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

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

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 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. 

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. 

After 9 months on 5x 25mg Eltrombopag per week and mostly hovering around 120 my count rose 8 weeks ago to 167 and today to 200 so my haema and i  have agreed that i will now drop to 4x 2mg per week. We will check my count in 2 weeks and then in 8 weeks to check  all is good. I am happy to say that neither 3 successful operations for 3 different stage 1 cancers  nor a full set of covid vaccinations nor two recent common colds in quick succession have adversely affected my count but we decided i would put off having a flu jab till I am sure I'm stable, since i first deveoped itp 11years ago a few months after I first had a flu jab. I 've not had one since. So for me Eltrombopag has been agreat success : from a count of 1with apparently depleted bone marrow and 7x75mg Eltrombopag in january 2016 to 200 and 4x 25mg in january 2023. I just feel guilty at the cost to the NHS but am so grateful to  Aberdeen Royal Infirmary and NHS Grampian , Scotland, Uk.

Great news Margaret long may it continue 

Hi Chad
Well I've given it quite a bit of thought. I've had very stressful times since and not had it...so I think for me maybe there needs to be a certain number of things before it happens (a threshold of say 20 'stressors')...some other thoughts I've had ...
- hormones - I don't know how they interact/affect immune system but my hormone levels were higher/changing when I got it
- twice I had it just after Christmas...I realised I had a champagne allergy later (causes asthma attack), so champagne allergy may have been a factor
- I had itp before coming out as gay, was there a subconscious emotional attacking of self
-my diet and lifestyle is generally healthier - I prioritize sleep more which I didn't when young, I eat a lot of veg and only a little dairy 
I have no idea really, all I know is that after second two episodes...after two years of hospital stays and numerous outpatient appointments that is what I thought my future would be...a few weeks a year in hospital and endless outpatient appointments and nasty drugs for the rest of my life.... I guess I share remission story because life can give you what you're not expecting ....I realise I could get it again at some point...I don't know if I have the variety relapsing acute? My counts always drop to virtually zero so it seems different to when people have counts over 30. What has beens your experience with ITP?

Thanks Vicki and so glad to hear your story!
Stress does seem to be a common suspect for many. Also I wonder if being that yours come seasonally in the winter if lack of Vitamin D is also suspect. I know Chad is following a protocol to hopefully prevent a remission that is all about dr assisted increase in Vitamin D supplementation. In the winter we get practically. none from the sun. My ITP came at the end of the winter, too and relapsed in the fall when it was starting to get darker/colder. I've never taken Vitamin D supplements until after talking to Chad. Now I take 5000 iu/day with 200mcg K2

I also hear about people feeling as though prebiotics and probiotics help them. That makes some sense too as I know that our gut health plays a big role in autoimmune function.

My update: I tapered off prednisone and my counts stayed in the normal range. 170,000 yesterday after being off for 3 weeks. I can now move from weekly labs to monthly for the next three months. Crossing my fingers that it sticks for a while. In the meantime I'm being pretty critical about my diet and exercising just to keep generally healthy. I take vitamin D, Prebiotics (fiber, basically), Probiotics, and vitamin/mineral supps. also avoiding processed foods and seed oils.

Some months ago I tuned in a bit late for a presentation from hematologists who attended the yearly convention. They mentioned that those with ITP should avoid plane travel.  I missed the part where they stated the reasons for not flying, and I'm curious to know the repercussions.  Can someone please provide this information.
Thank you, Sue Mullen

My platelet count from May to Dec 22 are as follows;
14/05/2022 144
25/06/2022 151
20/08/2022 148
15/10/2022 171 (infected with COVID-19)
31/10/2022 186
18/11/2022 178

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

I did some research based on my own case re the above subject. My platelet dropped significantly two years ago and stayed in hospital for one week undergoing some IVIG and steroid treatment. Prior to ITP symptom, I had hypothyorid and was taking bee propolis as generic nutrition. After discharge from hospital, I spent some time googling information on ITP and what I found is that ITP might have something to do with thyroid function and bee products. My hypothyroid was mild and I didn't take any synthroid. What I did after discharge from hospital is 1) taking synthroid everyday. 2) stop eating any bee products which inhibit the production of platelet. My platelet has ever since been showing a a stable 100 level, still lower than normal but nothing serious happened ever since. 
So in this thread I just want to share my experience in case someone have similar symptom. 

I flew from UK to Australia and back with a count in single figures. My haemo was fine about it 

Great news that your counts have stayed ok whilst coming off the prednisone. Long may that continue. 

Yes I often wonder about vitamin D, I take a supplement in the winter months. 

I definitely agree with point number 5. Two of my instances occurred after huge losses, however, I've since had other losses and stresses and not had it, so I think it's probably a combination of things. 

I find the recent research into Adverse Childhood Events really interesting and a little scary - www.pacesconnection.com/blog/adverse-childhood-experiences-increase-risk-for-chronic-diseases-it-s-not-psychological#:~:text=Risk%20for%20the%2080%20or,others%20goes%20up%20by%2020%25 .

I also think that Western diet and lifestyle has a lot to answer for autoimmune disease, I think there has to be a reason for the massive increase. I don't think autoimmune conditions were so prevelant pre industrial revolution.

Here is scientific study that the ACE (Adverse Childhood Events) and autoimmunity was looked at:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3318917/

I moved to Tokyo shortly after diagnosis and on 60mg of prednisone not knowing if I'd have a hematologist there [had THE best one ever!!] - both MD & hematologist knew about that long flight.  We then moved from Tokyo to Hong Kong and took many flights from there before moving back home, sometimes not knowing what my count was.  I was never told not to fly.    I'm not telling you to fly, just telling you what I did.  

What does your hematologist say?  

Good to see you drbean!  Your count is doing great - interesting covid increased your count.
Are you still in Hong Kong?

Hi MelA

It's good to hear from you.  I am still in Hong Kong.

My count is doing great so far, espcailly from Oct 2022. 

I am not sure due to infection of COVID-19 or a new manager is transferred from other department.

I didn't have shingles at the time of this optic disc swelling.

My doctor said that the symptom might due suppressed due to Acyclovir.

Just want to wish everyone a very happy and a very healthy New Year!!!
Never thought I'd live to see a year called 2023 - wow!!
Take care you all!!!

The same to you, Mel.
I wish you all high platelets.  I wish I could share mine.

You are a dear person Cindy!!

So far my count is ok - will see what it is next week when I get a CBC and see the hematologist.  Since I'm now on a daily baby aspirin he's keeping a close watch, so far so good.  

Hello,
Has anyone tried ITP KIT from GetWellNatural, if yes what is your experience?

I have not tried it - and I never will.
$139.95 for a month's supply.......

I apologize that I'm just seeing this now.  Mary Jo cared for our son's ITP starting a few years after he got it.  She is very good at what she does and she has since taken over the care of all of my family members. Yes, there are good and bad homeopaths and I've experienced both. Mary Jo has been my entire families healthcare provider for almost 12yrs.  Our son with ITP has other complicating factors, gene mutations, etc that make his ITP a bit different than most. She has done an amazing job keeping his platelets normal and him living life well.  ITP is normally very easy to treat homeopathically.  Our son's gene mutation complicated his case.  Nonetheless, having his platelets near normal and him doing well makes us more than happy.  That said, legally, no natural doctor is allowed to claim they can cure anything so you will not hear her say that.  You will hear her say that homeopathy can have a solid effect on one's overall health, including bringing their platelets to a normal count.  Hope this helps!  Sorry it's been so long.  I don't come here often.  

Thanks, Mel.  I'm glad the doctor is keeping an eye on you.
I wish I had enough platelets to share with everyone!

Hi guys. I got diagnosed with ITP 3 years ago. my count dropped to 5k it was prettty scary. i have been getting tested almost regularly since. and my count was never lower then average after that. i just wonder has anyone experienced a drop after like years of good results? 

Happy New Year Mel, Cindy, everyone!