things i've noticed about itp..please read

Hi there, my name is Aisling and i have had itp since i was 13
Well to start off, i have gotten itp sporadically since i was 13 and i am now 27. I am trying to see what are the factors and i was hoping that you could also respond to see when exactly it had been triggered. I hope to write a piece on it as its valuable to piece together why it happens.
Factors i have noticed are as follows.
1) Cold/ flu virus/bacterial infections: This was the first thing that set down my platelets before i got diagnosed. Obviously my body was fighting my cold and inadvertantly attacked my platelets.
2) Envirnoment: Since i have moved to London and with the bad air here my third episode of itp that i got was after a common cold but this time it stayed down for quite a bit and has never really been the same. I strongly think that my body has not recovered due to the toxins in the air and the pollution. I have also developed asthma as a result of the bad air here.
3) Stress: if i think too much about my itp and i tense up, i can nearly see the blood spots appearing on my arms. Under any sort of stress, really ensures that my platelets drop.
4) Diet: One which i know a lot of people will agree with me. I have spent the last year eating crap food as i have NO time to cook homemade meals. Alot of chocolate and sugar as well. This one i think is the biggest factor.
If anyone has any suggestions or ideas as to why this is happening and what has influenced this, please reply. I do think that obviously genetics plays a part as auto-immune diseases are rife in my family but i dont always just buy into that. There has to be something else. It should not be so hard to figure out why some people get ITP and others dont. I know im probably saying what everyone else knows but surely there has to be one thing that can help in identifying the source of the problem. Another one that may be possible is
5) Immunisation: I am pretty sure a few weeks before i got itp i had some sort of immunisation.
Thank you Aisling

hello Aisling,

re: Chronic Stress

We spent 10 years in England (north Oxfordshire) and 2 in Munich (southern Bavarian village) on my wife's expat assignment. We lived in idyllic countryside locations in both countries which was great for my health and ITP. What was not so good was the stress of moving internationally and acclimatization to all the change. I had ITP symptoms for several weeks around every move we made. Canada to Germany to England and back to Canada. What are the odds?? The stress of moving was a major trigger and prior to last year these occasions accounted for 3 of the 4 relapses since my splenectomy in '94. So chronic stress (as described in this link) is an issue for ITPers IMO. There is no doubt in my mind.

www.apa.org/helpcenter/understanding-chronic-stress.aspx

re: Allergies /Food intolerances:

I think that diet is very important not only for eating very well, but to also be aware of food allergies or intolerances. Allergies will ramp up your immune system which will promote ITP symptoms (I've seen this directly with my sensitivity to chlorine). Also as an aside I think that air pollution is a major negative for many city dwellers with ITP. See this link on allergies promoting ITP I posted recently:

www.pdsa.org/forum/8-natural-treatment-methods/26927-allergies-that-cause-itp.html

re Diet:

Plain and simple, ITPers have to eat well. There is no way around it. If you want to manage your ITP, you need to do this over the long run. Otherwise it will catch up to you. A thorough detox diet will also help you manage out of an ITP crisis. It can be done in combination with other natural approaches. Here is a link to my experience last year.

www.pdsa.org/forum/8-natural-treatment-methods/16325-treating-itp-through-diet.html

If you do nothing about the above factors (that is if you think they are an issue), you will probably be running back and forth to hematologists for the foreseeable future. This is my opinion and one that many will disagree with. However, I successfully overcame my ITP crisis last year and there others that have done the same using natural methods. It can be done! GL

cheers,

john

I don't know, guys. It's not that simple. How do you explain the 15 month old who gets ITP? No stress, no history of junk food. Vaccine maybe? Possibly.

The genetic predisposition is there, it just needs a trigger or two. Why do people get ALS or MS or cancer? Nobody knows. Bad things happen to good people everyday, and no one is immune to illness. As Erica once said "the human body is so complex it's amazing that everything goes right". So true. Of course it's always good to do the healthy thing, eat right, avoid stress, exercise, but that still doesn't mean you will avoid medical issues. Plenty of healthy people have been diagnosed with ITP, and how on earth is stress completely avoidable?

I'll admit that I was diagnosed with ITP at a time when I was under a lot of stress and I also had a nasty cold at the time. But I've been sick since and had a lot of stress many times without a platelet drop. I've actually had drops at times when things were going well. Go figure.

Story time: Back in 1982, I had a blood test that came up with an unusual result. Back then, no one knew what it meant. Around 1990, I mentioned it to a doctor for the heck of it and he said that it meant I 'may end up with a connective tissue disorder someday, like Lupus.' I didn't worry about that, just filed it away. Wouldn't you know it, in 2006 I was diagnosed with Lupus. Twenty-four years later. I had one of the antibodies, but it caused no problems for many years, even after I tested positive for it. I have an idea as to what the triggers were, but in retrospect, I wouldn't have known to avoid them and cannot undo it now. One of them was using a tanning bed, which is known to trigger Lupus in predisposed individuals.

So anyway, for those of you who think you know what causes your drops and if you can avoid those things, by all means, keep doing so. Live as healthy as you possibly can. But do you really think that by making those changes, you will prevent every possible future medical diagnosis like you think you should/could have prevented ITP? Unfortunately, you can't avoid life which is full of unclean air, car exhausts, E Coli tainted foods, pesticides, mercury.....

hi Sandi,

I once met with a hematologist in the UK. My GP kind of pushed me to do it for posterity sake; "You've got ITP so you really should be seeing a specialist".

I asked this hematologist if she thought there were any "triggers" or causes for ITP. The perfunctory reply was there were no know triggers or causes. Period. It was a short conversation. Where do you go from there?

The immune system is very complex. We take that as a known. Once your immune system starts producing platelet antibodies every time it sees something it doesn't like, you've got ITP. There isn't much you can do about it. IMO it's much like an allergy. You are allergic to peanuts. There is nothing you can do but avoid eating peanuts. Dead simple. If you don't the consequences can be very severe.

So if you knew somehow what is triggering your ITP symptoms to appear, you would do the same thing as the person with a peanut allergy. You would avoid that "something" that will set off your immune system.

So the 15 month old who has ITP is producing unwanted platelet antibodies. Why? There is a reason we just don't know why. It could be genetics and the unfortunate fate of that baby. Why do kids become autistic at the young age of 18 months? I watched this happen to a nephew. There was nothing that could be done and my sister-in-law did her very best to offset the effects of this disease for her son.

My uncle had MS and died at a very early age. That is one autoimmune condition which is a disaster health wise. I was always a bit concerned about getting it through genetics, but it never happened. There is a mechanism that causes MS. We don't fully understand it today, but that will change.

I think it is the same for ITP. We just don't know enough today. But if I can escape the destiny of 3rd and 4th line treatments for ITP, I will take whatever measures I can. You can't give up on that.

I think ITP occurs through a combination of factors. Likely genetic and then some environmental factors that trigger the immune system to produce all those platelet antibodies.

I think if you get to the point where your immune system goes beyond the point of recognition, (ie. starts attacking more and more good cells), you are on your way to some very serious health issues that are are possibly irreversible.

The immune system is very complex ...

cheers,

john

I believe my ITP is triggered by hormones. My platlets have only EVER droped when I started to mature at age 12, and after I had my children. Oddly enough it was between 4-6 months after my deliveries that my counts dropped.

Hello, I am Dori. I just turned 58 years old not long ago, so I was 57 when I was diagnosed with ITP in Sept. of 2011. I found this website shortly afterward, but this is my first time to post any comments. It seems that those of us that have this disorder have a hyper immune system. I have been one of those people that could be around sick people & never come down with whatever it was. I would not feel good, but push through it and never miss school or work. I have read so many things about this disorder, but the truth seems to be that there are no certain answers in general, which makes this disorder so frustrating. I had a flu shot a couple of weeks before I was diagnosed. My Hematoligist recommended that I not have another flu shot. I took a round of prednisone,and bounced back exceptionally well. Then at the beginning of July 2012 I relapsed. We did another round of prednisone. It was not as successful as the first time, but I finally came up into normal range. The effects of the prednisone this last time were awful. I am a diabetic, and my Dr. has recommended Rituxan if I relapse again. When I was diagnosed my #'s were 10 & 12 (thousand). I came up to 20 the next day. I noticed what I think is a small blood blister inside my cheek next to my back teeth today. I go to the lab tomorrow to have a CBC. I am a little nervous about Rituxan's side effects. Have most people that come to this site responded well to this medication? I pray we all will fully recover. I have felt pretty alone with this. Most people have never heard of it, and don't understand how we feel. This wesite has been my go to place to try to get information. Thank you for this site. I guess it is time for me to send some monetary support to help keep this going for people. I received something in the mail that I can use to mail a check. I guess I'm old school, but I prefer to mail checks,than to use a card online. Thanks again.

Hi Dori,

Is the goal of your hematologist (and you) to get your platelets within the "normal" range? That is not the goal of most of us here. Most of us try to keep our platelets at a "safe" level--not safe for surgery, but safe for normal functioning. My hema and I try to keep me above 20K, which doesn't usually take too much prednisone, in my case.

I'll let those for whom Rituxan worked respond to your question about that treatment. It didn't work for me, but it didn't result in any uncomfortable side-effects either.

My doctors always recommend I have flu shots--any shots that don't involve live vaccines. I've never noticed any change in my platelets that could be attributed to shots.

Hi all, thanks so much for the replies. I guess i really want answers, like most people and i just really believe that there has to be a factor to why i got this. To be honest, my mothers side of the family has loads of auto-immune diseases, from thyroid diseases to crohns, but why is it that i get a rare blood disorder. It may be genetic but why would i get this?

Sandi, i know what you mean about a fifteen month old getting itp. There are no answers but i genuinely believe that envirnoment relates hugely/ Geography has a huge amount to do with what happens to your body/ Thyrod disease has huge prevelance where i grew up.My mother and sister and all my aunts have thyroid disease. If you look at certain areas around the world it will have certain

John, my trigger im pretty sure starts from a viral infection and then the pollutants and stress seem to keep it down. Its the same with any auto-immune disease i guess, every little bit of stress makes an impact. It pains me to think that i cannot help to heal my own body, if i knew for certain what a trigger was i would stop. I guess we all feel frustrated.

belydncrck01 glad you know the cause and i think that if we can all pin point what is happening to our platelets it would be great. This is great research.

Dori, i know how you feel with being alone. i have not heard of anybody who has this. Its hard to explain to people when you feel like this. The good news is that although its a hassle it can be managed and sometimes its trial and error. Like all of us, there is some sort of trigger and the thing is we have to take a good look at what is happening to us. Sometimes doctors will give you so many different options that your head spins and you feel like you dont know what way to go. I tried steroids that did me NO GOOD. After arguing with a doctor saying it made me feel the worst ever and little movement in my platelets i got a new haemo who took me off them and put me on an immuno suppressant called CellCept that after a few months slowly brought things up. Everyone is different and react better to certain treatments. Steroids works for some, others like me does not.

Remember its your health and once you're out the surgery door,they are onto the next patient so the only way to get there attention is to literally turn up everyday until YOU feel you have gotten the best treatment.

Thank you for your message. I am sorry I have not been on this site for a very long time. I don't have much time due to the work I do. It seems there are no sure answers about this disorder. It has been frustrating, but I have learned to cope, and not be so obsessed about it as I was when I first had this condition. I hope you are well.