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DVT and PE's low counts and blood thinners

  • April_n_John
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  • ITP since 06, post-splenectomy. Many years in remission with no treatment. Came back June 2020 w/ DVT and PE with low counts. Currently trying to find effective treatment.
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3 years 8 months ago #69528 by April_n_John
DVT and PE's low counts and blood thinners was created by April_n_John
Hi all,
I will try to make this as coherent as possible : ) My wife is currently hospitalized due to DVT in in her upper right arm. Apparently it is blocked from her elbow to her shoulder. Also a couple of PE's. This is her 2nd hosp. trip after spending 10 days there last month due to the DVT (IVIG was used to get her counts up enough to use a Heparin drip.

After her 1st release, she was given Eliquis and Prednisone and getting weekly CBC's with her hemo. Had just started Promacta, and reduced Pred dosage. Last count (last Wed) was 5K, after being in the 15K range. She was told to stop Eliquis later that day. 2 days later, her right arm started swelling again, so we were off to the ER once again. IVIG was used, with a slight increase in count, enough to start the Heparin again. However, platelet levels kept dropping and she had to be taken off the Heparin. So they tried Rituxan, which yielded counts of 16K, down to 9K, and now back to 13K. The hemo wants a level of at least 20K to begin Heparin drip again.

On Monday, they want to try NPlate. From there low-level Chemo is next. She says the team appears to not be very optimistic. She is really having a rough time and has been through a lot. She has had ITP since 2006, post splenectomy.

Sorry for the ramble, just hoping someone here may have some resources that we can pass on to her doctor. I will try to answer any questions as best I can. Thank you in advance, John.

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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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3 years 8 months ago - 3 years 8 months ago #69533 by mrsb04
Replied by mrsb04 on topic DVT and PE's low counts and blood thinners
John
What a nightmare for you both.
Promacta (Eltrombopag) and N Plate (Romiplostim) are contra indicated in patients with DVTs and PE's both of which are known side effects of a splenectomy unfortunately.
DVTs are a known risk of IVIg as well.
Eliquis (Apixaban) can cause platelet count to drop but it is a relatively rare side effect.
Rituxan (Rituximab) can take a while to kick in.
Blood clots and thrombocytopenia can be caused by a syndrome called APS (antiphospholipid syndrome), has your wife been checked out for this?
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  • April_n_John
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  • ITP since 06, post-splenectomy. Many years in remission with no treatment. Came back June 2020 w/ DVT and PE with low counts. Currently trying to find effective treatment.
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3 years 8 months ago #69534 by April_n_John
Replied by April_n_John on topic DVT and PE's low counts and blood thinners
Thank you mrsb04,
It has been a tough ride. She was doing fine for years with no issues and consistent counts around 30K.
I was looking up APS, having seen it mentioned in these forums, and that is on the list of q's for the hemo. She has not been tested for that.
It makes me wonder if they know what they are doing sometimes... I feel helpless since no visitors are allowed, and
seeking a second opinion is not really an option right now since she is stuck in the hospital.
Any other questions I should be asking?
Thanks again, John

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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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3 years 8 months ago - 3 years 8 months ago #69535 by mrsb04
Replied by mrsb04 on topic DVT and PE's low counts and blood thinners
John
My heart goes out to you both in these trying times.

Personal experience & anecdotal evidence tells me that doctors are much more worried about platelet counts than those of us with ITP are.
I worked on the NHS front line with a count of 2k. My GP (PCP in US terms) was horrified but I was fine with it. I am lucky to have a haemo (my second one & I am still with her after over 5 years) that supports empowered patients who question everything and know their bodies better than she does. If I ask for advice she gives it and respects my decision as to whether or not I follow it.

My advice to you both, & every patient I looked after, is read, read, read, question everything you are told and ask for the evidence base. Medicine is an evidence based practice. If a medical professional cannot give you their evidence base then they are not worth listening to.
April is entitled to a second opinion whenever she/you with her agreement feels one is needed.

I would definitely question why N Plate is being suggested at this stage.
Another thought is, as April's count will not stay up, does she have an accessory spleen?
Kind regards
Anne
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3 years 8 months ago #69536 by b2h
Sounds frustrating, scary and worrisome.

I have heard increased clotting does often occur with ITP. It seems contradictory, but... I have tested positive for APS, but have not had experience with what you and your wife are going through. Perhaps you need to talk to another Hematologist to get some other opinions, expertise and info. and/or request more time with your wife's current hemo. so you can ask questions and figure out what all the options and reasons are.

I did find this: www.pdsa.org/discussion-group/10-social-chat/900-dvt-deep-vein-thrombosis.html
"Plaquenil, which is a lupus drug is suggested for APS patients as it seems to have an effect on managing clotting, so you may want to talk to your doctor about plaquenil. I know I clotted when I stopped plaquenil and it also really helps my joint pain and fatigue form lupus, with no effect on my platelet count."

Best to you both ~
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  • April_n_John
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  • ITP since 06, post-splenectomy. Many years in remission with no treatment. Came back June 2020 w/ DVT and PE with low counts. Currently trying to find effective treatment.
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3 years 8 months ago #69538 by April_n_John
Replied by April_n_John on topic DVT and PE's low counts and blood thinners
Hi Anne,
Thank you for your wonderful advice. I will inquire about n-plate and the accessory spleen, certainly.

They will not start the Heparin drip again unless her count is 20K. As soon as it drops, they take her off of it again.
It seems very counter-intuitive, she shows little to no symptoms typical of a low count (bruising, petechiae etc).

I have been researching, and everyone's case is unique, so it can be difficult to know what to focus on as far as
questioning the treatment. We just want to get her to some semblance of balance so she can come home!

My q's for the hemo so far:
Would you consider continuing the Heparin even with a lower count?
Why is Nplate and low level radiation being considered so soon after the Rituxan?
Has she been tested for APS?
Have you checked to see if she has an accessory spleen?
Is DVT Thrombolysis (angioplasy, stents) an option?
Is CDT (Catheter Directed Thrombolysis) an option for the large clot in her right arm?
What do we need to achieve before you consider sending her home?

Anne, If she is positive for APS, what does that mean for her treatment?
Thank you, John
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  • April_n_John
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  • ITP since 06, post-splenectomy. Many years in remission with no treatment. Came back June 2020 w/ DVT and PE with low counts. Currently trying to find effective treatment.
More
3 years 8 months ago #69539 by April_n_John
Replied by April_n_John on topic DVT and PE's low counts and blood thinners
Thanks b2h.
It is definitely all of those things! She has always been able to manage, but these DVT's have sent her into
scary territory. We are supposed to speak w/ her hemo tomorrow, so via speakerphone, I plan to be ready
with more than a few questions. I will certainly ask about Plaquenil.

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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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3 years 8 months ago #69544 by mrsb04
Replied by mrsb04 on topic DVT and PE's low counts and blood thinners
John
I have no experience of APS so can offer no guidance I'm afraid. I have just come across this which may be of use. www.ncbi.nlm.nih.gov/pmc/articles/PMC6455093/
Anne
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  • April_n_John
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  • ITP since 06, post-splenectomy. Many years in remission with no treatment. Came back June 2020 w/ DVT and PE with low counts. Currently trying to find effective treatment.
More
3 years 8 months ago #69546 by April_n_John
Replied by April_n_John on topic DVT and PE's low counts and blood thinners
Thank you Anne, that is a great resource. We should be speaking with the hemo today.
John

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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3 years 7 months ago - 3 years 7 months ago #69611 by Hal9000
Replied by Hal9000 on topic DVT and PE's low counts and blood thinners
John, here is a thread you may be interested in.
"Who has had a blood clot"
pdsa.org/discussion-group/6-general-itp-discussion/29822-who-has-had-a-blood-clot.html#60842

Someone posted a link to a really extensive study, 2 or 3 years ago, on clots and ITP but can't remember who posted it. May have been 'momto3boys'. Don't know. Seems like the real no-no was combining two ITP treatments at the same. Like steroids and IVIG, or steroids and a TPO-RA (like Nplate). Sound familiar/applicable?

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