Hi been reffered to a haematologist by my rheumatologist ,ive got polyglandular auto immune failure.Rhuematologist suspects APS,hughes .

[mickt]

I've type 1 diabetes ,addisons disease,Large vessel vasculitis .Giant cell artiritis and pmr.also vitiligo .My rheumatologist suspected aps a few months ago .Im on high dose of steroids prednisolone been on them for 6 mth now ive had 2 relapses which involved my eyesight double vision .I've been getting chemo to suppress my immune system but had more double vision since finished chemo 5 weeks ago.Saw consultant he is reffering me to haematologist as he suspects APS he mentioned warfarin.Im on aspirin and clopiderol at present .Im waiting to hear from hospital.It looks like ill may haveanother one to add to my extensive list of medications. I was hoping to here that aps does not cause fatigue ,but a lot on this forum suffer from it,mine has got progressively worse .Hoping for a balance of meds ,these autoimmune conditions tire us out I think no cure just management.Ive been off work for over 6 months now im only 50 yr old ,saw occ hth doc yesterday ,ill health retirement was mentioned ,if I cant be found some lighter duties im a manual worker ,got no strength or stamina with all this going on.Be glad to get any advice from folk on Hughes syndrome APS as it looks like im going to a regular on this forum too.All the best mick t

[MaryF Administrator]

Hi there, I am so glad that you appear to have a true medical detective, getting to the bottom of your problems, it is really common for people with Hughes - APS to have thryoid issues and often Sjogrens Disease. Many people do very well on Plaquenil for the fatigue, and also find if their blood is correctly thinned it does help with the tiredness. Please keep using the forum as some other members on here have similar profiles and will be able to offer their own experiences. Best of luck, also our charity website has a list of practitoners across the UK who understand APS in case your team is interested! Let us know if you need further help or to be sent any links or articles. Mary F x

[mickt]

Thank you Mary I will bear your info in mind .Yes the team in the freeman hospital Newcastle have been great with me .I realise im lucky in that respect compared to some people on here.They have told me im a complex case with all my ailments .You could send me some links on aps if you don't mind,much appreciated.Mickt

[Lure2]

Hallo again Mickt,

There are two books you can read. Pocket and not expensive and very good! ; Kay Thackray "Sticky Blood Expained" and "More Sticky Blood" (number 2 also the same author). Stay on and keep us informed.

My very best to you from Kerstin in Stockholm

[mickt]

Thank you Kerstin

[GinaD]

Sorry to hear your story. But --very good on your " let's roll up the sleeves and get to work" attitude. Remaining constructive is often the secret ingredient when it comes to living with chronic illness.

[mickt]

Got to keep on keeping on I suppose ,but with chronic illness and im an expert believe me ,you can only do what your body lets you at any given time.I try and stay positive largely but myself and my loved ones have had our moments .Ive a great family and my wife is my angel,she is great with all the worry about work finances etc.I hope for light at the end of the tunnel as do we all.

[rlupus]

Hi i am so glad you have joined the forum, i felt quite alone for sometime until i started using this site its very useful and get a lot of support from others, I am a very complex case to i have several illnesses and i have APS i take a very high dose of warfarin 50mg daily and my INR level is always all over the place it will not stay stable i spend a lot of time in and out of hospital as i have to have IV Heparin as i am allergic to sub cut injections. ALso i have chronic obstructive airways disease a long with lupus, I can no longer work either . I have to keep positive and keep fighting this awful illness.

I hope they sort you out keep well x