New to APS and worried

Hi all

I am new to this group but have been on lupus uk for a couple of months as I was diagnosed with SLE, arthritis, alopecia, Malar rash, back in Nov 16. I am 38 and live in Leeds and work for NHS England as a legal admin manager. I have recently being diagnosed with APS and just spent 4 weeks in hospital with suspected TIA, however not diagnosed as MRI all clear but they say due to amount of steroids I am in these could have masked the clot.

I am tripple positive with high ANA and anti ro positive plus DNA (tho I am not sure what this is). I am on high prednisolone (30mg), hydroxychloroquine 200mg twice a day, codeine, paracetamol, gabapentin, omeprazole plus at the moment trinzaparin injections and 2mg warfarin. I am attending the anticoagulant clinic at St James Hospital in Leeds every other day for both finger test and vein blood tests. I am also under Rheumatology at Chapel Allerton Hospital under prof Emery where I am currently having Rituximab infusions where I get constant mouth and nose thrush and also under neurologist again at chapel allerton under Dr Vittam so think I have a good specialised team.

What I find hard is that the symptoms are not settling or improving with all these medications. I was only diagnosed in November 2016 and it has been a whirlwind, in and out of hospital. In and out of work where I am now down to half pay but can't physically work with all tests and my symptoms.

At first lupus was the main condition however now it seems my APS has taken over and causing me lots of issues and I am worried plus scared.

My first INR result was 0.9 and I was put straight onto 10mg warfarin then my next result was 4.2 so they reduced my warfarin to 2mg. The last two have been within range 2-3 but they say they are worried how quickly I have reacted to the warfarin. I saw it as a positive.

I am back tomorrow again so shall see what happens.

sorry if this is long winded but I am not sure where to turn or how to accept it all.

Linds

20 Replies

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  • Welcome to the group. Not long winded, just concerned and understandably so.

    Are you eating consistent green vegetables as a routine. Many times INR can change because the amounts of vit k being ingested, aren't consistent. Carrots, cauliflower and oils, although not green, have vit k.

    Did they give you a "basic" listing of foods and their vit k values so you would have a starting point to pull foods from. If not ask for one.

    I can tell you plain pasta, rice, and cereal have close to no vit k. Butter has close to none, but margarine can be high.

    As they are doing finger-stick and venous ( from the vein) draws it sounds if they are preparing you to be able to do your own INR monitoring at home eventually. This is good, as you won't have to be stuck on their schedules once you can ascertain what your numbers are, fingerstick versus vein: When you know if there is a difference you will be able to do your fingerstick and have them adjust the Coumadin/ warfarin you need from home. Just by calling in?

    When you go tomorrow ask them what the plan of care is with you? Make sure they include you in the process/plan, your concerns are important and need to be considered. It will make it easier for you so you know what is happening, to know what to expect, and questions to ask.

    Is the person doing your Rituximab infusions the same person monitoring your warfarin? Make sure all of your medical people are conversing about your treatment so each knows what the other is doing. Then maybe you can decide who should take the lead.

    I didn't realize steroids could "mask" a clot. Either it is there or it is not.

    I'm from the USA and we do things differently here. We are still trying to catch up to everyone else regarding this disease.

    Others will be along soon that know much more than I. We are not medically trained here so this is just my opinion!

    Hope they respond soon. Cindy in NJ, USA

  • Hi Wittycjt

    Thank you for your reply.

    They did go through vit K info with me and said not to suddenly change my diet as my current INR will take into account my current level of vit K intake. I do eat spinach and kale as these are healthy and fall part of the lupus clean eating diet that I follow.

    I will ask today what the plan is going forward and if selftest is an option. I also need to check if I can continue with my voltarol and ibprufen gel for my arthritis. I haven't used any since last week with diclofenac and ibuprofen interfering with warfarin.

    Yes apparently steriods when taking for some time in high dose can mask clots and interfere with results. You can google this if you are unsure.

    Thank you and I will update later after my appointment

    Take care x

  • Yes the USA way behind in APS! Plus u get these docs that think they know more than Dr. Hughes here! They think they're God and r Egotistical Maniacs lol.. here u must call first to see if they've ever even heard of the disease! Good Luck and GODSPEED!!!

  • Hi welcome, all of this is very daunting for you, but you have come to the right place and will get good advice.

    Wittycjt advise on inr levels good. You are under a lot of specialists, which is half the battle - are they talking to each other? Which one is your aps specialist?

    Just take one step at a time, we will walk it with you. X

  • Thank you for your reply.

    I don't actually have an APS specialist just part of a warfarin clinic but prof emery and dr vittam are my main contacts who I have regular contact and reviews with.

    I will update later after my appointment

    Take care x

  • Hi Linds and welcome to our friendly forum.

    As Holly has said, take one step at a time.

    It is important that you are under the care of an APS experienced consultant and there is a list of UK APS specialist in the pinned posts on the right of this page; click the 'view 8 more' tab and you will find the list.

    Many of our members feel better when their INR is between 3.5 & 4.0, I certainly did when I was on Warfarin. I am now on Fragmin shots, instead of Warfarin, and that seems to suit me much better.

    Dave

  • Hi

    Thank you for your reply and where to look for list of APS specialist.

    I have taken a look and pleased to say my current Rheumatologist Dr Emery is listed as a specialist for Yorkshire which is great news.

    Thank you again was very helpful

  • Hi Linds

    Thank you, it's a pleasure.

    Dave

  • Hi I am also under prof emery at Chapel alerton leeds and all. I can say is he and the team are excellent . I have been going for nearly a year now and I can't praise them enough . I live in Huddersfield and also workm for the nhs . But the have really looked after me and listen to my problems and concerns . Hope you feel better soon x

  • How fortunate for you, I can't wait for this to happen for us in the USA

  • Hi, and welcome, you will receive a lot of common sense advice and support on here, so far the diet advice re your Warfarin is good, and also mentioned, the need for your consultants to talk to each other, as clearly the dots must be joined. At your appointments do regularly check that your Iron, B12, D and Thyroid gets looked at also, as you don't want anything else to be driving things in the wrong direction. Are you on Plaquenil? MaryF

  • Hi Maryf

    Thank you for your reply.

    No I'm not on Planquenil, I was on MMF but they stopped this when my neurological symptoms started as they thought it might if been the meds.

    I am also due to reduce my Prednisolone on Fri to 20mg so hoping this is a good sign.

    What is Planquenil please?

  • Plaquenil is hydroxychloroquine

  • Oh right, yes on 200mg twice a day

  • Hi Linda.

    I feel for you at this time for what you are going through I am now 67 and started at the same age you are now 38 with numerous problems I won't go into all that it is the APS I am telling you my experience . I attent Chapel A carnt praise the place enough staff all second to none. Been on warrfrin 20+ years 3 to 4 is my one range for the past 12 months patients with APS have had to have finger prick and venous blood tests this because both give a different readings.

    Hope this is of some help to you and remember I will be 68 this year I didn't think I would reach 40 things have improved so much since I was diagnosed. I'm having my 8th retuximab infusion on the 14 at Chapel A believe me things will get better but it takes time it won't happen overnight gone on long enough so you take care

    Love & Hug & a prayer from me to all on healthunlocked SueXxx

  • Did they not do all of these lab tests whilst you were just in the hospital?

  • Hi

    I had various tests brain MRI, spine MRI, nerve conduction tests, various blood tests, constant obs as my oxygen levels and blood pressure were low.

    I have been having weekly blood tests since Nov 16 when I got diagnosed with SLE.

    I am due to be reviewed by prof emery end of June to see if the Rituximab has helped.

  • I am asking if they checked your thyroid, b12, iron, vit d, etc ? How were the results?

  • Hi,

    I am so glad that you sent your question on to the site here. You have already got a lot of very good answers.

    Good to hear that Dr Emery is at the list for experienced Doctors and that you are going to see him end of June already. So you know who could be the "leader" perhaps and who you should put the questions to. I am sure the other Doctors also are very good but it can be important to have a Doctor who is keeping in all the "threads".( Hope you understand my Swe/English).

    If he is a Rheumatologist he also knows about SLE and Thyroid-issues as you know these three and also Sjögrens syndrome go together like some sort of "cousins".

    If you eat Spinach which is good, it will lower your INR so try to eat it every day and the same amount. You remember ...... constancy.

    Also I notice that you blood pressure is not raised and that is very good.

    Stay with us now and ask any question you can have. We are here for you as you know and we care also.

    Kerstin

  • Hi Linds, I don't have Lupus but do have APS, Sjogrens and other related illnesses.

    I have also taken Rituximab for vasculitis and it has really helped that. Nancy in West Virginia

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