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Sticky Blood-Hughes Syndrome Support
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My story with lupus, APS and it's complications

I'm a 55 yr old nurse who was diagnoses with SLE 12 yrs ago after having a stroke due to Systemic lupus erythematosus (SLE) with Cerebritis and Vasculis Treatment: Pulse steroids and cytoxin for 2 yrs

Note: Multi strokes with minimal lt sided weakness which resolved. Since then had MI with stents placed due clots, my cholesterol is super low, and 3 occurence of resp. Failure due to SLE pneumonitis, or vasculitis of the lung. Its been complicated with pulmonary hypertension, and DAH or diffuse aveloar hemmorage during my hospitalization last month. I had to be intubated for 5 days. So now on high dose steroids and cytoxin which has always helped and Rituxin to also help with the APS. Unfortunately it not responding as well I relapse so I finish taking 2nd dose 1gm of Solu Medrol which turns out to be like taking 1400 mg of prednisone. I'm tweaking tonight.

So currently I feeling great full for all my friends, family and coworkers who have literally saved my life more than once and sorry for my self because I feel so alone and I don't know what tomorrow brings.

I hope to wean off the oxygen, get my strength up and return back to work by May. I miss not Working I'm a better nurse because I'm also a patient. But I worry if im strong enough and if occurs again ( the lungs fill up in hr or so and will it happen so fast I can get help)

LIFE is a gift. It's meant to be treasured and shared.

Thank you for reading hope can help some one who also feels alone, it helped me to share

10 Replies

You have been through so much, yet you offer more, you offer support and friendship - what a lovely person you are!!

Keep up with your positive outlook, I wish you well and sending smiles and thoughts of good wishes




Thank you for all your kind words it means alot


Good on you, being on here and sharing this, I hope it makes it less daunting and lonely. I have just spent some time in hospital with my 14 year old daughter with SLE and Hughes related episodes, and I fully intend to write about it soon on here. I hope the spring sunshine combined with your friends and colleagues will lift you to a much better place and out of this current flare. Sending you positive thoughts. Mary F x


Thank you for your caring, my thoughts and prayers go out to you and Daughter


It can be very lonely. When your mind is saying get up and go, but your body says otherwise. The KEY words, are, listen to your body. When the body says NO. It means NO, as it is telling you to rest,and rest is what is needed. You have found a good site here, as we are all in the same position, and understand how you feel. xx Best wishes.


Thank you and you are right. I do have to listen to my body it's just that I hate what it's saying sometimes.


Thankyou for caring ,when you are feeling so ill,yourself no wonder you are a Nurse.

Hope you start to feel better really soon, Will be thinking of you.

Take care love Karen xx


Welcome to the group and than you for Sharing you ate not alone we all here for each other



Hi Nurse's make inpatient patients. I was off for 4 months with cardiac and respiratory problems, took myself back to work, started doing too much, well what I used to do! Now paying the consequencies. Off sick again as didn't / wouldn't listen to my body. Take it easy and don't rush back to work, wait until your body says you're ready.


Inspirational quote we all know time:

Its always darkest before the dawn.

But try (I know its hard, and in your situation I'm not sure I could take this advice:) try not to put strict time tables on your recovery. You're climbing a ladder of recovery. Slowly. One step at a time. Let your body take its time.



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