ITP after COVID vaccine

[DoNorth]

I've had CLL for about 11 years without issues. I received the first shot of Moderna on 28 January and have been dealing with ITP ever since. They dropped from 110K to 6K. Prednisone, platelet transfusion, IVIG, dexamethasone and now I'm looking at Rituximab. This almost seems worse than CLL!

[RobertSp]

I have heard of this elsewhere. You may not be the only one. Please keep us all informed of your progress.

[DoNorth in reply to RobertSp]

Will do. Exploring Rituximab, promacta etc as second line therapies at the moment. A specialist said my CLL drugs (Venetoclax or Ibrutinib). might help modulate the ITP

[lmh1959]

So sorry to hear that! That’s my concern also, whether to get the vaccine. I’ve been holding stable with my ITP for 4yrs now at 70,000, but worried if my platelets would drop after vaccine!Although I’ve heard of encouraging outcomes from a few ITP patients that had the vaccine.

I pray your platelets bounce back soon!✨

[DoNorth in reply to lmh1959]

Thanks. Me too!

[Anthonyh7]

The following link may be interesting in respect of the Covid-19 vaccines and ITP -

itpsupport.org.uk/images/do... -

The problem is that with all vaccines we all respond differently and so there is no absolutely definite answer as to how we will react.

As ever with these things it is a matter of discussing it in full with our individual specialist as they well know our full medical history and ITP situation.

[DoNorth in reply to Anthonyh7]

Very interesting. This is a great info paper. I passed on my second shot of Covid vaccine and am wondering if I should do it

[CDmom]

Hi DoNorth,That stinks that your platelets dropped so much after Moderna Vaccine. How quick did the drop occur? I have had stable platelets for 3 years after a bad case of ITP from 4/17- 10/17 after a trip abroad. In 9/17 I did ultrasound and homeopathics to kill unseen bugs in my system. Thankfully it resolved the ITP and I amnot on any medicines for ITP and my platelets have been stable since then at 200,000 .

I was fearful about getting the vaccine since my body had ITP in 2017 and I did not want it to spiral out of control again. But I still got the 1st Moderna Vaccine 10 days ago. I have not seen any bruising but have not had my platelets checked yet. I will need to do that especially before the second shot. And I am fearful about the 2nd one too.

I have heard from a PDSA zoom that ITP people are better with Moderna or Pfizer because they are RNA type vaccines vs the Johnson and Johnson vector type vaccine. It is all such a shot in the dark!

I am sending good thoughts to you and all of us to get through this safely and without lingering problems.

[mfuller9220]

I had a similar experience. I have been in remission for over 20 years. After my first shot my platelets began to drop about 30,000 a week for 6 weeks. I met another patient that told me that she cut out glueton and it helped.I tried that and added no more GMOs, and upped my probiotics massively and my platelets jumped up immediately and continued raising a little each week and have been in the safe range for over a month. I just got my second shot and they only dropped 10,000 but are still in the safe range.

[Shoni89 in reply to mfuller9220]

I think being in remission for 20yrs is considered cured?

[hiltonhead]

After taking my first shot of the Pfizer Covid 19 shot a week later I was put in the hospital with a platelet count of 3,000. I received a platelet transfusion and several IVIG treatments. Eight months later I now have Chronic ITP and am on 75 mg of Promacta and 10 mg of prednison. My platelet counts before my Covid shot have all been in the normal range on my yearly physicals.

[PBVBJD]

It is my understanding that the COVID vacinnes do not contain live viruses so they should not trigger ITP. My hematolgist MD bans vacinnes that contain live viruses (flu, shingles, etc.). Three times series Rituxan infusions have "fixed" my ITP and another blood ailment.

[Wintersun007]

the vaccine triggers an immune response does not require live virus to do this

[Wintersun007]

I have had ITP since having second dose of Pfizer vaccine in March 2021. Note most side effects for Pfizer vaccine were worse after second dose, with Astra Zeneca was with first dose. I have had boosters of Covid vaccine with separate flu vaccine monitoring platelets weekly. Interestingly after Covid booster I get a fall followed by a rebound improvement