Is ITP "Progressive"?

I have tried to research this but surprisingly haven't found it discussed much. I did read on one website that ITP is not progressive. However I have read many of the stories here and it seems as though it is not uncommon for people to have dips in their platelet counts which require treatment and that some people have more severe cases of ITP than others. If I may ask, have most people here stayed within a relatively fixed range for many many years?

I have not been officially diagnosed with ITP. I had a routine blood test which was my first in 30 years. My family doctor retired many years ago and it was difficult to find a new one so I just didn't bother. My wife finally found me a family doctor and talked some sense into me to get a routine check up in November. Next thing I know, the clinic calls and says I have to see my doctor in two days and that it's urgent! My platelets were 63 and my white blood cell count was 3.7. So I have an appointment with a hematologist on January 5th.

I did a follow up blood test in December (exactly 1 month later). I completely changed my diet, introducing more fruits and vegetables which I was sorely lacking as well as freshly squeezed juices. I stopped talking Echinacea (which I was taking on a daily basis) as I read that could lower your platelet count. I also cut down on some other supplements I was taking for the same reason: MSM/Glucosamin/Chondroitin, Celadrin, and Omega-3.

I did a second blood test in December just to see what was going on. My platelets went up slightly to 66 but my white blood cell count fell from 3.7 to 3.5 (and my Lymphocytes fell from 1.2 to 0.9). My diagnosis of choice is ITP if it's not typically progressive. It's a lot better than a bone marrow disorder/cancer or Lymphoma which I'm hoping with all my heart is not the case (we just had our first child not too long ago and he turned one in December).

I tried to determine how common ITP was but came across two very different pieces of information.

1. The latest review study reports that the incidence of adult ITP (how many people get diagnosed each year) is 3.3 per 100,000 adults/year. The prevalence (how many adults have ITP at any time) is approximately 9.5 cases per 100,000.

2. A small proportion of the population (approximately 2.5 percent) will have a baseline platelet count lower than 150,000/microL, because normal values are typically determined based on the 95% confidence intervals around the mean.

If 2.5% of people have a "normal" platelet count under 150, wouldn't 250 per 100,000 adults have ITP (as opposed to 9)?!? Maybe the discrepancy in part has to do with the fact that many people who have mild to moderately low platelets have no symptoms and therefore don't generate show up in the "case statistics"... Have any of you in speaking with your hematologist been able to ascertain exactly how common ITP is? case/diagnosis of ITP?

Thank you for reading this.

At the age of 65 in 2012 I was found to have a platelet count of 42 when I had a blood test for another condition( that was negative).
The first step after that was to have a bone marrow biopsy to see if the problem was lack of platelet production or bone marrow disease.. The scan showed adequate production and no disease so it was assumed my problem was auto immune destruction of platelets, therefore ITP was diagnosed.
The next step was to find where the platelets were being destroyed,spleen or liver. An indium tagged scan showed destruction in both. This info is useful in providing an argument against splenectomy.
Unless your platelets fall below 50 you are not likely to need treatment unless you need major surgery. Here in Scotland you would just be monitored., Mine fell quickly from 42 in July 2012 to 3 in Sept 2012 so I was treated at first ineffectively with steroids and ivig.
After that Promacta worked ok for about 2 yrs ,but now my count has stayed below 20 for 6 mths despite the meds. So I suppose you could say that for me ITP has been progressive. However one thing I know is that we are all very different in our disease pattern and in our responses to meds so it is impossible to generalise. Being younger you may well have a very different experience.

Possible explanations:

• "Normal" is 150,000 but the cutoff for ITP is 100,000.
• There are many cases of low platelets that are due to causes other than ITP.

Regarding progressivity: for some people, ITP gets better and for others it gets worse. There is an increased incidence of ITP depending on age, but that doesn't necessarily mean ITP is progressive.

Before the blood test, I didn't really give much thought to health and what other people go through who are fighting something. That has all changed in the past few weeks. My heart goes out to each and every one of you who are fighting something. It sounds so scary. I'm not sure if it shows up anywhere, but I am 44. Margaret, I assume it was because of symptoms that you did the Sept 2012 blood test only two months after the preceding one? One thing that worries me is that my white blood cell count is already below normal and it fell from 3.7 in November to 3.5 in December (it's marginal but the fact that it's falling could signify something else but hopefully does not and is just random fluctuation). Do you recall what your white blood cell count was when took the steroids? I have read that they "suppress" your immune system which I assume means that it would further lower my white blood cell count. Thank you again for taking the time to post, I am very grateful.

Actually, steroids usually raise white counts. I know that seems odd. White counts do fluctuate, so you'd need to see a trend or have worrisome low numbers before that would be considered for a diagnosis. Platelet counts fluctuate a lot too.

ITP is not progressive. It is usually a series of ups and downs, but it isn't something that gets progressively worse over time. It can start out bad and remit or it can just be something that you deal with off and on for years. Many do go into remission or maintain safe counts (usually any count over 30k). Most do not treat over 30k unless they have symptoms which is rare at that count.

The bone marrow biopsy does not prove that production is adequate; that is a misconception. Just wanted to throw that out there so there isn't any misunderstanding about that.

Most people, in time, consider ITP to be just a pain in the butt thing. It takes time to get to that point and usually only comes after it is controlled with little effort. It can take a while to get to the meds that have few side effects (protocol).

Good that you stopped the supplements. Echinacea has been known to trigger autoimmune disorders.

Best to wait and ask the haematologist about your worries when some investigations have been done. From the point where I turned up a count of 42 I was referred to the care of my local hospital haema department. They were investigating and monitoring my condition when I dropped lower and lower to 3 in Sept 2012 and they have continued to manage my treatment. That's how it works in my area of the U.K. I just go to my GP practice to have blood taken by the nurse.It goes to the hospital to be tested and the results go to GP and the haema dept. I hope you get a good specialist who can answer your queries and investigate your condition thoroughly.

Hi

ITP doesn't appear progressive to me, I was diagnosed in 2012, extreamly low counts. Had all tests bone marrow etc. In the last 4 years my counts have never quite reached 150, they go up and down and have only been extreamly low twice. Steriods have worked for me, nasty side effects though and once off them, they drop back under 150.

I also have issues with low white blood counts.Like Sandi mentioned on steroids my white counts also rocketed. After more tests biopsies I have been diagnosed with intermittent immune neutropenia as well.

My Heamatoligist uses the expression that my disease " waxes and wains" . I had struggled getting my head round it at first, but after finding this forum and getting the experience and advice off everyone on here, feel more comfortable with it. It's a nuisance but now for me nothing more than that. I just wait for the next inevitable relapse but just get on with life as normal, and react when I get the signs and symptoms that I might be running low.

Hi John,

I'm assuming that if you were treated with steroids that your platelet count was well below 50, is that correct? Since your low count in 2012, would you say the relapses are every year or two, something like that? And lastly, how often do you get a blood test to monitor your count, twice a year?

Thank you!

Hi

Yes my count on treatment was well below 50. I think it was 30 when all the investigations started. I have had two big drops since the initial diagnosis, so for me it has been one crash a year (approx). My worst numbers are less than 10, I think my lowest was 5 or 7. My platelets / all my bloods rise then fall, almost in a cycle. I have been and am on 3 month check ups. When it appears to be relapsing, I go monthly, and when I have been treated I have been weekly to daily ( daily was when I had a large active bleed on my leg).

I am early 40's swim, run, excercise, watch my diet and none of that has seemed to make any difference to my disease in fact sometimes I can feel really great, loads of energy frequent exercise feeling pumped then the fatigue starts (big thing for me, my energy level just tanks) then I am in the downward spiral, can barely swim / exercise as I feel too weak, nose bleeds, bruising etc. Not sure if over exercising puts too much strain on your body when it's faulty.

Hope all goes well for you, as you have probably learnt from this site we all experience this disease differently but do have some common features across others.

Thank you John. I too am in my early 40s and swim, run, and exercise. I wonder if you can relate to something that happened to me a few months ago. I worked out, went for a 30 minute swim, went in the sauna for 5-10 minutes, then took a shower. About a minutes or two into the shower I was overcome with nausea and as incredible debilitating fatigue. I felt that if I moved so much as an inch I would be sick and had zero energy suddenly. Never happened before and thankfully hasn't happened since. I figured I made myself a little dizzy from swimming or maybe I got up too fast in the sauna. I wonder if perhaps I had some kind of platelet crash that day? Up until the shower I felt perfectly fine. Maybe it's like you said, if your counts are low and you're simultaneously straining your body, your body might warn you to slow down...

I'm wondering if any of the supplements I took might have had an adverse affect when it comes to my low platelets. Here's what I've been taking daily for the past 2-3 years (without any advice from a physician I should add):

Creatine (after working out)
Men's multi-vitamin
Glucosamine/MSM/Chondroitin (for joints)
Celadrin (for joints)
Omega-3
Echinacea (have since stopped)
Apple Cider Vinegar (I heard this was good for reducing a lipoma, but can't say it has helped)
Neem (I heard this was good for reducing a lipoma, but can't say it has helped)
Flaxseed oil

Do you by chance take any of these?

I have a small lipoma on the back of my head and I've tried all kinds of things I saw on the internet to reduce it naturally. I've put apple cider vinegar on it, lemon juice, flaxseed oil, tumeric, chickweed oil... God only knows how this affected my system, lol. The only thing that helped reduce the size of the lipoma was a lot of regular running but then as soon as I let up it would return to the original size.

I can not say I can relate to the nausea or sickness with this particular condition, but the debilitating fatigue I can.

I know until recently fatigue was not always linked to this, but my current doctor says it is, and he has been interested to note when I get this fatigue. As someone who is fairly fit who can normally easily do 60 laps of the pool before work, some days which I now (rightly or wrongly attribute to this) I can not lift my arms after 10 laps and get out of the pool, literally almost as soon as I've gotten in. I have to then cease all strenuous activity. I did learn the hard way, after pushing myself doing weight training and ended up with bruises on my legs where the muscles I guess we're tearing. I have had to go on a drug to stop the active bleed, (although they appeared as self limiting bruises on the muscle).

Like a fool I didn't really connect that maybe lifting weights with this is not such a good idea and was cautioned, quite rightly by the good folk on here to consider light excercise / walking as opposed to something which will end up in a bleed. Doh : :huh:

It's all a balance and I guess you need input from your doctor on your own case.

As for supplements, I take creatine, multi vitamins, protein shakes. Never stopped taking them, as I say for me I have tried all sorts, of combinations, dropped sugar, ate just fish, sweet potatoes, no booze, fruit and veg, nothing has obviously made a difference to me, it's like a roller coaster, and your on it, whether you like it or not, until it stops. That's not to say that I don't try to do as much as I can to improve my health it all has thus far amounted to the same old up and Down. So I just ignore it as much as possible.

I appreciate your anguish, I thought the same thing re lymphomas etc and had biopsies, bone marrow, and X-rays and I would much rather this than the alternative.

I wish you well, sorry if I rambled.

Can't you just have a good protein shake after your work out instead of taking a pill? I have protein when I'm finished. Also everything I've just read about creatine said to consult your physician before taking it.

I was having blood vessels in my fingers break - MD told me to stop taking a vitamin with E in it - did and don't have that happen as often. Could just be a coincidence.
Echinacea, the bottle I had said not to take if immune problems.

pdsa.org/about-itp/warnings.html

I had a little fatty "bump" on my leg - it went away. Not sure what Neem is, will have to google it. What happens if you leave it alone.

I'm currently in the "below normal but not ITP" range. My counts have round around 110 to 120 for over a year now. My most recent hematologist put air quotes around ITP when discussing it with me, though because I've had counts below 100 he wants me to be monitored.

The frequency (prevalence if you prefer) of ITP is hard to figure out because the diagnostic criteria have changed over the years. To complicate matters, the range for normal platelet counts is calculated using statistical techniques involving means and standard deviations. These assume a normal distribution (bell curve) for platelet counts, but that may not be what actually happens. This means that the clinical significance (if any) of a platelet count like mine can be hard to interpret.

When I was first diagnosed I read extensively about the long-term prognosis for ITP. But that was not as well-researched as I would have liked. It seems that ITP isn't progressive, but as one doctor I talked to put it: "so many things can get worse with age." In contrast, another doctor I know told me that ITP would likely not be one of my major health concerns as I got older.

Hi H- Omega 3 and Flaxseed oil can make the platelets less able to do their job. I don't take those supplements or any fish oil because my platelets are often below 10-20K even with treatment. Once I took Omega 3 for 5 days and was covered in bruises. I figured it out, quit the supplements and bruises went away within 48 hrs. I have to learn from experience I guess! Your counts at 63 are pretty good so you might not have that problem.

I agree with everyone in that ITP is not progressive, it waxes and wanes as was said. If you think of the immune system as a little army that thinks the platelets are invaders, it makes sense. Sometimes the army is working hard and sometime its backs off- mine seems to always be on the job.

I heard a story recently about a person who had a consistent platelet count between 10-20K without treatment, never lower. They had a splenectomy thinking the platelets were being taken out through the spleen and that would stop the removal. Well their counts shot up to 400K for a short while, then crashed to zero. And their counts never came back up to 10-20K again.

The way I understand that is that the platelets were being taken out through the liver and spleen. So when one exit was eliminated that caused a back up of 400,000. The immune army detected 400,000 invaders and ramped up its forces to really clean house! So now the army is on high alert and wont allow any build up of invaders- and counts (without treatment) remain consistently at zero. The counts may go back up one day but if the immune system sees something as a threat, it can tend to have a long memory. take care and good luck!

Most people with ITP also have platelet production problems. So there's that.

Yes, Sandi- good point. Thank you. Yes there is the problem with production and destruction. Of course its all way way more complicated than my simple scenario. But it helps me to comprehend the complexity if I can visualize it.

I'll add- I'm no expert and not for certain that the immune system ramped up its destruction after the person got a splenectomy- thats just what I imagine happened. I hadn't thought of production decreasing to reset the counts at zero. hmm.. Something triggered a shift, hard to say what. But it does seem like a case of ITP "progressing" in a way possibly in response to splenectomy. And if it had happened to me it would frustrate the heck out of me! In my (hindsight) experience its important to consider carefully whether to treat on not. My counts were around 10-14K for 2 years before I began treatments. They dropped to 6k so I began high dose prednisone. Now I am at zero without treatment. Maybe they would have dropped naturally but I wonder if it wasn't the treatments.

Thank you all for sharing your insight. I have read that in healthy individuals there is a very slight decrease in platelet counts over the years (0.5 - 0.9 a year depending on the chart/study). However it may very well be a percentage drop in platelet count so people with a low platelet count may decrease much more slowly than that (to the point where you could say they were virtually stable).

My platelet count usually stayed between 20,000 - 30,000 unless i got a cold or a flu then they dropped under 10 and I had to get treated. About a year and a half ago I changed my lifestyle and became a yoga and fitness instructor. They have now never dropped under 60,000 and recently (and finally) made their way over 100,000. I've had ITP for 12 years now and don't take anything for it on a regular basis.