TOPIC:

first post - I'm 40, generally healthy w/ no other diagnosed conditions- Was diagnosed w/ ITP in 2010, and my platelet numbers have fluctuated between 50k-80k platelet count over the years untreated. I get the flu vaccine and all other necessary vaccinations as I work in the hospital. I received J&J covid-19 Vaccine on Wednesday, 3/31, and noticed unexplained bleeding and unusual bruising two days later, also nose bleeding. I went to ER w/ a count of 42k, my hematologist recommended admitting me. Once admitted six hours later, I received another blood draw in the morning 33k. My baseline was taken multiple times the weeks prior as I had been following the media reports of a few adverse reactions had been in the 70k range.

At the hospital, they gave me a steroid dose of Dex 40mg prescribed for four days and IVIG - on Easter was back to 59k! Thankful for the quick boost to baseline, I just finished my 4th dose of Dex and have an appointment to see the hematologist in 15 days for a subsequent blood draw and follow up.

Just curious if anyone else has experienced anything similar?

Thankful to have the vaccine and would get it again and recommend it as a treatable platelet drop seems more desirable than the unknowns of contracting COVID-19 and exasperating a chronic ITP condition. I just wanted to share my experience. Have a great day!

Onandon wrote Thankful to have the vaccine and would get it again and recommend it as a treatable platelet drop seems more desirable than the unknowns of contracting COVID-19
I completely agree. I had Pfizer and had a drop in count which has come back up on its own. 2nd dose booked for 5th May. I don't care how low my count goes, it can be treated and a much better option than a life support machine.

I got the Covashield/AstraZeneca vaccine 2 weeks ago. Got a blood draw today to see if it has affected my counts any. It has been stopped for those under 55 here in Canada, but since I'm over that I will be getting my second dose. Just don't know when. Hubby won't be getting it again, unless we have to wait til September!

Did not have the JJ vaccine so can't speak to you on it/platelets.
I did have both injections of the Pfizer vaccine and had no trouble at all. I totally agree with you, I'd rather have a drop in count than the unknowns of covid. A friend of our son & wife came down with covid in Nov or Dec, can't recall, and she still is fighting pericarditis.

I just posted about my crash following the Pfizer vax, but I went far lower than you did, recovered with IVIG, Dex, and platelets, only to crash again to single digits and was admitted again on Monday. This time I am so far NOT rebounding. I don't regret getting the vax, in fact I'm bummed that I can't get the 2nd dose, but for me the risk seems too great. I hope for at least one fear-free hug again some day, but for me it won't be until covid is truly gone, if that day ever comes.

I had my vaccine Pfizer second dose. My platelets dropped. I asked my hematologist and he advised that most likely the drop is from the vaccine. Apparently a dr in Texas died after the vaccine: he was not diagnosed for ITP before, but his platelets drop caused a cerebral hemorrhage. Extremely rare.
I am glad I received the vaccine.
There is a place on the CDC website where you can advise them of side effects.

I had the JnJ last Wed, April 9th. Platelets were 142k a month previously, 170k just before vaccine, then 162k day after vaccine. After 32 hours got strong pain
in joint of right shoulder joint just above vaccination lasting a day. Last night got a strange 'headache' that went from the back of my neck up the back of my head to about ear level. It was sudden pain at about 5-6 different discrete areas like 'lights on a string' that hurt within seconds of each other. After about 20 min. it went away. Have strong, dull headache today with fatigue and muscle pain. This is 'normal' though for me. Tomorrow I get next blood draw.

They are still giving Astra-Zeneca in Canada?

How are you doing now?

Rose, yes we are still getting the AZ vaccine in Canada, just not in people under 55. We got our shots 3 weeks ago today and are doing fine. Hubby won't be getting the second dose unless we have to wait til September to get it.
Unfortunately, no vaccine anyone comes up with will have the thorough testing needed. The world needs something to combat this pandemic so we can all get back to normal.

Thanks all for sharing your experiences - so much value in this community!

J&J vaccine - Update my platelets jumped from 33k to 420k 10 days out from IVIG and Dex 4x days 40mg - getting blood draw tomorrow. Little unsettling seeing the news relating to JJ pause related to the cases w/ low platelets and clotting... my wife is in the age range of this rare complication, and she had the J&J vaccine seven days ago...

Getting another blood draw tomorrow to confirm if my platelet count is accurate as it seems incredibly high... anyone has any thought? (14 days out from vaccine on 3/31/21.

Clonicuta wrote:

I had my vaccine Pfizer second dose. My platelets dropped. I asked my hematologist and he advised that most likely the drop is from the vaccine.

Clonicuta what was your count before that 2nd dose and to what did it drop?
Thanks!

Hi Onandon: That is great news about your platelet rise. Do you notice feeling more energy or other changes in your body with the increase? I think all of us who
got the JnJ a week or so ago have some fears....It actually 'comforted' me to get my planned blood draw today to find out my platelet counts. One thing your wife can do is remember that the risks as like 1 in 1 million for bleeding...so logically it is very low. Also, we don't know yet what meds these women were on or what pre-exisiting conditions they may have had.
When the Asta Zeneca caused the brain bleed docs researchers looked for the "Platelet Factor 4 antibodies" in the blood as a marker. I am wondering if anyone in the age range of risk with the JnJ could ask their doc for both a platelet check and the P4 antibody check as a 'pro-active' approach before a person has symptoms or at the very start of symptoms indicating risk. I'm assuming you both know the symptoms to looks for. If this is a vaccine-induced heparin-like thrombosis/thrombocytopenia in all these women then makes sense to me to draw the blood of all women 60 or younger a week after the JnJ to see if the P4 Antibodies are present and then pro-actively treat the person. Hopefully, one of the PDSA doctors might be able to speak to this! May you and your wife be well through this time of changes.

Onandon
IVIg coupled with 160mg Dex is a pretty hefty rescue. IVIg efficacy is only transient, I suspect your count will have come down.

RoseHeartSmile wrote That is great news about your platelet rise. Really; the thought of a drug induced count that high makes my blood run cold.

Rose heart smile:

I’m not really certain if I feel a lot more energy. Definitely feel better the week after being on Dex and IViG - I had a bit of a brain fog, and had a lot of the symptoms I read about related to high dose of Dex. This past Sunday I felt as if my brain cleared and I felt much better. I’ll update on where my count is after my draw today. Appreciate the thoughts with my wife. She actually did get a physical (needed one anyway) and they did a blood draw I was thinking mainly of just focusing on the platelet count. I’ll have her call over to the office about the P4 antibodies as I believe my hematologist mentioned that when I asked about this as well. Thanks again for the responses really appreciated!

350 count this afternoon - so it’s coming back down...

Here was what my hematologist said when asked about testing for Platelet factor 4 antibodies they can be positive in the general population usually at low levels but may not have functional consequences, so without the appropriate clinical picture didn’t feel testing was warranted - had my wife ask Primary care doctor and they had similar thought

Onadon: How are your platelet levels doing now? Hope you and your wife are doing ok. I had a health dive this past week. I finally, with a friend's help figured out this was most likely related to two new meds I was given....Celecoxib for pain (Pain specialist knows I've been diagnosed with ITP and am in remission but said it was a safe anti-inflammatory) and Famotidine for breathing trouble related to a motility problem in my esophagus.
Today I took a short walk around Cranberry Lake in the sunshine and tended to my back patio little garden...felt so good to be a bit more 'out and about' again!

Thanks for that info!

Lizabeth: how are your doing? Your last message you left you were having another crash in platelets. Hope you are doing better now.

Just wondering how you are feeling now? I had a steroid injection beginning of March.no problem at all felt great.
Got my Johnson and Johnson vaccine March 31 weird headache ear pain heart flutters but went away pretty quickly my count at that time was in the 80s Middle of may received same steroid injection in other knee next few days very bad headache ear pain fatigue weakness. 5 days after urgent care with a count over 700 my head felt like it was going to explode. Taken off my promacta until they dropped under 50. Feeling very fatigued and weak. My count needs to be under 100 because I’m on blood thinners as well. Nothing had changed with me to make them go up like that except my vaccine happy to be vaccinated but wondering if the Johnson and Johnson vaccine was the cause Hoping your feeling better. I’m getting there!

"D Neaphen": I can't tell who you were writing to, but I'll respond since I'm here! . Did the docs mention the possibility of steroid causing the rise in your platelets? I know that normally steroids increase blood sugar, but I know they also counteract hyper-immunity so would think they'd suppress rather than increase platelets...but I am not a medical professional so am curious about this but have no expertise.
May you feel better soon! Melissa

I am a medical professional.
Oral corticosteroids are the first line management for newly diagnosed patients with a platelet count below 30 see link
ashpublications.org/bloodadvances/article/3/23/3829/429213/American-Society-of-Hematology-2019-guidelines-for (weird link but works)
I asked my haemo if a steroid injection would affect my count as GP wanted to give me one for trigger finger. She told me highly unlikely as localised dosing as opposed to systemic.

My dr agreed that it wouldn’t but what did make them go up? They don’t know. had to be the steroid injection with the vaccine. That was the only thing different since my first injection. Probably should have waited longer to get the steroid injection but when I asked dr they said it should be fine after 2 weeks.

Due to arthritis I've had my number of steroid injections - now only getting them in both shoulders - I don't ever recall my count going up after a steroid injection. Also have to use a steroid nose spray at times for allergies - never has made my count go up.

Platelets seem to have a mind of their own sometimes

I am 46 was totally healthy and within 2 weeks of the J&J vaccine I was losing so much blood from my period I passed out and was taken to the ER. My platelets were 7,000.  Spent 3 days in the hospital and was given Dex and 1 round of IVIG.  Platelets were at 100K, but dropped 2 weeks later.  Weeks of prednisone, more drops, 3 more hospital stays. We tried Rituximab and that failed failed, back on steroids.  Finally went on Promacta and seem to be stable.  Praying it says that way, it has been a long 6 months. 

Hello,
I've had a drop in my counts. 4 days after first shot with moderna my platelets were ok. But after second shot all my counts went arount 40-50k.
Now I finally got good counts again but after nplate dosage increased and 3 months of bad counts 

Hi
I had COVID last year and my platelets dropped to 19,000 and was given Dexa. This year I had to get the Moderna shot because I was exposed at my job multiple times. After the shot my plat dropped to 7,000. I took prednisone for 3 weeks and counts went back to 76,000. I didnt not take second shot. I was doing great and they dropped to 11,000. 2 weeks after stopping steroids. I had a stomach virus vs symptoms of my platelets dropping again and I am back on steroids. Very sad… will continued 

Sorry you are back on pred lilicarot -  one thing all of us hope we don't have to do again.  Hope your count gets to a good level and stays there!

Thank you. I am tapering down steroids but side effects are tough. Will see what happen. I Keep praying