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.)

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, 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.

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. 

Good luck they will increase again Mrsb04

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. 

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.

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.

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

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.

How are your counts, mrsb?

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

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!  

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.

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!!

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.

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.

Hi Cindy, sounds like you've been through a lot! Glad you are in remission.

My hemo offered ritux to me before the steroid. I wonder if I should just go ahead and do it and maybe it will knock out the dysfunction, at least for a while. I was turned off by the potential side effects but I guess a lot of people do it and are fine.

I know thrombocytopenia from the vaccines is very rare. There were some cases from the viral vector formulations but virtually none from mRNA or Novavax, so it's really weird that this happened to me, and very frustrating and hard to talk about with other people. I'm having a hard time processing it tbh. I want to just "fix" it and move on but apparently that's not how it works with this disease, and like I said, the costs for treatment are just insane. I dunno what I'm going to do. The predatory pricing on specialty drugs is terrible.

Thanks Dave. Yeah I have this feeling that if I had gotten treatment a year ago it possibly could have avoided turning "chronic." But apparently the protocol is not to treat above 30k. I wish I had just given myself some corticosteroids at the time.

That's awesome that you've been able to stay in remission. I think what bothers me the most is not the disease itself but the difficulty in affording potential treatments. Like I'd be fine going on a TPO-RA if necessary, but none of the health plans I've looked at in PA really cover "specialty" drugs without the patient first spending thousands of dollars to hit the OOP max. It's total bull$@^% and has sent me into quite a spiral. Anyway thanks for replying, good luck to you too.

Daryl,
We are all different in our cases and how we respond to treatments.  My story is I was diagnosed in 2004 and did IVIG every week for the first year which didn't help.  My hema doctor suggested a splenectomy, but I wasn't ready for that.  I was also on Prednisone, at different doses, the whole time.  I finally did the splenectomy in 2006 hoping to get away from the Pred.  The surgery worked for about a month, then I was right back to the beginning.
I did 4 weeks of Rituxan in 2011 and it put me into remission.  I don't consider myself immune compromised because of that, but because of being spleenless.  I live my life normally but I do try to stay away from people who are sick.
I have had 4/5 shots for Covid and due for a booster on December 1.  None of them affected my counts. 

I can respond to the steroid part, but my case is not typical.  I got diagnosed 12 years ago with a count of 1 and lots of bruises and petechia, but no outward bleeding.  I spent 5 days in the hospital with counts under 10.  I had 2 rounds of IVIG, an IV steroid, and Prednisone.  On discharge my count was 42 with a plan to continue Prednisone and pray.  A week later my count was over 400.  It steadily fell as I tapered the Prednisone and when it hit 150 I was expecting the remission to end, but my next count was higher and every count since has been normal, even after the Prednisone was completely removed.  I get tested once per year and am usually in the 200s, always in the normal range.  Steroids don't cause a lasting remission for most people, but in some cases they do, and since they are the least invasive and cheapest treatment, they are always worth a try.  I don't know if mine would have worked without the IVIG and certainly think the prayers helped, but I'm incredibly thankful.  Good luck with continued good counts.  Hopefully your remission holds.  

Hi all - I'm new here although I've looked through a lot of the resources before. 43M/USA

So my situation is that my counts started dropping after a second COVID shot. I had some other unrelated (I think) symptoms too - chest pain, mainly - and even went to the ER for that. They gave me something for possible heart inflammation just to be safe, but made no mention of any other problems.

Fast forward one year, I get a routine CBC and the urgent care doc casually notes that my platelets have been low in the last few tests and I should see a hematologist. I then looked back at all my blood tests from various places and put them in chronological order, and I saw that the decrease started after that shot and had been fluctuating between 40s and 80s. My count at that ER visit a year earlier had been 70, yet no doctor there had brought it up to me.

So this means by the time I see this hematologist it has already been a year, so I'm now "chronic" with no treatments. I fortunately have never dropped into single digits - lowest so far has been 42. Guidelines say to not even bother treating above 30, but she offered to push for some things. First it was IVIG, but when I read about that it seemed like an emergency bandaid rather than something potentially curative. Then she offered rituxan, which has better long-term remission - but I'm afraid of wiping out my immune system. Finally we settled on a round of high-dose dexamethasone. That was four months ago, and my counts at last check are 150 (yay!) so I apparently responded well.

Sorry for typing so much, I have a lot in my brain right now. Anyway onto my questions:

I have been scouring the internet for any hint at the possibility that the steroid alone might put me in a long-term or even permanent remission. But what I see mostly is that the effect tends to last a few months. What has your experience been with the steroid approach?

My other question is looking forward, assuming I need some kind of treatment eventually, how the heck does anyone afford it? Promacta and Doptelet are $10,000 a pop, rituxan is expensive too, so is IVIG - not to mention any scenario involving a hospital bill. I'm currently on medicaid and that has been a godsend, but I can't stay on it forever. I live in a very expensive city and I'm trying to move, find a job, etc., but when I look at marketplace health plans, I see "specialty drugs" not really covered, even in gold-tier. Like they'll say "50% coinsurance after deductible" which means I'm on the hook for half the cost. I'd definitely hit my OOP limit, which is usually several thousand dollars. So when you divide that monthly, it's like a premium on top of the premium. Comes out to $1,000+ per month, which feels crazy expensive to me, even once I start working again.

I know the drug makers offer some assistance programs but I don't really get how that works. Is that how most people manage it? I'm trying to find a job with good health benefits, like I heard about this thing through CVS that some employers offer which reduces drug costs. But so far no luck.

I know my situation could be worse, but I'm a planner and I don't want to wait until I get blindsided by costs and crashes. I'm still processing the fact that I have a rare disease in the first place and I just want to move forward with my life.

As mrsb be mentioned, there is no guarantee a splenectomy will "cure".   From what I was told our bodies continue to make the antibodies that attach themselves to the platelets.   I've sorry the splenectomy did not work for your son!  Hopefully his body will adjust and get that count to a decent level!

Badami
So sorry to hear this news. Unfortunately there is no guarantee that a splenectomy will work. Has your son tried Avatrombopag? 

My son 26 now was diagnosed with itp 7years ago.
Various medicines like ivig ,dapsone, mmf ,steroids , mmf and revolade and romiplostim etc did not stabilise his counts and they kept fluctuating for 7 years. Dr. Finally suggested a splenectomy and post surgery within 3 days platelet count was 12lakhs .
In 14 days they have crashed to 4000.

Does anyone have any clue why this could happen ?
Now what are the options left? 

Thank you for sharing. I am still the same platelet level after 2 months off, so all good so far! 

Sorry RLebo, I have no experience with Ezetimibe or know an ITPer who has used it.    Almost everything has low platelets or unusual bleeding as a side effect it seems - I think statins may but haven't checked.  The problem with checking a platelet count is that on any given day, or hour, it can be this or that, up or down, so who know if Ezetimibe caused the 27k or it was just down at that time and up some time after the test.

What was the count before 44k, how long were you on Ezetimibe when it was checked & 44k, when was it 27k - when was it last checked & the results?  

It is important that your hematologist (with a count of 44k I'd want to be under the care of a hematologist) and your cardiologist are in cahoots with each other!   When I was diagnosed with Graves I had my hematologist and endocrinologist talking with each other to help decide what the best treatment for me would be.   Obviously you are having some problems since you have a cardiologist so you have 2 health issues that need to be worked with as what is best for both.

Good luck and keep us posted!!  

My platelet count dropped to 44,000 during the time that my primary care physician added Zetia (Ezetimibe) to my statin (Simvastatin) cholesterol medication. I read that Ezetimibe has been reported to lower platelet count, so I immediately stopped taking this medicine. My hematogist confirmed that Ezetimibe can cause platelet count lowering on the day he tested me, when my count had dropped to 27,000. However, he didn't believe this was the cause, nor did my cardiologist. I'm wondering if anyone else has had a similar experience, whether your platelet count rose after discontinuing Ezetimibe and if so how long did it take for the platelets to rebound to normal. 

I would open a couple of Champagne, celebrate this wouldn't touch any medications, and undergo six months of weekly tests to see how things would go.

Way to go mrsb - great news!!!

That is fantastic news, mrsb!  Happy for you!

Hamstring has healed and platelet count is 58; promoted to 4 weekly bloods 

I don't know yet, if gluten has affected my platelets, I'm still making too many mistakes, because it seems to be in almost everything- especially where I don't expect it. Or a sign on a grocery store shelf says "gluten free", I trust it and don't read the package, until I get symptoms "may contain traces".

I wanted to write, that a lot of doctors don't even test all gluten antibodies: I had so much diarrhea, weight gain, muscle pain, I could barely leave my place for 2 years, and if I did it was in diapers. Then a doctor tested for TG 6 and DGP, and it turned out I had antibodies. For celiac they usually only test TG2 here, maybe for wheat allergy, and do a endo/gastroscopy. So allegedly TG6 only affects the brain... my stomach is better too though. Oh right, I was stumbling a lot, forgetting where I was, light sensitive, skin rashes. Also mostly gone.

So since I quit gluten (but still accidentally had it every once in a while), at least I don't get nauseous as much, and have far less joint pain.

Will update if it's gonna do anything to my platelets. 

Hi Dagold! How was it paid in 2015? Maybe this is helpful?  www.us.promacta.com/persistent-or-chronic-itp/patient-support/promacta-cost-assistance/

Hey all: Dealing with my second big ITP episode and sorting out treatment possibilities for the longer run. My first one in 2015 I ended up being on Promacta which worked well, but...I'm on Medicaire Advantage and co-pays were $3,000 a month!! Does anyone have any epxerience with taking Promacta and getting it cheaper than this???

Greetings. I just had a strong episode of ITP hit me. Platelets down to 1,000, in-patient 4 days, 4 days steroids, 2 IVIG infusions. Now, 9 days later, my platelets are at 26,000 and I'm out of the hospital though my arms are still REALLY bruised from IVs and blood draws. (Had ITP in 2015 which responded to IVIG followed by 2 Ritux infusions and then Promacta kept me at about 130K for 3 years, then went off Promacta in 2018 and was fine til last week). Met with Hematologist yesterday and he wants to wait and watch platelets for now - no more treatments - and see if they might recover on their own. I'll get labs on Monday and if they are down, then he says we can do either more high-dose steroids or Ritux. I stongly prefer Ritux (followed by N-Plate injections for a while?...Promacta is SOOOOO freaking expensive) since been on prednisone for 20 years (Liver Tx in 2006 from PSC, colon removed in '96 from UC) at 5 mg and have bone loss and high-steroid provoked diabetes (no diabetes usually).  Curious what others think....though, of course, I will always be guided by my doc. Has anyone ever recovered with only 4 high-dose steroid IVs and 2 IVIG infusions?

I don't get counts too often at this point, but I believe it was about 120 4 months ago.
I used acupuncture about 10 years ago (before I had ITP) for sinus issues, I enjoyed it. Seemed to help.  The therapy place I go to doesn't do acupuncture, and I certainly could go find a place to add acupuncture.  
They are going to do something called "dry needling," which is similar to acupuncture, only the needed goes deeper, and there's no taking into account meridians and all the other things acupuncture takes into account.  To my understanding the goal of dry needling is to cause intramuscular stimulation.  
My next session is Friday.  The cupping marks are fading veeerrry slowly!  It doesn't bother me, it is what it is.  They don't hurt or anything.
I'm just kind of starting the process to heal my shoulder, since resting only seemed to do so much.  I'm open to pretty much anything, just primarily trying to heal and avoid surgery.

Jay I have no idea if you should have reasons to be concerned - what was your last count?
I have used acupuncture in the past and loved it & never checked my count before going in, haven't been for a while though - she did use cupping a couple times too but to be honest I can't recall how long the "reddish circles" lasted.   Why not try acupuncture, it is not a quick process, must give it time - the acupuncturist will go over your shoulder history with you and go from there, might be just the needles and no cupping or could be both.   I was very fortunate to find a fantastic acupuncturist who was also an RN - if she didn't think acupuncture would help shed say so.

Keep us posted.

Hi All,
It's been a while since I posted on here, but eventually experienced something I thought I'd see if anyone had any input on.
I recently injured the back of my shoulder.  I'm attempting to resolve the issue using physical therapy.  At the moment, they think it's tendonitis (don't have any imaging yet).  Anyway, one of the things they did was to perform cupping on me, and of course I mentioned I have ITP, so odds are that's going to leave some colorful circles. I've been lucky enough to not run into too many issues with bruising/bleeding with my ITP (been on Promacta 6+ years).
My question is, has anyone here done cupping?  I'm assuming I'll just have some more bruising than normal, but is there any other reason(s) I should be concerned?  
Thanks for any input!
Jay

Revolade should only be used to get your count up and keep it around 50, not more. Once it keeps increasing, the dose of Revolade is usually lowered. Maybe ask your doctor why he wants to increase your platelets that much and how much of a risk for thrombosis there is for you.

I took Promacta/ Revolade 25mg per day for about a year (for more accurate times I can look some other time not now). Then was able to take one every two days, and less and less. 2 years without meds, count approx. 100. Just now dropping again, not sure if I will need medication again. To be seen the next weeks.

There have been some guesses what might've had an effect, but no evidence... 1. I had been vegan 17 years and when I started eating fish again my counts went up (b12 & other things that could contribute to platelet production and inflammation). 2. I didn't know I was gluten intolerant until a doctor had the idea to test not only transglutaminase 2, but also transglutaminase 6 and dgp. The latter two showed, I shouldn't have gluten. Been healthier since I stopped eating that. Not sure if it affects my platelet counts, but gluten intolerance has been linked to thrombocytopenia.

(I'm 43 now btw. Took dexamethasone, prednisone before, only high doses worked to get the counts up a bit, NPlate had terrible pain and trouble breathing)

That is good news from the therapist!  Hope the home program goes well mrsb!

That is good to hear, mrsb!  I hope your recovery is speedy!

Therapist delighted with my progress. Has given me a programme to follow and only wants to see me again if I think it is necessary.

Ok, that 49k is still a good count for you - I'd like you to be at 60k but will take the 49k (how do you like me saying what I'd like ) - I'm just thrilled for you it isn't any lower mrsb!!!

Oh my, I thought a hamstring was at the back of the thigh - that would affect the bum too though wouldn't it.   I hope you are doing lots better - how was your therapist visit?   I'm battling bursitis in right hip, no fun either.

Guess I've had ITP long enough to not be too concerned about most things     Both sons played ice hockey, one a goalie and the other some kind of guard - the later had a cage on his helmet to protect his eyes, during one game he was hit in the face mask with a puck and that puck bent in the cage at his eyes, had he not had it.....   Life is a risk!!

I've not had Nplate - the only treatments I've had are prednisone and one Win-Rho IV, I've been lucky in that respect.   I was diagnosed when only prednisone and splenectomy were the options - since a splenectomy was not a given cure I turned that down.

Keep us posted on how you are doing.   That 128k count is fantastic - keep that up!!

Do you have any update on your daughter’s case?

My daughter is 10 years old and was diagnosed with ITP in January 2023.  She was treated with IvIG and prednisone in March with a temporary response and started promacta in June 2023.  We just received her first good count on promacta at 72,000 in September.  She also had a positive ANA, Smith and dsdNA antibodies but no physical symptoms of lupus. Her rheumatologist referred to it as evolving lupus.  Her rheumatologist recommended start on Plaquenil ASAP in conjunction with Promacta.  Has anyone had success with this combination preventing the further development of lupus and/or eliminating the need for promacta to increase counts?

Boy, was I way off!
Glad it's getting better!  Even if it's slow going.

Muscle soreness or stiffness after exercise, also known as delayed onset muscle soreness (DOMS), is a common occurrence and is generally not directly related to ITP. DOMS is caused by microscopic damage to muscle fibers during exercise or physical activity, particularly when you engage in new or more intense workouts. It is a normal part of the muscle adaptation process.
However, it's important to listen to your body and adjust your exercise routine accordingly. If you're experiencing prolonged or excessive muscle soreness, it may be beneficial to gradually increase the intensity and duration of your workouts. Give your body enough time to recover between sessions, and consider incorporating stretching or foam rolling exercises to help with muscle tightness and improve flexibility.