Coming home

[GillyA]

So after 4.5 years in Nigeria and an APS diagnosis in summer 2020 I’m coming back to the U.K. In many ways I’m looking forward to it and I know my consultants - all 3 of them - will be much more comfortable with me being near better medical care (APS, warfarin and epilepsy are not a good combination).

The one thing I’m dreading is managing my INR. I have a full on job which will most likely include international travel. I’m a London commuter, so 1.5 hrs between home and work. I can’t self test and my INR is unstable, so normally weekly, occasionally a whole two weeks between blood draws. How on earth am I going to manage this? Here I drop into the clinic on the way to work, and am maybe 5-10 mins late in. I can’t risk stopping as I still have the CVST, so without thinners it will start to grow again. I’m even considering asking to go onto a DOAC (I’ve never actually had a DVT or PE). At the moment I’m taking Enoxaparin after injuring myself during a seizure. But I don’t know if they’ll let me carry on once I’m home and the CCG won’t let my GP prescribe it.

I’m just dreading trying to sort it all out. Any advice from anyone navigating the NHS gratefully received.

[Star13]

But I don’t know if they’ll let me carry on once I’m home and the CCG won’t let my GP prescribe it.

Then you have to fight your CCG! I’m on Heparin, have been for 14 years as I can’t have warfarin. DOACs are contraindicated for APS. It’s up to your GP to make you a special case with a shared care agreement for The Fragmin. I do hope your move goes well , welcome home!

[Ray46 in reply to Star13]

DOACs are contraindicated for triple positives, and not recommended for arterial clotting - so not enough information to say for sure. Even then many of us take (and are prescribed) contraindicated medication due to lack of alternatives - just means the doctors (should) do more work on risks and benefits and justification for what they are prescribing rather than just tick a box.

DOACs are off-label/unlicensed for APS, but so is heparin/LMWH unless pregnant (or it was last time I checked). Warfarin is basically the only licensed anti-coagulant for APS, so if warfarin doesn't work for you then anything is off-label and unlicensed.

Edit: to quote latest EULAR management guideline 4B:

DOACs could be considered in patients not able to achieve a target INR despite good adherence to VKA or those with contraindications to VKA.

[KellyInTexas Administrator in reply to Star13]

Are you on Heparin, or Low Molecular Weight Heparin?

[GillyA in reply to KellyInTexas]

Currently on LMWH as a fix for the last few months. The decision was taken to put me on this as they were increasingly concerned about managing things remotely. I had a bad seizure, fell and ended up with severe concussion, plastic surgery and an unstable INR as I tried to get back on warfarin after the surgery. It wasn’t a happy couple of months. ☹️. Fortunately, I somehow avoided a sub dural bleed.

[MaryF Administrator]

Do you have any access to any private medical insurance? We can give you a list of possible consultants that understand Hughes Syndrome/APS, however if this is too slow for you, you may consider a private appointment at The London Lupus Centre, if only to get your NHS back on track. MaryF

[GillyA in reply to MaryF]

Thanks Mary, I’m fortunate to be with Prof Cohen at UCLH and was referred to her as soon as the clot was found - so I haven’t had to face the struggles many of you have.

I’m hoping that she/her lead anticoag nurse (who is great) will be able to help. Being a senior consultant she and her team do seem to have more space for independent decision making.

Unfortunately my GP is mired in the CCG rules - can’t hold their own warfarin clinic, can’t prescribe LMWH. My very early dealings with the local anti coag clinic didn’t give me any confidence that they know what they are doing with APS and are very much in the come in every 6 weeks and don’t like doing the minor dose adjustments we need.

The GP do have their own phlebotomist, so if everyone is able to be flexible there may be a solution out there where draws can be done at either home or London, but it’s going to be very hard getting there. I think if at all possible the solution is to stay on the Enoxaparin, but any way around I’m going to have to use my best persuasion skills

[MaryF Administrator in reply to GillyA]

It sounds like Dr Cohen is your best bet, phew! MaryF

[Ray46 in reply to GillyA]

All you really need is a blood draw that will get your samples to a lab in the correct time. Any hospital blood room should be able to do that, London has a few hospitals...

May need to sort out how the results get back to your INR management team - that will vary by location. I know I can take a dosing letter walk in to any hospital blood room in local area and they will scan it as a blood test request, not sure how far that area actually extends, maybe just all the hospitals (at least 5) in the Trust, but it may be wider.

Your biggest issue I suspect is that it's unlikely to be "5 or 10 mins" - just due to waiting times. There should be plenty of choice for private test providers in London though, and no reason you can't call in a private lab result to NHS just as you would a self-test, just depends how valuable your time is.

[GinaD]

I'm in The States, so..l. no practical advice from me. Good luck!

[user666]

Have you discussed vitamin K2 supplements? Many studies show that it helps regulate INR. It might spread testing times out to four weeks instead of less than 2.

[KellyInTexas Administrator]

Gilly, what I would recommend ( please understand I am in Texas so forgive me if I miss a few logistical problems with this) :

Set up a consultation wit Prof. Cohen. Explain your concerns re: access to quick reliable INR testing and most importantly, your quick access to the results via a patient portal as soon labs return those results to doctor. ( in your home town surgery? Local clinic? )

That way if it’s on a day off, week off, etc, or more important if you are simply unwell and not in London , but at home, you can check INR local to you without having to travel into London. You can see local GP and get INR checked .

Prof cohen should be able to cc her clinic appointment assessment with you, and this suggestion / request to a GP local to you, stating the importance of frequent inr testing and quick adjustments of warfarin to keep in in therapeutic range. ( in other words , standard Anticoagulant clinics and 6 week checks are dangerously ill suited for APS patients.)

I, too, am a patient of Prof Cohen, so I’m familiar her very thorough and thoughtful clinic letters.

[GillyA in reply to KellyInTexas]

Thank you for your encouraging words. Part of me thinks I’m over stressing, but moving countries certainly adds to the stress loads. Hopefully with Prof Cohen’s help there will be a way through.

[KellyInTexas Administrator]

you can’t be too overly prepared in these situations…