For ITP patients Johnson & Johnson vs Moderna/Pfizer

Hello all,
I'm eager to be vaccinated against COVID-19, and greatly appreciated the recent panel put on by the PDSA that was very informative on vaccine safety. I still find myself a bit cautious as my own emergence of ITP was so recent. To make a long story short, I am a 26 year old male who ended up in the hospital December 30th/31st of 2019 after a respiratory virus with a platelet count of 5 and petichae. Early 2020 was a rough patch with dexamethesone, long-term prednisone, Rituxan, and a scary cardiac reaction during a Rituxan infusion while taking antibiotics for an H. Pylori infection. Thankfully though, since late summer my numbers have generally floated around the 120-130 range and I've been off all medication since mid-late January.

There has always been a sort of nagging question with me that COVID may have been what caused my ITP as I had been flying through several airports immediately before my illness, though of course there is no way to prove. As it seemed to have been triggered by a viral infection, I still find myself hesitant to receive the vaccine, though the recent panel has made me feel better about taking the leap. I have heard that the initial research/opinion is that currently the Johnson & Johnson vaccine reports less adverse effects than Moderna/Pfizer, but I was wondering if there was any substantive reasoning that one type of vaccine might present less of a risk to ITP patients than the other? (I know that J&J is linked to an adenovirus, while the others seem more "pure" mRNA?)

My current hematologist has recommended that I get the vaccine and have my numbers checked a week/2 weeks after each shot, but I still find myself hesitating, or wondering if a certain vaccine may be a "safer bet" than the other.

Happy to hear that you've had great counts since your initial difficulty at the time of your diagnosis. I don't think you are going to find much data regarding a J&J vs. Pfizer/Moderna comparison. J&J just really hasn't been administered for more than a few weeks in the US, and in relatively small numbers at that, so I'm assuming that the data for ITP patients receiving J&J would be quite sparse to nonexistent. I would expect that you would be waiting a long time to get some kind of initial data regarding "which one is better for ITP." For me, personally, the risk of holding out on vaccination and potentially contracting covid (almost a guaranteed platelet nightmare, not to mention the other horrific outcomes) was faaaar greater than the risk of a potential platelet crash post-vaccination.

You can see the covid vaccine thread on these forums to read about some successful experiences with vaccination. I myself have received both doses of Pfizer and did just fine. I did have some count dips (down to 18 after the first shot and down to 23 after the second shot), but my body recovered on its own after both dips. Don't let my numbers scare you too much; I've had ITP my whole life, and I run low in general (more-so the older I get).

And, don't quote me on this, but I think that the PDSA recording with the doctors did make some mention of the Pfizer/Moderna vaccines coding only for the spike protein, but the J&J vaccine having other protein targets included, which may trigger more of an immune response? I could be recalling incorrectly, and even with that being the case, no one has any data on whether a single protein versus multiple has any affect on ITP related responses.

Yankee if covid was the trigger for your ITP wouldn't you have covid antibodies? Have you been tested for them?
I'm not sure you would be able to pick & choose which vaccine you get, it would be whatever they have at the site you are told to go to - I got the email to schedule an appointment and when I got there they were giving Moderna and Pfizer, on the card with my name etc was listed Pfizer and that's what I got. They had X # of vaccines for Moderna and X # of vaccines for Pfizer so I doubt there was an option to change. And to be honest with you I had no qualms or 2nd thoughts about getting the vaccine, in fact I kind of felt like I won the Power Ball when my number came up to get it [ I've had ITP since 1989 ]

Good luck to you on whatever you decide.

Thank you for the response momto3boys! Your experience is actually very helpful to hear. I do remember one of the doctors in the panel noting that some ITP patients had a dip, but that it usually recovered within a week or so. I've had my normal Flu vaccination this past year as well, and that didn't seem to cause any problems. I also remember one of the doctors discussing the J&J vaccine having multiple protein targets, so that is a good point. Of course, so much is unknown (even with what caused my own diagnosis). I am leaning towards getting a vaccine soon, just sort of summoning up the courage to take that leap! After being hit with ITP so suddenly, and then having adverse reactions to treatment, it makes me more hesitant and jumpy about things that otherwise I would have normally not hesitated at all on, if that makes sense?

MelA wrote: Yankee if covid was the trigger for your ITP wouldn't you have covid antibodies? Have you been tested for them?

I actually had been tested for antibodies sometime in later April 2020, and it came back negative. I was being treated temporarily by a different hematologist at that point, and she didn't seem to trust the accuracy/reliability of the test at that point (she was of the opinion though that whether or not I had COVID wasn't really pertinent to treatment). If these tests are known now to be more accurate, I may trust that test a bit more and feel more confident! Thank you for sharing your thoughts and own experience.

Yankee46 wrote: I am leaning towards getting a vaccine soon, just sort of summoning up the courage to take that leap! After being hit with ITP so suddenly, and then having adverse reactions to treatment, it makes me more hesitant and jumpy about things that otherwise I would have normally not hesitated at all on, if that makes sense?

I certainly understand the caution; it's good to understand your options the best that you can before making a decision.
In reading your history with ITP, I think it's worth noting that you fundamentally only tried two treatments: steroids (of different flavors) and Rituxan. Steroids often only provide temporary count increases (and only for those who are responsive to them), and are not generally favored as a long-term ITP treatment. Rituxan works well for some, but, again, is only ONE option.

There are so many modern treatments that you haven't explored (Promacta/Eltrombopag, NPlate/Romiplostim, Tavalisse/Fostamatinib, Doptelet/Avatrombopag, etc. etc.) ! It's great that you haven't explored them because your counts rebounded nicely, but I wouldn't fear your ITP coming back more than getting COVID. There are sooo many treatments on the table that you could try in the event that you do experience a temporary count drop. I'm sure your initial bad experience is understandably fresh in your mind, but most people eventually find a treatment that works for them with a little bit of experimentation. I hope you take the plunge with the vaccine and maintain your normal levels

Hi, what were your counts before they dropped to 18 and 23?
Thanks.

Mstonehocker wrote: Hi, what were your counts before they dropped to 18 and 23?
Thanks.

Well, a few weeks prior to my first shot, I had a count of 17 (I was having some symptoms at the time, so went for lab work). I did the four day course of dexamethasone and my count spiked to 232, which is waaaay higher than any count that I've had in the last 15 years probably, lol.
After the first dose of Pfizer, I had my dip to 18, but then recovered to 52 by the next week (a normal to high count for me). After my second shot, I dipped to 23, but then recovered to 44 (again, a normal count for me).
Relative to my current count range, the dips were small and produced no bleeding or other symptoms. Overall, I did much better than I expected! Have you been able to get the vaccine yet?

Just a quick update for those interested: had my platelets checked March 29th and they were at a really great 153. Decided based on the information at Drug Safety Research Unit that seemed to indicated Moderna may have a lower incidence of thrombocytopenia incidences to hedge my bets and get a Moderna vaccine. Got my first shot Friday, April 9th. Had a sore arm and some fatigue over the weekend, but really the worst side effect was my own anxiety about my platelet count (as many of you probably have experienced, questioning whether every spot and dot on your body was really there before or is it the start of petechiae). To my huge relief though, I got my blood checked today and the platelet count was 152! Very grateful for this good result, and to be through one of those nerve-wracking "waiting periods".

A quick update for those interested: got my second Moderna shot Saturday the 15th, just a bit of body aches and fatigue the next day. Got my blood checked yesterday the 25th and to my great surprise my platelet count was 196! The highest it's been without medication since my ITP adventure began! Hope this information can be helpful to folks.

Yankee46 wrote: A quick update for those interested: got my second Moderna shot Saturday the 15th, just a bit of body aches and fatigue the next day. Got my blood checked yesterday the 25th and to my great surprise my platelet count was 196! The highest it's been without medication since my ITP adventure began! Hope this information can be helpful to folks.

Congratulations on your successful vaccination! It's such a relief to get it done.

It looks like maybe you are in remission (if you aren't currently undergoing any treatment). All of your platelet counts are completely in the normal range, which is fabulous. Best wishes for continued high platelets!

Yankee46 wrote: Just a quick update for those interested: had my platelets checked March 29th and they were at a really great 153. Decided based on the information at Drug Safety Research Unit that seemed to indicated Moderna may have a lower incidence of thrombocytopenia incidences to hedge my bets and get a Moderna vaccine. Got my first shot Friday, April 9th. Had a sore arm and some fatigue over the weekend, but really the worst side effect was my own anxiety about my platelet count (as many of you probably have experienced, questioning whether every spot and dot on your body was really there before or is it the start of petechiae). To my huge relief though, I got my blood checked today and the platelet count was 152! Very grateful for this good result, and to be through one of those nerve-wracking "waiting periods".

Thanks for the link, it's interesting because I was expecting the opposite (overall Moderna seems to have somewhat more side-effects than Pfizer, and also delivers a higher dosage of vaccine), but sounds like even with similar vaccination numbers Pfizer has about twice the number of thrombocytopenia events. Given the low overall numbers, hard to know if this is statistical noise or not, but maybe has me rethinking a preference for Pfizer.

A quick update for those interested. In September I had my platelets checked again and they were 150. With the holidays coming up, my girlfriend and I are planning on traveling and flying to see friends and family. With that in mind, we both decided to get Moderna booster shots to be on the safe side. I received my booster shot Saturday, December 4th. Had a rough night of sleep, felt a bit of fatigue the next morning, but no other symptoms (a relief!) I just got my numbers checked today (December 15th) and my numbers were 176! It seems that getting the COVID shot is actually good for my numbers, haha.
Just thought I would share in case this is useful to anyone. Stay safe!

I would do what your doctor said: vaccine and weekly test