Got all my diagnosis now I don't think there's anything left I can have :P

Well after a clot in my left leg in November 2013 then being diagnosed with hughs after that, extensive testing due to still not feeling right and severe joint pain I attended a rheumatology appointment yesterday to be told I tested positive for both sjorgens and sle I have no idea what's ahead of me now but I have to start taking hydroxychloriquin 200mg twice a day hope there's some improvement in my condition it's all very daunting at the minute as I have no idea what this all means and no one really sits and explains anything to you at all just this is what's going on these are the meds you need to take and these are the other tests needing to be performed it doesn't feel like my feet are touching ground at the minute, just thought I'd update everyone and see if anyone else is going through this to get an insight as to what's happening :-)

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  • Hi, you could do with a good gp or specialist to sit with you to explain & answer all your questions, we can do as much as we can On here & give advice, but I personally feel you need to have it all explained by somebody in the medical profession...but one that knows Hughes syndrome....

    It's not nice when you 1st get told our diagnosis.....but with support, time & patience you can try to move on as before.....with compromises but it is possible....I have to work around mine as working for myself, I go to the gym which I feel helps my movement hugely....if we can advise you in any way just ask, take care x

  • Hi. It's good that you have a diagnosis, as not knowing what is wrong, when you are ill, is very stressful.

    As you have had a clot, are you on any anti-coagulant medication (such as Warfarin or Fragmin) or anti-platelet medication (such as Aspirin)? If not, please ask your consultant why not.

    Best wishes.

    Dave

  • Yeah dave I am currently taking warfarin though getting my bloods stabilised is a bit of a problem

  • Hi bevjane. If you are struggling with Warfarin stabilisation and you are still getting clots on Warfarin - I had a major one in my right hip when I was on it - you might like to consider asking if you can move over to Fragmin injections instead; no INR or blood tests to worry about and it is unaffected by what you eat & drink.

    Best wishes.

    Dave

  • Thank you suzy really I don't know much about any of it I was just getting my head around having hughs had read up on it thought I understood everything then these other two things get thrown into the mix and just totally confused me

  • I know it can be very daunting but at least they've put you on warfarin...that itself can be a challenge for some to be put on it to start to thin the blood so we have less chance to have a clot! sounds ridiculous but it's true, some are still being told no due to not having a 'clot' yet....but they have had symptoms & diagnosed that they have Hughes! some specialists would rather wait until we have a clot before we get put onto a blood thinner!

    Hopefully over the next few mths you'll start feeling the benefit of warfarin & find some of the answers to your questions.....believe me we've all been at this point.....

    Were all here for you & will help wherever we canx

  • You are among support and friends on here, I have SLE, Sjogrens, Hughes, Psoriatic Arthopathy and a slow Thyroid, but at least I know now. MaryF

  • Thank you all so much - are there any good links you all would recommend for information purposes?

  • Hi here is one for Sjogrens:

    nhs.uk/conditions/Sjogrens-...

    Here's one for Hughes:

    nhs.uk/conditions/hughes-sy...

    I hope it of help to you, I'm sure somebody else will come back with more links of use to you too, I will continue to look myself too x

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