Shining Star

Good evening to everyone, a happy hello from a new member!

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My name is Shaista. I write a blog at http://shaistatayabali.blogspot.com
The title of the blog is Lupus in Flight, which is always my intention and my hope - to somehow find the wings to fly beyond these seemingly limited skies. Hoping to find friends and advocates here, for a better future.
I was diagnosed with SLE in 1997 and have since acquired acute steroid induced glaucoma, retinal and peripheral vasculitis, necrotizing lymphadenitis, pleural and pericardial effusions, lymphadenopathy... after several tried and failed treatments, involving steroids and chemo, I am now advocating for the combination therapy of Rituximab and Intravenous Immunoglobulins. Really interested in meeting others on similar journeys. Or just happy to make friends
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  1. astrid40's Avatar
    hello shiningstar, crumbs you have been through hell, i got pigmentation on my eyes insides through taking planquenil, an apparently rare side affect but still it happens, so i stopped that and have tried several types of chemo infusions since, now on methotrexate, and numerous other drugs including prednisolone. i was diagnosed around the same time as you and live in woking in surrey, uk. i have had three lots of pneumonia this year and have been admitted to hospital for acute anaemia, where i lost 5 pints of blood and they have no idea why this happened as i wasnt bleeding from anywhere, the doctors put it down to malabsorption and not getting the vitamens and iron i need from my food, my body seems to have a mind of its own as to how it behaves sometimes, no matter how i try to look after myself. i joked with my husband tonight when i was in agony that id be alright once i had some chocolate. its such hard work keeping our spirits up sometimes as alot of my well friends dont understand this disease and how we can look so healthy and be so ill at the same time. i keep telling them the rosy cheeks is not a sign of me being well but the rash, especially when i seem to be red hot at times with the rash. you feel like you are bashing your head against a brick wall, thats why its good to have somewhere we can go and vent our feelings without judgement because everyone else is in the same position, anyway thinking of you and others who are suffering at the moment, take care love and hugs astrid40