New diagnoses

Hi

Well we're do u start iam 37 what a year it's been.I was addmited to hospital with supected stroke last Feb it's taken a year of MRI bloods to find out I have secondry APS they think I have SLE as well. All I can say so far iam crushed I hated the thought of taking warfarin it took weeks to convince myself it would help my dose changes every 4 days at the moment as INR is all over the place the possible SLE is awful some days iam in so much pain I could cry I have 2 children 7/11 bless them they don't really get it and feel just as stressed as me i work which is becoming hard al the time i need to work as when i was off last year i recived no help money wise i was so lucky the kids dad step in and family were amazing x

21 Replies

oldestnewest
  • HI and welcome, you are amongst people who understand, life will get better. Alongside your medication which may also include Plaquenil to help your SLE and also Hughes Syndrome and of course your Warfarin, it is very important to keep an eye on your Thyroid, plus your levels of vitamin D, B12 and Iron, as if any of these are out you will feel much worse. Great to hear about the family support, we can all do with some of that at times. Best wishes. MaryF

  • Vit D is servely low still waiting for meds for that I seem to be always waiting it dosent mater how much I shout no one is doing anything. thank u so much for repling I feel very lonely about it x

  • Your vit D must sit at 75 or above, are you under a Hughes Syndrome/APS specialist and where are you located? MaryF

  • Iam well under iam in west sussex the doc's at hospital have as a referral has gone to guys and st Thomas's but it took a year to find it who knows how long that goner take

  • Just checked my letter for vit d am at 20

  • Just keep pushing for a cancellation etc, and in the mean time write out your medical history and symptoms in bullet points and the points you wish to raise, so you get good information and results at any appointments you have. MaryF

  • Thank u

  • Hi and welcome.

    You are with friends now.

    Dave

  • Thank you x

  • Im holding your hand, I was only diagnosed last week with Hughes, sjogren's and Lupus - Its all overwhelming to be this sick, but gradually you will adjust, You will find your new Normal and you will regain better health.

    For my low Vit D I am using the drops that you put on to your food as they get fully absorbed, rather than a pill that needs to be digested (which does not work that well), so perhaps look in to that.

    For now let others take care of you until you are strong enough to be you again, you will be I promise

    Blessings xxR

  • Are the vitamin D drops prescription or over the counter? Thanks.

  • Super Daily D3 by Carlsen They do 4000 IU in one drop,2000IU & 1000IU per drop, pure as driven snow and last SOOOO Long as one bottle gives 365 drops amazon.co.uk/Carlson-Labora...

  • I understand as all of us here do. Things will improve, I was sooooo frustrated in the beginning trying to stabilise my INR as I was doing everything right, I even joked with my family I'd start smoking,drinking, eating the wrong foods, be a couch potato then at least I could give something up😆 It did and has settled but still can go 'off limits' 😊

  • Aloha from Gawaii!

    All over the world, we are with you!

    We understand. Sorry about the low Vit D.

    I don't have that problem here. The opposite, in fact! Too much sun!

    Can you go to the pool and swim? I find that helps, tremendously.

    Kerstin

  • I can only do little swims just stretches and bobbing around I did try doing a couple of lengths but got home and slept for about 14 hours😕

  • Hi rayl, I was diagnosed with primary APS about 3-4 years ago. Apart from the many problems associated with APS one recurrent problem I have is vit D deficiency, my latest level was 23 (January 2017) despite having been 'topped up' by a holiday in the sun in October 2016. Vit D deficiency will make you feel depressed and tired, I also get terrible bone pain in my legs, particularly the femur, hips, knees and ribs. The constant bone ache is debilitating which just adds to the misery. My advice is take your test results to your GP and ask for a prescription to bring your levels up. My APS specialist wrote to my GP and asked them to prescribe but this is the first time, previously I was just left untreated.

  • Thank u I've now got tables to bring it up only had one so far so not sure yet if it's helping x

  • On the Lupus side how can you go in the sun?

    I flare even if I feel it on my skin for a second - The first thing doc said keep out of the sun, hats factor 50, car screen UV blocked, so nothing with UV (sunbeds, lights etc)

    I would be in bed for days after 5 minute exposure

  • I get light sensitive with my eyes only I were sunny all the time even in winter iam sure when iam doing school run that must think she's a right nutter😂

  • Hi Rayl,

    Hope you find a Specialist who knows Hughes Syndrome/APS and the "cousins" and also Lupus (SLE). Those Doctors specialized in autoimmun illnesses (usual a Rheumatoligist) knows to distinguish between the different illnesses and symptoms and finally get you the right treatment.

    I am said to be primary APS which means that I have only Hughes Syndrome detected yet. With mostly neurological symptoms I have been on Warfarin now for 5 years.

    One of those symptoms I had when I only was on baby-Aspirin (which is not an anticoagulation drug) was that I had great difficulties to be in the sun because I was exstremely sensitive to light and of course especially sunlight.

    After anticoagulation with Warfarin I am not very sensitive to light at all.

    Best wishes from Kerstin in Stockholm

  • I selftest and I keep my INR around 4.0. We need a high INR and also a stable INR to feel better with Hughes Syndrome. We have in fact too thick blood!

    Kerstin

You may also like...