Questions for Those Experienced with ITP

DelnStyle wrote: Thanks ladies.

Obviously, I would 'prefer' that they are not correlated. There's much greater benefit in that.

There isn't a choice, so you take what you get. Most people actually drop from an illness, and will usually rebound without treatment. There are no set rules for that though!

Good luck!

Well, Deln, you've certainly come full circle, from discounting "the number" to focusing on it intently. At some point I hope you will find a happy medium. FWIW, my platelets typically drop when I'm ill, and rebound as I recuperate. There's just no telling from one person to the next, and maybe not from one illness to the mext. In time, hopefully you'll find a way not to be so focused on discussing all the details and possibilities for why the count is what it is.

Hi Tamar,

I wouldn't say I'm 'focused' on the number, per se. Always looking for potential explanations of what's going on with the body is something that interests me, especially because I have a vested interest. If I could bear the multiple needle sticks (which I can't/won't) I'd love to see the 'number' each day, just to see if there's correlation to specific things I do or illnesses I have, etc...

There's only been a couple of 'changes' that have occurred for me the last 3.5 months. Who knows whether or not they actually have a platelet effect. (Besides of course taking the Decadron).


1. Been taking Vitamin C pills for a month.

2. Been taking a Probiotic for a month.

3. Have dealt with congestion/sickness for the past week or so.

Who knows if any or none of these things are contributing me being 'non-symptomatic'. Is it possible, sure? But how would we really know?

What would be of interest regarding 'actual numbers' is that if my counts are just randomly holding at 15,000 over the course of a month. To me, that would indicate that one of the above is having an effect.

One may reason to think the following:

If my platelets are 'increasing' over the weeks, then potentially the ITP episode is weaking and my counts are returning to my 'normal' levels.

If my platelets are 'decreasing' over the weeks, then I'm still stuck in this episode, and perhaps further treatment is warranted.

To stay the same means... something has changed? Albeit temporarily, but something has changed.

That's why, in my opinion, it would be useful to know the number on a more constant basis, but is not something I really want to subject myself to constant pokes. I've had enough of those for the past 4 months, and it's been nice to have a break.

Deln:

The problem is that counts fluctuate constantly. A count can be 5k in the morning and then be 10k in the evening. There have also been people who have had the same blood sample run twice; and got two different answers. Automated platelet counts are not an exact science, so seeing small ups and downs can occur often. I've heard so many people over the years say that they can predict counts by the symptoms, then will be totally surprised by the actual number. It's happened to me too. I had a chest full of purpura with a count of 50k. I wouldn't have believed that were possible.

Many people claim that Vitamin C can help symptoms of bruising, etc because it helps to strengthen blood vessels, so you could see less symptoms because of that.

It's nearly impossible to control counts by doing or not doing certain things, and even harder to correlate it. Did counts go up 5k because you drank pineapple juice yesterday or because the blood sample sat around longer this time? When you're dealing with a small range of numbers (0 to 15k), the margin of error of lab analyzers can eat up much of the difference.

How long will this go on before you consider yourself stuck in this episode? I've never heard it put quite that way before.

At any rate, no symptoms is a good thing. I'm curious as to what your counts are too!

7/6/2015

Good morning everyone. Got back from a family visit weekend out of town.

So, I've 'made it' a month since my last Decadron (40 mg x 4 days) dose. I do not have any of the symptoms yet, so a positive sign. I reckon that my platelets might be around 15,000 - 20,000 at the moment, but who knows. That's what counts are for.

I will probably get my counts checked on Wednesday, and see where we are at from there.

I've also finally seemed to kick the congestion/cold I had the past 7-10 days. How ironic will it be if my counts begin to crash to under 2,000 again? If so, I believe we may have some evidence. (But I'm hoping not).

So then by keeping yourself sick, you could eliminate treatment?

I'm glad all is going ell at the moment.

7/7/2015:

Got my blood count done today... I don't know if this is a mistake or not. It says 108,000.

WTF? Is this for real? I only got a test because I had a very small little red dot on my lip, not any raised blood blister or anything but what looked like a small petichie type thing the size of a needle point. I was expecting 14,000. I want to be 'happy' and will be if this is a true count, but I really don't want to get my hopes up just yet.

Deln,

For some of us, the Decadron pulses do work. This is great news!! Just enjoy yourself while you are feeling better and remember to take care of yourself. Too much stress isn't good and you need to get your rest. This will help to make them keep working

Thanks DeeDee. I will keep my fingers crossed that things stay well. We will see.

Well that's good and very surprising news! I hope it stays up! Weird things happen with ITP. You never know.

Here's my concern with all of this (IF, and it's a BIG IF these numbers hold at this point).

Over the course of the past 4 months, basically... I have had Prednisone, IVIG (which we know is a temporary fix that only lasts a couple days) and Decadron.

Here's my issue. HAD I taken either Rituxin, NPlate, Orencia, Cellcept, etc.... We very well might be assuming and saying that the rise was due to the Ritux, of Nplate, or one of the drugs that was administered.

Herein lies the ultimate difficulty. When to treat, when to not treat and 'ride it out' as much as possible to give the body a chance to recover.

I am certainly not out of the woods. 100,000 is my 'normal' range, but I am only cautiously optimistic. The positive news here is that potentially 2-3 courses of Decadron could bring me back so it's good to know for future use.

I am just weary though because had I taken Ritux or another drug the 'credit' would have gone to those other drugs working and causing an increase in platelets.... OR, we wouldn't know for certain if it was the Decadron.

This is all one big cluster.

Deln:

The truth is that you don't know for sure. All you can really do is go by how the treatments are generally known to work. In this case, it is very odd that Decadron would cause counts to jump up like that a month after the last dose. It normally does not work that way. You'll have to see how the next few counts go.

The answer to 'when to treat' is simple. It's the same thing that I said in the very beginning: When you have symptoms. If you have wet purpura, riding it out for weeks is not wise.

I (and most others) can usually correlate counts with the treatment being used. Shortly after I was diagnosed, my counts were below 15k for about 7 weeks. I tried Win-Rho five weeks in a row with no rise. It is known to hit it's peak in 5 to 7 days and last a few weeks or months. It was a bust....counts never budged. I then tried Prednisone and within a week, counts were up to over 200k. It's known to work that quickly in people who are responsive. I was. Prednisone shot my counts up quickly several times over the years.

I had counts below 15k when I started Rituxan. Counts had been in the 20's and 30's for months, then dropped. Counts on the day of the infusions were something like 8k, 3k 15k, then spiked to 150k on the day of the last infusion. Again, within the general timeline for Rituxan response. I was treatment free for 13 months, (again, within the normal remission timeline) then had to treat again.

Most people are able to correlate response of counts with a treatment. When odd things happen that are out of character for a certain treatment, the change could be due to an illness or an antibiotic. Both can cause temporary drops and rises in counts. If it's not due to those things, it's just a weird fluke but if it's positive, take it! ITP can be unpredictable and that is well known. Late response to Decadron like that is rare and I'd be surprised if that were the cause for the jump, but anything can happen.

Thanks Sandi, perhaps the best method of trial and error is from ONLY DOING one treatment at a time, and giving it sufficient amounts of time. Then you'll know whether it was the treatment or not.

I am certainly not 'out of the woods' yet. As quickly as they rose (14,000 to 108,000 in 14 days) just as quickly they can fall.

At the same time, this could be what the Dr. thought in the beginning. That this was an 'episode' of ITP, prompted by viral illness, which had a potent antibody and needed 3-6 months to clear from my system.

One treatment at a time is the best way to go. I never was a big fan of throwing two or more treatments at a patient, especially newly diagnosed. After the tried and true methods have failed, sometimes combinations can work.

I suppose your doctor's theory could be simplified; it would be considered an acute episode of ITP (one that remits within a few months).

It will be interesting to see what happens next. Hopefully you're on the right track!

I agree Sandi

"Acute" episode is what he thought it would be in the beginning, but he didn't think it would take this long to resolve. (If it truly has resolved).

I think he didn't push any other treatment on me because he thought this would resolve itself and it was a matter of keeping me safe during this period of time.

That is pretty much the goal with everyone who has ITP. Keep the numbers safe until it ends. For some, it takes years and for some, it never does. You never know if it's acute or chronic until time goes by.

Del,
I wonder if your doctor noticed something about your particular condition that led him to believe it was acute and not going to be chronic or if he simply wanted to try the Dex pulses for a long enough time period to see if it worked. My doctor thought that high doses of prednisone would help to "reset" me, but no such luck. I truly believe it is the luck of the draw as to how long it lasts and how the body reacts to different treatments. Since there is no known cause, it seems impossible to come up with a "cure" or even an estimate of the duration or the degree of symptoms. All my fingers and toes are crossed that your situation was truly an episode and you can now forget all about ITP!

To my knowledge, there is no way to tell if ITP is acute or chronic until time passes. I actually went into remission within a year after I was diagnosed. I had three treatment free years, then counts dropped again and it was another five years and many treatments before I got remission again. What appeared to be acute at first was not. I didn't get counts done the last year and a half of that three years, but when I did, they were in the 30's and I don't know how long they were down.

Remission used to be defined as counts at normal level for six months without treatment. Partial remission was having safe counts for six months with no treatment. I don't think that has changed, but I'm not sure.

What I mostly see is no minimum time on "remission", but "sustained remission" is greater than six months. Unfortunately, there is some variability in terminology, which can make it difficult to compare studies or combine the data.

I may always be in a state of ITP with a destructive process, hence my normal platelets are 100,000.

The recent incident though may have tipped the balance to create greater than normal destructive process.

I will see where my counts are next week because I think it's still too soon to consider this a remission to be honest and as much hope as I want to give this I do not want to be severely disappointed if this is just a temporary spike in the numbers. But it is assuring to know that the pulse is responsive and I can do that for a while if need be.

Deln:

Low production is also a consideration. It's not always about destruction. For many, many years I thought that steroids stopped destruction. I've heard several things recently that stated that they actually aid in production. I admit I have a problem grasping that and have a hard time believing it, but it's what the experts are saying now. I heard that on a DVD from the PDSA conference last year and have since seen an article or two about it.

Yes, it is too soon to count on a remission; that is the realistic view. As for the Decadron pulses, if they work and you can tolerate it, there is no reason you can't continue with it. Most use a treatment that works as long as they can tolerate it.

Perhaps what made the doctor think this would cease on its own, is that I had Hemolytic Anemia episode last year. It went away over 3 weeks so perhaps he thought this was all part of the same problem.

My immune system is just messed up.

DelnStyle wrote: My immune system is just messed up.

I think we can all safely say that!

7/14/2015:

So I'm going to get my blood drawn tomorrow. I'm really hoping that my numbers have now normalized, and this episode of ITP can at least be put to bed, temporarily. If so, it's been about a 4 month ride until my body stabilized itself out.

We will see, I'll let you all know tomorrow.

Looking forward to it. Good luck!

7\15/2015:

Good morning everyone. Got my platelets checked today. They are at 98,000. So, I'm assuming I've stabilized, as this is my typical range. I'll probably wait another 14 days and get them checked again to ensure that I've been stable for about a month straight, which would likely indicate a remission of this recent ITP episode.

Deln,

This is great news!! I'm really happy for you. Just remember to take care of yourself in the meantime.

That's fantastic! I hope this is the end of it for you! Fingers crossed!

Great news Dein.