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Waiting and Concerned

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9 years 1 month ago #55536 by Julier
Waiting and Concerned was created by Julier
My rheumatologist referred me to a hematologist because my platelet count was 30, my appointment is Monday. I currently am experiencing dizziness, blurred vision and sensitivity as well as fatigue. Are these normal? I was diagnosed with Lupus in 2001 my wbc is usually very low also. What can I expect?
  • 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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9 years 1 month ago #55538 by Sandi
Replied by Sandi on topic Waiting and Concerned
It's hard to tell you what to expect because all doctors are different. Some would treat at that count and some would not and might suggest monitoring you. How are your symptoms? How long have your counts been down? Some people might choose not to treat if symptoms are minimal because treatments can cause side effects.

I wouldn't say that your symptoms are normal for ITP. Some people feel fatigued when counts are down but shouldn't experience vision problems.
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9 years 1 month ago #55540 by Julier
Replied by Julier on topic Waiting and Concerned
My platlet count was normally running around 13pfor years and my doctor was fine with it because my lupus. But sometime after July it dropped from 130 to 30. I bruise very easy, I feel achy all over however that could be my lupus. I was bit by a mosquito and scratcheded causing blood speckles under the skin.. never seen that before?
  • 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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9 years 1 month ago #55543 by Sandi
Replied by Sandi on topic Waiting and Concerned
Scratching the skin with low counts can cause the small red skin dots. It's called petechiae.
The following user(s) said Thank You: Julier
9 years 1 month ago #55547 by
Replied by on topic Waiting and Concerned
That was my 1st clue - scratching causing petechiae - but of course didn't know it.
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9 years 4 days ago - 9 years 4 days ago #56210 by ectaylor
Replied by ectaylor on topic Waiting and Concerned
I have known about my low platelet count for about nine years. It became problematic about five years ago with a regular pattern of fatigue, body aches and stomach discomfort. I also have blurred vision and itchy skin and discovered petechiae on my legs.

In early September, after research on this wonderful organization's website, I printed the 25 Questions to Discuss with your Doctor. Of those 25, 13 of these describe my life. I have begun making changes in my life style based on the suggestions. I see a hematologist Wednesday and am also concerned and anxious about what happens next.
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8 years 11 months ago #56709 by Julier
Replied by Julier on topic Waiting and Concerned
I'm scheduled for IVIG on 11/29 for 3 days of treatment followed by Retuxan. My platelets have been holding between 15-30. My hope was I could possibly get by with just the IVIG but the doctor states my Lupus is severe and the Retuxan will help. Has AnYone taken this for lupus and had relief of symptoms as well as an increase in platelets.I need to have a surgery on my hand but that can't happen until my numbers come up. Oh it's always something!
  • 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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8 years 11 months ago #56710 by Sandi
Replied by Sandi on topic Waiting and Concerned
Julie:

I had Rituxan in 2003 and ended up having serum sickness from it. That is a delayed response that occurs 14 to 21 days after the first infusion. I didn't have Lupus at the time, but the Rituxan reaction triggered it and symptoms began immediately. In my case, Rituxan did the opposite. It did give me an ITP remission, but it was a horrible trade-off.
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