Employment

[Blonderagdoll]

can I ask what jobs people do who have anti phospholipid syndrome please and thank yous? And did anyone have to change jobs because of the condition? Many thanks in advance

[GillyA]

Hi my basic job is fine, I’m office based and have no issues. However, I spend extended periods overseas in developing countries. I manage INR through self testing and email, which works fine. However, my employer’s Occupational Health department really dislike the combination of warfarin and epilepsy and the risk of a bad fall where medical care is limited. So far I’ve won the argument, but I suspect at some point I’ll loose. I won’t be unemployed thankfully, but there is risk to the best part of my job.

[Ccaz01]

I am office based but unfortunately up 4 flights of stairs which I am finding increasingly difficult. There is a task in our department that is quite physical that I really struggle with. As I get older I find my balance is worse, and as well as the joint pain I am now getting arthritis and I suspect the menopause may be playing a part too.

[Madmumma]

Hi, I’m currently unable to work as had yet another TIA, so can’t drive again for 30 days. Self-employed, so not good. Had a period of 2 years when I couldn’t work at all, when I hadn’t been diagnosed and was treated as a nutjob by the GP’s, who didn’t want to know. Looking into alternative, paid, part-time employment - but feel who would employ me!?

[Lure2 in reply to Madmumma]

May I ask what does your Hematologist do when you now had another TIA?

If she or he does not understand this illness (APS) we have here, you must absolutely have another Specialist who understands you need better anticoagulation. I think I have been in the same situation like you (triplepositive also with high titres and a lot of embolies and TIAs, but I have got Specialists who know APS. We know when we are correct anticoagulated and in range with the INR as we then miss the symptoms. If we are lucky that is. But at least we must give ourselves that chance and try. There are actually different sorts of APS as there are different sorts of individuals but those with triplepositivity incl Lupus Anticoagulant usually need Warfarin and a rather high INR also.

[Lure2 in reply to Lure2]

I now read your range is rather high, even up to 4.5. Then you must test your INR more often and try to selftest. Also learn how to eat when having APS. The brussels and broccoli etc can lower the INR in perhaps 10-15 hours. Individuals but for some of us here that is a fact.

Also see to it that you have a shot of LMW Heparin when the INR is too low.

[FatEdi in reply to Lure2]

Thanks for your reply. I'm in the UK and spent hours going round in circles after the TIA. I called the thrombosis nurse who told me to call the GP. The GP receptionist was adamant there were no phone appointments to be had and to call 111. Eventually spoke to someone via 111 and they initially say they're going to send an ambulance. I say no, i'm fine now; then they say see the GP within the hour; GP wont see me and told to call 111 and round and round. Eventually spoke to a GP who said she'll make an urgent referral for me. I might also have Addisons and lupus but waiting for referral. I have got a self-testing machine but the new box of sticks hasn't come with the chip to put in the machine! Just moved and don't know anyone I can ask, and pharmacy are going to post it to me - eventually. It's all so stressful. I wish i'd gone with my first inclination which was just to go back to bed and do nothing about it. I'll ask about Heparin shots as i've been rollercoastering and had the TIA when I was back to INR 2.4. I'm quite happy to inject myself. Was self-administering IM B12 shots until i was diagnosed with APS. Now taking no supplements at all incase they interfere with bloods when i see the endocrinologist and rheumatologist, whenever that may be.

[Lure2 in reply to FatEdi]

Hi,

You replied on my answer to Madmumma. I am in Sweden.

You gave you Warfarin and who diagnosed you with APS? What therapeutic range are you on? You must absolutely look for a Specialist who can help you with your illness. Many autoimmun illnesses go hand in hand like SLE(Lupus) Sjögrens, RA, Thyroid illnesses. That is why it is difficult to diagnose these different illnesses and that is also why we need to have a Specialist who works with these illnesses every day. It is a fight to get to that Doctor!! Phone those Doctors and ask to see them.

Good Luck

[Ignacio182]

I have founded several companies in LATAM and now expanding to the U.S.

Once controlling INR with self testing, I made a promise to myself not to let APS determine my purposes.

I am a father of 3 , happily married and pursuing professional goals.

Do not let a condition ruin your passions.

Cheers

[user666]

I work full time at a position I interviewed for after my first massive stroke. I am a site supervisor of a family resource center where I am in charge of the curriculum and care of 60 students and four staff. I find working has improved my physical and mental health immensely. Being active and independent are important to me.

[Lure2 in reply to user666]

Hi user666, May I ask if you have got Antiphospholipidsyndrome?

[user666 in reply to Lure2]

Yes I have a diagnosis of arterial TAPS (thrombosis Antiphospholipid Syndrome). I am on aspirin, warfarin and HCQ.

[Lure2 in reply to user666]

Good. Did you not find that also anticoagulation made you feel much better so you could work? Being active is very important for APS for those who can be that and are correctly treated.

[user666 in reply to Lure2]

warfarin has not changed anything for me other than what it is proven to do, prevent further clotting. My general health only improved after adding an hour of daily exercise, a very high fiber diet and treatment for my generalized anxiety.

[Lure2 in reply to user666]

Hi user666,

You joined us in February this year and you have not written anything about your symptoms before you got Warfarin and Aspirin etc.

Most of us note a remarkable change in symptoms as soon as we have started anticoagulation. Many of us have neurological symptoms with dizziness, TIAs, migraine, doublevision etc etc. Healthy eating and being active is also very important but if we have got APS that is, anticoagulation with the correct INR makes a great difference as to our symptoms.

What symptoms did you have when you were diagnosed by your Specialist and what therapeutic INR of Warfarin do you have today?

I ask as we all learn from eachother here.

[user666 in reply to Lure2]

I had strokes and kidney arterial clots and a history of miscarriage. I am on the recommended INR with a target between 2-3 and low dose aspirin as per most recent arterial APS protocol. My strokes caused most of my issues and warfarin made no noticeable difference.

Multiple studies on warfarin have never been able to prove that it at all helps the above mentioned symptoms and it is only proven to prevent clotting so it helps prevent further damage from clotting to organs but does not reverse preexisting damage. It is proven to prevent TIA( which are a clotting issue). Small and poorly run studies and antidotal case studies link migraine improvement to warfarin but causation is not proven.

Most specialist now believe it might be a placebo effect not causation. Most present day hematologist will not support an initial INR above 3 either for it is proven to carry little to no benefit and far too much risk.

My migraines with aura were not improved by warfarin but after my second stroke a PFO with an atrial septal aneurysm was closed which did cure my migraine auras completely.

I hate taking warfarin and can not wait for something else to be approved for us.

[KellyInTexas Administrator in reply to user666]

could you please provide a link to the most recent study that supports aspirin being included with the most recent APS protocol that recommends an INR between 2-3 in a patient that has had arterial clotting?

Or is this just for you specifically because your PFO was repaired?

[user666 in reply to KellyInTexas]

my pfo closure had me on warfarin( 2-3), plus Plavix plus 325mg aspirin for the six months after closure now aspirin 80mg plus 2-3 INR warfarin.

It is standard practice to initiate low dose aspirin plus moderate intensity warfarin for arterial aps patients after their first event. tandfonline.com/doi/full/10...

[KellyInTexas Administrator in reply to user666]

Thank you. I had always thought so too.

There has been a bit of discrepancy between even the top specialists re the aspirin.

I appreciate the latest paper. ( I actually need it. )

[user666 in reply to KellyInTexas]

Are you on a statin? Statins and HCQ are also frequently used even with low natural cholesterol after arterial clots due to APS. I am on a high dose statin even though my natural cholesterol is very low.

[KellyInTexas Administrator in reply to user666]

Yes, I am. Plus 200 mg Hydroxychloroquine. I’m doing “all the things!”

[user666 in reply to KellyInTexas]

the best results for no recurrence of arterial clotting were with dual anti platelet therapy. I however was bruising too much when on both aspirin and plavix so I went to just one. If I have a recurrence plavix will likely be added again. Good luck.

[Madmumma in reply to KellyInTexas]

I was on Clopidogerel (in addition to Atorvastatin, Amlodipine, Lansoprazol) and that was changed to Aspirin when my INR is bouncing. It’s still bouncing and I’m still covered in haematomas. The slightest knock brings up a big hard lump and a bruise. I’m a bit wobbly so keep bashing into things. Going to change my door handles!

[Lure2]

Hi Blonderagdoll,

I see you have today answered on a very old question 9 years ago, that I among others have answered. Hope you read those answers as you can find some answer there I believe.

We need a Specialist who cares and is knowledable and something very good to thin our blood with.

[Whitj]

I was diagnosed 15 years ago and work as a manager within the NHS. I’m just in the process of applying for ill health retirement due to increased levels of fatigue and muscle aching. My rheumatologist is in full support. I do however have fibromyalgia as well and he says it’s impossible to know definitively which one of the LTC’s is causing the flare up which has been going on for 18 months now.

[Lure2 in reply to Whitj]

Hi Whitj,

I do hope your Rheumatologist who is helpful knows about autoimmun illnesses like APS, SLE/Lupus, RA, Sjögrens, Thyroidea as I guess you know that they very often go hand in hand and are difficult to give a correct diagnose sometimes. That is why we need a Specialist who works with patients like us every day.

You mention Fibromyalgia, which is like also MS an illness sometimes wrongly diagnosed.

I am not a Doctor and why I say this is why I have been here for 9 years and read a lot of patients stories and what other Admins have answered during the years. So get a Specialist which can be difficult as there are not so many of them.

Has he given you a diagnose of APS? This has always before been a site of APS that is why I ask.

[rach1081985]

im a support worker for adults with learning disabilities always worked in care gt a good boss ..i have many illnesses as well as aps