My ITP came about from vaccination also. Which I never even knew was a thing. I'm similarly on a rollercoaster though my counts have not been too bad. The idea that something from the medical industry caused my disease is difficult to process and difficult to talk about.

One thing you can be grateful for is Canadian healthcare. Hopefully your treatment costs are manageable. I'm in the US and I'm completely stumped on how I'll afford treatment. The insurance companies here are absolutely ruthless when it comes to rare diseases and "specialty drugs."

Anyway best of luck and hope the ride ends sooner rather than later.

Not sure you'll see this since it's an old post, but I'm in the same boat, ITP after vaccination. For me it has now been over a year. I had the same question of whether vax-induced ITP might be shorter-lived, but unfortunately I'm still cytopenic. Currently my count is pretty good because I had dexemethasone a few months ago, but apparently this boost is usually temporary. 

In my research I did come across this study that found antibodies were persistent as far as six months. What's annoying about these studies is they always have a set duration, so longer term follow-up is usually not available.

Promacta has some concerning side effects but it has been around a while and many people seem to have success with it. You could also look at Doptelet, which is a similar drug but milder side effects.

Man that's awesome. I have seen research showing that some percentage of people can achieve sustained remission off-treatment with eltrombopag. There is a theory that in addition to increasing platelet production the drug might also restore immunologic tolerance.

These guys have a specific tapering protocol and claim a success rate of 70% off-treatment!!

Hey, Daryl.
I read your comment about our Canadian health care system.  Yeah, it's not too bad.  But even each Provincial health care is different.  The idiot we have as Premier here in NB is ruining ours.  We're losing nurses and wait times are ridiculous for tests.  My hema doctor had to get permission to use the Rituxan on 3 of us otherwise I wouldn't have been able to afford it. I'm not sorry I did it.
If you decide to go that route, I hope it works!  Keep us posted on how you're doing.

Hello, does anyone know when Promacta will go generic.  I've read something that suggested 2028 but was hoping it would be sooner.  My insurance covers it at $30/month now but I plan on retiring in a couple years which could mean the cost will skyrocket.  Any info on this would be greatly appreciated!  

www.drugs.com/availability/generic-promacta.html

How are your counts, mrsb?

Hi Cindy,
Thank you for asking, 23 last week but asymptomatic and full of cold so no dose change at the moment. Back to clinic the week before Christmas.

Oh no, hope you get over the cold fast.  Good that you are asymptomatic.  Hope your next test is a good one!

Sorry you have a cold mrsb - those are hard to get rid of sometimes.  23 isn't a bad count for you - hope it goes up though with your next count!!   Take care & hope you are better soon.  Have missed you.

My lower legs have been covered in bruises lately, but my count hasn't dropped significantly in the last couple years...
I wonder if anybody has this experience, I didn't bump into anything, I wear super soft boots, I didn't shave lately (it's cold and nobody sees it at the moment)...
Also feel very allergic, hair doesn't grow under arms, only partially on legs... sometimes... super fatigued. Menstruation-like bleeding about 4 months non-stop. I'm taking birth control to avoid cysts and severe nausea though...
Yes I know I'll go to my doctor asap. Just curious. Here some people have helped me avoid some mistakes with doctors. A lot of them have lots of cancer patients and rarely any ITP cases. I used to have an immune hematology specialist who's only doing that, but he moved away.

Hi Daryl,
The protocol not to treat above 30 is if you don't experience any significant symptoms. If you do have symptoms you might need treatment. 
I'm sorry you're having problems from the Covid shot. These things were known early but censored. 

Good luck they will increase again Mrsb04

Hi Daryl, Sounds like you are in remission with counts of 150- thats great!  I have heard of people going into remission from steroids, yes it can be temporary or permanent. Now you will have to watch your labs and medical notes more closely, as you have mentioned, doctors don’t tell us everything. It’s really up to the patient to figure out ITP and advocate for treatments or refuse treatments. Some of the treatments are harsh and dangerous. When I was first diagnosed 14 yrs ago, there was a warning on the Mayo Clinic website that said “caution the treatments for ITP can be worse than the disease”. People can live with low platelets. It’s important to look at symptoms, not just platelet counts. I agree that you shouldn’t have IViG as a first treatment. I’ve never had it. It’s a blood product that I consider one of the Big guns. Better to start as you did with steroids. I have refused splenectomy because it doesn’t always work (50%) or is temporary plus it’s a healthy spleen that is doing its job.

I have been on Promacta, Rituxin, and am currently on Nplate. Some insurances will pay for Rituxin because it’s an infusion in a medical office. My medical organization, St Joseph paid for Rituxin as I was low income.

The hematologists office signed me up for the patient assistant programs, thats how it works. I go to a cancer center so they are very good at getting expensive drugs paid for. I was on Promacta’s patient assistance program for several years. Promacta was owned then by GlaxoSmithKline and they gave me Promacta for free- they even paid FedEx shipping every month. Promacta was sold to another drug company so don’t know how that works now, likely is a similar program.

Amgen owns Nplate and has a patient assistance program called First Step. Amgen will pay 100% of your copay/coinsurance. It’s quite amazing, Amgen gives the hematology office a credit card and when you have a copay (mine were $6,000) they just swipe the credit card and its instantly paid. I think the patients income has to be below a certain amount, like $70,000. It doesn’t work with Medicaid/Medicare can’t be a government insurance, it has to be a private employer type insurance. I was on that program for many years. Now I have Medicare and am not eligible, but still my Nplate is getting paid for 100%. It’s because it is an injection given in a doctor’s office so is billed differently than a prescription drug. In California I know Medicaid (mediCal) pays for everything because my son has that insurance but I don’t know about other states.

So I wanted to answer your questions but really hoping that your remission is permanent- 150 is a great count! Also yes, vaccines do sometimes give people ITP, several people on the forum over the years have had ITP from vaccines. Sometimes it just goes away. Children can get ITP from colds and flu. It often goes away on its own without treatment so doctors usually just monitor it. 

Poseymint, that is useful to know for me too, I keep wanting to move back to California but have been too afraid the last years, because I didn't know how to keep covering my medical expenses there.

California is an expensive place to live but is excellent for social services. My son (age 31) got signed up for Partnership Health Plan through a community health clinic. It’s one of the MediCal plans, I believe it’s free if you qualify. Hes always been healthy so didn’t need to use it for many years but this year he has had a 9 day hospital stay and some very expensive procedures and drugs. He hasn’t received one bill, only confirmation that everything has been paid at 100%. Omg so thankful for that plan!

Poseymint- Wow that's amazing! I hope your son is doing better? I never really figured these things out when I was there (2003-2015), but that was before I had ITP. I was almost never ill, so I rarely needed insurance. I had to pay pretty much everything dental on my own (seemed cheaper that way but still had to borrow money). Had no insurance 7 years, then Healthy Way LA and Medical later I think... Broken arm, one of those metal thing surgeries, had to pay only 11$, that was good... 
If I go back, how can I make sure I find the right plans and don't need to wait for meds in an emergency? Where do you know these things from, are there some good websites or doctors you can recommend? 
Do you think it's possible to get enough money if you can't work for example? I'm always terrified I'd end up in the streets if something happened. (I have US citizenship, but am from Europe, would prefer to live and maybe even retire in California.)

I was at my hematologist's today. Wasn't really an appointment, she agreed to test me QUICKLY because I have bruises all over my legs- front back everywhere, not possible to be caused by my usual klutziness. Well turns out my thrombocytes are ok- 113. I don't know how we got to this, but she said she has patients who have a thrombocyte count in the single digits and don't want to be medicated. I asked really, aren't they afraid of bleeding into their brains or something? That can happen right? Or is it unlikely? She said yes it can happen, and those patients were more afraid of ITP meds than of bleeding into their brain... ??? Why would that be? Are there any side effects I don't know about? She didn't have time today so I left after I got my test, maybe somebody here can fill me in...

Promacta isn't recommended with a count over 50. 4 days 40mg Dexa is usually the first treatment you get where I am, they see if you recover from that first, if not they continue. So it seems people have recovered from that.

All medications can have side effects. How each person is affected is individual to them. Loads of websites with the information on. In the UK one is given a patient information leaflet showing possible side effects. 
I can fully understand people not taking meds that give them side effects.
I will not take these again as side effects for me are worse than having a low platelet count,  Azathioprine, MMF, Eltrombopag, Fostamatinib and Romiplostim.

Starting Promacta with a count above 50 would not be appropriate but  if it is the Promacta holding the count above 50 then it may well be indicated

Right, I meant I didn't understand why the dose wasn't lowered with a count of 130000 for three years, but maybe there's a reason the doctor knows...
Package insert says something like:
-50 increase dose by 25mg to a max. of 100mg
50-100 use lowest dose possible to maintain
100-150 lower dose by 25mg, wait 2 weeks to see effects. 50-100 use lowest dose to maintain, 
150 stop Eltrombopag check platelets twice weekly, once below 100 take last dose reduced by 25mg

Oh I see what I wrote first. Of course you can TAKE Promacta over 50. I have a ton of brainfog lately. I didn't express myself right. What I meant is, Promacta shouldn't be used to INCREASE it INTENTIONALLY to much more than 50000, when it is above 50000 already. 

medlineplus.gov/druginformation.html

That is a good site to check on a drug (supplement or herb) 
Heck yes there are side effects to meds for ITP.  Your count of 113k is quite good - I wouldn't be worrying about a thing with a count like that!  You were smart though to get a count done if you were concerned about bruises that you couldn't explain - I used to remember every time I bumped myself so I'd know if it was ITP or me - I don't do that any more, if I get a bruise I get a bruise/bruised.  

Actually I never worried about a brain bleed - know 2 who had a bleed with normal platelet count & no ITP, 1 had irregular blood vessels on brain and the other fell and hit head on kitchen floor, not counting my friend who had a brain aneurysm.

Regarding my friend who hit head on tile floor and had a brain bleed and never ever had low platelets/ITP:   I fell and hit the left side of my head on a stone/concrete planter January 2018, lower than normal platelet count and I did not have a brain bleed but did need 4 staples in my head.  I don't think they would have done a CT had I not told them I had ITP.

Anyway - go to the site, it is a good one.

HI Daryl...I wish you the best of luck in resolving your situation. I am very sorry to hear everything you have to deal with. I get it as I too am a planner. 
I just wanted to chime in here and tell about my husband's ITP and the opposite effect vaccines have had on him. (He got diagnosed in 2000 via a routine physical. He has a work history of benzene exposure, so most likely it's industrial disease.)  
Normally his platelets are in the 20K's. He does not treat unless he has to have some type of procedure no matter how minor. The IvIg and dexamethasone are the only things that work for him and his platelets fall off quickly after that treatment so it's just a temporary fix. He does bruise easily but really doesn't have other symptoms of ITP.  Oh, and he has a woodshop. Go figure.
Now the interesting part....I went back 10 years and his platelets have ranged from 14K to 38K and all the other counts are in the 20K's.  In November 2021 he had the Covid vaccine 10 days prior to getting bloodwork and his platelets were 96K!  Just this November, he had the RSV vaccine 3 weeks prior to getting bloodwork and his platelets were 139K!  He is having a colonoscopy this week so we intentionally got the Covid shot last Monday hoping his platelets will be up and he can bypass the IvIg, etc. He goes for bloodwork in the morning so it will be interesting to see what his platelets will be.
Our philosophy is this:  sometimes the cure is worse than the disease. We know his platelets are low and have been for 20+ years but he is, otherwise, asymptomatic and healthy, so why treat?  

In 2022 I was treated (as I have been before) for ITP using 4x Rituximinab infusions.  It's what my hemo calls a full course.  Anyways, now that the hospital is finally getting around to billing I was looking at what was billed to insurance and it seems insane. The total is over $200k.  Is that right?  That's seems cray beyond belief. I mean 4x visits to infusion center for a few hours with Rituxin and Benadryl and probably some saline solution.  What the heck?  Is this really what is normal?   Insurance allowed (per contract with hospital) $143,842.

I mean I have really good insurance still so my cost is a few k but it bothers me that it would really be this much.  What the heck would you do without great insurance? Just wing it?

Would love to hear any comparisons.  

I guess I don’t understand why they would use Promacta if Rituxin gave you a response?  Sounds like Rituxin gave no response or wore off shortly and if so then why do Rituxin again this time?   

Also, from my understanding from what my hemo told me about Rituxin (which does now finally have generics I believe) the companies can sometimes/often play some games to extend their patents for a few years beyond the norm.

Interesting Luvmycat - I'm happy for your husband!   

I havent been on here in some time. I check every once in a while as a reminder of what I dealt with in 2020. With a platelet level of 2(having never had an issue in my 54 years) I was in the hospital for 10 days including 4 in the ICU. That included all the treatments one would expect for a newly diagnosed ITP patient with extremely low platelet levels. Eventually after not much progress I had the 4 weekly Ritux infusions along with weekly Nplate injections for the following 3 months after which my platelet levels were well above 100 and have remained since then. I do not remember a precise number but at one point all of my treatment and hospitalizations were over 300K. In the end I think I was on the hook for around $12000. I have and had then Blue Cross. Needless to say, after never really having spent any time in the hospital or having any medical procedures it was a shock to see the total cost. Those weekly Nplate injections alone were thousands of dollars.