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Other Platelet Disorders

TOPIC: Newly diagnosed w/SLE+ITP

Newly diagnosed w/SLE+ITP 2 years 8 months ago #55613

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Sandy - the 'puffy' is caused by water retention and muscle redistribution. Prednisone does that. Try to cut back on salt and sugar. You will lose that as the dose goes down.

I realized that my Dr and I were not communicating. I figured out that she was pushing Imuran so that I would try to lower my steroid dosage. We compromised. I agreed to try to taper by 1 mg every few months if she didn't force another drug on me. We left it there.

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Newly diagnosed w/SLE+ITP 2 years 2 months ago #58559

  • Binstead
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Hi All - I'm a newbie here. I just wanted to reach out to people in the same boat as me. I had not idea that there were people like me who have ITP and Lupus. My story is one of hope and my aim in posting here is to hopefully give anyone feeling overwhelmed a little sunshine and happiness.
I was diagnosed with ITP at 16 (I am now 45). My symptoms were fatigue, bruising and feeling constantly sad (I now know this was depression). I could literally sleep all night and then sleep again all day. After many tests including a bone marrow biopsy I was put on Prednisone, my blood tested weekly or fortnightly and then slowly weaned off the Prednisone. This would have been in 1988. My platelet level dropped as the steriod level dropped. I had my spleen removed early in 1989.
It was 10 years later when I developed lumps on my upper arms. After a biopsy it was discovered they were panniculitis and I was referred to a Rheumotologist. I was diagnosed with Lupus not long after. I had recently become engaged so it was pretty traumatic. I recall also being told that my changes of having children were low.
I spent some time on Plaquinil and when we decided to try for children I was taken off. I have since had two children (now 16 and 12). They are both clear and I am medication free. I always try to get a good night's sleep, regular exercise, lots of water and try very hard to maintain a healthy weight. I appreciate I am very lucky and that not everyone has the same story however I hope for those of you younger than me that my story does give you hope. I have always tried to maintain a positive outlook in regards to my illnesses.
I wish you all the very best with your health :-)

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