Sudden downturn in health

I've had APS and Lupus for years now and it's usually  pretty well managed, I take a small amount of steroids, aspirin, three different blood pressure meds and recently managed to start taking Hydroxychloroquin. All these meds have meant that I've been feeling a lot better lately, however this last few days I've been feeling dog rough, no energy at all (or if I have it's gone by lunchtime), and my ischemic attacks have really come back with a vengeance (gone from the odd one to well over 10-12 a day). The only thing that has changed is that I've gone back to work, I wasn't ill and I'm not coming down with anything (that I know of). In the past if I've felt like this I have taken a largish dose of steroids and aspirin to help boost my immune system however this time when I take it although it does work it wears off after 3-4 hours and I end up back where I started.

I cant spare the time at the minute to go see my specialist (not until next week at any rate) but I will try to get in to see my doctor tomorrow to see what my blood pressure is like. 

Anyone else gone through something similar? with a sudden relapse for no apparent reason?

14 Replies

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  • Hi there.

    Who is managing your APS?

    It sounds to me like you may need better anticoagulation.  Perhaps a trial for a couple of weeks or so of Fragmin shots (Low Molecular Heparin).  This is a technique often used by Prof Hughes and his team.  If a patient improves on this trial then they transfer the patient onto Warfarin.

    Dave

  • Currently seeing a Haemotologist, a rheumatologist and a Neurologist, all at either Wigan or Leigh hospitals in the Northwest. Had to disregard a lot of what tge Rheumy had to say at the start of seeing him as the first thing he wanted to do was to reduce my meds. Im hoping its just due to me going back to work as its been about four years.

  • Thanks Dave, I think if symptoms persist I will ask to see one of my specialists about it, hoping at the minute that it's just the extra stress of starting back to work again.

  • Take Care.

  • Could it be a cold/infection that is just starting? I tend to feel much worse. I agree with Manofmendip that it could have to do with anticoagulation. 

    I hope you feel better soon! 

    Thomas

  • I've just gotten over that really bad vomiting bug(took a week to shake that off) but otherwise I've no other symptoms. Been on steroids and aspirin for well over ten years, the only recent change has been Hydroxychloroquin (low dose),  thus has virtually stopped all the awfull back pains I was having and I was feeling a lot better until I started back to work.

  • Hi Tomcat,

    I wonder which one of those three Doctors who is a Specialist of APS and responsible for your anticoagulation and your APS?

     If the Doctors do not cooperate with eachother it is even better to have only one if he is an Expert of APS that is. 

    I think what Dave has said to you sounds very wise. If I were you I would follow his advice.

    Best wishes from Kerstin in Stockholm

  • Thank you Kerstin.

  • I'm not actually sure any of them are if I'm honest, the first time I saw the Rheumy they decided to change the meds the Haemo had put me on. After Doctor Pendry shifting specialties and leaving I've been passed from pillar to post and no one seems to care anymore, currently seeing specialists maybe once or twice a year.

  • I have been on this site for several years and read different members stories of how it is to have APS. 

    The Admins have suggested several times earlier that you should have a Specialist of APS otherwise you can not get the correct diagnoses (APS and later SLE?). Only an Exptert knows what to look for re symptoms and how to treat you. The Neurologists do not "get" what APS is about  -  too thick blood that has to be anticoagulated!!

    I wonder if you were diagnosed on symptoms or on antibodies or both? You live in England and it should not be impossible to get the right Doctor.

    Kerstin

  • Youre definitely right,  dont think it helps that with my last specialist leaving, then the new one who hardly spoke english I gave up going all together. Its only been in the last few years where I've really started to have other problems (memory and concentration, severe pains in back, shoulders etc) that I decided to go back to my doctor. Could probably do with seeing a good speacialist but Im in the middle of separating from my wife so my dsughter and I need to find somewhere new to live, also trying to find full time employment. Doesnt leave much time for anything else

  • I am very sorry to hear this. That is the tragic result of this illness besides all the symtoms with it for many of us. Were you diagnosed by symptoms or by antibodies or both?

    It is a fight really for most of us, but our life is worth it. A correct diagnose and an Expert of APS is what we need.

    Kerstin

  • Thankyou,  I was initially diagnosed after falling ill at home one night, started vomiting and didnt stop, also couldnt stand up without falling over due to extreme vertigo. Eventually an ambulance was called and I spent a week in hospital while they tried to work out what was wrong. I was onCe reffered to Dr Hughes but my  symptoms were being managed at the time so it was decided that we'd not bother as there was nothing more he coukd do for me.

  • Hi again Tom,

    I understand your difficulties. If you could in spite of all tha,  try to get a referral as your daughter also would benefit of his fathers health. You were once referred to Prof Hughes. 

    Sometimes with this illness we get worse and need stronger anticoagulation. It is not a wonder with your divorce and all that follows. Please also try to have control of your bloodpressure which is difficult just now but important . The high bloodpressure can actually also be caused by APS.

    I cross my fingers for you that you two will have a good life soon! Good Luck Tomcat!

    Kerstin 

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