Hughes Syndrome and menstruation

[issybellefox]

Just looking for some reassurance regarding APS, warfarin and menstruation. I suffered a stroke in February and tested positive for APS in April, I started warfarin in June with a target INR of 2.5 - currently at 2.2 I’m also still on Clopidogrel.

My periods have become irregular (late one month and early this month) but I’ve noticed that in the week leading up to it I feel really run down, lethargic, lose of appetite and tingly hands and feet. I’m due for for my first haematology consultation in September and although I’ve discussed my symptoms with my GP and stroke consultant they don’t know much about APS and what I’m to expect etc. I’m hoping this is all normal, I’ve had my blood pressure monitored and they’re not concerned about another stroke or other event but equally some reassurance that what I’m going through isn’t cause for concern would be fab.

[Jmiller623]

Not on anticoagulation other than aspirin and Plaquenil. My symptoms always flare the week before my cycle. It’s a well known phenomenon. My guess is the surge in hormones makes us mildly hypercoaguable and hypertensive allowing our vascular symptoms to put on a good showing.

Hope this answers your question. As long as your INR is within target along with antiplatelet agent, you should be fine.

[issybellefox in reply to Jmiller623]

Thank you, this makes me feel much better! X

[KellyInTexas Administrator]

Hello Issybellefox,

According to APS Specialists, your INR likely not set quite high enough for you if you are still having , “ break through symptoms “ of hyper coaguable “ blood. Your target is a bit on the low side.

Who has set your INR at 2.5?

Have your Hematologist look at the EULAR guidelines for APS management/ treatment. I’m sure he or she will already be very familiar with these recommendations. In the meantime you might have your current physician do the same.

For arterial involvement ( which a stroke is) the suggested INR could be a little higher if needed.

Stay very well hydrated in the heat. Lots of water!

healthunlocked.com/api/redi...

[issybellefox in reply to KellyInTexas]

My stroke consultant set my target INR so maybe my haematologist will increase it when I meet with them in September. I have seen a lot of people on here say that they feel best when it’s at 3 or above.

[Lure2 in reply to issybellefox]

That is true when it has to do with APS.

[Suejane in reply to KellyInTexas]

I visited St Thomas’ Hospital hospital on Tuesday and although I’ve been on Warfarin for 11 years I have had my range queried by a doctor near where I live in northumberland. My range is 3-4. The specialist at St Thomas’ Hospital said that for arterial clots they will always recommend this range

[KellyInTexas Administrator in reply to Suejane]

Yes, that’s correct. That’s what I’m told here’s as well.

I will say what I always say- it’s my mantra:

“ ultimately, guide lines are simply that. Each case should be taken on a patient by patient basis. “

Normally for arterial clotting, especially if a patient has had more than one arterial clot, the INR is set at 4.0

The question becomes, do doctors feel comfortable waiting for a second arterial clot?

This is when a very seasoned doctor of APS knows how to asses various risk factors that might make that risk more likely. “ Each case should be taken on a patient by patient basis.” There is now a GAPSS scoring system to help with assessing these risks.

My APS specialists have been using these questions with me before this was put in place.

My very astute GP’s and top neurologist back home who just innately understood APS from getting themselves up to speed , instinctively used this system also.

[MaryF Administrator]

I have always had terrible flares once a month, which have gone on for decades, rather like very bad flu and accompanied by very bad pains. This phase of my life, thankfully will abate soon! At this time I do need extra medication, and usually it settles down, it is almost like all my autoimmune conditions get together and have a party!!! One to which I would decline an invitation!!. MaryF

[issybellefox]

Just had my INR checked and it’s dropped to 1.8 since last week so it’s no wonder I’m feeling groggy

[KellyInTexas Administrator in reply to issybellefox]

Did your stoke consultant prescribe you LMWH to bridge with when your INR is sub therapeutic?

In what time frame do you get your results ( from time of draw to results?)

How often are you getting blood draws?

Have you been counseled on the best ways to manage your vitamin K intake from green leafy vegetables ? Done properly, they well be a tool to help you adjust your INR more quickly that waiting the 48-72 hours for a medication adjustment.

[issybellefox in reply to KellyInTexas]

What is LMWH 😂?

I was tested in April and diagnosed in May then retested last Friday getting results in September.

I’ve not been counselled on anything, it’s literally been a case of “you have Hughes syndrome, you’re going on warfarin and you’ll meet a haematologist at some point” all I know about APS has been from my own research and other than than that I’ve had no guidance whatsoever.

[HollyHeski Administrator in reply to issybellefox]

When our INR drops below usually 2.5/3 they suggest we inject heparin (LMWH).

Roll on Sept when you get to see specialist x

[Lure2 in reply to issybellefox]

That is quite too low INR! You are practically not anticoagulated at all around an INR of 2.5. I personally need an INR of 4.0.

[issybellefox]

As an addition I’ve just come back from the hospital and they’ve told me I also have a hole in the heart