Some positive new's i'd thought that I would share!

Hi All,

It's been a long time since I posted, due to one thing all another, but I thought I would post some GOOD NEW'S at last.

Since being diagnosed with Lupus SLE ( I have also SS and other auto immune disorders) too many to mention! - in Oct 2010. After being very ill and admitted into ITU - it has been a very long and testing time to near recovery!

I have gone from 4 blood transfusions to 10 plasma exchanges, from cancer drugs, to 120mg Intra venus sted's and 2000mg of MMF as well as many other concoctions of medications, and a kidney biopsy!

Slowly but surely my med's over the past couple of years have started to be reduced, there has been some hiccups and testing times - but I received such positive news last Thursday from my Consultant...

My Sted's have been reduced (gradually) to 2.5mg every other day until the end of Aug and then I an come off them. If all is well until I see my Consultant again in Nov - then they will reduce the MMF by 500mg to 3 x per day for 6 months etc etc.

All my full blood reports have come back positive - no active double DNA - in layman's terms the Lupus SLE is being suppressed and my immune system is behaving it's self.

I still have the SS to content with and other symptoms but these can be treated with less powerful medication.

There is no signs of lupus in my kidneys and all my organs are being protected by the MMF!!!!

I and my family have had it very tough, especially the 'fright' i gave everyone in 2010, and we are allowing ourselves to absorb and celebrate this good news!

I am not oblivious to know that Lupus SLE is a little Bas%*$@ of a disease and it can rare it's head again at any time - but after being in a very dark tunnel both physically and mentally, it's lovely to know that's there's some light at the end of the tunnel.

i want to Thank all at Lupus UK, friends that I have made on this site, friends, colleagues and fambo (and those in spirit) who I know have provided all their loving support!

and God for listening to my prayers XXX

May a cure be found soon!

Love Lulabelle xxx

7 Replies

  • Oh lulabelle that is such fab news, especially after you've had such a difficult and long road to travel. I really hope that things continue to improve for you and your family.

    Sending king thoughts to you.

  • Lovely news, and it sounds like you have had fabulous medical advice/treatment too. Great news.

  • Brilliant news!

  • Good news!!!

  • Awesome happy post xx

  • lullabelle it's great to hear from you and when it is such a positive and happy post it makes it so much better, I am really happy for you and all your family and wish you all the best for the future and hope that you keep on that upward climb and in a positive direction.

    The very best of luck to you my fellow lupie friend

    Madmagz x

  • Great news! Very happy for you ..and family. xxx :)

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