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TOPIC: No Response to IVIG, ACK !

No Response to IVIG, ACK ! 7 months 2 weeks ago #64535

  • Hal9000
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I wanted to post this list of folks here on PDSA with essentially a flat line for a IVIG response. A response where counts go up for 1-3 days then return to baseline. The hope is to gain insight in what could be going on and critique what does and doesn't work for this population. From my ITP treatments table, this IVIG response is row 2. All those listed have achieved full or partial remission via Promacta or Nplate treatment.

name . . . . . . . . . . . . . . . . ., steroid response , full / partial remission , ITP start / relapse , ITP trigger , exercise

robert1959 . . . . . . . . . . . . , no , full , Feb 2014 , unk , unk
tacmom . . . . . . . . . . . . . . ., no , full , Feb 2007 , flu , cheerleader basketball
Grammalinda1@msn.com , no , unk , Jun 2010 , unk , unk
Caro9 . . . . . . . . . . . . . . . . , no , full , 2007 / 2013 / Feb 2017 , many vaccines , marathon runner
mjocusa . . . . . . . . . . . . . . , no , full , Nov 2011 , flu vaccine , unk
cyclone87 . . . . . . . . . . . . ., no , full , Jan 2012 , unk , high energy
MatthewR . . . . . . . . . . . . ., no , full , Aug 2014 , Bactrim , unk
ACE09CLE . . . . . . . . . . . ., no , full , 2007 / 2011 / 2014 , unk , unk
Ann . . . . . . . . . . . . . . . . . ., yes , part , Dec 2005 / Mar 2018 , flu vaccine , long walks
EmilyK . . . . . . . . . . . . . . . ., yes , part , Jan 2015 / Nov 2016 , unk , NY marathon runner time 4:48
jayinchicago . . . . . . . . . . . , yes , part , ?Aug 2016 , unk , weights

I notice the following things about this population:
- all eventually achieved remission via Nplate or Promacta treatment
- all those with no steroid response have full remissions, relapses are full as well
- all those with steroid response have partial remissions, relapses are partial as well
- all relapses lead to succeeding remission with treatment
- many had ITP start or relapse during winter / flu season (Nov,Dec,Jan,Feb), a noticeable exception is MatthewR
- likely all had the flu or the flu vaccine as ITP trigger, a notable exception is MatthewR
- likely all exercise often, a notable exception might be MatthewR
- likely MatthewR had Bactrim antibiotic (which blocks Folate/B9) as his ITP trigger, in summer months, and doesn't exercise often
- there is one child in the group (tacmom) and the rest are adults
- the population of non steroid responders is about 3 times the size of steroid responders

Treatment note for this population. If the following treatment was given, it failed:
- Splenectomy
- Rituxan
- WinRho
- Cyclosporine
- Dapsone

My thoughts. I wonder if MatthewR's ITP trigger from Bactrim antibiotic is the key here. That Folate (aka folic acid / vitamin B9) deficiency during the body stresses of exercise and the flu is the cause of ITP in this population.
"Successful Treatment of Chronic Refractory Idiopathic Thrombocytopenic Purpura with High Dose Folic Acid"

Your thoughts?
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64536

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Hal, this is fascinating. One of the hematologists I spoke with said "the therapy we use is often diagnostic," though he meant it in terms of differentiating between ITP and other diseases.

One question; do you also have data on the date of diagnosis (or even better emergence of symptoms) and date of first treatment?

As for IVIG and vaccines, just a PSA: technically, one shouldn't get any vaccines for 11 months after the last dose of IVIG, because the IVIG may "eat up" the vaccine agent(s), and all you may be left with are the other ingredients, preservatives, etc.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64542

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Maria:

I've heard doctors say that...that if a person responds to IVIG or Prednisone, the person must have ITP. I wonder what they say if the person does not respond to those two drugs? The assumption is still ITP unless proven otherwise, and I rarely see any other diagnosis given. Maybe a handful over the years ended up with something worse but they usually had a few other things going on.

I agree with the no vaccines after IVIG but I have not seen anyone follow this at all. The same is true for Rituxan and vaccines and that is ignored all the time.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64543

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Hal:

I believe that vaccines and antibiotics play a huge role in ITP. It's a known listed side effect for both. There may be other things going on in the body too that set it up for the perfect storm. Viruses, genetics, exposure to toxins, etc.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64544

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Sandi, my son's pediatrician and hematologists both told us no vaccines after IVIG for 11 months, hopefully they are not the only ones following this!
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64545

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Maria - the general rule is to vaccinate no matter what is going on with the patient. Not just here, but everywhere. That is one of the problems that I have with vaccines. They are only tested in healthy subjects, but are always approved for everyone no matter what the health status. I have not heard of anyone here, ever, not vaccinating due to having IVIG. Like I said, Rituxan is similar but it's done anyway. I'm glad your son's doctors are on top of things.

Anyone ever stop vaccinating for 11 months after IVIG?
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64548

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Okay Hal,
I did not very much steroid response even at 80mg prednisone I had 30 for a month then lost it.

One more thing I want to say is that in March 2017, I started taking BCAA supplement with Folic Acid and entire B Complex. MatthewR's trigger made me reconsider my situation.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64556

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Thanks for the responses. Lots of ideas spinning off.
LOL, I can see myself being a little more religious about taking B9 from this point forward.

maria3132 wrote: Hal, this is fascinating. One of the hematologists I spoke with said "the therapy we use is often diagnostic," though he meant it in terms of differentiating between ITP and other diseases.

I was stunned myself. This Bactrim thing is new to me and I need to do some due diligence on it. That linked study at the end about folks responding, sometimes strongly, to high dose Folic Acid was also new to me.

One question; do you also have data on the date of diagnosis (or even better emergence of symptoms) and date of first treatment?

All I have is what folks post. I guess when I made the 'ITP start' category, the implication is: when was the emergence of symptoms. With some folks ITP comes on slowly - like me. I guess that is another observation of the population. That ITP onset was sudden. Sudden and profound enough so that a user can identify an approximate date.

As for IVIG and vaccines, just a PSA: technically, one shouldn't get any vaccines for 11 months after the last dose of IVIG, because the IVIG may "eat up" the vaccine agent(s), and all you may be left with are the other ingredients, preservatives, etc.

Hmm, ok. Didn't know that. The terminology though. I would have thought IVIG would block the immune system from reacting/responding and thus forming memory of the evil invader.

Sandi wrote: Hal:
I believe that vaccines and antibiotics play a huge role in ITP. It's a known listed side effect for both. There may be other things going on in the body too that set it up for the perfect storm. Viruses, genetics, exposure to toxins, etc.

Ha, the affects of vaccine and antibiotics is certainly rising to the surface in my mind. When I see someone report a vaccine to X gave me ITP, I just think they got a small case of X. Or, does that not make sense? That the vaccine was a dead virus and that can't occur?
The population of ITP'ers is small here, but it suggests only flu or flu vaccines threaten this ITP type. So, in my mind, how row 1 folks come in here with a lost IVIG response and become row 1 and row 2 afflicted is easy now. They got the flu.
Also. I wonder how many other ITP types have Folate as a trigger ingredient. It could easily be no other (confined to liver) or all others (characteristic of immunity).

jayinchicago wrote: Okay Hal,
I did not very much steroid response even at 80mg prednisone I had 30 for a month then lost it.

One more thing I want to say is that in March 2017, I started taking BCAA supplement with Folic Acid and entire B Complex. MatthewR's trigger made me reconsider my situation.

Right. I've noticed the somewhat weaker steroid response with both you and Emily. Most folks (row 1) have a stronger response. Since I flat line steroids, categorizing steroid responses is harder for me.
Folic Acid since March 2017? Haha, he shoots, he scores. If it were me, I would NOT be expecting an ITP relapse anytime soon.
Congratulations. You're the first guinea pig for this thread.

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No Response to IVIG, ACK ! 7 months 2 weeks ago #64558

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Hal I wish you would consider including people who have never had IVIg. Over here in the UK it is best practice to use it only for life threatening bleeding. I can't be the only person your table doesn't apply to.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64561

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Hal - you might be seeing more correlation with the flu vaccine because that is generally the most used vaccine in adults. Other than shingles and tetanus, adults do not get too many vaccines. As for the live vs inactivated, an inactivated vaccine has plenty of adjuvants that could cause a problem. All vaccines are inflammatory; they wouldn't work if they weren't and that is the purpose of the adjuvants.

It's hard to gauge whether or not ITP comes on slowly or not. Some people just happen to catch it before counts are too low. That happened to me. I went to the Dr because I had been feeling exhausted after a cold and weeks later, couldn't shake it. He did a CBC and my counts came back at 50k. A few weeks after that, they were 8k and I had bruises all over me. If I hadn't had the CBC at 50k, I would have thought that it hit fast. My counts could have been going down for a long time and I didn't know it. Many people only find out when they have symptoms that warrant a CBC.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64567

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I had an horrific bout of sinusitis. 6 weeks after recovery I had a an accident in the garden involving me tripping over the cat and crashing into the wheelbarrow which then fell and landed on my leg. The resultant bruising was unbelievable never had anything like it before. Off to GP. platelet count of 12. Off to hospital.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64583

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mrsb04 wrote: Hal I wish you would consider including people who have never had IVIg. Over here in the UK it is best practice to use it only for life threatening bleeding. I can't be the only person your table doesn't apply to.

Anne, there is no way to make any conclusions with just a steroid response.
I can only guess that you are row 1 and 2 with 1 being dominant - as that combination seems to be common. Are you taking any Folate/Vitamin B9? Maybe take that for a few months and see if counts slowly rise? I think it is better to take Folate rather than Folic Acid.
Curious, you mentioned before that:

Tried Azathioprine that worked initially but had dreadful side effects and stopped working fairly quickly.
Next tried mycophenolate same story.

Which of the two worked better?

mrsb04 wrote: I had an horrific bout of sinusitis. 6 weeks after recovery I had a an accident in the garden involving me tripping over the cat and crashing into the wheelbarrow which then fell and landed on my leg. The resultant bruising was unbelievable never had anything like it before. Off to GP. platelet count of 12. Off to hospital.

Ok. I can only wonder that the reason why it took 6 weeks for your immune system to figure out the correct response is because of a possible Folate deficiency.

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No Response to IVIG, ACK ! 7 months 2 weeks ago #64585

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Hal
Why is there no way to make any conclusions without including IVIg?
Started Azathioprine 50mg with a count of 30...stopped it when on 100mg with a count of 33...MMF started on 500mg bd with a count of 18..stopped it on a dose of 1000mg bd with a count of 33 so neither particularly effective and the side effects of both intolerable to cope with for such poor responses.
Had folate levels checked on date of diagnosis, they were perfectly normal.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64586

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mrsb04 wrote: Hal
Why is there no way to make any conclusions without including IVIg?

Row 2, 3, and 4 folks don't respond to steroids. No steroid response, and unknown IVIG response, no answer.

Started Azathioprine 50mg with a count of 30...stopped it when on 100mg with a count of 33...MMF started on 500mg bd with a count of 18..stopped it on a dose of 1000mg bd with a count of 33 so neither particularly effective and the side effects of both intolerable to cope with for such poor responses.

Ok, but you said Aza worked 'initially'. What is the data on that? Did MMF work initially?

Had folate levels checked on date of diagnosis, they were perfectly normal.

Interesting. That would be evidence that Folate is NOT a required ingredient for row 1 trigger to ITP.

I can only theorize here about a row 2 antibody having a small contribution. Is it possible that when your Nplate response decreased (and you stopped Nplate) was when your ITP got a bit worse? From that point forward, needed a bit more Pred to achieve the same count?

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No Response to IVIG, ACK ! 7 months 2 weeks ago #64594

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Hal wrote
Ok, but you said Aza worked 'initially'. What is the data on that? Did MMF work initially?

When I started Aza at 50mg my pred had been dropped from 45mg to 30mg and count held with 50mg Aza. Haemo at the time felt if I could hold counts then drop pred a bit more, and upped Aza to 100mg a day. Count reached 46 on 30mg but dropped as Pred dose dropped again so retrospectively I think it was the Pred rather than the AZA that was working. I couldn't stand the side effects of Aza any longer and refused to stay on it.
2 weeks of Pred only on 15mg a day to see what happened. Count of 18 so commenced MMF brought count up to 47 so Pred dropped another 5mg and MMF dose increased. Count reached the dizzy heights of 92 after a month of 10mg pred 2000mg MMF. By which time I was starting to feel depressed
It was at this point that I met my current (and lovely) haemo for the first time. I swapped to her immediately after this consolation as I felt she actually listened to me. Her plan stay on max dose of MMF and drop pred to 7.5 mg. Count back down to 33 within a month.
She thought I'd be an excellent candidate for Fostamatinib trial as I met every criteria so MMF stopped as had to be off all meds except Pred for at least 4 weeks before I could start the trial. Depression lifted within a fortnight of stopping it.
She also felt that it would be a good idea to drop Pred to 5mg as once on trail wasn't allowed to drop dose for 6 months. Count was 17 when I commenced trial.

Is it possible that when your Nplate response decreased (and you stopped Nplate) was when your ITP got a bit worse? From that point forward, needed a bit more Pred to achieve the same count?

Impossible to say , my count swung around the whole time I was taking it and very gradually tapering Pred. Highest count I achieved was 145 on 3.5mg Pred and 3mg/kg of Romiplostim. 2 months on Pred 3mg (same Romi dose) then count was 35. Was having surgery that week so pred upped to 10mg as cover. Day of op count was 6 and op was cancelled, Romi was stopped and Pred back to 20mg !! Count up to 117 within 3 days.
Gradually tapered Pred down again over next 4 months but count dropped with corresponding Pred drops so eventually onto Eltrombopag when count was 11.
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No Response to IVIG, ACK ! 7 months 2 weeks ago #64603

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Anne, thanks for the detail. With Aza and MMF taking a long time to kick in, and un-kick in, that 92 sounds like a bit of all three drugs contributed. Can you run down what happened between diagnosis and starting Aza?

The thing about having two antibodies in play is that (except for Promacta and Nplate) taking one ITP drug at a time can lead to a partial count response. The norm is to expect a full response. So it can look like a lot of ITP drugs are failures. On top of that, the notion of your doc increasing the dose of a drug in hopes of a higher count looks inappropriate in this light.

And then there is the issue of wildly varying counts. Those that just have row 1 alone can have large swings. Rebound thrombocytopenia is a feature too - which causes crashes. So when the slow fluctuations of row 2 are added to the rapid fluctuations of row 1, the situation is extreme. Take user 'Ann' for instance. She reports taking 7 months to get stable on Nplate. 7 months! She also reports getting a partial count response from Cellcept/MMF. Kept with that drug for some 17 months with no noted rise. Row 1 was corrected by the drug but row 2 was not.

Would adding a low dose of Aza with Promacta be a bridge too far? A dose of 50mg, or even 50mg every other day? Just enough to push the Promacta down to 25mg while at the same time hoping for continued improvement and a remission long term. I mean, this is nothing more than selecting the drugs required for row 1 and 2 from my table.

Regardless, the contribution of B-complex vitamins in speeding remission for row 2 is in question. Seems like a simple thing to leverage for potential benefit.

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No Response to IVIG, ACK ! 7 months 2 weeks ago #64620

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Hal
Can you run down what happened between diagnosis and starting Aza?
Started July 2014:- diagnosed with count of 12. Given 45mg Pred (1mg/kg) on arrival at hospital. Next day count still 12. ' Oh good your count is holding the steroids will work. As a nurse you understand we need the bed for someone else so sending you home on 45mg of Pred daily, come back to clinic in 3 days. Don't do anything stupid e.g. playing contact sport and No alcohol.'
3 days later:- count of 87 'Oh good still responding to steroids drop to 30mg a day and come back 3 weeks.'
3 weeks later:- by which time I'm manic, an insomniac and exhausted with a count of 43. " Oh dear you aren't coping very well with steroids are you we better add in Aza so we can get you off them" Ha ha I'm still on them now but only just. Down to 2mg a day from last Friday.
that 92 sounds like a bit of all three drugs contributed
Maybe but that was 2 months after I'd stopped the Aza which only has a short half life so I suspect it was out of my system by then.
Would adding a low dose of Aza with Promacta be a bridge too far?
At this moment in time. Yes it would. I'm not adding anything to the mix until I am entirely off Pred and find out exactly what the Eltrombopag alone is doing. However I doubt that this low dose of pred is having any effect on my count. It's only ever pumped my count up on doses of 20mg or more in the past.
Plus both Aza & Eltrombopag are metabolised by the liver which makes me wary.
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No Response to IVIG, ACK ! 7 months 1 week ago #64629

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Mrsb- So great that you are down to only 2mg pred! yay! How are your adrenals doing and all the lovely symptoms of withdrawal? Hope you are okay, its a long slow road, but I always felt better emotionally after I got below 2.5mg. What are your numbers on Eltrombopag?
I've been dealing with low thyroid which feels a lot like low adrenals. My doc said my numbers TSH was so high (32- normal is 2) its like I have no thyroid at all. Then she said "I don't know how you keep going?" I think I've been using my adrenals powered by caffeine so thats why I feel like the days when I was tapering prednisone. I have probably given myself adrenal exhaustion. I'm on a new thyroid med now and beginning to feel much better- it takes time and lots of sleep.
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No Response to IVIG, ACK ! 7 months 1 week ago #64630

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Poseymint...my adrenals seem to be ok. No real side effects of tapering this time. Taking it extremely slowly has certainly helped. Counts are holding in low 40s on 50mg Eltrombopag a day.
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No Response to IVIG, ACK ! 7 months 1 week ago #64637

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mrsb04 wrote: ...
Plus both Aza & Eltrombopag are metabolised by the liver which makes me wary.

Yea, I've got the same problem with Danazol. 200mg was a disaster. 50mg was ok.
It may be a long journey but I feel better when headed in the right direction and not being stagnant.

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No Response to IVIG, ACK ! 7 months 1 week ago #64642

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Hal9000 wrote: ... This Bactrim thing is new to me and I need to do some due diligence on it...

Some background on those that have taken Bactrim, aka Trimethoprim/sulfamethoxazole, Septra, Septrin, and co-trimoxazole (Britain).
Those that took Bactrim but reported no effects:
SteveC . , type 1
Ann . . . ., type 1&2, low dose Septrin daily (while in partial remission)

Those that reported platelet crashes after taking Bactrim:
charlotte . . , type 1
rachaely . . , type 1?, counts dropped to 23 for several days

Those that appeared to have 'drug induced ITP' after taking Bactrim:
Dotty . . . , unk type
Dadio . . ., unk type
kimm . . . , unk type

Those that took Bactrim, developed ITP, and achieved remission taking Nplate/Promacta:
MatthewR . . . , type 2, Bactrim trigger, Nplate few weeks for full remission
markhudson . , type 2?, unk trigger, Nplate 2 yrs for full remission

Based on the above it looks like Bactrim is a dangerous antibiotic in the ITP world.
- if one has ITP, about half of those who are type 1 (steroid responders) had platelet crashes
- if one doesn't have ITP, is predisposed to ITP and takes the drug, about half will self remit after a few days and the other half needs Nplate/Promacta for a full (type 2, no IVIG response) recovery

There is no evidence of developing anything else but a type 2 ITP from the drug. This implies that a Folate/Vitamin B9 deficiency does not cause any other ITP type than type 2. That the deficiency primarily affects the liver. But does have a lesser effect on other parts of immune system.

Through an internet search, I found the following 'livestrong' non technical articles on liver health.
www.livestrong.com/article/475112-folic-acid-for-liver-damage/

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No Response to IVIG, ACK ! 2 months 2 weeks ago #65712

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Here is some data on Flu strains active versus when a PDSA member would report ITP, who also have row 2 treatment responses in my ITP table. This idea came about in an earlier post on maria3132's thread.

The Flu strain data was extracted from CDC's website page. From this page:
gis.cdc.gov/grasp/fluview/flu_by_age_virus.html
click on 'Group by Virus', then select the 'Season' year on the pull down tab to the left.
Looking at their charts, apparently the CDC closely tracks two A strains: H1N1, and through the A(H3) test, H3N2. A list of types and strains can be found on Wiki. Note that Influenza A is the most common type. Less common is B.

name . . . . . . . . . . . . . . . . ., ITP start , vaccine , A , A(H1N1) , A(H1) , A(H3) , B , B(V) , B(Y)

robert1959 . . . . . . . . . . . . , Feb 2014 , n , 25 , 2400 , - , 110 , 10 , - , -
tacmom . . . . . . . . . . . . . . ., Feb 2007 , n , 45 , - , 290 , 75 , 60 , - , -
Grammalinda1@msn.com , Jun 2010 , n , - , - , - , - , - , - , -
Caro9 . . . . . . . . . . . . . . . . , Feb 2017 , n , 17 , 35 , - , 2000 , - , 70 , 110
mjocusa . . . . . . . . . . . . . . , Nov 2011 , y , 2 , - , - , 10 , 2 , - , -
cyclone87 . . . . . . . . . . . . ., Jan 2012 , n , - , 3 , - , 90 , 10 , - , -
MatthewR . . . . . . . . . . . . ., Aug 2014 , n , - , - , - , 38 , 20 , - , -
ACE09CLE . . . . . . . . . . . ., month not available
Ann . . . . . . . . . . . . . . . . . ., Dec 2005 , y , 12 , - , - , 50 , - , - , -
Ann . . . . . . . . . . . . . . . . . ., Mar 2018 , ? , 11 , 250 , - , 1000 , - , 110 , 840
EmilyK . . . . . . . . . . . . . . . ., Jan 2015 , n , 34 , - , - , 3300 , - , - , -
EmilyK . . . . . . . . . . . . . . . ., Nov 2016 , n , 3 , 10 , - , 100 , - , 10 , -
jayinchicago . . . . . . . . . . . , Aug 2016 , n , - , - , - , 34 , - , 2 , 10

I notice the following things about this data:
- the Flu type A appears to trigger ITP and type B does not
- Flu type A, H1 examples are: robert1959, tacmom
- Flu type A, H3 examples are: Caro9, Ann, EmilyK, and maybe: cyclone87, jayinchicago
- those that assert a Flu vaccine triggered ITP: mjocusa and Ann, got ITP during low Flu activity
- MatthewR, who asserted Bactrim antibiotic triggered ITP, got ITP during low Flu activity
- Grammalinda1 is a most unusual case. That June there was no Flu activity and June is not the time of year to get a Flu vaccine

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