Questions, questions

[apsdaughter]

My mom was diagnosed with APS nearly thirty years ago. (She is now 74) She has been on coumadin for nearly all that time. She does self tests at home and sees her Internal Medicine doctor as well as a hematologist (well, she sees the nurse). She has done an excellent job managing her inr, but recently has had more and more medical issues. She has had one test after another to diagnose severe ear/head pain, leg swelling as well as numbness and recently had a high sed rate which had her undergoing a procedure that took biopsies from her temporal arteries. My sister and I have also noticed that she seems to be having memory issues... and we have considered dementia or alzheimers. NONE of her doctors have considered her APS to be of any consequence with all of her medical symptoms. So my question is this:

If one is controlling APS through use of coumadin, does that mean that one will no longer have any symptoms of APS? Do any of you still have APS complications? We are having a family visit with the doctor to talk about this, but my mom is extremely non confrontational and says her APS is just fine.

(She also had miscarriages when she was young and had DVT in 1982).

I am so frustrated trying to help her. Any advice would be greatly appreciated.

Tammy

Virginia Beach, Virginia USA

[tim47]

I think the short answer is that taking coumadin is never a guarantee of avoiding APS problems. Firstly there is the issue of having and maintaining the right INR for the particular patient. Even the right level may not resolve all the issues. I suspect most of us have ongoing issues but largely settle for not having major events such as strokes. Some though are lucky enough to be rid of most problems.

I am sure I am not alone in wondering which of the many problems that come and go are actually down to APS or are some other unrelated factors. Many of us have memory issues and brain fog even though we may be on target with our INR.

My own feeling is that the influence of APS must always be at the back of my mind when I have 'issues'; there still isn't enough known about it to be definitive.

[MaryF Administrator]

Hi her medication should be reviewed to check her INR is high enough and stable, also be aware that with Hughes Syndrome/APS often with it comes Sjogrens Disease and also Thyroid problems. Also check her iron, b and D and make sure these are regularly tested and at optimum levels. Hope she improves and she s lucky you are helping her, all the best. Please do look at the charity website there s a lot of useful information carried on there and also lots of ideas of books to read if of interest to you. MaryF

[Lure2]

I agree with the two answers from Tim and Mary!

Two main important things is to have a diagnose and an APS doctor.

A good book to read is "Sticky Blood Explained" by Kay Thackray.

What is her therapeutic INR range of warfarin set by the coagulation clinic or a doctor? How often does she selftest? I selftest every second day to keep my INR steady which is exstremely important.

Best wishes from Kerstin in Stockholm

[apsdaughter]

Thanks for the advice and encouragement. My mom self tests once a week. I believe her target INR is between 3 and 4. She remains very steady until she has some medical procedure which really throws her off. She is exceptionally good at consistency.

I suspect that many of her other problems are related to APS and am reassured to know that others who are dealing with the disease are not instantly cured when they start warfarin. It's all so complicated.

As you can tell, my frustration is that her doctors don't even seem to consider APS as a complication/cause of some of her other health issues. My sister and I are especially concerned with the memory part....

I will speak today with the GP about an APS specialist but there doesn't seem to be one listed in Virginia... although there are some hematologists we may be able to contact.

Thank you again for your reassurances...

Tammy

[Lure2]

Hi Tammy,

An INR between 3.0 - 4.0 is quite OK but if you are around 3.0 many of us have the "old symptoms" (those we had before the anticoagulation started) back again.

It is really a pity that you can not find an APS-specialist near Virginia...........also I can understand it is difficult for you and your sister when your mother "feel just fine".

It is true what APsnotFab says that many autoimmun conditions can be connected and to find the right doctor (an APS-specialist) can be life saving

I wish you good luck and please tell us how it goes. You are most welcome!

Kerstin

[Heather69]

Hi,

taking coumadin does not mean that the person will not have symptoms/breakthrough problems.

And it also depends what other drugs your Mum takes, how they interact etc.

APS can cause memory loss and many other neurological problems.

It is always worth offering to go with your Mum to her next appointment and raising the questions that concern you.

Wishing you both well.

[apsdaughter]

Thank you Heather. This forum has helped me a lot. I did go with my mom to her last appt. It was a better appt.

Best to you as well.

Tammy