Sticky Blood-Hughes Syndrome Support
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This Year's (2017/18) Flu Vaccine

It seems some people with APS have no problems with the Flu vaccine, while others do.

This year, my INR shot up to 7.7.

And, I seemed to have some type of flare. I've been suffering for weeks after the shot.

Professor Shoenfeld in Israel (and others) is doing work on adjuvant syndrome, whereby the flu and tetanus vaccine can trigger APS or cause a spike in antibodies.

When I read about the tetanus vaccine I remembered my teenage migraines and fatigue starting almost immediately after my tetanus vaccination.

The bottom line for me, is that I generally, politely ignore advice proffered by my GPs on APS, preferring only to listen to my excellent Rheumatologist.

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If you are genetically predisposed to any particular condition, then a bad reaction from a flu shot can be a trigger but not the cause of setting off the disease. Many conditions, such as Hughes have not had a cause found yet. They are still grappling with the mechanics of how exactly it works in some people.

Many of us can tolerate one thing while some of us will not be able to. We are all individuals and the way this condition affects some, is often because of our individuality.

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Yep. I lead an international research team for a genetic testing company. We have some interest in autoimmune disease. Naturally, some of my 20% time, side projects look at genes and APS. I don't believe a genetic cause, like single gene disease such as cystic fibrosis, will ever be found for APS. But what we're interested in is the combination of various SNPs (genetic variations) in various genetic pathways (involving multiple genes) and how they interact with lifestyle decisions (such as diet and exercise), or environmental exposures (such as viruses or indeed vaccinations) to trigger autoimmune disease.

In this regard, my own family history is instructive. I have APS, my sister has APS, my father died of catastrophic APS and was actually part of Prof Hughes cohort of patients between 1983-86 that led him to first describe APS. Then, checking back through family death certificates to the eighteenth century, I'm seeing the cause of death of many family members in their 30s lists as either: Lupus, arthritis, rheumatoid arthritis, or stroke. All strongly indicative of APS, and a genetic influence, if not a genetic cause.

So far the earliest, detailed, clear cut case of APS of come across dates to the early 1700s. Thanks to a diary and letters the symptoms are pretty convincing.

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Hi,

I hope the INR is now steady. I do not know what symptoms you have, as you have not yet told us about yourself.

What therapeutic level have your Rheumatologist put you on? Do you selftest? An INR of 7.7 is very high. Was it really only caused by the Flu vaccin do you think? What did you do to get it down?

Best wishes from Kerstin in Stockholm

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Hi, I've been self-testing for ten years now, with a target INR of 3-4. My warfarin is on the higher side at 12 mg, but rock solid stable over that ten year period, with only very occasional dips or spikes. Nothing else changed in my life or diet apart from the flu vaccine. There is some emerging (although contradictory) evidence that the flu vaccine can spike INR in some people.

In fact, I haven't seen my haematologist for nine years. I simply email in my results and get an email back.

After this spike, they just took me off warfarin for three days, and monitored me daily. It took about two weeks to get under control, but now it's safely back at 3.8.

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I guess your Hematologist who you have not seen in nine years is your Specialist of APS. My Hematologist takes other bloodtests at least twice a year and those bloodtests have to do with our illness and I also ask for tests for Thyroidoses as other autotimmun illnesses, especially Sjögrens and Thyroidea, can go together with APS as they are like "cousins".

They also check my antibodies as I am Lupus Anticoagulant and also triplepositive with high titres.

The most important thing however is when you are selftesting you must know if the fingerprick number (CoaguChekXS) and the vein-test number differ. For me it differs a lot but the difference is always the same which is exstremely important. I have to go to the hospitallab every second or third month now. If I have INR 5.0 on the machine the vein-test is around 4.0. So therefor I try to stay at an machine-number of 5.0 to know I am in range.

Have I understood you correct that they did take you off Warfarin for three days? What did you get as to anticoagulation during those days? How often do you selftest?

Kerstin

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When they took me off Warfarin for three days, they monitored me (remotely) daily, and could see my INR was still above 3, as it came down slowly, as such I was still anti coagulated. As soon as it got close to 4 they restarted, such that it didn't swing in the other direction. I think it went something like: Day 1 7.7 -- Day 2 6.1 -- Day 3 -- 5. 5. Then, on day 4 it was somewhere above 4.

For frequency of self-testing, it varies with me. At the start it was a couple of times a week, now it's typically every two weeks, because I'm stable most of the time, and my haematologist doesn't like his APS patients to go longer than that, even if they are stable. I have a venous draw by the anticoagulation nurses every years, with a simultaneous Coaguchek finger prick. My machine used to run 0.4 too high. But, for some reason, the last time, it matched the venous sample.

My haematologist is not my specialist, even through he is a specialist in APS. He works closely with my rheumatologist, who is very much a world specialist, a full professor, and an active researcher as well as clinician. A superb doctor. She runs a Lupus National Centre of Excellence here in the UK.

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I can see that I do not have to worry about your anticoagulation etc as you are well taken care of.

I think you are lucky to be Lupus Anticoagulant and able to only selftest every second week. I can not understand how that can be. Do you also eat green vegetables like spinach and broccoli and brusselsprouts?

Thank you for your answer. We learn so much from eachother.

Kerstin

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I eat green vegetables. Not excessive amounts, but I don't limit or avoid them either. If I want them with my meal I'll have them.

To be sure, there are times, as I mentioned on another thread, that my INR drops slightly, but usually stays within 2-3, and I don't have any symptoms. My anticoagulation team will monitor more carefully for a few days, make adjustments, then things even out. But taken as a general trend over ten years, the line on a graph would look pretty stable.

I think part of the reason is that my hospital is a large university hospital. I have a team of about five well-trained, experienced anticoagulation nurses monitoring my INR and adjusting my dose, rather than a single haematologist or a single nurse (it seems things in America for APS are disgraceful).

They use their combined insights, experience, training, plus a computer algorithm looking at my long-term dosing and INR results to make very fine adjustments, often 0.5 mg. So while my regular dose is generally 11 or 12 mg. It can be 10.5, 11, 11.5, 12 if they see that it is veering high or low.

I much prefer the nurses monitoring my INR than my haematologist (who is excellent) because he completely trust them, and they have so much experience of doing so.

They compared it to changing the path of the super oil tanker: that you have to make small adjustments, otherwise a larger adjustment will have an effect several days later, and then you end up with INR going too high or too low and struggling to get back into control.

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Thanks for your answer!

I monitor my own INR with the very good help from a Hematologist and a coagulation clinic and also a Specialist nurse who knows anticoagulation with Warfarin and people with APS like me.

For me it is very important that I keep very close to an INR of 4.0 as I have Pulmonary Hypertension and Mitral- and Tricuspid- leaking heartvalves. I had also exstremely high bloodpressure before I started Warfarin but when I stay at an INR of 4.0 I feel rather well. The bloodpressure is also ok. Almost all neurological symptoms like doubleseeing and falling over and loosing the sight in one eye for some minutes etc are gone with Warfarin at at least an INR of 3.5. Still have some memory problems that can also be age-related.

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Genetics, environmental triggers, epigenetics . .. its fascinating! All those hormone and neurological interactions are complex. Its great that science is finally beginning to — at least!— recognize how complicated it all is . And this realization is trickeling down to GPs who are now less likely to dismiss autoimmune patients as crazy people.

I recall a meeting with a doc as we were discussing my bizarre symptoms. He told me about a workshop he attended in CA where strong correlation was presented that patients who had a first degree family member who had been diagnosed with a mental disease were (forgot the exact #, but it was high!) had increased chance of having fibromyalgia. He made the connection between “crazy” and fibro; and then I quietly pointed out that this data may not represent the connection in the way it was presented.

I responded: “My take is that there is a common cause, like a mistake in the hormone or neurology systems which effects both the brain AND autoimmune reactions. And the doctor said, “That’s a good point! No one at the conference ever brought that up, but that’s a good point.” REALLY? NO ONE AT THAT CONFERENCE SUGGESTED THAT COMMON CAUSE POSSIBILITY?

THis discussion happened some 20 years ago.

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I do not measure INR but I can tell you that every year that I get the flu shot, I gradually become sicker and sicker until by Christmas I am horribly sick, maybe not with flu but with every other disease that has come through the public school I work in. I have yet to decide if I will get a flu shot next year, but am quite resistant as it does not usually work out well.

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(We usually get our shots in September.)

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