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

[Lure2]

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

Kerstin

[Hopingforababy]

My grandmother had it. She lived until aged 96 (died in 2012) and was in good health to the end apart from the sticky blood which didn't affect her too much. It was only picked up in later life, she'd had overactive thyroid in her 30s and pregnancy problems x

[Lure2 in reply to Hopingforababy]

Hi Hopingforababy,

Did they know it from APS-symptoms or was she tested for it when so old?

Thank you for answering

Kerstin

[Hopingforababy]

She had a couple of black outs in her 80s and given her history they tested her. (It hadn't been discovered when she was younger) She had Lupus Anticoagulant but it didn't affect her that badly.

[Lure2 in reply to Hopingforababy]

I thank you for the kindness to tell about your grandmother. That is promissing to know that you can be that old with APS.

Thank you again. Give your baby a hugh!

Kerstin

[tim47 in reply to Hopingforababy]

Lupus Anticoagulant was what they called is until Prof Hughes came along. You have about three years on me Kerstin - but how long do you think you have had iT. I reckon my first episode was around 1971 or 1972 when I reckon it presented as Reynaud's but come around 1974 a massive bout of PE's would have been what led to the Lupus Anticoagulant label. So thats 40 years and counting

[Lure2 in reply to tim47]

I did not know it was called Lupus Anticoagulant. In the beginning of 1940 it was often called Syphilis or Lues.

I do not know how long I have had it. I know it started 1992 but it may have started earlier.

In 1988 my husband and I made a Cruise in the Caribian Islands for 10 Days. I had a lot of vaccination shots before that trip. That year I started to get severe pain in my back and left arm and neck. Today I have very little pain in my body.

I have a very high level of the antibodies and I have always been positive. They do bloodtests twice a year at least.

I think some of my relatives have had it but the more severe symptoms have started later in their lives. With blood traumas like operations. My two daughters have tested negative so far. They are 38 and 40 years old.

Yes it seems like we are among the older (perhaps you say elder) ones here.

Stay well Tim ! Thank you for posting.

Kerstin

[doreenA3]

I was diagnosed with APS last year at age 75

[Lure2]

Hi doreenA3,

I read what you wrote the last time. You live in London and near to St Thomas. At that time you also had a too low INR. Have you got in contact with an APS-specialist now? Good that you live so near to the competence.

I have had exactly those symptoms you talk of but they are better when I can stay on a higher INR around 3.5. I selftest which is fanstastic. Warfarin in the right level has positive outcome on bloodpressure and heart/lung and many other organs. Perhaps you have noticed that already.

It is something special to "talk" to someone in the same age. Hope you do not mind me asking.

Best wishes from Kerstin in Stockholm

[loretta1106]

Good morning Kerstin. We communicated before and I was diagnosed with APS in March. It's a little frustrating because I've been educating myself as there are no support groups in the USA near New York that I know of and doctors I go to are aware of APS but not all the symptoms like scary recent joint pain in the knees and big toes and ankles and the exhaustion I sometimes feel. I'm learning to not "do it all" when I have what seems to be a lot of energy but find that I practically collapse when I do too much. I have to learn more about various symptoms and how to manage my energy level and people in my life who don't understand APS. Have a great day.

[Lure2]

Hi Loretta, I remember that we had several messages about the INR. But I thought that you were not so old as 70. Have you a stabil INR now? Could you try to selftest? So much easier for you.

I have those things you talk of also. I got a referral from my Rheumatologist to an orthopedic doctor who did "inlays" (hope you understand) for my shoes. Also had a physiotherapist that gave me different movements to do every day for the back and knees. I also got "jura putty soft 85 g" (I read on the pot) for my hands. I do it twice a week. Also do some movements for my balance each day.

I try to take walks every day if I have got the time and the weather is rather good. I also drink a glass of red wine for dinner (OBS one glass only). I have to drink it every day because of the INR. After that I do crosswordspuzzles more easy! It is true.

Have a nice day. Here it is soon evening.

Thank you for answering.

Kerstin

[panda60]

My mother is 93 and has Hughes. Her rheumatologist tested her when I was diagnosed in 2001 and she tested positive.

[Lure2 in reply to panda60]

Sorry my answer took some time and came in after Luisa.

Kerstin

[Hidden]

I am 66 and was diagnosed 4 years ago

[Lure2 in reply to Hidden]

Hi Luisa,

I know some here that are a bit over 60 or 65. But not so many over 70. Do you want to tell me something how you were diagnosed or about your symptoms? Take care and thank you for answering my question. Hope you are well!

Best wishes from Kerstin in Stockholm

[Lure2]

Hi,

Thank you for your kindness to tell about you mother.

May I ask it she had it earlier or if she got it the last years? I guess you do not know.

At the same time i hope your son will have a happy wedding and that you can participate. I guess your mother will not be there. Hope she is well!

Best wishes from Kerstin in Stockholm

[jetjetjet]

Hi Kerstin---- Casey wanted me to ask if any one else that is 70 or older that have been Dia. with APS that are also a triple positive .

L.A. Positive ---- elevated --anti- Beta 2 glycoprotien---- anti -cardiolipins

I am and also primary - I will be 60 in November and of course a male {{ I think }}

[tim47 in reply to jetjetjet]

We fellahs are in the minority thats for sure jjj !

[Lure2]

Casey has put the question.

About the "primary APS" I think many also have pieces of SLE. They said first that I was "primary" but I have not heard that for some years now. Are you primary? Hope you are feeling somewhat better. Hope to hear from you again!

Trippelpositive like you and I am is very unusual. It is impossible for Casey to get it. That is for sure.

Send you love and give a hugh to Casey as usual. I would like to see him wave his tail.

Kerstin

[apsdaughter]

I have just found this page... and am so glad. My mom has APS/Hughes Syndrome. She is 74 and was diagnosed back with primary APS in the mid 1980's. I have to admit I haven't really paid much attention to it until now. She takes coumadin every day and manages that part really well. (She even self tests at home.) She has recently had some crazy symptoms and her GP has been trying to figure out what is going on... She has had a heart catheterization (but was totally fine) and recently had outpatient surgery to examine her temporal arteries.... That was clear too. So yesterday, it dawned on me that the GP had never spoken with her hematologist and got me wondering if her maladies could be related to APS. Goodness.

She does have some neuropathy... but her main complaint has been a severe right ear ache... and then her Sed rate came back high and we're all on this wild roller coaster. I'll be checking back here as well as pointing her to this page. Thanks for listening,

Tammy

[Lure2]

Hi Tammy, So glad you found this site. Can I ask a question? From where is your mother and who diagnosed her? If you tell us that it will be easier to help her. Is she willing to "talk" to us here do you think?

Well done to have a machine for the INR. Yes, probably her GP ought to remit her to an APS-doctor.

Look at hughes-syndrome.org/ selfhelp/ specialists in your area.

Also there are very good books available on Hughes Syndrome Foundation Charity website. I prefer "Sticky Blood Explained" by Kay Thackray.

Please come back later whenever you want . I am almost the same age as your mother. I also got it at the end of the 80th.

Best wishes from Kerstin in Stockholm

[France1944]

Hello Kerstin, I somehow lost the information to find our thread from a few days ago.. Do you know how I can find that thread ??? Anyway I hope you are doing well... I did buy a book by Kay Thackray... It is very informative... thank you for recommending...... I'm learning a lot by reading the blogs .. I'm hoping to find a clinic / doctor to do some testing for APS.. I'm reading about symptoms that I hadn't related to sticky blood.. I wake with a headache almost every morning.. and my head has that full feeling even if it doesn't hurt almost 24 / 7... Also i have neuropathy in my feet and legs.. Hands also........ Very sore neck , really painful in the morning... but I have large lumps on the back of my neck the doctors have guessed are arthritis deposits....... Lots of loud heart beat sounds in my head last night.. usually I can find a position ( when laying down ) that will aleiviate the pounding in my head....... Also I have the vertigo... I had thought that was because of something going wrong in my ears... I'm losing my hearing and have noise in my ears all the time.. Many people on my mothers side of the family lost their hearing in their early fifties.... or at least that is when they noticed it... My brother is sixty eight and he is wearing a hearing aid.. He noticed his hearing was going around age 60...... I'm wondering if there is anything special I need to know if I'm faced with surgery sometime in the future ? Besides making the doctor aware that I am using a lot of supplements that cause my blood to thin..... Thanks Kerstin... You are a wealth of informantion..... Hugs France

[Lure2 in reply to France1944]

The post you could not find was "Taking Aspirin for APS"!

Go the side "News Feed" down and you will find it 4 days ago by "drob 32".

Hope you can follow me what I mean.

Kerstin

[Lure2]

Hallo France,

I have looked for it but I can not find it either. But as we are both 70 I told you that you could send me a "Message". You click on my Picture and then I hope you see a red/orange sign to the right with the word "message"on.

I would like to "speak" a little more and you can ask me things also. I have not yet joined Facebook. Perhaps I will.

Hope you are well!

Kerstin

[Mair]

Hello Lure,

I just found your post from several months ago. I'm not quite 70, but in the neighborhood, having just turned 67.

I was dx'd with APS at age 50 when I had a stroke. I was a bit obsessive about tracking down a cause because I had absolutely no risk factors for stroke and had been perfectly healthy for several years.

I was told that if I was still in my 40's I would have been considered a "young stroke" and the workup would be agressive. So, why was I "young" at 49, but "old" at 50?

The neurologist tested for APS just to humor me, saying, "don't worry, nobody actually has this." Hah!

I was treated for Graves disease in my early 40's and had several miscarriages in my 20's but had no idea there was anything else wrong with me.

I'm very stable on Coumadin, self-testing. Clinic drives me crazy by calling to report to me the INRs that I've reported to them! and then giving me dosing instructions that I sweetly acknowledge and then ignore.

Much of my random nonspecific pain and fatigue have improved since starting Plaquenil (hydroxychloroquine) 2 years ago. Arthritis in my hands and feet are an ongoing problem and both my knees had to be replaced.

I count myself blessed to not have so many of the serious lifestyle-limiting issues many other APS patients deal with.

I don't check the forum too often but when I do I always learn something new. It's a great place to share.

[Lure2]

Hi Mair,

"Better late than never", we say in Sweden.

Interesting to hear you were diagnosed Graves disease several years ago before they knew you had APS. Many members on here have hypotyreodism or hypertyreodism. Myself I was operated for Hyperparatyreodism in 2006.

I have not had any miscarriages. Two pregnances full time.

I am glad to hear that you selftest like me and you live in Minnesouta, US! You have also a high therapeutic level of 3.5 - 4.0. Hope that was right? I eat a lot of broccoli and spinach and eat more when my INR is too high. That will reduce my INR in 15 hours. It is more difficult when it is too low, around 3.0.

I do not have to report anymore to my hospital. They double test me every 2 - 3 months. I selftest every second day. I have also the APS-antibody Lupus Anticoagulant that can make the blood to "jump" up and down.

My Rheumatologist says I have not Arthritis but Artros in my hands. Most people have that in our age.

I am glad that you are feeling so good. Me too depending on the circumstances. After warfarin I was much better.

Hope to hear from you again.

Kerstin