1. < Blood Cancers & Disorders

Low Platelets: Diagnosis to be confirmed

Posted by rockitman @rockitman, Oct 14, 2022

I have a platelet count of 17 as of Oct 10th 2022. I lose about 800-1000 platelets a day. 5000 - 7000 a week between CBC.
My Dr has me on Promacta 50mg a day(4 weeks), Prednisone 80mg a day, 40mg morning, 40mg night (6 weeks), No help at this point.
Started Rituxan last Tuesday morning Oct 10th 6 hr treatment.
Three more 6hr treatments one week apart every Tuesday morning.
Has anyone had good results with Rituxan?
My Dr has changed my Diagnosis 5 times in as many weeks.
My bone marrow biopsy/asperation lists two possibilities, aplastic Anemia and Megakaryocytic Hypoplasia. He is currently dianosing me with Megakaryocytic Hypoplasia??????
At this point I'm not sure what I have?
I did contact Mayo Clinic and have gotten an Appointment next Wednesday, thank you Mayo.
Does anyone know how long it takes for the Rituxan to work if will even work at all. My Dr said 54 days? I don't have 54 days of platelets left at the platelet loss I'm experiencing now. Getting down to the critical stage, No bleeding yet that I can tell internally but bruising very easily.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 27, 2022
In reply to @rockitman "I got my bone marrow aspiration & bone biopsy Nov 1st. I just got back the..." + (show)
@rockitman

I got my bone marrow aspiration & bone biopsy Nov 1st. I just got back the results Nov 23rd. The results came back Negative. So, I still have no diagnosis after two bone marrow biopsies and numerous blood tests.
So far, no markers for cancer and negative for MDS etc.
I have low platelets, low white and red blood cell counts (2.0) and between 7.2 and 8.1 for Hemoglobin.
At 7.2 (Hemoglobin) I had to have a Blood transfusion due to difficulty breathing. I get weekly platelet transfusions.
My Mayo Dr is starting with additional blood tests next week and another Bone marrow biopsy.
Still a mystery to me and the Dr's.
This all started after getting the COVID VACCINE and Booster shot. Coincidence???

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Hi @rockitman Well, I guess some good news is that your results are negative for any cancers and MDS but, you certainly remain a mystery man. That’s really frustrating for you and your doctors, and of course, at this point there’s no way to know if the vaccine was involved or not. There are certainly people who have had reactions they feel are correlated with the vaccine but it’s difficult to prove because there are others with similar maladies which developed prior to Covid.
It’s reassuring that your doctor at Mayo continues to delve deeper into finding an answer for you. Keep me posted, ok?

REPLY
rockitman | @rockitman | Nov 27, 2022

I got my bone marrow aspiration & bone biopsy Nov 1st. I just got back the results Nov 23rd. The results came back Negative. So, I still have no diagnosis after two bone marrow biopsies and numerous blood tests.
So far, no markers for cancer and negative for MDS etc.
I have low platelets, low white and red blood cell counts (2.0) and between 7.2 and 8.1 for Hemoglobin.
At 7.2 (Hemoglobin) I had to have a Blood transfusion due to difficulty breathing. I get weekly platelet transfusions.
My Mayo Dr is starting with additional blood tests next week and another Bone marrow biopsy.
Still a mystery to me and the Dr's.
This all started after getting the COVID VACCINE and Booster shot. Coincidence???

REPLY
1 reply
tyson1221 | @tyson1221 | Nov 22, 2022
In reply to @newmoonsabbath "Hi Colleen I have been getting injections for over a year now and I saw the..." + (show)
@newmoonsabbath

Hi Colleen I have been getting injections for over a year now and I saw the oncologist on the 15th. Tomorrow I go in for blood work and an injection but I really don't expect any big changes although I am hoping to have a better platelet level fingers crossed

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Hopefully they go up I’m new here an mine are 39.000 wen do they start treating low platelets also rbc wbc are also little low

REPLY
newmoonsabbath-Mary | @newmoonsabbath | Nov 21, 2022
In reply to @colleenyoung "Hi Mary, that does sound frustrating. I'm sure this frustration sounds familiar to fellow members like..." + (show)
@colleenyoung

Hi Mary, that does sound frustrating. I'm sure this frustration sounds familiar to fellow members like @rockitman @hlmcneely @elenarey77 @lulujuice @emcdanie2006.

How long have you been doing the weekly injections? Have you been to see the oncologist since your last reading on Nov 15?

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Hi Colleen I have been getting injections for over a year now and I saw the oncologist on the 15th. Tomorrow I go in for blood work and an injection but I really don't expect any big changes although I am hoping to have a better platelet level fingers crossed

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 21, 2022
In reply to @newmoonsabbath "I have been dealing with a low platelet cont for the past two years my doctor..." + (show)
@newmoonsabbath

I have been dealing with a low platelet cont for the past two years my doctor tells me that they don't know what the cause of my ITP is. Started out with infusions and moved to promacta when that didn't work I started receiving weekly injection shots. As of November 15 my platelet count was at 8000 and fluctuates every time I see my oncologist. This is very frustrating not knowing what in the world is going on with my body.

Jump to this post

Hi Mary, that does sound frustrating. I'm sure this frustration sounds familiar to fellow members like @rockitman @hlmcneely @elenarey77 @lulujuice @emcdanie2006.

How long have you been doing the weekly injections? Have you been to see the oncologist since your last reading on Nov 15?

REPLY
1 reply
newmoonsabbath-Mary | @newmoonsabbath | Nov 19, 2022

I have been dealing with a low platelet cont for the past two years my doctor tells me that they don't know what the cause of my ITP is. Started out with infusions and moved to promacta when that didn't work I started receiving weekly injection shots. As of November 15 my platelet count was at 8000 and fluctuates every time I see my oncologist. This is very frustrating not knowing what in the world is going on with my body.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022
In reply to @wayne80for7 "Hello all, I have been dealing with a very low platelet count for the past year..." + (show)
@wayne80for7

Hello all, I have been dealing with a very low platelet count for the past year now, currently at 11,000. Been on prednisone and when at 50 Mg count has gone up as much as 140 but very time the dosage is lowered count goes down significantly. My platelet count was 340,000, got COVID shot then 30 days later developed bruising and blood test revealed platelet count at 19,000. A year later prednisone seems to be losing its affects and count not going up. Dr is starting me on Rituxmab next week. 4 -8 weeks. As of today I'm developing symptoms i never had before such as blood in my nose and on the white of my eyes. Getting nervous. Dr didn't seem alarmed at my count of 29 so just waiting the week until i start the Rituxmab. Hoping someone has had similar experience and the Rituxmab worked. I was 48 and perfectly healthy before i got the vaccination, Now a year later i was forced to retire and getting worse

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Hi @wayne80for7, did you start rituxmab? How are you doing?

REPLY
wayne80for7 | @wayne80for7 | Nov 11, 2022

Hello all, I have been dealing with a very low platelet count for the past year now, currently at 11,000. Been on prednisone and when at 50 Mg count has gone up as much as 140 but very time the dosage is lowered count goes down significantly. My platelet count was 340,000, got COVID shot then 30 days later developed bruising and blood test revealed platelet count at 19,000. A year later prednisone seems to be losing its affects and count not going up. Dr is starting me on Rituxmab next week. 4 -8 weeks. As of today I'm developing symptoms i never had before such as blood in my nose and on the white of my eyes. Getting nervous. Dr didn't seem alarmed at my count of 29 so just waiting the week until i start the Rituxmab. Hoping someone has had similar experience and the Rituxmab worked. I was 48 and perfectly healthy before i got the vaccination, Now a year later i was forced to retire and getting worse

REPLY
1 reply
emcdanie2006 | @emcdanie2006 | Nov 4, 2022
In reply to @kristiann1123 "My cousin (31 year old female) has had a very low blood platelet count for over..." + (show)
@kristiann1123

My cousin (31 year old female) has had a very low blood platelet count for over 2 months now. She got down to 6k and was hospitalized for 3 days and they are not telling her anything other than it could be chronic or a one time thing. She has taken steroids to boost her levels back up but the moment she stopped, they dropped back down to 26k within a matter of a few days. She has had numerous labs and testing and they aren't fixing her problem and seem to not even have an inkling as to what is really going on with her. Any thoughts or ideas on what we should do next?

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I highly advise a 2nd opinion. Contact an specialist immediately! Have them run an AdamsT13 blood test, it will surely point to iTTP. I was in a coma for 4 days (blood loss) doctors ran every test imaginable- finnaly, an hematologist saw that I had no platelets and started plasma exchange.

Wishing you the best, keep us updated. “praying”

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3, 2022
In reply to @kristiann1123 "My cousin (31 year old female) has had a very low blood platelet count for over..." + (show)
@kristiann1123

My cousin (31 year old female) has had a very low blood platelet count for over 2 months now. She got down to 6k and was hospitalized for 3 days and they are not telling her anything other than it could be chronic or a one time thing. She has taken steroids to boost her levels back up but the moment she stopped, they dropped back down to 26k within a matter of a few days. She has had numerous labs and testing and they aren't fixing her problem and seem to not even have an inkling as to what is really going on with her. Any thoughts or ideas on what we should do next?

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Welcome, @kristiann1123. I moved your message to this existing discussion that @rockitman recently started.
- Low Platelets: Diagnosis to be confirmed: https://connect.mayoclinic.org/discussion/low-platelets-1/

I did this so you can read the previous posts and connect with members like Rockitman, @loribmt @hlmcneely @elenarey77 @lulujuice @emcdanie2006

Kristian, has your cousin considered getting a second opinion to help find the underlying cause?

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