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Anyone ever heard of a zero blood count?

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9 years 11 months ago #51708 by megmishu
Anyone ever heard of a zero blood count? was created by megmishu
I was dx'd with ITP one week ago Monday and was told my number was zero. I was immediately put on 100mg prednisone and started IVIg Tuesday. I had a bone marrow biopsy done on Wednesday and have had two full doses of IVIg so far. my next appt. will be to discuss the results of the biopsy and my number from the infusions to see what happens next.

This has all been quite a shock. I am in a small town in Maine USA and hope they know what they are doing. was told the homotologist/oncologist is the best but my case seems very unusual and wondered how many people have been told that they have no platelets....zero. still trying to learn all I can but there is a lot to learn.

thanks for any info
  • 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 11 months ago #51709 by Sandi
Replied by Sandi on topic Anyone ever heard of a zero blood count?
Yes, it happens. My lowest recorded was 3 but it's so close to 0 that it doesn't matter much. Anything below 5 is pretty much the same.

Did your counts go up at all from any of the treatments?
The following user(s) said Thank You: megmishu
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9 years 11 months ago #51716 by megmishu
Replied by megmishu on topic Anyone ever heard of a zero blood count?
Thanks, Sandi. I was a bit confused about the numbers used on this site. when someone mentions 10, 20, 50 etc. I did not know if that meant 10k, 20k, or 50k or that they were using the actually number of 10, 20, 50. still trying to figure this out.

After my first infusion, which was half a dose plus, the first dose of 100mg of prednisone...the count did not budge.

I am going for blood work today. my next appointment is Thursday this week to discuss biopsy and blood count to see where I stand after (2) full IVIg infusions and a week of 100mg of prednisone.

So...I guess I wait for results on Thursday and go from there.

A lot to learn and think about. Glad to have found this forum. Lots of info here.
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9 years 11 months ago #51717 by Ann
Replied by Ann on topic Anyone ever heard of a zero blood count?
Platelets are measured in thousands per microlitre, so 10 would be 10,000 per microlitre. Most drop the zeros so we just talk of 10 or 3 or whatever.

I've never had a count of zero but have had 1 many times but zero is not so uncommon. Different treatments work for different people, there is no treatment that works for everyone so don't worry if your count doesn't go up with the first things you try. Prednisone can also take a few weeks to show a change so they shouldn't rush into other treatments too quickly.

Good luck and let us know how you get on today. I looked it up, it's about 4 am over there so I see the steroid is keeping you awake. That's normal.
The following user(s) said Thank You: megmishu
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9 years 11 months ago #51721 by megmishu
Replied by megmishu on topic Anyone ever heard of a zero blood count?
Thanks Ann. just trying to figure this out. I will keep you posted and yes, the prednisone is keeping me awake. Good thing I guess...lots to do.
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9 years 11 months ago #51747 by megmishu
Replied by megmishu on topic Anyone ever heard of a zero blood count?
had blood work 10/27/2015

my number went up to 5 -- prednisone and IVIG did not work so on to the next. went back to get all vaccines before starting rituxan in 2 weeks. Getting vaccines in case I need a splenectomy within the next year but still last resort.

Because the first two treatments did not work they have renamed it "refractory ITP"...still gotta look that one up but I have two weeks to think about it while waiting for my next treatment.

Good News!! Biopsy was normal...so that is not the problem.

That is what I know so far. Now, I must find out what it all means. :)
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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9 years 11 months ago #51748 by midwest6708
Replied by midwest6708 on topic Anyone ever heard of a zero blood count?

megmishu wrote: That is what I know so far. Now, I must find out what it all means. :)


To do that, start clicking on all those hot purple tabs at the top of the page. They're chock full of all sorts of facts you need to know.

Sorry to hear the treatments so far haven't helped. Most people eventually find something that works without having to resort to splenectomy. Just so you know.
The following user(s) said Thank You: megmishu
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9 years 11 months ago #51749 by alisonp
Replied by alisonp on topic Anyone ever heard of a zero blood count?
I am not 100% about this but doesn't rituximab wipe out at least some immunity that you have got through illness or immunisation - so getting the immunisations you need for a splenectomy immediately prior to rituximab might not work very effectively.
  • 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 11 months ago - 9 years 11 months ago #51750 by Sandi
Replied by Sandi on topic Anyone ever heard of a zero blood count?
Yes, Alison is right. Vaccines do not generally provide adequate protection if Rituxan is used. It can take 6 to 12 months for the immune system to recover enough for the vaccines to be effective. It amazes me how many doctors do not know that. It might make a bit of a difference getting the vaccines prior to Rituxan rather than after, but maybe not much.

Immune responses to these vaccines may be impaired in patients who have previously been exposed to rituximab because of its effect on antibody-producing cells. This raises particular concerns for ITP patients who have received rituximab and who eventually require splenectomy since the protection from pre-splenectomy vaccines may be compromised.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3773242/

I'm glad splenectomy is being considered as a last resort. You still have other things to try first and may have better luck with N-Plate or Promacta. I'm sort of hung up on the words 'require splenectomy' in this article because they are rarely ever 'required'. N-Plate and Promacta have much better success rates according to data so far.
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9 years 11 months ago #51752 by megmishu
Replied by megmishu on topic Anyone ever heard of a zero blood count?
I was told the vaccines will need a good two weeks to take hold "before" starting rituximab so that is why I am waiting two weeks to start the infusions. as I understand, after I start rituximab my immune system will be wiped out and they want to make sure I have all the vaccines just in case the rituximab does not work and I end up with a splenectomy a year or so down the road.

I am trying to comprehend all the information...I am pleased that my hematologist consulted a colleague,who works exclusively with blood disorders, and agreed on the course of treatment. so, I kinda got a second opinion already. hope it doesn't take too long to find the fix. until then...I will stay away from sharp, pointy objects! haha
  • 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 11 months ago #51755 by Sandi
Replied by Sandi on topic Anyone ever heard of a zero blood count?
Rituxan doesn't exactly wipe out the entire immune system. There are still other parts of the immune system that work quite well, such as the spleen and lymph nodes. It destroys B cells and T cells, which are lymphocytes that fight infection. B Cells are also the 'memory cells' that remember past infections and immunizations so that you don't get the illness again. That is what is destroyed by Rituxan and the reason why vaccines don't hold. However, Rituxan does not wipe out the baby B cells which also have that memory, so they do regenerate in time. One or to of the vaccines re only good for a year, so if you wait that long you'd have to get them again.

I know that there is a lot to learn. You'll get there. It's good that your Hemo is consulting with someone else.

How are your symptoms through it all?
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9 years 11 months ago #51756 by megmishu
Replied by megmishu on topic Anyone ever heard of a zero blood count?
Thanks Sandi. everyday is different. New bruises, petechia -- today I woke early this morning with blisters in my mouth and on my tongue. Very painful. usually they come and go but the past 2 days have been nasty. the taste of blood running down the back of my throat is disgusting. but hey, if that is my only complaint I guess I am doing ok.

what can I do to lessen the pain of these blisters? at first they did not bother me -- they were just in the way -- but now they are sore. warm salt water rinse? ice? what? tips anyone? yuck!
  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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9 years 11 months ago #51757 by midwest6708
Replied by midwest6708 on topic Anyone ever heard of a zero blood count?
Cold salt water rinses do relieve the discomfort when I get them.
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9 years 11 months ago #51758 by Winnifred
Replied by Winnifred on topic Anyone ever heard of a zero blood count?
Megmishu Here's hoping they get your count up soon. Being at zero feels pretty yucky!
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