TOPIC:

I did hear of some reports where people's platelets had a big drop post Pfizer. Few instances but still. Did anyone's hematologists mention one vaccine over the other? Or nope?
Also how frequent should I get my blood counts checked post first dose and second dose? Every few days?

I had 2nd dose of Pfizer 6 days ago. Both times I had a count 2 days after the vaccination but only because vaccinations coincided with my pre booked monthly routine test.
First time I had count checked 2 weeks later just to make sure it was on the way back up from 19 without any additional treatment. It was at 42, next month 47.
Am doing the same this time as count was 18 post vaccination.

My hematologist was fine with either Pfizer or Moderna. My experiences were very similar to mrsb's. I dropped to a low of 17k after the first shot, then rebounded by one week afterwards. I dropped to a low of 18k after the second shot, then rebounded one week later again. The only reason I even know that I had a slight count drop was because of the fact that I did lab work a few days after each shot. I had no symptoms of a low count either time. If I'd waited another week to do labs, I wouldn't have even known about the count drop.

My normal levels are around 40k, by the way, so those "drops" were quite small as an offset from what I usually run. Absolutely thrilled that I got vaccinated. It has been such a relief!

My hematologist just recommended getting the vaccine - Pfizer or Moderna.
I decided not to have a count before or after the 2 Pfizer shots I received - was going to but then decided not to. Did fine, no problems.

Good to know. That's a relief. I might get my counts checked before the vaccine just to know what my baseline is. Probably will get counts after as well just to be safe.

Glad you are ok! Did you have to do steroids have they dropped to 17k?

christyssn wrote:

Glad you are ok! Did you have to do steroids have they dropped to 17k?

I did no treatment after either shot. My platelet counts rebounded on their own with no symptoms and no steroids. It was just a brief blip for me.

christyssn when was your last CBC, what was your platelet count then?

Wonderful! Did you get Pfizer or Moderna?

christyssn wrote:

Wonderful! Did you get Pfizer or Moderna?

Not sure if you were asking me, but I got Pfizer. I, like Mel, would be curious about what your last platelet count was.

As of few weeks ago, my count was 134k

134k is a normal level count. Are you on any treatment, or do you just run with numbers like that? If those are your numbers with no treatment, then you are definitely in remission and don't really need to do anything. Go get the vaccine with high numbers like that!

christy have you been diagnosed with ITP - when and at what count? What has been your lowest count - what treatment, if any, have you had - are you seeing a hematologist?

I was diagnosed with ITP in 2019. Lowest count was 65,000. Thank fully it slowly came back up and i didn't have to take any medications. Didn't even have treatment. Just was constantly monitored by my hematologist. My best guess is that it was probably the booster dose of a vaccine that caused it so the timelines matched when we pieced it together.

YEP! I am definitely going to get my vaccine in June. I am 28 and I want to go out and travel more. Need to get the vaccine for my own peace of mind haha.

I’ve had ITP for 7-8 years now controlled with rituxan. Last treatment was 3 years ago after slow stable decline in platelets were watched and another course of rituxan was ordered when they hit 50s. In March 2021 platelets were 130 prior to receiving covid vaccine.(phizer) Last week (approximately 3 weeks after 2nd shot) nose bleed that wouldn’t stop led me to ER. Thinking it was allergies I mentioned to attending physician that I was due for platelets check this week. We quickly learned that my platelets crashed to <7 Hematologist was called in and CT scan was called for. I was admitted for ivig/decadron push and stayed in the hospital for a three day visit. Platelets are slowly starting to climb and promacta was started for treatment. Just wanted to share my story and warn everyone to keep platelets monitored. I had no warning that drop was so severe and was shocked when the lab came back with that low number.

I had the Moderna vaccine. Platelets were at 83 before the first dose and 29 four days after the second dose. WBC and Lymph# were also down. I was tested again 2 weeks later and platelets were up to 63 and everything else was back to normal. I am also on 20mg/day Doptelet. I will also tell you that 15 hours after the second dose I felt like I had the flu (tired, muscle and joint pain) and by the next morning I felt fine.

do you think it was the vaccine that caused the drop? @bethkruze

Christy,
We do think that the viral load introduced by the vaccine caused it which is why I chose to share it. I still think given the stories we’ve heard about covid that getting the vaccine was the right thing to do just that if/when it happens again I’d choose to do weekly blood draws for a few weeks to monitor it closely

I guess everyone is different. I have had ITP since 2006. Both doctors, my PCP and my Hematologist told me not to get the vaccine. So I haven't. But my platelets and white blood cells crashed a couple of weeks ago and I went to ER when I was spitting blood out of my mouth. Sigh. No rhyme or reason why they crashed. My platelets were down to 1k and my whites were 1.3. I was pumped up with prednisone and and IVIG and sent home after a couple of days.

ananta wrote:

I guess everyone is different. I have had ITP since 2006. Both doctors, my PCP and my Hematologist told me not to get the vaccine. So I haven't. But my platelets and white blood cells crashed a couple of weeks ago and I went to ER when I was spitting blood out of my mouth. Sigh. No rhyme or reason why they crashed. My platelets were down to 1k and my whites were 1.3. I was pumped up with prednisone and and IVIG and sent home after a couple of days.

Hi anata: thanks for sharing, do you know what it was that made them all recommend not getting the vaccine? It's surprising since most of the hematology sources and doctors of people on here seem to be suggesting the vaccine, so I'm wondering if there's something special about your case?

My girlfriend has ITP and unfortunately it's a multiple month wait to consult with a hematologist (downside of Canadian health care), so we're stuck doing our own research on if she should get the vaccine now, so the individual anecdotes on here are super helpful.

Also on the Pfizer vs Moderna question, my understanding is Moderna has 4x the amount of vaccine in their shot and also causes a somewhat higher number of mild/moderate side-effects. While for most people this isn't a big deal (I have Moderna myself), it makes me think for people with autoimmune disorders, Pfizer (with the smaller dose and lower liklihood of side-effects) may be preferable? There also seems to be more anecdotal data about Pfizer on site like this one.

I have no idea if that's a medically valid theory, I'm curious if anyone's doctors have brought this dosage/side-effects distinction up? As I mentioned in my last post, I'm trying to help my girlfriend decide if she should get the vaccine right away, and if so, if we should hold out for Pfizer or take the first offered, which could be Moderna. While I agree with most experts that vaccine shopping is a problem, a rare autoimmune disorder seems like a reasonable excuse to do so.

(Edit: then again, just saw another post linking to Drug Safety Research Unit that suggests Moderna may actually have lower incidence of thrombocytopenia events, for example: "Overall, there have been 42 thrombocytopenic events reported following Pfizer/BioNTech vaccine (38,426,567 Pfizer/BioNTech vaccines administered in total in the US to 16 March 2021 and 18 events reported following Moderna vaccine (36,694,414 Moderna vaccines administered in total in the US to 16 March 2021)")

Hi, Graeme, how long has your gf been waiting to see a hema? When I was first diagnosed, it didn't take long for me to see my hema doc.
Of course, it could be different Province to Province.
As for vaccines, I got the Astra/ Zeneca one. Got a blood test a couple of days later and didn't have any change in counts.

Graeme what is your girlfriend's count - symptoms? Very sorry she has to wait so long to see a hematologist. I know 2 people who have started cancer treatment - 1 just finished her 1st course of chemo the other is starting immunotherapy, the friend with chemo was told to wait.

My shots were both in January, Pfizer - no problems {I've had ITP since 1989). I had no choice even though they were given both Moderna and Pfizer - my card had Pfizer on it so that's what I got.

My doctors said that since I have no co morbidities (diabetes, overweight, asthma, high blood pressure etc) it is more likely that I would have a bad reaction to the vaccine than get a bad case of Covid. It is true after all that 99.7% of people who get it recover. My PCP is a functional medicine doctor so she already has a list of vitamins and other medicines to take if you get the virus. I also don't go to crowded restaurants or concerts where it is more likely to spread. And we live in a somewhat rural area that has not been overwhelmed with cases.

MelA wrote:

Graeme what is your girlfriend's count - symptoms? Very sorry she has to wait so long to see a hematologist. I know 2 people who have started cancer treatment - 1 just finished her 1st course of chemo the other is starting immunotherapy, the friend with chemo was told to wait.

My shots were both in January, Pfizer - no problems {I've had ITP since 1989). I had no choice even though they were given both Moderna and Pfizer - my card had Pfizer on it so that's what I got.

CindyL wrote:

Hi, Graeme, how long has your gf been waiting to see a hema? When I was first diagnosed, it didn't take long for me to see my hema doc.
Of course, it could be different Province to Province.
As for vaccines, I got the Astra/ Zeneca one. Got a blood test a couple of days later and didn't have any change in counts.

Sorry what I said was a bit misleading: she's previously met with a hematologist in another country and was diagnosed properly. She's stable at above 50 without medication, which is why I think she's somewhat low on the priority list to meet a specialist (I think her appointment was booked for 3 or 4 months after getting the referral). There's nothing urgent, it just would be nice to be able to discuss things like vaccination with an expert instead of general doctors. This forum has been quite helpful though to understand what others have heard from their hematologists since most of the advice (ananta's aside) has been pretty consistent.

ananta wrote:

My doctors said that since I have no co morbidities (diabetes, overweight, asthma, high blood pressure etc) it is more likely that I would have a bad reaction to the vaccine than get a bad case of Covid. It is true after all that 99.7% of people who get it recover. My PCP is a functional medicine doctor so she already has a list of vitamins and other medicines to take if you get the virus. I also don't go to crowded restaurants or concerts where it is more likely to spread. And we live in a somewhat rural area that has not been overwhelmed with cases.

Interesting, most of what I've read online (and heard from a general doctor) was ITP was itself an increased risk for a bad Covid outcome. Your hematologist had the same assessment?

My hematologist that I met with in the hospital (from the same practice as my personal dr.) advised me not to get the vaccine also. I should do a follow up office visit soon.

For what it is worth, I think I got the Covid in Feb. 2020. I had all the signs of pleurisy but without coughing or fever. ( Pubmed mentions cases when pleurisy was the first sign of the virus pubmed.ncbi.nlm.nih.gov/32706769/) I went an acupuncturist and was over it very quickly. A lot of the nurses in the local hospital and friends all seem to agree that they had it back in December - Feb. 2020. It was before you could be tested.

ananta wrote:

My hematologist that I met with in the hospital (from the same practice as my personal dr.) advised me not to get the vaccine also. I should do a follow up office visit soon.

I would definitely follow up. Covid has lots of potential negative affects outside of death (long covid as well as a laundry list of other long-term complications). Are your counts currently running extremely low, like in the single digits or teens? If they aren't, I'd be highly motivated to go get protected from all of these potential negative outcomes, which in my mind are far worse than a potential platelet dip that might not even occur. Best of luck with whatever you decide!