I don't feel so isolated

Hi All

I was diagnosed with lupus 19 years ago, I spent 2 months in Bristol Royal Infirmary where It was confirmed I had lupus. During that time I couldn't walk; couldn't eat and had to be given anti-sickness injections; had a heart murmur due to severe anaemia; approximately 85% of my hair fell out; raging temperatures every 4 - 6 hours; thrush of the mouth and cold sores that wouldn't heal and a rash over my hands and legs (but not my face), and severe depression. It took 3 weeks for them to actually confirm it was lupus, my medication up until then had only been paracetamol to control my temperature. When it was confirmed, I had infusions of large doses of steroids, as well as oral steroids and 2 blood transfusions. I also developed a DVT and had to have a heparin infusion, at same time my consultant also prescribed a small daily dose of aspirin (something that is not normally taken with an anti-coagulant); the drug azathioprine, an anti-depressant called thyridozine and warfarin.

Over the next 6 - 8 months I was gradually weaned off the azathioprine, thyridozine and the warfarin.and I became pregnant with my first child. I had a good pregnancy thanks to the steroids and the aspirin and my son was born very healthy. Just had to have a steroid infusion during labour to help me as I'd taken steroids through the pregnancy.

I continued not to have any flare ups and so was weaned off the steroids, and became pregnant for a second time, resulting in a healthy daughter, this time all I'd taken was the aspirin.

I have been so lucky as I was told I was one of the worse cases at the time, that they'd seen, when I was admitted to hospital but I've had no serious flare up to worry me.

Now 19 years later I am having my first major flare up, and as I'd almost taken my illness for granted, I am so glad that there are sites like this one.

3 Replies

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  • Wow, you have been through it! I am so glad that you have 2 children, something I have never had the pleasure of due to SLE and Gynae issues........ You are not alot, something I personally have to remind myself of regularily - keep fighting and you will come out of this flare. Gentle hugs

  • Hi Gloshette

    Thanks for your hugs and support. I am so sorry that you haven't been able to have children. Mine have been a great support to me - 9 years ago their dad was diagnosed with terminal cancer and passed away a year later (they were 9 and 6 at the time). Since then, both my parents passed away within 5 months of one another. I met someone else and remarried, suffered domestic abuse and divorced him.

    Through all that stress I was so lucky to only suffer very mild flare ups, but just as I'm getting my life back, it seems that lupus wants to remind that it's payback now. I do believe that what doesn't kill us makes us stronger! I'm certainly a better person than I was 19 years ago. Hugs to you too.

  • A very inspirational story thank you for sharing it with us and as you probably know that thanks to this site we can talk about all this sort of stuff safely without fear of ridicule or similar. All the best,

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