Hello, Charlotte.  I'm Janet. 

I first want to apologize for not responding to you right away.  Even if I couldn't answer your question,  I should've offered the moral support that is one of the main goals of this group. I deeply hope you're still here to read this.

You may not realize how much I've already learned from you!  I had never heard of JC virus or testing for it.  That would've been nice to know before I agreed to take Rituxan.  It was it's own kind of nightmare for me, but at least I didn't get PML.

I'm soon to be 75, have had ITP since 2008, have been treated with prednisone, and was weaned off of it once it was clear that NPlate was going to work for me.  There was a point when my hema believed I should be taking both drugs, because my counts were fluctuating all over the map.  I decided on my own to contact one of the leading NPlate experts in the country who told me it works best on its own to avoid those wild fluctuations, and it shouldn't be partnered with other treatments.

In all this time, I've come to discover that the experts can have their theories, but ITP doesn’t give a fig about them.  I've seen multiple people here who've had to adapt the standard treatments to their own bodies' quirky responses and are doing fine.  I'm one of them.  I only need a miniscule dose of NPlate every 2-4 weeks.  Counts stay in the 60 to 150 range most of the time.  Best of all, I take prednisone as extra insurance against a.platelet plunge only when I need a surgical procedure or invasive screening test.

Did NPlate work for you before?  If so, it would be absolutely reasonable to ask about a slow taper off the prednisone to see what happens.  I completely understand your desire to be rid of it.  My bones can't tolerate any more onslaught than they've already endured. 

I hope this helps, at least a bit.  Again, I'm sorry to be so late.

Oh Charlotte (our granddaughter would have been named Charlotte had she been born on schedule but she wasn't and her parents best friends named there daughter Charlotte so they picked a different name so things wouldn't be confusing - it is a beautiful name, also a family name in our family) - anyway, NEVER say you are sorry on this site, we don't allow that     Your question was legit and WE are sorry we can't answer it. 

You have a lot on your plate bless your heart!!  I'm sorry I didn't reply sooner but I know nothing about Nplate - I've had ITP since 1989 and have just had prednisone and one IV of WinRho when a tetanus booster dropped my count to the gutter, have had no treatment for a number of years but my count is not in the normal range.      I'm not telling you this but I'm older than you and Janet and so happy when birthdays roll around because I've lived another year!

How low does your count go when you start to wean off prednisone?  Are you doing a nice slow taper? 

The one thing certain about ITP is there is nothing certain about ITP.  My ITP actually was caused by a Gamma Globulin injection we had to get before moving to Tokyo or my husband's company wouldn't have let us move - it's not a 3rd world country so we never knew why they required it.  And Gamma Globulin is like  IVIg, so something that should help ITP caused my ITP.  Crazy !

I'm sorry you are depressed but I can understand why!  Please be sure to come back and ask any question/s you want - if we can answer we certainly will - if we  can't we want to support you, encourage you and help you - you are part of our family!!   

Please keep us posted on how you are doing!!  Good thoughts going your way!!
Melinda

Margaret I'm sorry, I just saw your reply today - had no clue it was here!

How did your last count go?  I think maybe your hematologist was seeing how you would do off everything, maybe even go up in count - sometimes good things happen that we don't expect - but we should get a count if we are not comfortable with what is going on, our body our decision to get a count.

Talk to you later!
Melinda

I did ask my hematologist about age (I'm old) and a lower count - he just absolutely LOVES blood, and I really like him and trust him - he said not really.

Only treatments I've had since diagnosis in 1989 are prednisone and 1 WinRho IV - my count right now surprised me and is good, not in range though.  So I can't talk to any other treatments, sorry.

Your 2nd question, why not ask your doctors?  I have a friend who is in the 130ks and does not have ITP, no concern from her PCP.   My hematologist isn't concerned if my count stays stable, that's what I want stable, but last year my count dropped to the low 50s before gum surgery and then he wanted more blood work to keep an eye on it that it wasn't going to drop further.  

I hope someone with more knowledge than me will see your post and answer.

Good luck - keep us posted!

Thanks Melinda.
I had a test 2ish weeks ago - 135!! - just before reducing mycophenalate to 1 x 500mg a day. Haemotologist still/again wants to wean me off mycophenolate because he is unsure about long-term effects. I'm taking the line that this is his chance to learn about the long term - I come from a long-living family (mother 98, very healthy) so he may be able to track very long term (I'm 72 ) ...
😂
How are things with you?

Margaret I am so excited for you - 135K, WOW!!!    I am sending good vibes and thoughts and prayers that the increase continues for you!!!     I'm doing ok - I don't recall my last count, wasn't that long ago but I try not to remember them  it was good though.   Getting my 2nd Shingrix injection in a few weeks so hoping that won't do anything to the count.

What does your research say about mycophnolate?  How long has it been around?  Bless your Mom, 98 and healthy is amazing!!   My Dad passed just shy of his 95th birthday, but he had fallen and broken his hip and that is never good.

Your cat makes me smile - one of our GrandCats was black with green eyes - leaving his house one day I looked up and he was in the 2nd story window, the only reason I knew he was there was because of those 2 green eyes, it was so funny!

Hi I'm new to ITP, too. I had ignored my body and its complaints through my youth and thirties, and during trauma therapy began to realize all the discomforts i had that i had ignored or dismissed. I have allergies as well as psoriasis and other skin issues. I have been taking an antihistamine for almost twenty years to ease the symptoms. We thought i had asthma but after fifteen years i was actually tested and don't have asthma. (So now back to an unexplained cough that comes and goes. ) I do have irritable bowel syndrome (and since i don't remember not having it, it seems normal to me). All of this points to an immune system that easily turns on to myself, and the ITP is another case of my immune system turning and attacking me.

The western medical system isn't that great with autoimmune issues. The physical response show up in so many diverse ways; the causes are "stress" and/or dozens of other triggers that other people withstand with no issue. And while you feel miserable -- itching or aching or just tired -- you don't have something that demands response. (Except platelets going under 10k! Wow, that was a different response from a doctor!)

I did work through some food possibilities with a nutritionist, excluding for over a month then challenging my body with the ingredient. I have some sort of reaction with wheat that isn't celliac but is enough that i know that if i reduce wheat use i reduce inflammation.

Inflammatory bowel disease is a cluster of autoimmune issues - it's probably worth turning to the referral mill and getting a referral there.

The ITP revealed itself with petechiae last summer, and i just had my first bout where the platelets were measured low enough that i had to go to the emergency room for IVIg + dex. I had some interestingly anomolous heart rate variability spikes in the nights before the petechiae showed up and the night before they showed up i had a racing heart and was breathing heavily and woke myself up.

Don't know if that's something you'd like to track or not.

Mainly another ADHD person overexplaining! Hope your journey has been smooth these past few months.

Hi newly diagnosed person here,

last summer i had a number of episodes of petechiae and heavy bruising which cleared for six months and returned a few weeks ago. Since the petechiae showed up on a Saturday and it was barely any compared to during the summer, i went for the blood test on Monday morning and was down to 6k. I responded well to the IVIg & dex, and this past Monday had a platelet count over 200k.  We'll test weekly the next four weeks and then i am to go back to looking for symptoms and getting a CBC test to check if i've dropped.

If petechiae are the only symptom to trigger a CBC that seems ... late to wait - leading to another hospitalization or need for IVIg. And testing because i feel tired seems hard to tell from other exhaustion and fatigue.

I noticed a few things before the petechiae this time, but don't remember from the summer:

* shortness of breath -- i thought it was the cold weather
* a strange urine smell -- i thought it was just strange, or maybe dehydration? But i drink so much!

and my Samsung watch started yelling at me because my heart rate variability had shot up. Samsung watches started having an "Energy report" in the past few months. Mine mainly tells me i haven't done enough exercise or have done too much (as a sedentary person any little bit of exercise is a big change and the report overreacts). 

So i wondering -- and my hematologist Raj Kasthuri at UNC Health -- if sleeping heart rate variability  might be a precursor to a platelet drop and a signal of an ITP flare.

Cheers,
judi

I've had allergies and food intolerances. I used to have asthma but cured it through food, 'barley malt extract' mainly in biscuits and some processed breads was basically causing coughing wheezing and asthma. I can't eat too much yeast either. 

Hi
I recently joined.  I read a lot of the great info on the site.  
Here is my situation.
5 years ago I had internal bleeding and low hemoglobin.
My blood has been checked since.
They did fix the bleeding and my hemoglobin is much better.
Now 123 was 47.  In ER 5 times.
Now it seems my platelets are low.
Last year my numbers went from 138 in Jan to 117 in March and 79 at the start of Oct
The end of Oct went up to 86.
My Dr has booked me with a hematologist but not till July.
He did an ultrasound and my spleen is enlarged.
I am turning 70 and I don't like that idea.  I also read on here if
you are older it may not help.
I haven't had my blood checked since and I am wondering what 
my numbers are.  Should I get my Dr to check?
My numbers don't seem that bad.
Any advice?
Thanks
Don

Charlotte

I've had 2 spells on  NPlate both times my count was up and down like a yoyo. The second time my hip bones ached so much I gave it up as a bad job when my count dropped to from over 100 to 15. 

Hi, and welcome Don!
Do you have any symptoms, like bruising or petechia?  If you are at all worried, by all means get your doctor to send you for blood work.
I had my spleen out in my 40's, not because it was enlarged, I just wanted off the prednisone.  It didn't work.
Try not to worry until you see your hema dr.  Then between the two of you, you can discuss options.
Let us know if you do go for bloods and what your count is.

I had shortness of breath after dexamethasone.

I don't know about the heart rate variability but I have gotten linear results from Papaya leaf extract, 500 mg pills.

Its been 6 months, and I''m still working on it, though.

First, after 2 months, I added papaya leaf extract to dexamethasone treatment. In fact, the dex was first and I had no platelet response, Then I tried 1 pill a day of papaya leaf extract, and the platelets shot right up.

Then the platelets  went down, without papaya leaf extract. My hematologist wanted to try  second line drugs, and I let him know I wanted to try just papaya leaf extract. Or, actually, he ordered more dex, to do first. He didn't know what I did earlier. He was only giving me a few days, so I took 16 pills papaya leaf extract, by itself, in 3 days. The platelets went way way up, even past normal.

Then I tried one pill every other day, and that wasn't enough.

Then I tried one pill a day, and that wasn't enough.

Next was  4 pills a day, every 4 days, and that worked a little too well.

Then I tried 4 pills once a week, and that didn't work.

Now, I'm going to try 4 pills every 5 days. So still working on it, after 6 months.

Sorry if this doesn't exactly answer your question, but we've been going at this about the same length of time, and it seems like you're looking for a way of staying out of the hospital. I stay out of the hospital, and away from the steroids with papaya leaf extract. When I first had the bad blood count, it was off to the hospital, but no more, as long as the papaya leaf extract continues to work linearly, and predictably. 

As far as when to go for CBC, for me I go every 2 weeks, mostly, until I get things figured out more strategically. It takes a while, for sure.

I know someone who calls it the shot from hell. She hurts for a number of days after it, plus a headache. But it is the only thing that keeps her count decent, and hers will drop real fast so she gets the shot every week unless the count is good.

My shortness of breath was before the dex. Thanks for sharing!

Yes, if you are concerned get your doctor to have a platelet count done!!!!!   Don't stew over what might be, have it checked out!!!   Why is it taking you so long to see a hematologist?

 I'm sorry you are having this problem, keep us posted and can you see if your doctor can get you in to a hematologist sooner?

Good luck!!

We do tend to blame everything on causing a low platelet count. If your count is good now maybe the wait and see is ok. I did that and then had a tetanus booster that dropped my count to the gutter and had to treat. Have you talked to your doctor about your heart rate?

So research shows it has been used 20-30 years, mainly for transplant patients. My recent blood test showed 89, which is down a bit after halving the mycophenolate dose, but a good count. Today's haemo (I see two, depending on schedules) says long-term use is fine. Some transplant patients have used it for 20 years without problems.
Hope your shingrix goes ok. My mother had her second recently and had a strange reaction - the distinctive burning pain of shingles, but a completely different rash, just on foot and hand. Cleared up after 3-4 days. I didn't have such a dramatic side effect, just a bit achy and fatigued. Better than full-on shingles!

Hi,

Please see my new post on NPlate. I wanted to put it out there for all to see.

Thanks.
 

Hello All,

I was reading through past posts and just wanted to put this out there. I have personally seen Dr. Kuter in Boston a few times. He was part of the team that developed Nplate and has over 5,000 ITP patients. He told me that there are 3 types of ITP patients:

Those who have a platelet destruction only problem. (The platelets are only being destroyed due to some immune factor, most likely autoantibodies.)

Those who have a platelet production only problem. (Their body does not produce enough platelets.)

Those who have a combination of a platelet destruction and production problem. (Their body destroys their platelets and at the same time can't make the platelets fast enough to keep up with the destruction, which is why they seem to always have a low platelet count despite treatment.)

Your body makes a hormone called thrombopoietin (TPO). It is made by your liver and kidneys and stimulates your body to make platelets. Dr. Kuter told me that if you do not have a platelet production problem, NPlate will not help you as the whole purpose of the drug is to stimulate platelet production by mimicking the effects of the hormone thrombopoietin (TPO). 

Before you start Nplate, your hematologist should test your thrombopoietin level. If it is within normal range, this means that your body is producing platelets at a normal rate. Dr. Kuter told me that in this case, NPlate most likely will not help you. In my experience, most hematologists don't necessarily have this knowledge and you may have to ask for this test to be run. 

Perhaps this will help someone from unnecessarily taking Nplate if their ITP is destruction only based. It can come with some nasty side effects.
 

That's great to learn, that there is a test to determine  thrombopoietin levels, AND, that if your levels are up you don't need or want a drug that is a  thrombopoietin receptor agonist! My hematologist started that talk, of second line choices,  before I figured out the papaya leaf extract, and he never mentioned a thombopoietin test.

Also great to have the 3 types of ITP explained. Thank you.

So it’s been a few months and my Wife’s numbers have increased above 200 and held, so we dropped down to Doptelet 40mg 3x per week and 20mg 4x per week.

She dropped down to lower 100s, but then started rising again to where her last reading was approximately 190. 

It has now been three weeks since that last reading. After that appointment, we decided to start taking Black Raspberey powder to try and attack inflammation from yet another angle.

Hoping to come down on the Doptelet again, but just very grateful to actually have a life again…huge difference from that whole first year.

Margaret, I agree 89k is a good count!  And that is with a 1/2 dose of your mycophenolate.   Good to hear it has been used 20-30 years without problems!   Let us know when you have another CBC!

Strange reaction your Mom had with #2 Shingrex!   I have that, without the rash, since having Shingles May 2024 - no rash but the post-pain.  Seriously, Shingles is the pits!!

Talk care!
Melinda

Yes, my hematologist is also curious whether heart rate variability might be a signal of platelet dropping (not a cause). I hope to find something that might be a useful signal of platelets dropping under 30k before petechiae show up.

P.S: I am just changing care team ...

Hi MommaBear
Sorry to hear your story.
In my opinion, switching to Nplate or Avatrombopag is a great idea if you don't have a medical contradiction. I assume you have good insurance that covers your IVIGs so getting this covered should be possible.

Regarding your concern about ditching prednisone, from what I remember +80% of patients on these meds do so. The few still needing to take pred will usually take less than 5mg as both medications have a great synergy.

Its difficult, but if you are feeling unusually tired, that is a clue. I just now, with my latest CBC, thought my platelets would be high, but admittedly was feeling like they are low. Well,...they ARE low... Seems like the papaya leaf extract let me down a bit this time, unless my platelet number got lower than I realized, before I had the latest round of pills... And therefore is taking more to bump it back up... Disease of questions...

One thing that I do is speed typing as a hobby. My typing has not been going too well, for me, so that is a clue also. So, if you want to know how you're doing, your wpm might help you to get an idea. Just not the same fluidity. So if you happen to have a hobby that deals with numbers and quickness, that could help. I suppose any video game. Speed typing is like a practical video game.

Hi Coasterdon,
You should consider asking your doctor for a complete blood count soon to monitor your platelet levels, given the past fluctuations and enlarged spleen, rather than waiting until July for the hematologist.

Hi Susie,
You could ask your hematologist if delaying treatment and monitoring your platelet counts is safe instead of starting Dexamethasone.

Hi Judi,
Your idea is plausible but unproven, so consider tracking it with your Samsung watch alongside platelet counts and discussing it with Dr. Kasthuri as a potential early warning tool.