TOPIC:

Hi, New member here.
When I was 19 (almost 40 years ago), I had mono and subsequent acute ITP. Platelets were dangerously low, I was hospitalized, had my nose cauterized to stop the nosebleed, and a massive bruise stretching from shoulder to wrist due to bleeding after having blood taken. I don't know what I was treated with although I presume it was steroids. There was talk of a blood transfusion but luckily I responded to the treatment and subsequently recovered. I've had no recurrence of ITP since then.
My question is whether I am at higher risk of developing acute ITP after a viral infection such as COVID19 because it happened to me once before and whether I am any higher risk than the general public of potentially developing ITP after the COVID19 vaccination. I'm not sure how to go about finding out this information and would appreciate if anyone can point me in the right direction.

I had acute ITP 9 years ago when I was 35. Hospitalized with a count of 1, stayed in single digits for 5 days until released and have been normal since. Was treated with IVIG and Pred.

I did a lot of research before deciding to get vaccinated. I learned ITP is a very rare side effect from the vaccines (like it is with some other vaccines), but that ITP is a much more common side effect of covid infection. I went with the odds and took the Moderna vaccine. 12 days after my second dose and no signs of anything wrong. I would have been just as confident getting the Pfizer vaccine. Just went with the one that was available.

I don't know the specific answers to your questions, as to whether people like us are at higher risk, but I assume yes to both infection and vaccination, and since the virus starts at a much higher risk for people with no history, I wanted to eliminate that risk as soon as possible.

I also was diagnosed with ITP in 1997 or so with a platelet count of about 60k. I've used natural methods recommended by a naturopath to bring my platelet counts up and either that worked or they just went up for other unknown reasons, and I've maintaining a slightly low to low-end normal level since. I am personally really worried about the COVID shot and risks for those of us with an ITP diagnosis. I also have had negative reactions to a lot of Western medications and take lower than usual dosages of several as a result. Vaccines have been correlated with triggering ITP and it looks like this is currently being downplayed. I'd really like to see how many persons with ITP have had COVID vaccines and how this has impacted people. It feels to me like a bit of Russian Roulette and my gut level sense is that we are at higher risk of side effects. Moderna, Astra Zena and Pzier have all had incidents where people who got their vaccine got ITP immediately or soon after and several have died of brain hemorrhaging. I read somewhere this may be a reaction to some of the ingredients that emulsify the nano-lipids used by Pzier and Moderna. I don't know if Astra Zena uses this. I haven't heard anything yet around JnJ vaccine but will be researching this. I qualify for shot now and want to get vaccinated but don't want to die from the vaccine so am trying to find out as much as I can and find this nerve wracking.

I guess my perspective is that ending up with COVID (which will almost surely negatively affect my ITP/platelet count) and ending up in the hospital/on a ventilator has a lot more of a sense of "Russian roulette" than getting a vaccine.

I am only aware of one death from ITP contracted post-vaccination (the OB/GYN in Florida), and in reading about his case, the doctors who are ITP experts didn't really get called in to consult until it was too late. They only tried platelet transfusions/IVIG/steroids on him (if I am recalling correctly). They didn't get to him in time to try some of the more modern ITP treatments like Promacta/NPlate/etc. Lots of doctors learned from his experience, and they call in experts much earlier in those few situations that are similar to his.

The handful of other patients who contracted ITP post-vaccination (a MINISCULE number compared to number of vaccinations administered worldwide) recovered well from their extreme platelet crashes when experts like Dr. Bussel, etc. consulted on their cases and recommended appropriate ITP treatments. Additionally, there was a recent webinar talking about some of the early data collected from ITP patients post-vaccination, and things seem to be going really well for ITP patients as a whole. Some people have count increases, some remain the same, and some experience a count dip (which then subsequently resolves). I haven't heard of any deaths of patients with pre-existing ITP after receiving the vaccine.

For me personally, the risks associated with contracting COVID FAAAAAAR outweighed the risks associated with vaccinating while having ITP. I am happy that both of my shots went well (I was in the group of patients with pre-existing ITP who experienced a count dip, followed by a rebound a week or so after the shot). I would do it again in a heartbeat, even if I knew that my counts would crash to zero. It's much easier to treat even a severe count crash than it is to treat severe covid. You'll have to make your own decisions about what you are more comfortable doing in your situation, but I highly recommend watching the PDSA webinar about vaccines and ITP. It's vey informative and has a good amount of initial data.

Rose - I got my 2 shots and had no problems whatsoever - I am thankful to be vaccinated!! I've had ITP since 1989 and when I got the call to make the appointment for the vaccine I felt like I had won the powerball. For me the vaccine would have been worth a drop in platelets in order to avoid a ventilator, permanent damage to heart and/or lungs, death!! We all have to do what we feel is right for our own body - it is your decision whether to vaccinate or not!!

As to Russian Roulette - we all play that every day when we get out of bed, just as those people in Boulder Colorado did yesterday, got out of bed later went to the grocery store and 9 were murdered & also a policeman. May they rest in peace!!

Good to hear you had no issues with your shots, Mel. Steven and I go tomorrow.
Hadn't heard about the shooting in Boulder! That's terrible! Those poor families.

CindyL wrote:

Good to hear you had no issues with your shots, Mel. Steven and I go tomorrow.
Hadn't heard about the shooting in Boulder! That's terrible! Those poor families.

Good luck Cindy! Keep us posted.

Thinking of you & hubby tomorrow Cindy! All will go well & platelets stay good!
Anyone I've heard from who had side effects from their injections said it was worth it!

Thanks for your reply. That really reassures me. I actually called Johnson and Johnson to inquire on whether there were any ITP related deaths or
severe reactions with those of us who have pre-existing ITP diagnosis and was told they couldn't give me that information and that my doctor (who is a P.A. as I no longer have a hemotologist) would need to call to get any information about this. The pharmacist whom I spoke with wasn't sure that they would yet have the data available as of course they would have to investigate cases and determine whether it was related to the vaccine. What concerned me most is that Pzier and Moderna were saying that the ObGyn death wasn't conclusively related to the vaccine. Yet this man was totally healthy and his ITP started pretty much immediately after the vaccine administration. I started wondering how many more situations like this are they going to say it isn't vaccine related when it sure looks to my like it was most likely related or likely caused by the vaccine. If it wasn't, I want to know how was this determined. What criteria did they use to make this determination? Then my mind starts thinking....there could be a lot more unreported cases of people hospitalized with severe ITP symptoms who are not dead but very impacted and they are saying these too are not 'conclusively related' to the vaccine. I wish they would be public and transparent about what criteria they are using to determine this and open about how many additional cases there truly are of persons who have to be hospitalized immediately following the vaccine or within a month after when adverse reactions are most highly likely. Also, since the mRNA is new technology and due to the pandemic there has been rapid release with emergency FDA approval there is zero longitudinal studies on how these vaccines may in the future cause a potential hyper-immune reaction next year or 5 years down the line.
I'm just venting my fears here....so that they aren't inside my head. After my flu shot this year I had flu symptoms for weeks and haven't felt well since November, and I've had adverse reactions to other Western medications so I am trying to not have the 'treatment' be the cause of my death or further disability. I also don't want to be over-reactive and realize that I am showing an abundance of fear. In the end, I plan to still get the vaccine...maybe even this week because logically getting COVID is more of a risk for me than the vaccine and the more I hear of people with ITP who have been ok getting the vaccine the better I feel! I haven't seen the video yet but will look for it! Thank you so much!

May all go well for you Cindy. I look forward to hearing how you are doing. Take good care!

The UK ITP Association is collecting information from its members about platelet counts before and after vaccination but of course it will take time to get results. For me, I had a count of 91 before vaccination and 103 a couple of weeks later, so roughly the same.

Hi JJ,
Counts seem not affected at all ..Which vaccine did you get

I've had 1st dose (Pfizer). 6 weeks prior to jab count was 58 which about my norm. I had no reason to think it would be low pre vaccination. 2 days post jab I had my routine test and count came back at 19. A fortnight later with no change to meds it was back up to 42.
I am going to have a test prior and post my second dose as my GP is interested to see what happens.
Even if pre count comes back low I will still go ahead with the jab and take a bolus of prednisolone. The option of contracting Covid and ending up ventilated on ITU and/or long covid is a none starter as far as I am concerned.

I did watch the Webinar and that was very helpful. The one doc from Cornell had mentioned in this video that as far as reactions to vaccinations go that likely the messenger RNA shots would be a better choice because they introduce only one foreign protein while JnJ would introduce several.

I'm still undecided but still leaning towards the JnJ since it uses the adenovirus vector which has a longer track record of years of use in vaccines so there are less 'unknowns.' Also, it showed better efficacy against the S. African variant. It would sure be great if an updated vaccine or an immediate 'second' vaccine to better protect against variants could happen during the first shot!

I'm also thinking about potential hyper-immune reactions down the road a year or two from now from the new vector RNA vaccines. One member of the FDA voted against emergency approval of the mRNA vaccines for this reason. I personally have had adverse/allergic reactions to too many meds and also have to sometimes use an inhaler due to an esophageal disorder that also impacts my larynx and sometimes affects my breathing. It looks like I may be eligible in a couple weeks for the JnJ vaccine due to a small 'at home' vaccine program that I am not perfectly a match for but may likely qualify for. While I could get the Pzier now and I'm still considering this, I'm leaning towards the JnJ if I for sure qualify for this.

I take promacta daily to keep my count at around 120,000. I got both doses of the Pfizer vaccine and my platelet count dropped. I dipped to 55,000 about a week after the second dose. I am now a good full 2 months post my second shot and I’m still only at 69,000. My doctor and I are monitoring my counts. We have not yet discussed changing my promacta dose.
I hope this helps!

RR01 wrote:

Hi JJ,
Counts seem not affected at all ..Which vaccine did you get

Pfizer.

RoseHeartSmile- Thanks for sharing. If you haven't felt well since the flu shot, I totally understand why you would be hesitant to get an even stronger vaccine. Did you get checked out after you had continued flu-like symptoms from the flu vaccine? I only mention it because other autoimmune disorders can go along with ITP. One common symptom of the autoimmune disorders treated by a rheumatologist is feeling like you have the flu, aches, chills, fatigue. There are blood tests to check if you are having wide spread inflammation (C-reactive protein) also drugs and lifestyle changes that can help calm the immune system down.

I got the Moderna vaccine. The first dose did not affect my platelet count. Counts were 19 before the vaccine and 18 afterwards. The second dose dropped my counts to 9. I haven't had counts that low in 4 years so I believe it was the vaccine. I'm on Nplate which was increased and my counts came up. The second dose of Moderna gave my aches, fatigue and chills for a couple days. Along with ITP, I also have Lupus/Sjogrens autoimmune disorder and my immune system tends to over-react to some vaccines. I had mild symptoms- fatigue and overall unwellness for about a week after the initial 2 days of Moderna vaccine symptoms. That was after the second dose- the first dose was no problem.

I work in health care and have noticed (small sample) that the people who have gotten the Pfizer vaccine seem to have fewer side effects. Many people have had no side effects from the second dose of Pfizer.

I've also been diagnosed with CFIDS and fibromyalgia and have the usual arthritis from wear/tear....so it's like I perpetually have sore throat if I do
a bit too much then get wiped out after doing any short travel or more than usual (which is very little!) I didn't go to the doc after the flu shot but just noticed
having a temp of about 100, chills, and new headache for about a week and didn't really correlate that with the shot until reading others sometimes have this. I'd had a big golf-ball size bump from the flu vaccine one year that lasted a month so I didn't have any vaccine for about 5 years until this year. Later someone said this may be that it was injected incorrectly and this caused the bump!

I guess what concerns me is like the ObGyn in Florida where the vaccine likely triggered ITP for him is so downplayed that Pzier instead of saying it was likely the vaccine but they would have to do further investigation say the opposite, that they didn't think the vaccine had anything to do with his death. Then I read from a friend of his that the doctor's wife had to fight to get an autopsy done on her husband. That is deeply concerning. If there are lethal side effects for some people this needs to be acknowledged promptly by the pharmaceutical company and not summarily dismissed as 'not related.' Since vaccines are known to have associations with triggering ITP (as well as COVID infection is known to) it only makes sense that any substance that triggers an immune response will in some cases most likely trigger ITP in at least a small number of individuals.

Do you have any info from 'in the field' with J n J vaccine? I went on VAERS database at FDA and saw 350 cases of adverse side effects that sounded really scary
like people going unconscious, not knowing where they were, having racing heart and sudden blood pressure elevation. Of course reading only adverse side
effects is only looking at the negatives.

Rose- Okay, it makes sense that you feel like you have the flu/sore throat if you have been diagnosed with Chronic Fatigue/ Immune disorders. When I have a rheumatic Lupus/Sjogrens flare up I feel the same way as I did after the covid vaccine. I don't usually get a low-grade fever like you mentioned but I feel like I have a fever- if that makes sense. Also body aches, myalgia, neuralgia, fatigue, butterfly rash, wide-spread inflammation. I went back to work 3 days after the vaccine which was too early, should have taken more time off.

Absolutely I believe the Pfizer vaccine caused the doctor to have severe ITP that caused his death, I don't doubt that for a moment. I thought it was shameful the way Pfizer dismissed his death and invalidated the wife. Still Covid has caused 500,000 deaths in the US, plus many survivors struggling to regain their health. When I consider that there have been over 40 million vaccines given in the USA, the adverse reactions seem small. Even though I have personal risks with my immune system over-reacting to vaccines, I was first in line when my turn came. I just felt strongly that if I got Covid, I wouldn't do well. I think I would likely have chronic problems from it like so many others.

The only one I know who has gotten the Johnson&Johnson vaccine is my brother. He is kind of anti-vax/ afraid of vaccines, doesn't get the flu shot and doesn't trust the medical system at all. He also is over 65, has had a heart attack and smokes so wouldn't do well with Covid. He was offered the Pfizer but doesn't trust the mRNA. My sister and I were able to talk him into the J&J, he got it 5 days ago. He said he was dizzy, slight nausea and was very concerned about his side effects. But also he mentioned he went swimming and worked on my mother's house, so I sense that it perhaps wasn't that bad.

I follow a UK forum for Lupus, CFS. They talk a lot about the Covid vaccine with rheumatic/immune system disorders. Many have gotten the Pfizer and AstraZeneca on that forum. healthunlocked.com/lupusuk/posts/145396560/has-anyone-had-a-lupus-flare-after-having-the-covid-vaccine

People get so het up over vaccination side effects. Unless it is an adverse reaction e.g. developing ITP or anaphylaxis then generally it is a good sign that the immune system is responding to the vaccine.

I had both Pfizer shots in February. I had a couple of periods of feeling really tired after the second shot--nothing serious. No change in platelets. I'm on Tavalisse. Psychologically, I feel much better having had the vaccine. I do feel safer.

So glad you to hear that all went basically well for you. Looks like you have been through the ringer with your health. Wishing you continued wellbeing!

I agree .My hematologist convinced me to take the vaccine.She felt is is worth the risk (low risk) as opposed to getting covid and possibly ending up with a stoke or worse. Good to hear counts can rebound with time.

I had Janssen vaccine Wednesday afternoon. On March 7th my platelets were 142,000 and April 7 hours before vaccine were 170k. The day after vaccine my platelets were 162. So not much of a drop. Assume this is within a 'normal fluctuation of daily platelet numbers that happens to everyone. Does anyone know if that is the case?
I looked at some other blood markers related to overall immunity the day after my vaccine that may be related to ITP: Lymphocytes dropped from 1.7 down to 0.9. Neutrophils went up from 1.6 to 2.9, White blood cells though still a little low went up from 39 to 44.Hemoglobin went up from 13.3 to 13.9. Hematocrit went up from 40.7 to 42. Red blood cells went up from 4.15 to 4.27.
Here were my side effects from Janssen vaccine:
About 20 minutes after the vaccine for about 10 minutes had a hot forehead and got red faced. Was waiting near site so no thermometer to test temp. Also, about that time had minor neurologic symptom of numbness in underside of tongue that after a couple hours became a tingling of right half of my tongue on the anterior section. It is like when you first get numbing agent from dentist where there is tingling. Still have this four days later, but have had this happen when starting other Western pharmaceuticals also when initially taking them.
Evening of shot was more fatigued but next day had more energy. 32 hours after shot was hit with biggest side effect. Developed strong muscle pain from injection site into shoulder joint. Had had bursitis from tournament tennis 45 years ago and had then a cortisone shot but haven't had that level of pain in shoulder for many years. Took pain medicine that normally works for strong pain but it didn't phase this. Called nurse who said 48 hours window is when vaccine reactions occur and she'd been getting a lot of calls about the Janssen vaccine side effects (Just released in WA State and a lot of people are getting it!). Nurse suggested more pain medicine which I did in addition to my sleeping med and I was able to sleep. Next morning still had stronger than usual pain and took a generic Celebrex, stayed in bed 1/2 the day and when I got up the pain was reduced. Now at day 3 after medicine pain in shoulder is down to a 1-2 level. All in all that was for me not a big deal and I am thankful to have actually had the choice between JnJ, Moderna or Pzier and that I chose JnJ for less likely to have hyper-immune reactions given my history of ITP, allergies, fibromyalgia and CFIDS. So glad to be vaccinated!

RoseHeartSmile most likely a hematologist wouldn't even consider going from 170k to 162k a drop.

Mel
Mine certainly wouldn't .

I got my second Moderna shot on Friday, April 9. I am on Promacta (50mg daily), Here are my counts and timeline:
Just before the first Moderna shot (3/19/21): 230k
Two weeks after the first Moderna shot: 180k
Four weeks after the first Moderna shot (last Friday, just before the second shot): 130k
I had a terrible reaction to the second shot yesterday. I felt better this morning, but I woke up with petechiae on my hands, arms, and legs. I usually don't get them until I'm well below 20k, so I let my hematologist know. I suspect another blood test is in my immediate future, as well as a possible increase in my Promacta dosage.

Update: two days after my second Moderna shot, my count has dropped to 8k and I’ve begun to bleed. I’ve been hospitalized.

mhprice- I'm really sorry to hear you had a crash and have to be in the hospital. That was an extreme drop in numbers. Hopefully your counts will bounce back up soon. take care and good luck!
I'm on Nplate and also had the Moderna vax. My counts dropped to 9 but they were already low at 19 so not such a big drop. My dose of Nplate was increased so my counts came up to 37 fairly quickly and then up to 47. I do believe that was partly from the dose increase but also a natural rebound when my immune system calmed down (1-2 weeks later).