Confusion of being told my lupus has 'disappeared' because I'm nearing 60 years of age

I apologise for this long post thank you for taking the time to read it.

I am at a loss because I've always been led to believe that SLE is incurable and that symptoms are managed with medication.

I was diagnosed with MS in 2000 and in 2001 my neurologist thought I had something more going on than just MS so he referred me to see Dr Graham Hughes' Lupus team down in St Thomas' hospital in London and I was diagnosed and treated by Consultant Rheumatologist Dr David D'Cruz.

In January 2002 after admission into St Thomas' hospital i was diagnosed with CNS Systemic Lupus Erythematosus, Positive Lupus Anticoagulant, Transverse Myelitis with high intensity signals in the brain and spinal cord on MRI and secondary Sjögren's Syndrome.

I was given cyclophosphamide infusions in 2002 and I felt the benefit and was able to take my first steps and my body started to defrost after being paralysed from the neck down.

On a further admission into St Thomas' in 2003 after another attack of right sided parasthesia I had more Cyclophosphamide infusions for another 3 months and was prescribed Methotrexate which I still take. On Discharge from St Thomas' hospital this time my diagnosis had changed to MS secondary to the Antiphospholipid Syndrome, CNS SLE and a Demyelinating Disease. In 2011 I had another CNS and Myelitis flare up and St Thomas' asked my local MS Clinic to arrange Rituximab infusions which I had in 2012 followed by a weekly dose of 20mg Methotrexate. Since the summer of 2014 the Lupus has been in semi-remission. In that last few years things have changed at St Thomas' hospital in London and my consultant left for a while and since then I've seen 3 different consultants and last year was transferred over to Guys hospital and saw another new consultant rheumatologist. I was told by her that because my ANA (previously positive) is negative I no longer have lupus. What I can't understand is that I have been treated for CNS SLE since 2002 and now they have decided that because I'm nearly 60 the lupus is cured. I am now really confused by this new diagnosis.

I've been approached by quite a number of other patients, previously diagnosed with SLE who have also been told they no longer have lupus and have had their medication stopped. It appears to be the same couple of consultant rheumatologists at Guys Hospital are making this decision.

I'd like to the thoughts off other lupus patients on this.......

my next appointment at Guys is beginning of November.

I don't know what to think as this would mean that my original diagnosis was incorrect and I've been taking medications unnecessarily for the last 15 years.

My APS diagnosis is also under review so it's a worrying time. I've had two previous strokes do been on warfarin since January 2002.

Thank you in advance for you answers to my post x

5 Replies

oldestnewest
  • Hi, I have heard similar comments from other patients and am now addressing this with the Lupus team at the Lupus Unit. Please leave this with me and I'll let you know when I have more information. If you want to contact me directly my e-mail is fundraising@lupus.org.uk. Thanks

  • Thank you x

  • Hi Ang

    When you have any other information about this subject please email me at hazel595@btinternet.com

  • Will do :)

  • Ange, the scenario presented by hazel595 is an extremely interesting one. Is there any possibility that professional comments could be aired on the blog? I am now 67(68 Dec) and touch wood haven't had a major flare up for about 9 years although my lungs are not very efficient. My medication is Plaquenil, Prednisolone, Thyroxin and Omeprazole.