no symptoms ???

[diane1428]

hi guys. Haven’t posted for a while but was so shocked yesterday had to tell you.

Been diagnosed with APS for many years now and thought gp knowledge was getting more advanced I am sad to say in my case this is not so. My gps in there infinite wisdom have moved over to finger prick blood tests. Okay I thought but my warfarin levels are all over the place. I fluctuate daily with my INRs and sometimes have to have upto 3 tests a week as we can’t maintain a level with the warfarin. Now with the finger prick tests they are not as accurate as I need them to be so have always been told I shouldn’t have them. My inrs have to be between 3-4 as I don’t function well under 3. Now with the finger print test it can be out around .1 out. So when my last finger prick test three weeks ago at 2.5 and the machine told me next appt was 5 weeks later as I’m in range. I knew I was in trouble. And boy was I. I cut my arm and it wouldn’t stop bleeding for 2 days, am living in brain fog and starting to get numbing down my right side. I stopped warfarin for 2 days as receptionists stated no doc appt.

Eventually got a phone call from gp yesterday and have been told don’t know what the fuss is as APS doesn’t have any symptoms. I thought I had heard wrong but he repeated it. If you have APS you DO NOT GET SYMPTOMS. For all of you out there let me know your thoughts I’m finding this shocking. Still trying to find the funny side but at the mo it’s evading me

[lupus-support1 Administrator]

Shocking!

Do you have a Consultant? Call them!

Change your GP!

It seems you are going to have to fight for your right to be treated by a competent doctor.

If you have a problem, go to your hospital and tell them why you have to bother them to stop the bleeding & your symptoms are out of control.

Do you have any literature on APS & symptoms? I would get them, make an appointment with your GP and take someone with you to explain to your GP that what they say is incorrect and you are suffering.

I am so sorry you are going through this!

With good wishes,

Ros

[diane1428 in reply to lupus-support1]

thankyou Ros. I’m so sick of fighting my docs but I will. They don’t listen unfortunately. In fact last yr my Rheumy was going to ask my gps to get me another rheumy as they didn’t get any of my results for bloods they required for two years and as she said without the results they can’t treat me. However she has nothing to do with the APS as she says it’s not her field. I’ve been fighting to get an APS consultant as I’ve never had one. But I’ll keep trying.

[lupus-support1 Administrator in reply to diane1428]

Diane, I know it’s hard and it’s not fair or right, but you must fight to be heard & treated. I don’t want to pry, but do you have a partner who can take some of the load?

I also think you need space to allow yourself to feel whatever you are feeling. You need this and to be kind to yourself.

If you are in trouble - like the bleed - go to your local hospital & ask to speak to the Consultant on call - not a junior doctor! Always take someone with you.

I don’t know where you are but Dr D’Cruz at St Thomas London & Dr Beverly Gordon (haematologist) are brilliant.

Take care of yourself!

Ros

[Mermaidatheart in reply to lupus-support1]

I agree with Ros!!!! Fight hard for your health!! I am fighting for & with my daughter now for her health and encouraging her to fight for her Rheumy appt for other autoimmune issues.

So sorry you are having such awful care. We should all be able to trust that most doctors are up to date and supposedly well read and educated. Over time after being a part of this group I am finding that is not always the case...sadly😔☹️🥺

[lupus-support1 Administrator in reply to Mermaidatheart]

I am sorry to read about your daughter. I think it’s worse when it’s your child.

Sending you my warmest good wishes for you and your daughter.

Ros

[diane1428 in reply to lupus-support1]

Thankyou all so much for your advice. I’ve now received a letter from my local hospital to see if I can see a haematology consultant but won’t know if I’ll be accepted till atleast 12th December. Will keep you all posted. Will definitely fight it

[HollyHeski Administrator]

There is no funny side to this - its terrible!

As Ros says - do you have a consultant? You need to take heparin until your INR is back in range.

Have you got someone with you that can help you fight this. I'm lost for words on your treatment or lack of.

[GinaD]

So sorry to read this! Some doctors do believe that APS is not a " real" disease. IMO, this is a remnant of the " hypochondriac, crazy women" approach that dates back to 100 years ago. Find another doctor! You know, a real doctor who listens to patients and pays attention to substantiated science, and not just those info tid bits that are convenient.

[user666]

In fairness to your GP warfarin is only proven to reduce clotting risks nothing else. All other reports of it helping improve headache, brain fog and other symptoms are not supported by double blinded and peer reviewed studies and are thus anecdotal case studies at best. Most likely placebo effect only. He might have meant this not that APS is not a real disease.

Good luck stabilizing your INR. My clinic never tests more than every five days maybe too much testing is causing you to alter things like diet and dose and not allowing you body to adjust. When my INR remained slightly elevated at 3.3 for a few weeks after covid we did a reset by skipping one dose only and then returning to standard dose and k intake for seven days then retested. I then went to every two weeks restart when in range and after three in range am back to testing venously every four weeks. Anxiety about your INR can cause metabolic changes and thus also put you at risk of being out of range as well.

[kathyD64 in reply to user666]

I don’t get this reply? If warfarin helps to reduce the stickiness of your blood which runs through all your organs then I thought that is why warfarin can help with headaches for example? Perhaps it’s my misunderstanding?

[user666 in reply to kathyD64]

warfarin does not change the stickiness or thickness of blood it prohibits certain vitiman k driven clotting factors to slow down our immune clotting cascade. The sticky blood theory is a bad metaphor. Today doctors never usually refer to APS as having sticky blood.

[KellyInTexas Administrator in reply to user666]

Prof. Beverly Hunt , OBE and APS specialist hematologist, and member of ISTH , commented about Covid 19 and it’s early association with clotting, “it’s some of the stickiest blood I’ve ever seen.”

[KellyInTexas Administrator in reply to user666]

There is a very big difference between being anxious and being proactive regarding our INR levels.

Please be mindful that many of us have been told to check frequently.

This will be the end of discussions on anxiety related matters and clotting and INR testing. Confusion on the matter could result, leaving a patient confused and and ill advised.

We leave it to the health care provider to determine frequency of testing, with the rule of thumb that APS patients need venous testing more frequently than standard non APS warfarin patients, and each patient is unique, and will individually prove out the labile nature of his or her course of the disease, and these the frequency need for testing .

As to warfarin not helping prevent further clotting- my hematologist tells me it does not help resolve a current clot, but certainly helps prevent future ones!

The key is yo look at each patient individually: if the patient continues to clot, then is inr set high enough? ( there is a protocol in place) Does inflammation need yo be addressed? ( biologics? IVIG? - there are protocols in place- see Hannah Cohen- “How I treat refractory thrombotic anti phospholipid syndrome”).

[MaryF Administrator in reply to KellyInTexas]

I could not agree with you more, thanks for the helpful and detailed reply. MaryF

[MaryF Administrator]

I agree with lupus-support1 , I would definitely get in touch with your consultant, many people do a blood draw and finger prick test and sometime the discrepancy between the two can be seen as a consistent pattern. Your GP probably needs to read a good book, I have done this in the past, dropped off books on Hughes Syndrome/APS out of sheer frustration. I also agree with taking your most articulate, friend, relative colleague or neighbour for your next appointment with the GP if you are feeling awkward about fighting your corner. MaryF

[kathyD64]

I feel your pain! I once was told that by my GP APS causes none or minor symptoms and it is ridiculous how you can tell how you feel on warfarin if it’s to low a dose! My Inr was 1.4 when he said I was adequately anti coagulated!

That was a decade ago I wrote a letter of complaint to the practice manager. I would report him as attitudes won’t change he needs educating! It feels like we keep going round in circles reinventing the wheel!

I so wish someone with that attitude could be sued! Clinicians swore on oath to cause no harm! But sadly they seem to do it a lot with APS sufferers!

Keep strong xx

[Jillymo in reply to kathyD64]

How frustrating to find all these years have passed us by and here we are still trying to fight our corner.

It is common sense that if we have restricted fluctuating blood flow it is going to affect not only our organs but also our brains - do they seriously think this comes without symptoms ?

Clinicians swore on oath but that has gone out of the widow with the backlog of patients and covid,

[KellyInTexas Administrator in reply to Jillymo]

exactly.

[Ladydale]

i have finger prick and my INR is always in

[Lure2]

You need a Specialist to get the correct INR and machine! I agree with the others. Also take Heparin till the correct INR showing up. So very important!

[GirlfromTennessee]

my INR is all over the place also. I keep a dairy & it seems when the weather changes my INR changes as well. Winter (cooler months rather) my blood thins, in Summer (warmer) it thickens . So I change my dosage with the weather. It takes a couple of weeks but so far this year it is slowly getting me back on track.

Best of Luck & Care!!!