Diagnosed with Obstetric APS back in ... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Diagnosed with Obstetric APS back in 1999, is it the case once past child bearing, there is no need to refer to lupus unit for APS flares?

pamchris
pamchris

Diagnosed with Lupus/APS in 1999, then in 2007 SLE onset, after 2 years of treatment on Clopidogrel and Hydroxxychloquine, symptoms, cramps, fatigue, pain continue, suspected fibromyalgia CF/ME. New GP of 2 years refused to provide medication for Lupus/APS, only taking Clopidogrel, however had Raised D Dimer and swollen, hands, feet, constant headaches/migraines and regular falls, prescribed Prednisoane by hospital for joint problems. Requested a referral back to my Lupus unit for a review. Told this would not be necessary as my APS was linked to childbearing now I am past that age there is no need for further monitoring of APS/Lupus condition. Have not had any reviews since 2013

7 Replies
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I had a similar problem with my gp telling me they had tested for aps and in reality no such thing had been done, basically they were fobbing me off. I registered with a new gp and they couldnt have been more helpful. If you want to stay with your current gp you will have to fight to get what you need!. My history with aps started when i was pregnant, three miscarriages, low birth weight babies, pre-eclampsia, etc, etc but it went undiagnosed, however this was in the early 1990's. I continued to have symptoms well into my 50's when I was finally diagnosed, so to say you don't need treatment after child bearing years is rubbish given your symptoms.

MaryF
MaryFAdministrator

I am not happy to hear this, you clearly have symptoms and need more guidance, so either another specialist or a hard hitting letter outlining your concerns and details about your symptoms. MaryF

pamchris
pamchris in reply to MaryF

Thank you all very much for your replies and support. I am grateful for being part of a support network who are able to share their experiences, the knowledge I have gained since joining is invaluable. My problem is that I have only just jointed a new GP practice having been with one for more than 33 years, however because there was a cross contamination with my twin sisters medical records which meant I inherited her past medical history especially the negatives relating to her reaction to long term steroids for her lupus condition. I think that once this new GP heard my reasons for moving to his he just could not believe such a mistake could be made yet it did happen and the one NHS number was being used for both me and my sister. This acted to my determent and I asked my own GP to sort it out in 2010 when it came to light, then in 2015 it reared its head that the error was still continuing and my sisters medical records was being used for me.

I know I need to change GP again therefore I wanted to get my facts correct before putting a formal complaint to the relevant authorities to look into the practice of this current surgery, it would appear they are trying to same on the GP budget. I have considered a private consultation with the London Bridge clinic but finance is an issue, since I lost my job to ill health in 2007 and registered disabled it is difficult to find suitable employment. Since joining this GP they have failed to support any part of my recovery relating to the lupus/aps, fibromyalgia and gastrointestinal disorders, the only excuse I get for the continuing symptoms is that your under a lot of stress.

Fortunately I helped my twin sister through her early diagnosis of SLE from 1983 and the several relapse, research has proved helpful in knowing what flare ups look like for both sle and aps, therefore I use over the counter medication where I can and increase my Clopidogel when leg pains and cramps become severe and take myself of to A&E

Trust those who can manage the sunshine have an enjoyable day

MaryF
MaryFAdministrator in reply to pamchris

Be aware that Fibro often turns out to be Thyroid and also deficiencies related, also if you do have autoimmune thyroid problems, ie Hashimotos, with that comes, low stomach acid and also eating gluten, will make things worse. Maybe some team work with your GP and the new practice manager could sort this out, especially if you attend with your most reliable and articulate friend, neighbour, colleague or relative, it is in their interests as well as yours to refer you to a specialist off our list, (under pinned posts on the right, area by area), or on the charity website, and of course you can formally complain about the other practice and their failure to help you, you might need your MP to help you. Many of us do private thyroid testing which we order ourselves to work out what is going on and to provide more evidence for GP's and also consultants. I do this myself either as a finger prick test or a blood draw if I have a nurse friend about the place!

MaryF

Wittycjt
Wittycjt in reply to pamchris

Sometimes it just seems when we have Hughes/APS, the bad luck can just seem to follow us around...as the mishap with your records. Sorry you are having to add this to your initial problem of the APS...as that alone wasn’t problem enough.

Your right try to keep following the sun and have a prosperous day... Much hope, Cindy

pamchris
pamchris in reply to Wittycjt

Thank you all for all the advice, will take them on board, probably I am considered to sick to treat being a typical Hughes/APS patient with all the added complications like being allergic to every thing under the sun including the sun, I do have acid problems, recently diagnosed with Barretts Oesophagus . However once I get my energy back I will carry on the fight to obtain a referral back to my lupus unit.

I was labelled with obstetric APS and discharged by obstetrician on aspirin 75mg only as assumed all would disappear after the pregnancy.

Had 2 further miscarriages on aspirin under IVF clinic then advised too dangerous to continue.

7 years later I had a Transient Stroke and stroke consultants flabbergasted that I was not under an APS specialist

Immediately put onto warfarin and referred. They've now found a clot is still in my brain so not sure if causative of TIA or separate.

Please fight for the lupus consult as I might not otherwise have had the TIA if been under a specialist earlier.

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