ITP

posted 36 months ago by megan31

Hi,

Has anyone been affected by ITP with their Lupus? For the past year and a half or so, I've had a roller coaster platelet count, ranging from 12,000-50,000. I've tried a lot of treatment, have a great rheumatologist and hematologist, now looking for a second opinion. But, I haven't seen anything about ITP and was hoping to hear about anyone else's experience. I started Rituxan about 6 weeks ago and am going to get a CBC tomorrow to see if the platelets have gone up at all. The only thing that is keeping my count stable is prednisone... and we all know how that goes. They are starting to discuss a splenectomy which I really don't want to do.  

Best,

Megan

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  • Vanessa

    Hey Megan

    For the past few months i have had a low platelet count and my doctors aren't sure why, naturally i have never had a high amount and have always been the average or below. Sometimes its the natural way your body is, and if the low platelet count isn't affecting you greatly then it really shouldn't be a big problem. My Lupus is under good control and I haven't had a flare for a long time, my low platelet count is the only bad result in my blood tests but if you are feeling fine you shouldn't have to change medication or have other treatment. However if your platelet count is really all over the place it must be the way Lupus is affecting you much like rashes its the way Lupus expresses its presence and activity perhaps it is developing resistence to your medication . Splenectomy treatment is to stop the spleen from destroying your platelets yet I think that you must be certain that your spleen is the exact cause of your low platelets. I would question your doctor about his certainty because there can be other ways of tackling the spleens activity some herbal products and some less strong medication can be used to control its activity. But check for sure :)

    I hope i was helpful :)

    36 months ago

  • Jayne

    Hi Megan, Before I was even diagnosed with Lupus I was diagnosed with ITP. Its the only thing they could Officially find wrong with me in lab work. I was put on a high dose of prednisone for several months which regulated it and haven't had a problem since. Well...I should say with dangerous platlet counts that it. Since then, Lupus has reared its ugly head and I've had multiple things at a time continue to go wrong because of that! I know that I also have an enlarged spleen but they told me that is quite common in people with lupus.

    35 months ago

  • michelle

    Hi I was taken to hospital with under 1,000....It was then i was diagnosed with ITP but also SLE. I had another time where it went to 4,000. I kno if i c bruising i am in need of a blood test. The steriods at 100mg seemed to work for me boosting them back up into normal range.

    29 months ago

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