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covid vaccine 8 months 1 day ago #70738

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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StrayKat88
Absolutely. My haemo also believes it

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covid vaccine 7 months 3 weeks ago #70783

  • MelA
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mrsb how are you doing??
I had #2 Pfizer on Saturday - decided since no symptoms [of "that feeling"] I'm not going to ask for a platelet count.
No side effects from the vaccine - very slightly sore at injection site and that was it, thank heaven!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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covid vaccine 7 months 3 weeks ago #70784

  • momto3boys
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mrsb how are you doing??
I had #2 Pfizer on Saturday - decided since no symptoms [of "that feeling"] I'm not going to ask for a platelet count.
No side effects from the vaccine - very slightly sore at injection site and that was it, thank heaven!

Fabulous news MelA!! Congratulations on getting your second shot and being done.
I think not chasing the number is probably a good idea if you aren't having any symptoms and feel fine. My second shot is on Sunday, so my fingers are crossed that it will go as smoothly as yours has.
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covid vaccine 7 months 3 weeks ago #70785

  • EdwardJacob
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I am 74. My platelets have been volatile. My condition is autoimmune. I received the Moderna Vaccine 1/16 and 2/20. Today, 3/2, I had a CBC. The platelets are unchanged. I was very apprehensive after the Webinar last week. They talked about platelet collapse. But it happened in many people whose pre vaccine platelets were unknown. I feel I am lucky. I hope others are also.
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covid vaccine 7 months 3 weeks ago #70786

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Mel A wrote mrsb how are you doing??
Funny you should ask that. I bent down and cracked my forehead on the edge of the table a couple of hours ago and said to the dog 'that will be a good indicator of my platelet count'. I completely forgot about it so have just looked in the mirror and cannot see any indication of damage at all.

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covid vaccine 7 months 3 weeks ago #70787

  • momto3boys
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Mel A wrote mrsb how are you doing??
Funny you should ask that. I bent down and cracked my forehead on the edge of the table a couple of hours ago and said to the dog 'that will be a good indicator of my platelet count'. I completely forgot about it so have just looked in the mirror and cannot see any indication of damage at all.

Lol, perhaps not a recommended method for ascertaining platelet count, but it sounds like you are doing well if you aren't sporting a bruise yet. Great to hear.

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covid vaccine 7 months 3 weeks ago #70788

  • momto3boys
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I am 74. My platelets have been volatile. My condition is autoimmune. I received the Moderna Vaccine 1/16 and 2/20. Today, 3/2, I had a CBC. The platelets are unchanged. I was very apprehensive after the Webinar last week. They talked about platelet collapse. But it happened in many people whose pre vaccine platelets were unknown. I feel I am lucky. I hope others are also.

Congratulations on your count stability!

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covid vaccine 7 months 3 weeks ago #70789

  • MelA
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Oh mrsb I'm sorry you hit your head, ow! But I'm delighted to hear you can't see any damage!

EdwardJacob - good for you! [that was my thought, people who had platelet issues after the vaccine probably weren't ITPers to start with] - happy all went well for you!

Mom you are going to do just fine!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 7 months 3 weeks ago #70790

  • poseymint
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I'm so interested in everyone's story! Glad ya'll are getting vaccinated and its going fairly smoothly. I received the Moderna vaccine on Jan 22 and second dose on Feb 19. yay! I feel like a big weight has been lifted off me. Now hoping the rest of my family can get the vaccine soon.
Like Carducci, my counts fell and I'm certain it was the vaccine second dose that did it. The first dose didn't change my counts, that seems odd but I also didn't have side effects from the first dose. The second dose gave me 2-4 days of body aches/myalgia, chills, slight fever 100, mild muscle/nerve neuralgia, plus a malar rash which is a Lupus symptom. All very tolerable. I'm on Nplate and get weekly CBCs. My counts run low but I haven't had a count below 10 in about five years. The count of 9K was 3 days after the second dose of Moderna. My doctor raised my Nplate so that explains yesterday's count of 36K.

My counts this year- 25K 31K 19K (1st dose) 18K 19K 22K 32K (2nd dose) 9K 36K.

I was curious to see if my counts would bounce back on their own after the drop to 9K, but like MrsB, I also hit my forehead! :( and I started getting two black eyes. So I called the hemo and agreed to an Nplate dose increase. All in all, it was worth it!

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covid vaccine 7 months 3 weeks ago #70792

  • Carducci7292
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Glad to here that your counts came back up. I do believe that the Flu like symptoms after the second dose caused an immune system reaction and my platelet drop. I am very thankful that my number jumped back up after my normal dose of NPlate.
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covid vaccine 7 months 2 weeks ago #70806

  • momto3boys
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I got my second shot of Pfizer yesterday afternoon. I was expecting to be out of commission for a few days with fever and chills, but I feel perfectly fine. I'm shocked at how well this is going so far. Just a bit of a sore arm and nothing else. No immediate signs of a platelet crash, but I'm going for a count on Wednesday. I guess I can just enjoy my clean house because I had prepared to be in bed for a few days! Glad this is going easier than expected.

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covid vaccine 7 months 2 weeks ago #70808

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Platelet count back up to 42 with no change to medications, will try get pre and post 2nd dose counts.

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covid vaccine 7 months 2 weeks ago #70809

  • RR01
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Hello Mrsb04 and momto3boys , were you both under treatment when you received these vaccines? I am planning to get the johnson and johnson vaccine as that might be the one that becomes available . Anyone else planning to get this ? Please share your experience after you get it - it is just one shot as you all know.

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covid vaccine 7 months 2 weeks ago #70810

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Eltrombopag 75mg/day and Prednisolone 2mg/day.
Over here there is no choice you get what the clinic has in stock. Personally I was just glad to be offered one. Had I been given a choice I would have gone for Pfizer anyway.

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covid vaccine 7 months 2 weeks ago #70814

  • MelA
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mom that is terrific!!! So glad you had no reaction to #2!
You were smart & cleaned house in anticipation of being down for a bit - I figured out dinners for my husband for the day of my 2nd injection and the next day.

RR - I got the Pfizer vaccine, no problems. Where I went they were giving Moderna and Pfizer, they already had planned who gets what so I had no choice. You will have a choice?

mrsb - good to hear your count is back up!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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covid vaccine 7 months 2 weeks ago #70815

  • momto3boys
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Hello Mrsb04 and momto3boys , were you both under treatment when you received these vaccines? I am planning to get the johnson and johnson vaccine as that might be the one that becomes available . Anyone else planning to get this ? Please share your experience after you get it - it is just one shot as you all know.

I had been on Fostamatinib for about a week before discontinuing it temporarily to resolve a blood pressure issue, but my count seems to have improved with that treatment. Previously, I treated my ITP with Promacta for several years, but discontinued last year because of bone pain issues. I didn't have a choice about which vaccine I would receive (our health department determines which shot is being given based on supply on any given day). If I'd had a choice, I would have still chosen Pfizer.

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covid vaccine 7 months 2 weeks ago #70816

  • momto3boys
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Platelet count back up to 42 with no change to medications, will try get pre and post 2nd dose counts.

Fabulous! Glad to hear that you are back in your normal range. I'm still having no symptoms of a low count and am feeling just fine. Really excited about how well this second shot has gone!

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covid vaccine 7 months 1 week ago #70824

  • momto3boys
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Yesterday's count was 23k. Not too terrible, no significant symptoms at the moment. I am hoping to just ride it out for the immediate future unless I develop other symptoms. My rx for Doptelet got approved (the blood pressure issue made me a Fostamatinib failure), so I guess I'll be switching over to that next. My youngest son enjoys laughing at the marketing of these drugs on their websites, and the Doptelet site has a "Plateletville" ice cream truck, so I guess we'll see if I'm going to Plateletville, lol.

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covid vaccine 7 months 1 week ago #70829

  • MelA
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What a precious youngest son you have mom! I hope you get that Plateletville trip!
Now what does your normal count run - this is too long a thread to go hunting for it :) Is the 23k a drop?
So glad no symptoms right now and fingers are crossed you stay no symptoms !
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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covid vaccine 7 months 1 week ago #70830

  • momto3boys
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Haha, yeah, let's see if I go to Plateletville. However, since Doptelet is a TPO-RA medication, let's assume that Plateletville represents a consistent count of about 50k and not much higher! Don't need any increased stroke risk thrown in the mix, no thanks.

Since I completely abandoned lab work during the majority of the pandemic, I don't know what I'm running now. Previously I was in the 30s and 40s, but I speculate that I'm now more in the 20s. Since I'm about to start a new treatment, I expect that I won't be consistent for a while to come.

Still no significant side effects, so it looks like I've managed to achieve complete vaccination successfully!

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covid vaccine 7 months 1 week ago #70831

  • MelA
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Keep up the good work - NO significant side effects!!
When will you start Doptelet?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 7 months 1 week ago #70833

  • momto3boys
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Keep up the good work - NO significant side effects!!
When will you start Doptelet?

Yep, doing just fine. I will go in for lab work on Wednesday, but no major issues :)
Insurance has approved the Doptelet, but I have to wait for the prescription to work its way to the specialty pharmacy, etc. We'll see how long that takes. Honestly, since I'm not having any bleeding or symptoms, I'm in absolutely no rush. I stopped taking the Amlodipine because my blood pressure stabilized and it was causing a crazy amount of swelling in my feet, ankles, and hands. I'm happy to be on nothing for a bit to let everything settle after my recent whirlwind of vaccine + medications!

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covid vaccine 7 months 1 week ago #70835

  • MelA
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Just keep an eye on your bp - my ditzy pcp messed with lowering mine and up it went again. If need be there are other bp meds that won't cause the edema you were having

Does it feel good to be off treatment for a bit? To be free for a while?

Take care!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 7 months 1 week ago #70847

  • momto3boys
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Just keep an eye on your bp - my ditzy pcp messed with lowering mine and up it went again. If need be there are other bp meds that won't cause the edema you were having

Does it feel good to be off treatment for a bit? To be free for a while?
Take care!!


I will definitely keep an eye on the BP, now that it's started wigging out, I'm sure I'm going to be more susceptible to it rising in the future *sigh*. Indeed, the calcium blockers are famous for the swelling, but fingers crossed that it will remain in a good range for a bit, and I can continue to be medication-free.
And, of course, it's nice to not have to worry about side effects of a new ITP medication. I have spent most of the time during the pandemic off of any medication, so it's been good. Since I'm not having symptoms, it's so tempting to not start something new. However, I do need to get in to the dentist one of these days, so that's a problem if I'm running with a count of 20k on average.

Hope you are doing well and enjoying your vaccinated status!

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covid vaccine 7 months 5 days ago #70865

  • momto3boys
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Well, my count yesterday was 44k, which is perhaps my current normal. Whatever it is, it is an improvement of my count from a few days after the vaccine, so it looks like I've recovered from the dip that I had. Honestly, 44 is good enough that I find myself wondering if I even want to start Doptelet at the moment. Regardless, absolutely thrilled to have safely navigated my vaccination process!

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covid vaccine 7 months 5 days ago #70868

  • MelA
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Hope you don't have to go back on bp med - can't recall what kind I was on but it caused a cough which was driving me nuts, once I figured out why, the doctor changed my med and the new type has been working well.

If you are comfortable at 44k [ yea you count increased! ] why not talk to your hematologist and see what you 2 come up with regarding treatment. Still no symptoms right?

Regardless, absolutely thrilled to have safely navigated my vaccination process!

AMEN!! I agree totally!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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covid vaccine 7 months 5 days ago #70870

  • mrsb04
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Mel A wrote can't recall what kind I was on but it caused a cough
I suspect this means you were taking an ACE inhibitor. Coughing is a known common side effect.
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covid vaccine 6 months 3 weeks ago #70939

  • porqupine
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I am getting my vaccine today Saturday March 27th with a count of 23 Astra Zeneca my wife is terrified .I'm a little concerned but i am still getting it. I got my shot all is well no reactions so far
March 28th felling good no problems at all

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covid vaccine 6 months 3 weeks ago #70940

  • CindyL
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porqupine, my husband and I both got the Astra Zeneca (Covishield brand) shots on Wednesday. So far no issues. I had a bit of a metallic taste in my mouth for the rest of the afternoon, and Steven had a sore arm.
I have a blood test in a week to see how my counts are.
Good luck with your shot!
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covid vaccine 6 months 3 weeks ago #70943

  • gozorakgogo
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Havent been on here for some time. The last time I was here it was to speak skeptically about the vaccine and how not enough was known about its potential effects on those of us with ITP. Long story short...I said asked myself..."What the hell is your problem you big dummy..get the shot"

So I did. Pfizer. I receive my second dose tomorrow. No issues or problems with the vaccine so far. Of course there wasnt going to be of course there will not be.

Platelet levels hanging around 100 after having been off all treatments for months now

dont be skeptical...do yourself a favor and get the vaccine if you have any reservations

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