'Funny turns'

[Zoebarber22]

Hello everyone!

I have been diagnosed with APS and have been taking warfarin for 12 months, however my INR is rarely I'm range and I am still being tested at least every 2 weeks.

I've found that since I had a DVT I have a 'funny turn' about once a month.

This usually involves my temperature rocketing and getting clammy, my arm and hand usually go numb/tingly, I get a killer head ache, my chest feels like its pounding and I just feel generally zoned out. This usually lasts about 10-20 minutes and afterwards I feel completely wiped out.

Does this happen to anybody else or does anyone with more experience know what it could be?

Every doctor I see is certain it relates to my period however I am 99% sure it does not.

Thanks everyone

[Ozchick]

You have sort of answered your own question-if your INR is not in range you will experience all sorts of symptoms. Often transient but still a bit scary at times. What does your APS specialist say? If he/she brushes you off or is not familiar with APS you could go on like this indefinitely. Do these ever occur when you are in range? Talk to him about changing to Heparin rather than warfarin to keep properly anticoagulated.

[Zoebarber22 in reply to Ozchick]

My Hematologist is really good with regards to knowledge, however he isn't very easy to access so I'm stuck with my GP.

We did discuss a change of anti-coagulant however I'm still deciding what would be best for me

[london-lass]

What is your inr target? Often us APSers need a higher target than usual to reduce symptoms. I feel strange and used to have turns when my inr dropped. Also it is classic to not be stable. I hope you have a specialist consultant and a good blood testing team. Have you considered self testing? My nurses now accept that I can tell when I am not in range, and support me accordingly. Where are you based? There is a list of specialists on the Hughes website. Good luck with it all. Ann

[Zoebarber22 in reply to london-lass]

Hi, my target is 2-2.5 which I think is quite low, however I struggle to get it to this level.

I am in the UK, self - testing isn't a thing in my area

My consultant is great but not very easy to access and I feel like my nurses are just their to test me and give me the result, there's no extra advise, they barely engage in conversation, thanks

[Dot69 in reply to Zoebarber22]

I also need to be 2-2.5 which took me many months to reach but have now been stable for 3 months. On reading others INR range mine does seem low but my heaumotologist wants it there yet my specialist says he's ok if it goes to3-3.5 I'm protected from having another stroke when it's 2-2.5

[Manofmendip]

Hi and welcome

Where are you from and who is managing your APS?

Many of our members need an INR of between 3.5 - 4.0 to keep their symptoms manageable.

Dave

[Zoebarber22 in reply to Manofmendip]

Hello, I'm from Manchester and I am under Wythenshaw Hospitals Haematology dept.

My therapeutic range is 2-2.5 so maybe it's a bit low?

[Manofmendip in reply to Zoebarber22]

Zoe, I think your INR may be too low and you will need to discuss with the conultant about pushing it up until you find your symptoms resolve more. Dave

[panda60 in reply to Zoebarber22]

My range is 3.5-4.0 and get symptoms if it falls below 3.0 so definitely worth seeing if your consultant will change your range. I see a consultant from the list of specialists from the Hughes Syndrome Foundation so perhaps your GP will refer you to one.

I self test with the support of my local warfarin clinic. My bugbear is that my CCG will not supply the test strips. But it is worth the expense as it gives me some control.

Hope you can get sorted soon.

[Lure2]

Hi, I do agree with the others here that most certainly your symptoms are from APS and too low INR!

It is a "fight" really to get the right Doctor (a Specialist!) and an allowance to have an INR that makes the symptoms go away. Most of us have had to take that fight fo feel ok.

I am on an INR between 3.2 - 3.8 and I selftest.

Best wishes from Kerstin in Stockholm