Anyone had a high Anti-CCP result? Skin problems?

[OwensMum]

I am not yet diagnosed with APS but one of my consultants has queried whether it might be the cause of a DVT diagnosed in August. When I see him again next week I will certainly be asking whether I should be tested!!

Very briefly, I was put on Warfarin for life following a couple of episodes of thrombophlebitis and then a DVT. That was three months ago and I have never had so many problems with my legs. I have asked various medical professionals whether it could be linked to the Warfarin but all say no, it's just coincidence. I have venous insufficiency and am morbidly obese. Since I started the Warfarin the skin on my legs has started "flaring" very badly and I now have two ulcers. However, my "non-DVT" leg is also affected...I have an ulcer on each leg 😣

Earlier this year I had an exceptionally high Anti-CCP blood result and was referred to a rheumatologist to consider RA/Lupus. She has now ruled both of those out and insisted my joint and tendon pain is down to Fibromyalgia.

I'm obviously very confused and wonder if the Warfarin could be affecting my skin. All doctors I have mentioned this to have said no. I seem to have quite a few symptoms of APS but I know they can be generic to other conditions. I have always had "large red blood cells" too but I've never seen a haematologist.

Any of this ring true for anyone? Any advice or recommendations for a private haematologist local to South Wales? Thanks for reading 😁

[Lure2]

Hi and welcome to our site for APS!

I wonder if you have ever had a blood-test twice for APS?

You are on Warfarin now. What INR have the Doctor in charge put you on? We usually need a rather high INR with our sticky blood and also important to keep the INR in range. Have you had problems with that?

Best wishes

Kerstin in Stockholm

[OwensMum in reply to Lure2]

Hi Kerstin, I've not knowingly been tested for APS yet. My INR was set at 2-3 and it is usually within range. Having fortnightly tests as have had a lot of antibiotics recently. Would that mean that I don't have APS, or that they should consider testing and increasing the dose?

[OwensMum]

Thanks, that certainly does make sense! Am I right in saying then that I won't have been routinely tested for sticky blood without me knowing about it? I am seeing my GP, my dermatologist and my vascular surgeon within the next few weeks... which one would be the most easily persuadable do you think? Or do I need a haemotologist? I'll take a look at that list now, thanks 😁

[OwensMum]

Well well well ... my Rheumatologist is on the list!! I have however been discharged by her since she ruled out Lupus/RA so I may have to ask for a re-referral. She may well have already tested me for APS, but I'm pretty sure I had the DVT when I had the blood tests she ordered?

[OwensMum]

Thank you. I do have most of not all of the symptoms, apart from the pregnancy related problems.

Thinking back to four/five years ago, I had a spontaneous clot in my Greater Saphenous Vein that caused the whole vein to close up. I say spontaneous, but it did happen the day after I had spent a couple of hours sat in the same position on a chair with my knees bent and my then 6-year old son asleep on my lap!! The vascular consultant I eventually saw was going to strip it but then it reopened. They didn't check me for DVT at all during that. My legs have definitely not been the same since then and I wonder if that may have been the start of things, and if it is linked to APS. I'm definitely going to pursue this!! 👌

[MaryF Administrator]

Hi and welcome, firstly it is vital that you actually get referred to one of our specialists, we have a list across the UK, under pinned posts over on the right hand side of the forum, also some UK and global ones on our charity website: ghic.world/

The main tests, are listed under the Hughes Syndrome, part of the website, scroll down until you see main tests, get your GP to order all three, but take the form to your nearest hospital as the samples taken are time sensitive. Also get your GP to test your vitamin D, B12, folate and ferritin and also your Thyroid, unfortunately with your Thyroid they usually only do the TSH test which is not a great test.

A lot of us save up and do our own private panel of Thyroid tests, if you are on medication you need to include a test with reverse T3, there are a few on Blue Horizon, if you are not on Thyroid medication then the one I do for myself and family and others is this one, it is already discounted, but if you quote online or on the phone MARY20 you get another twenty percent off, I suggest you pay for a blood draw rather than a finger prick if you are not used to doing that: bluehorizonmedicals.co.uk/t...

As often quoted by Prof Hughes, the trio of disease is often Hughes Syndrome/APS, Sjogrens Disease and also a Thyroid problem.

MaryF

[Lure2]

Now you have got good answers from two Experts of APS here!

I totally agree with them.

First of all; we need a Specialist of autoimmun illnesses and then we have to have our sticky blood properly anticoagulated at a stable INR.

Suggest you read "Sticky Blood Explained" by Kay Thackray to learn what we have to know about APS. Good for relatives also!

Kerstin in Stockholm