That’s awesome news Vicky. I enjoy hearing stories like this. Anything else you can think of that might have attributed to you staying home n remission so long? 
thank you. 

I had a 5 year remission with IVIG (after prednisone not working), then I got ITP five years later (steriods worked then on their own), then third time, I had IVIG and been in remission 23 years since. 

Hi Mark 

Sorry to hear about your relapse. I first got ITP age 15 and thought I would never get it again, but 5 years later I relapsed, then a year and a half after that. Each of those three times my counts went to 1 or 0 (uk money) but responded to Prednisone or IVIG. 

When I had it a third time I asked my consultant if he had had a patient that had had it three times and no more....he said he had a male patient, I walked out vowing to be his first female patient that never had it more than three times. Touch wood, it's now been 23 and half years.   So long remissions are very possible and that is what I wish and hope for you. 

Also I think the times I had ITP, were often times of stress through multiple sources (long distance running, which is a good stress, but nevertheless a stress to the body, intense academic study, emotional stress - bereavement etc). I did a York food intolerance test and reduce my consumption of yeast and dairy, which has massively improved asthma and skin outbreaks. 

I hear you about hating prednisone, I think I would refuse that if I ever get it again, it's so horrible. I would offer to pay for IVIG I think. 
Good luck with it all

I have a college student at home, but thanks for that push, I really should do so.

bonandmick have you looked into living in Europe or Canada - check it out, you might be able to make your wish come true.

As good as our health care is here in Canada, it can be better.  I am grateful I got my Rituxan treatments covered back in 2011, or I never would have been able to get it.

I have heard that things might get more difficult with what medicare provides, as far as specialty drugs in the future, but I don't have details. I don't understand the whole overpricing that the insurance companies do, someone must regulate this, they can't just make up numbers. I have not yet seen an actual bill with charges, but I do see it on my online account. I think I am just going to have to get used to maxing out my copayments every year for $5000. Wish I lived in Europe or Canada.

Sounds like you are doing well with the reason that you are at the university, your studies. Friends are important but they tend to come and go whereas career is your foundation.

I totally agree that with ITP and my other autoimmune disorder, I have to watch out for difficult people. I’ve had to learn better boundaries. I don’t like people who are draining or create too much drama. Autoimmune has made me more sensitive or maybe I was always sensitive, now I’m just aware of how I’m physically affected.

Sounds stressful to argue with the classmate, sounds like it was a hot topic for her and triggered her anger, but perhaps its not the end. I’ve found it’s hard to avoid people who I’ve had a highly charged interaction with. I keep running into them! I’ve learned that if I say a little something to them or wave to them it can soften the conflict. They might respond or not but I’ve done my part by reaching out. Just that simple hello to them can clear my stuck emotions, which in turn helps me to be healthier and kind of empowered.  

Once early in my treatment, my hematologist got very angry at me for continuing on Nplate because it was so expensive and I refused to get a splenectomy. He was blowing a fuse saying what I was doing was the problem with the entire medical system. Back then 2015, it was expected that a person have a failed splenectomy before going to the expensive TPOs. I couldn’t see the sense in that. I didn’t argue with him just stood my ground, but the next week my platelets had fallen to 1. He came running to the rescue and everything was smoothed over, I got my Nplate with no further flack from him. But it showed me how emotional stress can crash my platelets. 

take care, great your nplate is most likely getting paid for! Its not easy haha but it’s been a good drug for me so has been worth it. 

I hadn't seen this so am responding a bit late. That seems really weird and very consumer unfriendly. Why do they even include that threat? Its kind of like my clinic is now charging Medicare a shocking $21,000. for one 500mg dose of Nplate! They raised their prices which is so crazy because Medicare won't pay but about $3500. So whats the point of the insane price increase? Last year when I was on employer insurance, I was getting notices that I may be responsible for $8000. which is very stressful. But I was never responsible for those bills, it was just their way of doing business- which is probably causing the patient more illness because of the stress! lol Fortunately I don't get those threatening bills anymore now that I am on Medicare and everything miraculously is being paid. Hopefully the same goes with your Nplate.

I read a bit about this company. It looks like they started out as an organizing tool? You allow them access to your medical records and they search for records and organize them on their site. Well that doesn’t generate any money except for site advertising. So now they are gathering and selling the collected group information without any identifying names swearing to maintain your privacy.  I personally wouldn’t do it, it seems their access is unlimited. If they would pay each year for the access then it would have some limit. In my opinion, it is not worth $150.

When I was first diagnosed with ITP, I didn’t have insurance-I had lost my husband’s insurance in divorce. I couldn’t get insurance because now I had a chronic illness and back then 2009, insurance could discriminate against people with “preexisting conditions " refusing to insure them. Plus enforcing waiting periods, and even dropping people from coverage when they got cancer if they had reached their “lifetime limits” on costs. If a person tried to keep anything private from an insurance company it could be insurance fraud. So I guess because I was discriminated against I am very protective of my medical information. Also I have access to the information through my patient portal so don’t need anyone doing it for me. Happy ending: everything changed with Pres Obama’s Affordable Care Act. It stopped insurance companies from discrimination and also allowed patients to access their own information. Before that, doctors could keep what they write about a patient private.

 I spent over 40 years as a  front line nurse and always tried to educate my patients about self care/ Doctors do not always know best. 
And mrsb that is why the saying goes:  "thank a nurse, they keep doctors from accidentally killing you" 

Good Lman - never ever heard of picnichealth, may be legit but I wouldn't trust it!!

Good for you Derek. I'm lucky to have a haemo who supports self management. I spent over 40 years as a  front line nurse and always tried to educate my patients about self care/ Doctors do not always know best. 

Hi Chad,

Your inquiry about lectins piqued my curiosity.  According to the article in the link below, unless you're consuming raw legumes or tons of slow cooked legumes, lectins don't appear to be problematic.  

www.hsph.harvard.edu/nutritionsource/anti-nutrients/lectins/

-Derek

Hi.
I did not sign that. 
It was picnichealth. I was searching for ITP on google and the ad showed up.

Thanks for sending the link to the Dr Proven video, which is excellent.  It reinforces my plan to essentially manage my own ITP therapy. My doc is decent but he falls into the category of doctor that treats to count, not the patient goals. With that, he hasn't resisted my demands regarding steroid withdrawal and the desire to move to TPO-RA (Promacta) therapies in lieu.  If things continue this way I will stick with him.  Like you, I am more concerned about drug side effects than platelets below 20-30K.  Single digits is a different story for me but many here have seemed to manage even at that level. From the video,  "ITP isn't as dangerous as we thought" resonated.  We have to be careful but also live our lives.  Thanks again sharing.  And Happy New Year!  (cute pup, btw)

-Derek (dmurashi09)

No it would not be wise to do!!!   Never sign away your medical records!!!

Just curious - you saw it on the internet - did it tell you what company it was who wanted to have your records for research and supposedly send you $150??  

Hi.
I saw an ad on the internet a company was claiming to be collecting medical records, removing identities and names, and using them for research purposes. They were interested in ITP patients. I am unsure whether to participate, but there was a $150 compensation for that. Would it be wise to do so? They asked for my signature and the doctor's name and address to access medical records on my behalf.

Hey Posemint!
Thanks for your kind reply. I hope you have had a great holiday.
I told her and after a while, it broke up. Not sure if it was about ITP or not but it was also long-distance and had several other issues. A lesson I learned is that I'd never start a long-distance relationship since apart from every problem it has for everyone, for me if they ask about health, then I cannot lie and since long distance relationship is romantically weaker than an in-person relationship, chances are higher that it would end.

I also broke up with a classmate, over a trivial issue (She broke up cuz I was arguing about abortion laws, with some references). She raged and although I knew her for a few weeks, it was a little disappointing and made me sad for a while. I had some symptoms and I suspect it might be of that. I have had relationships ended, but this one ended with an argument which wasn't nice (and not my fault). Another limitation ITP would bring to my life is that I shall look into a more stable relationship as tolerating a bad partner would be of too much a burden to carry other than ITP.

I'm now single and feel lonely a bit. I don't have many friends and I also live alone (in the US, far from family). My ex has applied to this university and I hope she gets admitted. I found her to be the best person I ever met. But in a college town of 20-30 thousand students, it is disappointing to be single (and also lonely) . I also tried several dating apps but to no avail. Next semester classes would be in person (as opposed to this one which was online) and I'd have more time to find new friends (either dating or friends).

But let's also focus on good things. Thank God, I have had my medication covered. It was stressful (as also one doctor visit got denied and got me scared that might affect meds) But I won't check the website again. I won't check till they send a bill and then I'd argue. So far no bills in my mailbox and thanks, God. I got an A+ average this semester. I am now on a small prednisone dose over a bad week I had but I hope I can wean off quickly.

Lman  How is it going with the girlfriend? My first thought was that there might be more judgement coming from the parents than the daughter since they are doctors. Parents can be very protective. I don't really know, probably just have to use your intuition about telling someone about health issues. Getting to know someone romantically is always somewhat awkward so if its not perfect when you tell her(if you tell her) then thats just the way dating is. When dating it always seems like you're doing the wrong thing but if the other person likes you, then they will see the good in you no matter.

I haven't told my employer or people I work with that I have ITP even though I've worked there for 8 years. I don't want to appear frail or risk being discriminated against. When I do tell acquaintances/friends I usually down-play it as something that has few symptoms like "being on a blood thinner". Actually no one seems to care much lol

Dmurashi~ If my counts would stay above 30K, I wouldn't take any medication. "Watch and Wait" is a valid plan for ITP. They often just monitor the platelet counts in children. A lot depends on symptoms, and lifestyle risks. I drive a car, usually on back roads but don't do much else that is physically risky. My first hematologist told me that they can do open heart surgery with a count of 50. I'm honestly more worried about the side effects of treatments than low platelets. That said, I do try to keep my numbers above 20, above 30 is better.
You might enjoy hearing the talks from Dr Drew Proven and ITP expert in the UK. He is brilliant and so helpful, a leader in common sense approach to ITP.  Here is a talk from 2020.        www.youtube.com/watch?v=lcC329pd-fY

poseymint - thank you for sharing your experience with Promacta.  So, I haven't started taking it yet due mostly to doc miscommunication regarding dosing and a little to do with insurance and which pharmacy they allow to fulfill.  I won't go into the details but the Promacta will arrive on 1/4 by mail.  In a way, I'm glad because my platelet count was 31K on this week's lab. It was 17K last week.  This in spite of tapering the steroids over the past 2 weeks. I'm plan to be off entirely by the end of next week.  I am doing diet-related things aimed at reducing inflammation in the body, and taking some supplements aimed at balancing the immune system and increasing calcium absorbtion (steroid mitigation). I can share the protocol if interested.  I don't know for certain if the dietary changes contributed to the increase in platelets but I will continue and see how it plays out. My personal therapy plan is that if my counts are >=30K, I don't want to medicate. But I am glad the Promacta will be available if needed.  
Was there a reason you switched from Promaca to Nplate?

Derek- Hope it is going well with Promacta. Most people do very well on Promacta without side effects. When I took it, my platelets rose to 40 in about a week or two. I started on 50mg. After a while, my platelets started climbing up to 100. I then dropped the Promacta dose down to 25mg.  Quite a few people on the forum have been able to taper off of the TPO drugs and achieve remission. Some people have been able to reduce their dose to every other day. It can be quite a good drug. I had some side effects (headache, brain fog) with Promacta but they went quickly away when I stopped taking it. Also its important to know that some initial side effects will go away after a few days or a week.

I have been on Nplate for 5 years and have no had apparent side effects. It keeps my counts around 30 which is a safe count for me. When my dose is increased, my counts go up to 50 for a while but then drift back down to 30. So I just accept that 30 is about as high a count as my immune system will allow.

Thank you all, especially @JJ - very helpful!!

I am fortunate to live a 20 minute train ride away from one of the UK centres and my haemo is the clinical lead. 
My GP has absolutely nothing to do with my ITP care. Patients  have 24/7 access to the centre via the phone for queries or advice.

Very comforting knowing one is always dealt with by experts.  

We have them in the UK but not heard about the US but there are specific names that are well known as experts in the ITP world. The names on this report are some of the best. Two there that I know are experts in America are Terry Gernsheimer and David Kuter.

  ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the

This could be good news.  There is a regimen of antibiotics that are used to eradicate the bacteria.  Hopefully, that is the root cause of your low platelets and is resolved by treating it.
pubmed.ncbi.nlm.nih.gov/20353303/

Had both blood work and stool sample tested. 

By the time they connected H-pylori to ITP [in some cases] I was told I'd had ITP so long it couldn't be from H-p.

Testing for H. pylori infection

1. a urea breath test – you'll be given a drink containing urea (a chemical that's broken down by H. pylori) and your breath is then checked after.
2. a stool antigen test – a small stool sample is tested for the bacteria.
3. a blood test – a sample of your blood is tested for antibodies to the H.

Stomach ulcer - Diagnosis - NHShttps://www.nhs.uk › Health A to Z › Stomach ulcer

How do you know if you have H Pylori? I am going through my second bout of ITP. Both times I ended up in the the ER with platelets of 1. The platelets rebounded both times after IVIG and promacta. The first time it took 3 rounds of IVIG but once I started the Promacta it came up and stayed. I then weaned my self off and required no medication to maintain a 250 count. After the first time me and my Hemotologist thought I was over ITP for good. She classified it as acute not chronic or persistent. To both our surprises 15 months after I went back to normal with no medication my platelets crashed again to 1. I ask the question about H. Pylori because in both instances I was having trouble with my stomach. Indigestion or whatever. The second time I had indigestion and also a slight fever. Within days my platelets were at 1. Luckily again they rebounded with one IVIG treatment and Promacta. 3 weeks later my platelets are at 260 and I am weaning myself off Promacta. My question is do you think this is being caused by Pylori? How do I test for that. Has anyone else gone for more then a year after the initial diagnosis and relapsed?