Bad day

[amy1808]

I just need to vent .

I’m so upset to night , lately I’ve been coping ok with this awful disease , still have the odd off day . Well today it all went bottoms up , started the day off ok , it got to about 3pm and I started to feel a bit vacant and sick , head woozy , the usual , it’s got worse as the day has gone on , numb face , aches and pains , I haven’t had it this bad for months , it’s made me feel quiet unsafe 😪. Just self tested and guess what , inr 2.8 , I always feel rubbish when it goes low . Early night and chill it is then xx

[HollyHeski Administrator]

Vent away - really hope you get a good night's rest and your INR is better/higher in morning xx

(Do you have heparin for when it drops low?).

[amy1808 in reply to HollyHeski]

No I don’t , they said if it goes below 1 they will give me Heparin to bridge it . X

[KellyInTexas Administrator]

Bridge, woman, Bridge!

As Holly wisely asks, do you have heparin at home?

Such a horrible, sick feeling... that dropping INR. You describe it so perfectly here... ick. Numb and tingly and almost out of body except you are somehow stuck in the sick and failing and sputtering one.

Migraine?

Oh my gosh, I’m so sorry. Thinking of you so fondly....

[leakeadea]

So sorry I can definitely empathise with what your going thru. I would say bridge with heparin too but if you're like me and not allowed to bridge until my vein INR is confirmed in be below 2.8, then you won't be able to have a Heparin injection either.

You really need to have a vein INR draw tomorrow for sure, as your vein result is probably lower than your Coagucheck result and then you should definitely be given a Heparin injection

When my Coagucheck is telling me my INR has dropped, I increase my warfarin dose to push my INR back up again. I find increasing my warfarin dose can really relieve my symptoms.

Hope you can get your INR back up quickly. 🤞🤗Xx

[TwoH]

I do not have the INR issue but I do need to vent as we all do sometimes. All of this just stinks! I am so sorry you had a rough day and I sincerely hope that it is much better for you tomorrow!

[GinaD]

So...they will"bridge" you only if INR is below 1? Have I got that right? But 1 is a normal, unthinned INR number! That makes no sense in the context of our disease.

[amy1808 in reply to GinaD]

🤷‍♀️that’s what they said . My inr bac to 3.3 today and I’ve adjusted my warfarin x

[GinaD]

You might check and confirm that clinicians are aware that you have APS and are NOT on warfarin due to a fib or a stent or such. We dont have sticky spots in our blood. We have sticky blood. Sounds like they are not treating you for APS but for the usual " sticky spot" conditions warfarin is prescribed to address, I may be wrong, but....

[amy1808 in reply to GinaD]

Hi Gina , no luckily they know I’m lupus anticoagulant, I don’t think I would still be here if I wasn’t on warfarin. I suffer with hemiplegic migraine too , they have very similar symptoms, plus menopause in full swing 🤪🤪🤪

[MaryF Administrator]

I hope you improve over the next few days, a bad day can really knock the stuffing out of you, I hope you bounce back and can put it behind you! Best wishes. MaryF

[KellyInTexas Administrator]

How can you get enoxaparin at home, for such emergencies? And do you self test?

[Yllek]

I’m so sorry you’re having a rough time at the minute. I can honestly say you’re not alone!

When my INR dips under 3.4 my neurological symptoms return and they are scary and make me feel really ill and down.

Like you, I suffer with facial numbness as well as tongue tingling and a whole host of weird and usually inexplicable symptoms.

There are people who don’t understand these symptoms, and I must say in my experience these are usually people who don’t actually suffer with central nervous system issues caused by APS.

I do suffer with CNS issues and my spinal cord as well as my brain are both affected - both with a lowering of my INR and both evidenced on mri and pet scan.

I’m extremely grateful to have found experts who understand this and understand the need for a higher INR as well as injecting clexane when my INR drops below 3.

I know you see a great rheumatologist but have you thought about also seeing an expert haematologist? You live not too far from me and my haematologist is bloody brilliant with APS! She truly understands and can treat APS exactly how it should be treated to help you live as normal a life as possible.

My neurological flares can last a few weeks after a dip in the INR l, even when I’m back in range, but I do hope you’re feeling better today.

Inbox me if you want any info on my Drs or if you just need to chat.

Kelly 🇬🇧 x

[amy1808 in reply to Yllek]

Thanks Kelly

I see prof hays at MRI but at my last appointment I so one of his team and he seemed to be better informed about APS . He has asked my GP to do regular vein tests against my machine as he knows my inr fluctuates . He seemed pretty pleased with me and I go back in 12 months but luckily I can speak to him if things change .

Who do you see? X

[Yllek in reply to amy1808]

Hi

I see Dr Vanessa Martlew at The Royal Liverpool hospital. She’s an APS expert consultant haematologist.

I see a neurologist and I’ve seen multiple private rheumatologists but it was Dr Martlew who prescribed the clexane, and understood the need for it, when my inr drops and I have odd and frightening symptoms.

Kelly 🇬🇧

[KellyInTexas Administrator]

Amy,

I hope you are better.

I think Kelly🇬🇧 Has offered very salient insight and advice and help on our cerebral APS.

She has a hematologist near you that understands our needs very well, supports home monitoring as long as frequent parallel vein draws are done to keep you accurate, and will evaluate you and expertly advise for Clexane bridging .

I strongly advise you to pop a message in Kelly’s inbox at your earliest convenience.

Lovely Kelly 🇬🇧, I’m glad you caught this post!