Just relapsed after 13 years. Wondering what the latest is in treatments...

That’s cool. I’m going to find a Coimbra doc. I like the sound of that. I’m taking 1000iu of vitamin D now. Not close to 5000 or 10000 but prob more than the avg person. 

Nice to meet another person into all these things that cause my friends to wonder about me. Ha ha 

www.coimbraprotocol.com
"The Coimbra Protocol relies on doses of vitamin D that range from 40000 to 200000 IU daily..."

Before taking massive doses of anything you should be tested to see if you need it!!  Just to jump in and start taking massive doses can be detrimental to ones health!!   I had to take large doses of Vitamin D because blood work showed I was low in D - that's when you take it!  Can't recall the amount I took or for how long but it was a high dose only 1 time a week!  I now take 2000iu a day as instructed by the doctor.   There is such a thing as vitamin D toxicity.  

I'm for trying new things, but only if needed.   
 

Mcafiero, yeah it’s been refreshing to hear other doctors perspective on things bs just what the Kaiser Dr’s have to say. Unfortunately it seems like the goal in most is to push heavy pharmaceuticals. If Yu have any questions feel free to reach out. My number is 951-746-9484.
Mel, yes you are correct. That’s why I’m seeing a Dr for it and he’s monitoring labs. They will also usually prescribe K2 with D3 which helps it and calcium go where it’s needed. D3 is so very important in our immune function it seems and most people are deficient in it due to not being in the Sun enough in our modern society or through having it depleted in our system by refined sugars. 

 According to the National Academy of Medicine, formerly known as the Institute of Medicine, 4,000 IU is the safe upper level of daily vitamin D intake. However, doses up to 10,000 IU have not been shown to cause toxicity in healthy individuals 

mcafiero what I posted says 40,000 to 200,000 iu daily:
"The Coimbra Protocol relies on doses of vitamin D that range from 40000 to 200000 IU daily..."

Chad to be honest with you, once my D got into the normal range I haven't had sinus infections as in the past.  Yes, it is important to our immune system.   I just question the 40,000 to 200,000 daily if not needed. 

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

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. 

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.

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. 

Chad - I was in great shape after a splenectomy in 1993. I went almost 18 years without thinking about ITP and it “returned” after a flu shot in 2010. I had avoided flu shots forever.

That said, so glad that your counts are holding.

Be well.