to finally have found my doctor I have now. Don't give up searching, I have found that being overly pro-active is the best way to survive with this disease. Best of luck!

[paddyandlin]

Hi Minnie,

Welcome to the group you will find a lot of support and information here!

If you have been diagnosed with APS please do not stop taking your asprin and find another doc as you are putting yourself at risk of a clot! Where are you based can you get refered to St Thomas

Paddy

[jessielou]

Hi Minnie

welcome n glad you found us.

Echo all thats been said, find another doc hon, quite a few rheumies don't have A clue.

Keep taking your aspirin too.

Hope we can help.

Take care gentle hugs love sheena xxxxxxxxx

[SueLovett]

Hi,

I agree with all those saying keep taking the aspirin and when possible see another Specialist.

Take Care

[Lesley_D]

Hi

I totally agree with all of the above - glad you found the site it is inspirational and so supportive!! Seems sadly your doctor is not so supportive, I would advise you find a doctor that understands APS and its problems and stay on your aspirin

Smiles

Lesley

[minnietwo in reply to Lesley_D]

Thank you for all your support ladies. I am from the USA and wondering if any of you are from there? I am still taking my aspirin, my dad had a mini stroke in his 40's and I will be 40 in a few months.

Have a wonderful day!

[nyctapdancer in reply to minnietwo]

i'm from the states, in NYC. let me know if you want to see my hematologist. he actually has APLS. so he knows all about it and he has saved my life, quite literally.

[jessielou]

Hi Minnie

not from the states but know jet is and he been through the mill with Aps. Seems to have been through quite a few docs to find some decent ones. There are quite a few from the U SA on here.

Glad you still on the aspirin hon, my dad had a Tia/mini stroke too.

We here if you need a rant or just to share.

Take care gentle hugs love sheena xxxxx

[nyctapdancer]

run, don't walk away from this rheumie.

you need a hematologist who knows about APLS.

in my experience, rheumies dispense steroids and are clueless about Coumadin.

keep taking the aspirin til you find another doctor.

[Lesley_D]

Minnie,

I noticed your comment about your comment about your dad's mini stroke in his 40's and you're coming up to 40 - I understand that fear, for a different reason. My eldest sister collapsed at 49 with a burst berri annerysum of her brain, she thankfully survived against all the odds, then my middle sister collapsed at 49 of the same thing and sadly died, here I am at 49, I have believed I would not make 50! (I am 50 in May) Last year I said to my remaining sister I felt as though something was wrong and that I was going to be sick and I was scared I wouldn't make 50. I did get sick!! with APS, DVT and PE's a week after our chat - but by god I am praying the rest of my feelings won't come true. My point to this is go with your gut, I think we all feel in our gut that something is wrong, we know our own bodies - find that rheumy doc that both listens and understands.

Smiles and good health to you

Lesley

[Storky]

Its funny (well it isn't really) that you have gut feelings about things. My grandmother died at 60 and my Mum at 58, both of entirely different things. I always said to my other half that I thought that I too was not going to break the mould to which he would tell me not to be silly.

Last year I had a Stroke and thought that was it but got through it. In November I reached my 60th birthday and now just want to get to my 61st to prove to myself that I have beaten the curse. I don't know if my intuition was telling me something to warn me about my stroke which was why I felt as I did but hopefully that is now behind me.

I really believe that you should go with your gut it could save your life.