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dropping hemoglobin when platelets drop

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41480 by dru
Im not sure either. But, I would think that there would have to be some increase in production with AIHA.

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  • 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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11 years 11 months ago #41482 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
By the time we're done with this thr4ead, I may know more about AIHA than I ever did. I'll have to look that up. I'm too darn curious for my own good.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41484 by dru
Yes, it drives me crazy when I cant find the answers. I did find a good article on types of anemia, it mentioned that 5 to 10 percent of hemolytic anemias are coombs negative. It talked about many of the blood tests Im familiar with but did not talk about bone marrow testing though.

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  • pam_dayton@hotmail.com
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11 years 11 months ago #41487 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
Dru: do you have the link to that anemia article? I would love to read it.

Sandi: it's great that you want to learn and then get to share it here!!

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago - 11 years 11 months ago #41503 by dru
This was the hemolytic anemia article I was talking about....

Emedicine.medscape.com/article/201066-overview



It is pretty clinical...we may need Sandi to translate it :).


How are you doing? Any improvement in counts?

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  • pam_dayton@hotmail.com
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11 years 11 months ago #41520 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
Thanks for the article! Counts going up!!! plt=28, hgb=11!! I had my 4th and last rituximab this morning; he cut me down to 30 gm of pred; just hope it holds; it is amazing how in tuned I am with my body right now. Last time this happened to me, I noticed that I started getting hot flashes when my counts were going up. It also happened this time.

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11 years 11 months ago #41523 by Ann
That's interesting. I get hot flushes when my count is on the way down. Heat regulation problems mean autonomic dysfunction which does occur with autoimmune disorders although nobody as yet knows why. Oh yes, as does fatigue and I am of the opinion that the fatigue of ITP is probably an autonomic problem rather than a serotonin problem which is the theory that some favour.

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  • 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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11 years 11 months ago #41528 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
My body thermostat is seriously off and I never connected that to an autonomic dysfunction, even though I have had other autonomic problems. I'll have to look into that more. My intolerance to heat/cold is so severe that it keeps me from going places.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41529 by dru
Pam,

So glad to hear your counts going up for plt and hemoglobin! You must feel relieved.

Hot flashes were my first symptom of hemolytic anemia back in 1999. I never had one before that. I went on estrogen because of them and stayed on low dose for 10 years with hema doc very much disapproving. I went off and gets lots when my counts go down like 2 per hour. Now when counts stable get 8 or 10 daily.

Sandi- my body thermostat really off too. In winter i get bad raynauds, but what is really bad is overheated rooms... I get flushed and hot and have to go outside to cool down.
I avoid going outside in the summer heat which is sad as we leave near a nice ocean beach.

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  • 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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11 years 11 months ago - 11 years 11 months ago #41530 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
Dru:

It is an awful problem, isn't it? I can be freezing and sweating at the same time. My hands and feet will feel ice cold, I'll have the chill/feverish feeling, have burning skin/parensthesis from being cold, but still have sweat pouring off of my head.

If I am in the car, I have to keep switching from heat to air conditioning for a 15 minute drive. My body keeps changing. I went to a butterfly exhibit last week with a friend and we were taking pictures. She kept telling me how hot she was, but didn't break a sweat. My clothes were literally soaked and sticking to me and my make-up dripped all over my shirt. My hair was also dripping. No one can take me anywhere!

I can handle the beach as long as I am near the water and can keep getting wet.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41532 by dru
Sandi,

Im like that too. I keep wondering if it is from being on so much prednisone, I guess I would like to blame it on that.

Going in the water is not always so great here in MA, the water is so cold that my hands and feet turn purple.

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  • 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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11 years 11 months ago #41533 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
It could be Prednisone or autoimmune related, I don't know.

I was talking about the beach in NC, I guess there is a huge difference!

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  • pam_dayton@hotmail.com
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11 years 11 months ago #41545 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
wow very interesting. I have always had a "very narrow internal thermostat" as my husband calls it; either too cold or too hot

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