This is a brief history: I was diagnosed in 2005 with Lupus Anticoagulant APS and have been taking Warfarin since then. I've been having weekly INR tests all this time (the longest I've managed without is two weeks). Varies from 1.5 to 5.4 and appears non-dependent on what I eat, drink etc, so I don't know what the triggers may be. I also take Thyroxine and am currently under investigation for a growth on my right thyroid gland. My elbow joints have recently started to ache, and I could win Gold in July for sleeping! My memory and concentration levels are deteriorating rapidly and beginning to effect my daily work in the NHS. I am not eligible for the new anticoagulant Dabagitran.
Does all this sound familiar to others and, if so, does anyone have advice on how best to handle it all; what I can do to alleviate symptoms; is it worth being referred to a Haematologist; how long will it last etc etc.
I would be grateful for some advice please, and apologise for the lengthy first message.
Thank you.
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Shutah
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Hello there. It would be helpful to know roughly where you live, as others on here may be able to tell you who they access near to you, A good rheumatologist/or haematologist is the ticket, with a good listening ear of a GP both to you and your referral team. The other thing is, a lot of us here, push to get into St Thomas' where they have real expertise, I have this, and then locally things are better for me as they confer with St Thomas'. It took me a while to get all this together, and so I also went to See Professor Hughes privately at London Bridge Hospital, this visit, from the first appointment tightened things up for me locally, both for myself and my children.
I really understand the fatigue and brain fog. I have an underactive thyroid, also sjogrens, now finally passed an SLE Lupus test, also psoriatic arthopathy and of course seronegative hughes.... the brain fog is foul as is the fatigue.. and I am pleased that at least your thyroid problems have been noted... as a lot of people can have brain fog and not have their thyroid problems picked up on the NHS. Thyroid problems often go hand in hand with autoimmune diseases such as ours. Brain fog from thyroid issues is very common, and at times the dose for the thyroxine has to be fine tuned more! or other things added in!
It is imperative that you try and secure the correct care. Do keep us posted and let us know if there is any more help you require, also there are loads of printable papers on the Hughes Syndrome Foundation website.
Do also think of asking specific questions again, ie does anybody know anybody in my area of the UK etc. Lots of us on here have fought or in some cases had easy access to what they need. The best of luck to you,.
Hi Shutah. I was on Warfarin for 8 months after my second DVT and it made me feel unwell. My tests were negative for APS so they took me off it, and I was left without treatment. 4 months later I had a stroke (clot, not bleed) but still no treatment. I was feeling very ill, slow, foggy, and in pain. My new rheumatologist 18 months later listened to my thoughts that I might have Hughes Syndrome, ran the tests again and I was positive this time. So, since October last year I have been on Clexane (Heparin self-injection) and I feel so much better....still poorly, but brighter than when I was on Warfarin. Not every med suits every person, so ask about alternatives.
Sometimes, dealing with this condition is like running through treacle....whilst hurting, tired, foggy, bruised and trying to remember where you are heading!!!
Your symptoms are very similar to mine, I also work for the NHS and am at present going through ill health retirement because I cannot cope with the pressure of work.
I don't know I'm afraid. At the moment they GP practice is doing a great job at weekly INR's, and to be honest I don't think I have lupus at all, just the lupus anticoagulant agent in my blood. Take a look at NHS Choices website, this can often be a pretty good indicator of what they can and cannot do. Best of luck
Yes I have a positive Lupus Anticoagulant test (although I had to point it out on a list of results!). I have read or been told that this means the INR is difficult to maintain. I agree that eating and drinking do not have a big impact but I reckon hormones do. I'm 47 and perimenopausal.
Concentration levels and aches and pains are in the autoimmune bucket of course but I never think they get as much attention as they should....as far as my experience is concerned, I usually hear the words depression, inflammation or fibromyalgia but no one ever seems to offer that much help. I suppose understanding the vagueness of autoimmune is a key factor. Often we don't get a logical explanation for how we are feeling but it helps to have some grip on the situation doesn't it!
I've just been through a particularly bad inflammatory something (ended up in A&E one day) but I'm none the wiser. Rest and relaxation seems to be the best thing (not easy with in a busy family) but then again, we need a bit of exercise to help the circulation.... I don't know about you, but I feel obsessed at times...always want to know why I am having symptoms etc.. but it is that sort of condition isn't it!?
I agree with MaryF that we need a 'listening' team to hand. I've said this before but I think this condition qualifies for a specialist care team around the country (e.g. Hughes' nurse etc...) so that we can have quick access to an understanding 'ear'.
Regarding concentration levels etc, my previous boss was a particularly thoughtless GP climbing the echelons of the NHS and he even reported me to the powers that be suggesting I should have a memory test as he didn't think I could cope with the work. Of course, the results were fine, but thinking back and reading some notes I made at the time, I now realise this was in fact a 'lupus flare'.
This also probably explains why one GP back in the 90's treating me for migraines, put me on an anti-depressant, which of course I am now addicted to. I'm not going to go into all that history, but needless to say I believe I have had APS for many many years, with little or no detection by the medical profession. It is only really latterly that logical explanation comes forward and, yes, having a name to put to how one feels really does help, albeit minimally.
I realise that I am probably more fortunate than a lot of sufferers but wish, like you, there was a specialist care team nearby that I could discuss all my various symptoms to. Some are so mild I don't want to pester the GP, others come and go like summer, but nonetheless it would be helpful to all APS/Hughes/Lupus/Autoimmune sufferers.
May I please thank all those who have responded so speedily to my enquiry. ALL your information is most helpful to me, and I really appreciate your time and recommendations.
I have been living in Bristol for the past 10 years or so, but am contemplating moving to the Reading area in about 6 months. I do think that expert/specialist advice/information is one of the most important parts of any disease, whilst GPs, for the most part, do their level best, my experience is that they would rather treat you and receive the financial feedback from that, rather than refer you to a specialist in the field. That being said, with the various policies abounding for NHS treatments these days, is it any wonder we, the patients, don't appear to be getting a very good deal at the moment.
Anyway, not the place for a rant, so once again, Many Thanks to you ALL.
Noone has queried whether or not SLE and APS are illnesses that are covered, it is just a case of whether or not you can do your job with your diagnosed illnesses. The RCN rep is helping me with my retirement application and they are very supportive. Lupus is a recognised illness under the disability discrimination act so they cannot really refuse to recognise it.
Hi Sue, I also work for the nhs my pension is in its 28th year I have hughes since 1990 fibromyalgia dx since last year. I've had failed return to work after dx of fibro with hughes issues returned in Nov to my ward post but been ill since Feb 16th. Occ health being supportive now under neurologist for tia events but all that's been said so far is the stress of ward work I need to be redeployed from.
All then was said was if no suitable post at time of looking for redeployment a position can't be made for me but being pensioned off not mentioned. Did you approach your union first or was it a supported route from occ health team? I think your gp can also sign the paperwork? How did you start the process? Kathy xx
I live in Midsomer Norton, so not far from Bristol.
I was diagnosed with APS in 2002 and have been well, generally, on Warfarin - apart from a clot in my hip in 2006 - but since last summer I have been suffering from further 'funny turns' and other problems. I self tested and self managed my INR, which was sometimes stable but sometimes would do its own thing, up or down, for no good reason. Having seen Prof Hughes again in februsary I have now stopped Warfarin and am self injecting Fragmin (Low Molecular Weight Heparin). My 'funny turns' have not improved but my brain has felt less foggy and Fragmin requires no blood tests and is totally unaffected by what one eats or drinks. The dose needs to be calculated on your body weight, my dose is 15,0000IU per day.
Hi Ann, my INR target is 2.5/3.0. Yours? At this moment in time, I think something else is going on with my body too! Apart from the growth on my right-sided thyroid, my back, abdomen, ribs, knees, elbows and fingers are aching like nothing I've felt before. Just had a result back from blood test that Plasma Viscosity is above normal. I'm seeing ENT specialist Monday re thyroid growth and hope that by then I can at least walk upright instead of hobbling round like a little old lady! Good job my daughter is coming so she can be extra pair of ears and take notes.
By the way, she and I are attending the National HSF Patients' Day at St Thomas' on Wednesday (16th). If you're going perhaps we could meet up?
Hi shutah good luck for Monday. I was having a dreadful time last year as you are describing now. That's an ongoing problem is having over lapping & co existing conditions it seems all under the one umbrella auto immune! Prior to developing other symptoms I manage my aps well for 2 decades before flu trigger off an erray of symptoms now my inrs are all over the place leading to further symptoms from either being to high or low to add to the basket of symptoms
When all this was happening my target was 2-3 now I get symptoms when am over 3! Aspirin was added in Feb ... my inr target is 3.5-4. I can relate to what you say re symptoms even as a nurse I tend not to mention all my symptoms I now write a diary as i also forget to say about them when asked & sods law having a good day when i been waiting months for a review I then forget I poorly I have been so not to paint a picture of being someone that moans I play down my symptoms! Then kick myself after so now hubby comes with me as will chip in if he feels I'm doing that
I was dx with fibromyalgia there is interesting work by Dr Lowe who believes the condition fibro can mean a cross over with thyroid problems adrenal problems. With the complexity of our condition who knows what other antibodies we could have floating around our bodies attacking our organs.. im still in the motions of getting to the bottom of my symptoms as a gp decided to treat me as depressed but i refused to add more chemicals to my body which then can be used as a reason for symptoms!
I'm going on the 16th not been before to any event so looking forward to meeting people from this forum & listening to the experts Kathy xx
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