Anyone heard...

...that as an ITPer gets up in years it is more likely count will go down?

No, but I wish mine would! :blink:

I've not heard that unless it means that after a splenectomy the count will go down again with age as the liver takes over the job of the spleen. That is certainly true.

Thanks Sandi & Ann. I had heard as we age the chance of counts going down is high - not in relationship w/splenectomy though.

I have found mine are now dropping over the past 11 months. Just had some blood work done for the immunoglobulins & platelet count since hand surgery is less than a month off - although I'm at a good 87k last year this time my count was 164k [first time in normal range for a long time].

Maybe you're just getting back to your normal. Also, you might have been up and down a few times in that year and never knew it. Can't ever figure out why those platelets do what they do, but I've never heard ITP worsening as we age unless it's related to MDS or something else.

You are probably right Melinda, a quick google search found this, not about ITP but everyone

www.haematologica.org/content/99/6/953.full

It suggests that new reference ranges should be used dependent on sex and age. Interesting.

One suggestion I read is that it's a protective drop, as the chance of clotting events (strokes and heart attacks) goes up, the platelet count goes down. It's the same theory as the one for APS that Sandi likes. Wonder if it's true.

Ann, I was actually going to say that, but figured everyone was tired of the hearing the same thing over and over. That's why I want my counts to go down some.

What is your count now Sandi? I'm sure you must have said but I'm hopeless at remembering who said what. I don't have APS but for similar reasons I'm quite happy with my count being in the 80s. It seems to me to be the perfect count. I honestly don't want to be any higher.

It's been between 250 and 300 for years. Since I take daily Prednisone, that probably keeps it up some, but it's not enough to be the sole reason. Sometimes I slack off on the aspirin because of reflux and a lot of my other meds cause the same problem. I'd be happier with counts of 75 - 125. Can't make them go down though, so I'm stuck with it.

Even without APS, we all still have the risk of microparticles causing heart attacks and strokes, and I'm sure that risk goes up with age too.

So if the body does lower platelet count as we get older it isn't going to know an ITPers count is already lower than normal - so it could get lower then. You 2 give food for thought. Thanks for your reply!

In 11/2013 I was 128k - 4/2014 114k - now 87k
So we shall see - maybe hematologist will want to check again before hand surgery. Still waiting for the clotting test to come back & I believe one for the immunoglobulins - know the G was down every so slightly from last time.

Didn't mind those years when my count was coming back between 85-125k - but I do tend to worry if 60k or below.

Maybe your count will come down naturally in the years to come Sandi. If our theory is correct it should do. Mine was only ever 170 or so without ITP so I won't be surprised if I don't see over 150 again.

My IgG was slightly lower last time it was checked too so hoping it isn't on a downward trend. It was 4.3 (or 430) in April. IgA was dire and M was also down and only just within range too. M has never been that low before. Next check in September.

Melinda - my theory, which could be wrong, is that the body adjusts the count based on what it needs, ITP or not. That would be in relation to antibodies that it could detect, because of course people do have clots for other reasons. It's not so far-fetched since everyone produces antibodies against illnesses in order to fight it, so why couldn't it produce antibodies against platelets to protect itself against clots. It doesn't always work out as the perfect balance though, obviously, because some people do not have a detectable clotting risk and some people bleed uncontrollably. As time goes on, maybe more research will show more proof of the reasons behind ITP being a thrombotic disorder.

Maybe as we age, the bone marrow just can't produce as much and that is the only reason behind the platelet drop, and my theory is just a bunch of malarkey.

These bodies of ours sure are complex

Have a phone appointment with my hematologist next week - we'll discuss my recent blood work but from the email he seems fine with my count & surgery.

Ann my IgG was 433 this time - seems my A & M are ok.

These are interesting. Seems I've posted them before.

bloodjournal.hematologylibrary.org/content/121/24/4817?variant=full-text&sso-checked=1

bloodjournal.hematologylibrary.org/content/121/24/4938.abstract?ct

I wish I could find the original article about protective platelet drops that I had years ago. It was lost with the old Forum.

Good luck, Melinda!

Found it!

These data are consistent with the suggestion that severe thrombocytopenia might be a protective factor for the development of thrombosis in APS. Prospective studies are needed to determine whether low-dose aspirin or other drugs have a prophylactic effect on thrombosis in these patients.

bloodjournal.hematologylibrary.org/content/98/6/1760?variant=full-text&sso-checked=1

Geez, again, there is a statement that at least 1/3 of those with ITP have APA's. Quite a few of those patients go on to experience thrombotic events, especially when treatment brings counts over 100k. Yet they don't find it necessary to test ITP patients and most doctors balk at the request. I don't get it.

Sorry to hijack with APS, but who knows, ITP could be a protective measure against other clotting disorders too.

If what you said is true I sure hope I'm not one of the 1/3 of ITPers that have APS - have enough going on without something else

One article I read said: "People who have APS also are at higher risk for thrombocytopenia." Is this like which came first the chicken or the egg?

Will put that on the list to ask my hematologist when we talk next week. Trying to remember, think a hematologist had told me if APS hasn't shown up yet then no need to test - but that was a while ago and I can't remember if it was APS I had asked about.

Thanks for the articles Sandi - will get them read.

Either ITP or APS can come first, there isn't any order. My Hemo never wanted to test me and I asked a few times. He said that he doubted that I had APA's. I finally got my Rheumatologist to test and it turned out that I had Anticardiolipin Antibodies (one of the 3 APS antibodies). They can come and go, so one test won't do it. I've had both positives and negatives over the years. It didn't just show up, I had to be tested for it but have not yet had any clots and with any luck, will never have any. AT least I know that it could be a potential problem and would be one good reason to stay away from TPO's and splenectomy if the need should ever arise.

Sandy,
I just attended the PDSA conference this weekend since I was able to drive there. One of the men I was talking to told me about his daughter who had a splenectomy a while back (about 1-2 years) and she was having serious problems with blood clots. Somewhere in her neck area they were forming. She was 35 years old now and I think she was 33 when she had her spleen out. One of the doctors mentioned that once this happens, it's an on-going thing. Didn't quite understand it completely.

They also mentioned that the doctors are not jumping on the bang wagon to give Rituxan any longer due to some problems and the JC Virus (John Cunningham Virus) which causes memory loss. Also mentioned that N-Plate isn't good for people with a tendancy towards leukemia or MDS (that's probably me--brother had it).

It sure didn't leave a lot of options when they were done talking

DeeDee:

That sounds interesting, I wish I'd been there. Maybe I'll get the video once it comes out.

Blood clots after splenectomy can occur for several reasons, so I'm not sure what the daughter was experiencing. I do know that I'd rather deal with low counts than blood clots and yes, the problem can be life-long.

Slacking off on Rituxan is probably a good thing. The problem with the JC Virus and Rituxan is that it can lead to PML which is usually fatal. Rituxan by itself isn't all that risky, but when it's used after other immunosuppressants or splenectomy, the risk goes up. Sometimes doctors go for Rituxan overkill and use it for maintenance treatments or give 8 at a time and that makes me nuts since it's not necessary.

The problem with ITP is that it can be long-term and doctors are over-treating with one treatment on top of the other. Things seem to be changing though and lower counts are more acceptable so all of that may not be necessary. Over-treatment can lead to long-term side effects and problems that are more serious than ITP was in the first place. It's important for patients to be aware of side effects and the way a certain treatment could potentially affect them.

You are right, Sandy. I wish some of our hematologists would attend the conference once in a while to see what is happening. My hemo is right near by and he wasn't there. They have a lot of good information they presented. And, they don't seem as concerned with low platelets like they use to. They actually said you do not have to worry to fly with low platelets any longer.

They also mentioned that after taking certain treatments (can't remember all of them), you were better off having lower platelets through your life. I attended the conference 3 years ago, and I could notice a big difference in what they were saying at this conference. I was told (on the side) by one of the doctors not to take Promacta or N-Plate due to my family history of blood problems (at the conference in Denver).

I'm glad that you are aware of the potential problem that you could have with the TPO's. Hopefully, you won't have to think about treating any time in the near future!

I really want that video!

Another problem for us older folks is that our bones are more likely to break--esp. if we've controlled our ITP with prednisone. AND I think that because my body is older, my skin is thinner, and I am more likely to have nosebleeds than I was before. I have hoped that my platelets would go UP as I age, but that doesn't seem to be happening. They don't seem to be going down at a faster rate either though, but that's hard for me to check since my current hema wants me to stay at "safer" levels.

DeeDee, what kind of blood diseases have run in your family that make doctors advise you against Nplate or Promacta?

Karen, my Dad died at 50 of Aplastic Anemia (he was diagnosed by the Veterans--so not sure if it was completely accurate as it was a long time ago). My brother I think had MDS as he was having complete bone failure. He died at 56 years of age. I also have a couple of other cousins who died of blood disorders along with a form of cancer. My one female cousin first had breast cancer and I think the chemotherapy could have brought on the bone marrow problems.

I think I could take maybe up to 3 doses of N-Plate to quick start the platelets--but that would be it. I met a lady at the Conference in Denver who was on N-Plate and was being diagnosed with MDS (she, too, was of Italian descent).

I met a couple of others at this last conference who are like me: platelets fall to 1,000 after so many years and then have a hard time getting them back up. Once they are back up they are fine for some years again.

Sandy,

I also wanted to mention that the doctors at the conference stressed the fact that ITP patients should not be getting platelet infusions unless you are going for surgery or are "blue in the face" (as one doctor put it). Other people's platelets makes us refractory so that nothing then works. I think I will also get the DVD so that if I relapse, I will have the DVD to remind me about this!! Most all doctors push for platelet infusions. So that means, those of us who are at 1 should not be getting infusions!

karenr wrote: Another problem for us older folks is that our bones are more likely to break--esp. if we've controlled our ITP with prednisone. AND I think that because my body is older, my skin is thinner, and I am more likely to have nosebleeds than I was before. I have hoped that my platelets would go UP as I age, but that doesn't seem to be happening. They don't seem to be going down at a faster rate either though, but that's hard for me to check since my current hema wants me to stay at "safer" levels.

Karen I know someone who had to go on prednisone in 1989 for a different autoimmune disorder - unfortunately she has not been able to get off of it and has been on various doses constantly. So far no broken bones but she does have a nasty osteoporosis bless her heart - yes, they say it's from prednisone. She's older and has thin skin - it's horrible how her skin can be laid open from just a small/easy bump against something and she's left with a bad wound.

You said your hematologist wants you to stay at "safer" levels - what does he consider "safer", and what does he do to keep you in what he considers "safer" levels?

My last 4 counts, 8/2013-7/2014 -- 164k, 128k, 114k, 87k
My hematologist told me yesterday he has no problem with me having hand surgery in 2 weeks, he feels no significant change in my count, but it's up to the surgeon.

DeeDee Marie wrote:

Other people's platelets makes us refractory so that nothing then works.

DeeDee that is interesting - I knew a transfusion was wasted as our body just covered those "new"platelets with antibodies to mark them for destruction, same as our own platelets. But didn't know transfusions could make an ITPer refractory.

Melinda, I was surprised at this, too. This is new information coming out of the conference. I hope they video taped that part. It was Dr. Terry Gernsheimer who mentioned this during their talk period. I'm not sure if I told my doctor this if he would believe me?

This is very interesting information- thanks for sharing! Would love to hear more about it!

It makes sense though I haven't noticed it on the forum. It seems from the stories, people who are refractory are refractory from the beginning and not after platelet transfusions. But that doesn't mean that some ITPers out there could become refractory from transfusions and some could be naturally refractory. It would be an interesting topic heading to see if anyone has had that experience.

I have been offered platelets but have never had any- mainly because I am concerned about blood products. I don't know if they are thoroughly tested- maybe they are safe, they seem to be- just don't want the risk.

DeeDee, talked with my hematologist yesterday about upcoming hand surgery & platelet count and he told me that Heparin Induced Thrombocytopenia (HIT) can happen even if patient never has taken Heparin. Interesting bit of info too. (I don't take Heparin & never have and hopefully never will, we were just talking) Had I seen the info about platelet infusions before we talked I would have asked him about it - unfortunately we have been out of town and just got back so didn't see it before we talked yesterday.

posey I tell you WinRho was a blessing for me - only took one IV and I've been at good counts since, not normal though [except every once in a blue moon I'll get a normal count but doesn't last]. Sometimes we do what we have to do. I was not about to go on prednisone and be fat & fleshy & zitty & nasty & sleepy & ugly for our son's wedding However if I had ever been or am ever offered a platelet transfusion for ITP I would question it unless I was at death's door.

Frequent platelet transfusions can make a person refractory to the transfusions, that has been known for a long time. There are several reasons why transfusions are a bad idea, but I really haven't listed them in a long time. I haven't actually pushed that discussion for a while because I didn't know the current status about transfusions, sometimes things change. Apparently, the thoughts have not changed. That's good to know.

I'm not sure if you are saying that platelet transfusions make a person refractory to the transfusions or refractory to ITP treatments? If it's the latter, I have not heard that.

ooh perhaps I misunderstood that about "other people's platelets makes us refractory so that nothing then works". I thought it meant that no other treatment would work.

Sandi- Good to be reminded about possibly becoming refractory to platelet transfusions. What happens when a person becomes refractory? Do they have a reaction to the transfusion? or does it not raise counts? thanks