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Possible Bone marrow bx for WBC low-2.8, Platelets 8,000 today- got IVIG

  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #60810 by Cindy1
Wanted to update you all and see if you had any input.
1. Has anyone had a bone marrow biopsy? If so was it for low WBC count and at what count? Did you get sedation?
2. On Promacta 50 mg since 8/6, Upping Promacta today to 75mg. If that dosen't help will probably get bone marrow biopsy and then dr said I need to decide if do nplate vs Rituxin. I am thinking Nplate any thoughts?
3. Stopping CDB cause I am wanting to have a true WBC count next week.
Thanks,
Cindy

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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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6 years 6 months ago - 6 years 6 months ago #60814 by Sandi
Cindy - I had a bone marrow biopsy. My doctor did it in his office. It took about 20 minutes, no sedation. It sounds worse than it is. First I got an injection to numb the skin, then got an injection to numb the muscle. When he did the actual bone marrow draw, I felt like I got zapped but by the time my brain registered it, it was over. I left with a band-aid on my butt. I was sore for a few days, but just did my normal thing....work, run kid around....

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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6 years 6 months ago #60817 by mrsb04
I'd rather have a bone marrow biopsy then a filling. Nowhere near as unpleasant.

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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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6 years 6 months ago #60820 by Sandi
Same here, Mrs B. I can't stand the dentist!

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #60821 by Cindy1
Thanks that is reassuring! Do you remember what your wbcs were when they decided you needed a bmb?

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #60822 by Cindy1
That is good news, I was nervous!
Why did they do your BMB. Low WBC?

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #60823 by Cindy1
I was really nervous. When I was a brand new nurse, I saw one done 35 years ago and it looked horrible! I guess things have improved. That was so helpful!

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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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6 years 6 months ago #60824 by Sandi
As far as I know. my WBC was in normal range.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 6 months ago - 6 years 6 months ago #60826 by Hal9000
Recall that a ITP diagnosis is a process of elimination. A bone marrow examination is the elimination of bone cancer and MDS . Supposedly if one has an IVIG response then MDS is already eliminated. Those that have MDS don't respond to IVIG.

For me, that side of my, ahhh, buttocks hurt for a couple of weeks to sit on. Literally, a BMB is a real pain in the as.

75mg Promacta? WELL ITS ABOUT TIME !

Thinking about what to do if Promacta fails is good planning. As for Rituxan, since you seem to have a steroid (and IVIG) response, that seems plausible. As I and others will point out (coughSandicough) there are significant cautions with it. If you go onto Nplate getting to a stable count is a bit of a question mark if emergency IVIG treatments enter the picture.

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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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6 years 6 months ago #60828 by Sandi
Cindy, why are you worried about WBC's all of a sudden?

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #60836 by Cindy1
When I was at Mayo 8/28 my WBC were 1.8 so he said to keep an eye on them. The last count 9/21 was 2.8. But on 9/8 it was 7.6.
It is all so confusing to me. I tried to google what parameters indicate a bone marrow bx with little success.
Have a good Sunday!

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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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6 years 6 months ago #60837 by Sandi
Cindy - having a bone marrow biopsy is usually a doctor preference. I had one because my doctor suggested it, but if I had known then what I know now, I would have said no.

With ITP, protocol states that a bone marrow biopsy should be done if a patient is over 60, if they do not respond to treatment and sometimes prior to splenectomy. If other counts are abnormal (reds and whites), that is also cause to consider a BMB.

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #60874 by Cindy1
Hi,
I just thought to cut and paste so you could see all my numbers today. They are wanting to schedule a BMB.
Here are my questions...
1. Platelets only went from 8,000 Friday to 15,000 today. All I got Friday was IVIG. Do you have any thoughts on what could be causing the slow climb?
2. How does IVIG effect bllod numbers? MY WBC were down from 2.8 Friday. Could that be due to IVIG Friday because that is just what happened when I went to Mayo? IVIG Friday and 1.8 WBC Monday.
3. Do you think doctors need to do the BMB? They have nurse practioners and PAs doing them.

Todays LABS in case it is helpful to you.
White Blood Cell Count 1.8 10*9/L 4.0 - 11.1 10*9/L
Red Blood Cell Count 4.51 10*12/L 4.18 - 5.64 10*12/L
Hemoglobin 12.9 g/dL 12.1 - 16.3 g/dL
Hematocrit 39.0 % 35.7 - 46.7 %
Mean Corpuscular Volume 86.5 fL 80.0 - 100.0 fL
Mean Corpuscular Hemoglobin 28.6 pg 27.5 - 35.1 pg
Mean Corpuscular Hemoglobin Concentration 33.1 g/dL 32.0 - 36.0 g/dL
Platelet Count 15 10*9/L 150 - 400 10*9/L
Red Cell Distribution Width CV 13.3 % 11.7 - 14.2 %
Segmented Neutrophil Percent 32.3 % %
Lymphocyte Percent 40.9 % %
Monocytes Percent 22.2 % %
Eosinophils Percent 2.3 % %
Basophils Percent 2.3 % %
Immature Granulocytes Percent 0.0 % %
Neutrophils Absolute 0.6 10*9/L 1.8 - 6.6 10*9/L
Lymphocyte Absolute 0.7 10*9/L 1.0 - 4.8 10*9/L
Monocytes Absolute 0.4 10*9/L 0.2 - 0.9 10*9/L
Eosinophils Absolute 0.0 10*9/L 0.0 - 0.4 10*9/L
Basophils Absolute 0.0 10*9/L 0.0 - 0.2 10*9/L
Immature Granulocytes Absolute 0.0 10*9/L 0.0 - 0.05 10*9/L
Thanks for any insights.

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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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6 years 6 months ago #60878 by Sandi
Cindy:
I don't know the answers to your questions. I can only answer one. Yes, I think you should do the bone marrow biopsy if your doctor is recommending one.

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6 years 6 months ago #60962 by anon
Your neutrophils are low which is what they worry about. Low neutrophils can mean getting infections easily so avoid people with colds and viruses if you can. Good luck with the bone marrow biopsy.

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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6 years 6 months ago #61005 by Cindy1
Hi Hal,
Just rereading posts. Could you tell me what significant cautions you have with Rituxan?
Thanks,
Cindy

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  • Hal9000
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6 years 6 months ago #61010 by Hal9000
Cindy,
There is lots of info out there on the subject. Wikipedia is as good a place as any to get started. As I recall it is 'PML' and 'JC' virus that are the big threats.
en.wikipedia.org/wiki/Rituximab

But this article seems the most comprehensive and the one most capable of scaring one silly. Perhaps I'm a numbers person and it was the numbers that scared me. Lots of numbers in it. Also realize that one would want to read it from the context of treatment for ITP - it covers a lot more. As I recall the biggest take away from the article is that one doesn't want to be taking more than just Rituxan (eg steroids) when taking Rituxan.
www.iwmf.com/sites/default/files/docs/Rituximab-Associated_Infections-Seminars_in_Hematology.pdf

You might want to read through this thread on hypersensitivity reactions too, just to be fully informed.
pdsa.org/discussion-group/7-treatment-general/29710-identifying-hypersensitive-reactions-to-rituxan.html#59609

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