Hope your platelets keep going up MrsB!

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

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.

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

Has anyone tried reducing lectins in their diet?

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. 

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.

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. 

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 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. 

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.

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. 

youtu.be/ezuyfGLph4Q

youtu.be/zy-jEXIxpSo

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

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!) 

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.  

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. 

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. 

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.

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

My counts were over 100 for a few months, testing only every four weeks.. 102, 136, 102, 103 etc. So I did every other week for a while.  Then as they stayed over 100 stretched it out further. Eventually my count went over 200 so I stopped altogether. We don't inject if over 200.  I was then off it for over four years and crashed down to 1. Did Nplate again for eight weeks, count 184 and stopped.

I've only got joint pain everywhere since I used Eltrombopag, so for me I think it's probably a side effect that persists and can be fixed someday. Eating salmon and tuna helped a lot, I actually stopped being vegan after 17 years, because it improved my pain and my platelet level.

Does anyone have neck and shoulder pain along with joint pain in your fingers and knee. I am thinking maybe I got RA . Does anyone have arthritis along with ITP? Since ITP is auto immune wondering if RA is an easy possibility as well?

Luvmycat you may vent any time you want, we don't mind - it is nice to know others going through the same thing, not to mention it IS frustrating!!   

I put my computer clock back to 31st July and that let me in. Got in normally today. 

I had to over ride my security to get in yesterday too.
No problems today!

Thanks for all the replies.  I believe that some doctors try to gloss over any side effects. When I asked the new hema about side effects, the ONLY thing he said was that the one had to be taken with a meal containing calcium.  Did he not think that we were going to do the research?  In my personal opinion, sometimes I think that getting the 'numbers up' is a feather in the doctor's cap but the patient is not fully considered. The list of side effects of these drugs is a mile long. It irritates me that these were not even mentioned or discussed with us.

The other thing I read about is the frequent bloodwork getting the dosage correct. My husband's veins are already tough as leather because his original hema many years ago wanted bloodwork every 2 weeks. This went on for a few years until she wanted to do some exotic test every time he had an office visit....24 hr urine catch...things like that. What does that have to do with ITP?  There was nothing else in his bloodwork that would warrant any other tests. ITP is ITP.

No real info in this post...just venting...or maybe blogging!

ImPatient 
Yes I returned to my normal pattern. 

Great Jeff - thank you!!

(If I could delete this thread I would)

Melinda

Hi Jeff - Sorry, I had forgotten the Conference was going on.

I sent a private message to a member and she said it took a while for her to get notice that she had a new private message.  So it would be concerning a private message notification.  So far when I have received a new message I am getting a notice right away.

Thanks Jeff!
Melinda