Interesting here they won't inject if you test over 200 for three consecutive weeks or if you go over 400. They won't increase your dose of start injections unless you are under 50. 
Can I ask how long it took after you stop the injections to go over 200 and were you over 200 at any time prior to stopping? Also, do you have any idea why you dropped to 1 i.e. were you ill or something else?
Thank you very much

RR01 have you talked with your hematologist or PCP about this?  There are tests to determine if one has RA.  Why not talk with your doctor and get the tests done?   I have arthritis, not rheumatoid arthritis.

Pre trial count was 6 last Monday, today it is 16. First time I've been in double figures without being full of Pred since May. 

So I came across quite a bit of new research suggesting that Vitamin D levels in patients with autoimmune disorders of any kind are usually low. If you get a chance to check out a few of the studies on Coimbra protocol and Vitamin D levels it’s quite interesting. Lots of videos by different doctors and double blind studies quite recently that show some good evidence. 

My levels were very low. I have been  taking daily Vit D3 supplement  for last 8 years but nowhere near as high as  Coimbra protocol.
Uk guideline is a max of 4,000IU/day to reduce the risk of hypercalcaemia.  

I’m looking for a nutritionist that is familiar with ITP, any suggestions? (Wasn’t sure if this was the best place to post, so please let me know if I should repost, thanks!) 

That is great news, mrsb!  Hope your count continues going up!

youtu.be/ezuyfGLph4Q

youtu.be/zy-jEXIxpSo

If you go through with Coimbra they monitor your levels and take care not to cause problems associated with hypercalcemia. There are a couple of YouTube links above and if you Google Coimbra protocol some other stuff will come up. One of the videos is the double blind study. 

You’ll have some people and Drs tell you that what you eat doesn’t matter but I believe that what we put in our bodies matters. Certain foods (especially processed) cause inflammation. We know that inflammation is not good. So eating less of the foods that cause inflammation could be beneficial. Also, I posted in the other discussion that there is some evidence looking at vitamin d association with autoimmune disorder.

Thanks so much for your response! Yeah, I’m trying to find specific information, like salicylic levels in foods and whether it’s a concern (or even more specifically is it found in the skin or inside of cucumbers?? Is it enough so that cukes should be avoided, or is it ok?). I also realize that everyone has their own thoughts and approaches and there’s tons of info. But what works for certain autoimmune issues isn’t applicable for ITP - lots in the Wahls Protocol doesn’t work, or at least the easy stuff like fish high in Omega 3 and 6, onions, garlic, turmeric etc. Also trying to not spend insane amounts of energy trying to figure things out, but wish there was less conflicting info. 

Most western medicine doctors are going to suggest medication and treatments of that sort because that’s what they are taught and they aren’t always allowed to tell patients to switch up their diets vs prescribing pharmaceuticals. Research Coimbra protocol. Also, eating healthy organic and unprocessed foods will be good for you regardless. Even if that’s not what raises your platelets substantially it still has so many other benefits. Look at the dramatic rise in autoimmune issues in the last several decades compared to what it used to be when people are minimally processed Whole Foods and used to spend time in the sun. 

Thanks, have been eating/growing organically for years, honestly doing all the “right” stuff, meditating, energy work, etc etc. Past 2 1/2 years of caretaking mom with dementia through Covid and then managing her estate (and all that entails) when she passed just sent my body in to a tailspin. Will read more about Coimbra protocol. 

I’m sorry to hear that. High stress times and events are also linked to recurrence of ITP I believe. Chronic stress has such a huge impact on immune health and how your body regulates.

Videos are interesting but I am sticking where I am for the time being:-
A] After waiting almost a year I have just started a clinical trial  www.clinicaltrials.gov/ct2/show/NCT03395210  and  have no wish to jeopardise it by changing current meds. 
B] I take 4800IU Vit D3 + 3000mg Calcium carbonate a day for my osteoporosis. I am not prepared to drop the dose of calcium as I normally run at a below normal level anyway. 

Has anyone tried reducing lectins in their diet?

Fantastic news mrsb !!!!!!!!!!!!!!!!!!
I so pray the increase continues !!!!!!!!!!!!!!!!!

Mine were quite low and I was put on a very high dose of D3 one time a week for so many weeks - tested again and in normal range and now I take 2000 IU a day.   I haven't had a lot of sinus infections as in the past since my D level is normal now.    

Everyone, in my opinion, should have their D tested.

Yes, got mine in 2012 got itp in 2013 never made the connection until this year. Going to get them out hopefully soon. 

Hope your platelets keep going up MrsB!

Does anyone take Tylenol daily with ITP. Does it affect platelet count? 

Hello everyone,
I have a 13 year old daughter who has chronic ITO (diagnosed about 1 year ago).  Has anyone tried papaya leaf tea in combination with medication or alone? Any good results?

Best,
Maria

I have been taking papaya leaf tablets(Swanson) - not sure if it's helping but I am continuing to take them. My platelet count is really low(25000) but I guess it helps to stay clear of any petechiae or bruises.

Hello lovely friends
Sorry this is a really long post.
Background:

Firstly, I am so far in my journey not 'chronic'. I have had (that I know of) 3 acute episodes. First one was at 18 years old, following a men C vaccine (symptoms were just feeling very malaise, and petechiae on my chest in clusters, noticed over the course of a few days) I eventually went in to hospital, on the basis that I just felt 'weird', and my platelets were 25k. They didn't treat me, just watched me over night, and discharged without medication, following up with a healthy count a few weeks later and until…

Second episode was October last year (11 years later), contracted covid and after a couple of days of fever and starting to feel better, I noticed a large blood blister in my mouth, petechiae on my feet and legs, and was coughing a small amount of blood (from my throat I believe). I went to hospital- count of 3k, platelet transfusion/prednisolone, kept for 4 days and discharged at 57k (platelets remained stable, and I had a successful taper in January)

Third & (I really hope) final- flash forward to today. I caught covid again a few weeks ago...was very anxious about this of course given the last time. Got through the first couple of days no problem, and the morning I was again feeling much better...I noticed the TINIEST bit of petechiae on my chest...almost invisible. So much so that my boyfriend told me not to worry and just try to sleep. After the last experience, I felt so incredibly anxious that I took myself to hospital anyway, and my platelets were at 4k. I was given 4 day Dexamethasone only (I seem to respond well to steroids) and so far my platelets seem to be recovering.
Over the past 9 months since the October relapse, my platelets seem to average at around 170k.

Now my questions!
Had I not noticed these TINY petechiae a few weeks ago, would this have been a disaster, or is there a good chance I would have recovered? I felt totally fine otherwise, no other bleeding symptoms, fever, etc. I seem to see that there is a distinction between 'bleeders' and people who get very low without many symptoms. I know that serious things can happen under 5k, and it is not necessarily worth taking the risk to stay at home and wait…but I would rather not have to spend days at a time in hospital, on the steroid treatment which had been quite harsh on me (have since developed very severe skin issues, lost a lot of hair, and the emotional side effects of not only the prednisolone but also as I’m sure many of you know, being in a hospital environment).
My biggest concern of course is that I seem to go very low before any symptoms appear, though my haematologist advised that this should perhaps be considered a good thing, as there are other components in the blood that create stability to prevent bleeding!
Does anyone else have experience with these low numbers/little symptoms?
I fear I am starting to become obsessed with numbers, instead of being able to focus on how I feel.
Are there others who only seem to experience drops like this when there is some kind of external immune stimulation involved? What are your patterns?
How do you feel anxiety can contribute to these episodes?

The other question would be about medication, and whether or not anyone believes that perhaps the ‘overwhelm’ of treatments that seem to be thrown at people with ITP in a frantic effort to bring the numbers up, could perhaps be contributing to some of the instability in platelets? Along with the anxiety we all seem to experience with ‘the numbers’, it seems like this disorder is incredibly overwhelming in terms of all of the processing/filtering of information we have to go through.

Sorry I know I’m asking a lot of things here!
I would just appreciate any insights anyone has into my history, or from your own experiences.Thank you for reading xxxxx

I have an appointment with one of the Coimbra protocol Dr’s at the end of the month. I’ll pass on any useful information I receive.

Assuming Tyenol is Paracetamol, I took it regularly when I broke my wrists. No affect on my platelet count.

Each person is unique as is their ITP to them. 
You recognise symptoms of a low count and go for a test.
If 4 days of Dex works for you then that is great. 
Personally if I was in your shoes I would carry on as you are. If you normally have a count of 170 then why do anything else? 

RR01  how much Tylenol are you taking daily?

Thanks for your reply!
My concern is that I *don't* recognise my symptoms, because my count gets very low before anything appears (the petechiae on I had at a count of 3k on my most recent hospitalisation was very very faint, and it was more of a 'gut feeling' to go to the hospital than the fact I was symptomatic)...so I find myself scrutinizing my body, or noticing small marks/bruises and becoming very anxious.
Do you have any experience with this?

Like you autumn I had a "feeling" my count had hit the gutter after a tetanus booster - I had not one symptom, not even faint petechiae, nothing.   I went in for a count, got a message later from one of the docs in my PCPs office that my "count was low and if you continue to feel bad come in" - WHAT?  I never said I felt bad and there was no mention of what my count was in that message.  Got in the car and drove the 4 blocks to the office and demanded to know what my count was (16k and dropping) and then went home and called the hematologist's office for an appointment.  (I have never felt bad or tired or out of sorts or anything when my count goes down)  

I used to check my arms/legs/belly for red dots - if I bumped into something I'd write down when/where so that if a bruise came up I'd know it was ok.  But I've been fortunate since having one WinRho IV after the tetanus booster dropped my count and have had decent (not normal) counts since.  

You didn't have any symptoms but you knew your count was low - that's a good sign I'd say.