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Looking for advice 2 years 10 months ago #68347

  • acosta02151
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Have been under the care of a hematologist at MGH Boston since September, 2018. At that time, my platelet count was 70. I have been tested and retested for just about everything possible and had a bone marrow biopsy in January of 2019. There are no answers. Because I am not showing symptoms other than joint pain and slight fatigue, the doctor has taken a watch approach. My platelets are now 47. Is a drop over 16 months of 23,000 considered stable and would you recommend I get a second opinion?

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Looking for advice 2 years 10 months ago #68354

  • JJ
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If you've got joint pains you might want to get tested for lupus, Sjogrens and APS because they often go along with ITP. It's usual for the platelet count to fluctuate with ITP and it's really just watching to see if the count falls low enough to treat. When you start having spontaneous purple bruises, it's time to get tested again to see where you are. If that never happens, all well and good.
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Looking for advice 2 years 10 months ago #68355

  • acosta02151
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Thanks for your response. I’ve been tested for Lupis, RA, and even sent to a rheumatologist who said I don’t have any of the classic autoimmune diseases. My hematologist keeps testing my anti-cardio lip in because it was highly elevated in 2018, but although still out of the
normal range, the number has dropped from 43 to 24.

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Looking for advice 2 years 10 months ago #68356

  • MelA
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acosta you say joint pain - every joint in your body? wrist/s? arm/s? knee/s? ankle/s?
Where is this pain?

If you feel you want another opinion by all means get one!

JJ I got a platelet count just because I had a feeling my count had gone down, no purple bruises just a "feeling" & my count had gone way down and I treated with WinRho - ones count can decrease without symptoms. So I always say - when in doubt check it out!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Looking for advice 2 years 10 months ago #68357

  • acosta02151
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Thanks for responding. I have joint pain in my wrists, hips, feet and ankle. I am a runner and am 70 years old, but have managed to stay competitive by eating right, doing mobility stretches, and taking supplements. This illness is frustrating as you all know; I am very lucky that I have not needed to be treated. I wish there was an answer....... I am currently recuperating from a sinus infection an the flu- a double whammy. My body is taking a long time to feel better, so I have been laying low the last two weeks. Doctor scheduled blood work for 12 weeks.

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Looking for advice 2 years 10 months ago #68358

  • MelA
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Any chance the joint pain is osteoarthritis? Are you wearing good shoes for running?
Sorry you have been ill - did the doctor say what strain of flu you have?
Hope you feel well real soon!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Looking for advice 2 years 9 months ago #68544

  • acosta02151
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Yes, my rheumatologist said that I had it.

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Looking for advice 2 years 9 months ago #68545

  • MelA
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Your rheumatologist said you had the flu? You don't know for sure without a test.
A dear friend recently was tested and she was Flu A - put on tamiflu.
Or did your rheumatologist say you had osteoarthritis?

Hope you are feeling better now!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Looking for advice 2 years 9 months ago #68546

  • acosta02151
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So sorry about that confusing response. My rheumatologist said I had osteoarthritis. I have great running shoes, lots of cushion and responsiveness.
In January, I got an upper respiratory infection. The internist said I had a sinus infection, but three days later and taking antibiotics, my temperature was 102.5. I assume it was the flu, but I did not go back to the doctor's office.
I'm feeling much better now.

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Looking for advice 2 years 8 months ago #68667

  • Hal9000
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acosta, are you aware that ITP doesn't have to be secondary to another condition? AFAIK, ITP is more often than not, a primary condition.

Curious, do you recall what your ANA test result was? It would be numbers like '1:40', or '1:320', or '1:1280'. Something like that.

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Looking for advice 2 years 8 months ago #68674

  • acosta02151
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Hi Hal,
Yes, I am aware of primary ITP. My doctor is hesitant to diagnose me as I TP because I also have macrocytosis which is enlarged red blood cells. I am scheduled for molecular testing soon. This test will look at chromosomes and DNA. I have had two ANA tests. In September 2018 it was positive T 1:40 and 1:160. My rheumatologist tested in May 2019 and it was positive at 1:40. She was not concerned

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Looking for advice 2 years 8 months ago #68710

  • Hal9000
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Ok.
I was going to guess the ANA wasn't elevated. My ANA is 1:80, aka 'borderline' or not high. As I understand, ANA is related to EBV activity. See the second link in the follow post.
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30381-diagnosed-and-nervous.html#66899

So a high ANA would be good/strong evidence for an EBV driven auto immune disease. Similarly, a low ANA would be evidence for the absence of an EBV driven auto immune disease. With that, if your ITP is auto immune, it does't appear to be EBV driven. Still no answers...

Has your doctor ever mentioned Evans Syndrome as a possibility? See this post about macrocytosis by Rob16:
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/29213-diagnosed-in-may-no-response-to-prednisone-or-ivig.html#54853

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