Starting the Journey

Well then, you have a lot to choose from on all of those corners. It can take a while to find a doctor that you are happy with and there is nothing wrong with that. I stuck with my very first Hemo because I was uninformed back then and just did what he said. Once I began to learn about ITP and make suggestions, he didn't want to go along with me at first. After a few months, he did start to listen to me and began telling me that I knew more about ITP than he did. I appreciated the honesty and never had a problem with him after that. If he had refused, I probably would have found a new doctor. He was pretty easy-going and we got along fine.

I've been through 8 or 9 Rheumatologists though in the past 12 years. I fired them because they were wrong one too many times or they tried to force meds on me that I did not want because I'd tried them already and they did more harm than good.

It's one thing if a patient doesn't know what they are talking about, but you do.

Labs and Hematologist this morning. Platelets at 608K. Great that they are up, not all that great that they are that high. Skipped my Nplate today due to the high numbers per the protocol. Kicking down the prednisone too 100 and tapering. I’m going to try a fast taper since I’ve not been on long. Maybe 10-20 less a day.

Crappy thing is, there is no way to know what is causing the bump. Counts were so low, with heavy pitechia and oral blood blisters that we kind of threw everything at it. 2 rounds of IVIG, Dex burst, Nplate up to 8mg/kg, and 120 prednisone after the Dex.

Blood work on Wednesday and Friday to monitor. At least it’s up and I’m feeling ok.

Hope all is well with everyone.

Oh wow. That is quite a high number. IMHO, I would only do Nplate '8' treatment when counts fall back down - and take into account that it takes a couple days for Nplate to start raising counts.

That's a fast taper, read up about adrenal insufficiency, plenty of stuff on this site about it

Hal,
I told them yesterday I wouldn’t take anymore Nplate until I was below the protocol. He wasn’t happy, thought I should take it just to maintain.

mrsb04 wrote: That's a fast taper, read up about adrenal insufficiency, plenty of stuff on this site about it

I’ve only been on the prednisone since yesterday following the Dex burst. I would just not take them but I don’t want a huge crash. Just 100 today, 80, 60, 40, so on. Plus it’ll get me through the holidays without much worry. Maybe even get to drink a little for thanksgiving.

Troy, what happened with your doctor / doctor's team? Did they suggest something out of protocol? They wanted to give you a lower dose next week even with higher (above 400) counts, or ?

Perhaps the following isn't an aspect of your consideration here. Please disregard if that is the case. IMHO, once rescue/other treatments are thrown into the mix while dosing for Nplate the letter of the law of the protocol falls apart. In effect, the rescue/other treatment itself is a violation of protocol. Further, the flow chart would likely be way too complex to try to specify rules for intermixed other treatments. To me it is inappropriate to use the rules of the protocol to recover from a violation of it. Experience should be the guide, in my opinion. LOL, stepping down off soap box...

Hal,
They wanted to just give me my normal dose even though I was at 608. Took me almost 30 minutes to explain why I wasn’t going to take it. Went through the protocol with him and the risk of a thrombolitic event. That was on Monday.

Wednesday went it and was at 500K. He didn’t even bring up the Nplate. He did try to convince me to stay at 120 on the prednisone. I told him I would taper through the weekend and would come in on Monday for the next bit of labs and Nplate shot. Don’t like prednisone, don’t like how it makes me feel and act around people. The whole point of Nplate is so I don’t have take prednisone. So, him trying to keep me on it at 500K is irritating.

With regards to the protocol, I’m only concerned with the thrombolytic event possibilities given the high platelet counts and then adding even more Nplate on top. I would love to know what is specifically causing the bump, but my main concern is getting a bump. Right now, I’m up but I’m not wanting to take even more Nplate with the risk of clotting so high due to the over abundance of platelets.
Monday will tell.

Totally agree with you about getting your count lower. I panic if mine goes over 150. All those big juicy platelets circulating around my body scares me.
I too hate high dose prednisolone as it renders me incapable of functioning normally.
Target count is 50 for ITP patients. Too many doctors seem to want patients to have a normal count rather than adhering to protocols. Fortunately I have a haemo who believes in following protocols and treating symptoms rather than the count.
UK guidelines for N Plate
Platelet count (x 109/l)
Action
< 50, Increase once weekly dose by 1 μg/kg
> 150 for two consecutive weeks, Decrease once weekly dose by 1 μg/kg
> 250, Do not administer, continue to assess the platelet count weekly
After the platelet count has fallen to < 150 x 109/l, resume dosing with once weekly dose reduced by 1 μg/kg.
My count was all over the place on N Plate. I gave it up as a bad job when my count crashed to 2.
Now I'm on Promacta and much more stable .

I agree, Troy. Blood clots are scarier to me than bleeding. N-Plate should be used properly and isn't one to play around with.

Troy, I also agree that you are doing the right thing. I'm not sure what doctors are thinking sometimes. I've seen it too often that they over-treat with Nplate. There have been people on this forum that have had strokes from Nplate. And they were in the same situation as you- counts already too high and then getting another dose. Sounds like you are doing a great job educating yourself and standing up to the doctors!
I read once on the Amgen website (can't find the quote now) that with Nplate, 80% of thrombotic events happen when counts are above 100K. I am also on Nplate and really like to keep counts around 50K, anywhere under 100K is comfortable.

Nplate with a count of 608? Uhg, that doesn't sound good for this doctor. But, sounds like you've got things under proper supervisory control.

I've read a lot of stories here on this forum. This simultaneous Nplate and IVIG treatments with sky rocketing counts is new to me. Cindy1 and now you are the only ones I know of. Sky high counts and then extreme crashes made some sense with spleen destruction (and a steroid response). But your responses are very different and the situation is not as clear.

Some drugs stop destruction. Others promote production. If both destruction is stopped and production is promoted then sky high counts, far above normal range, are a reasonable expectation. In your case obviously Nplate contributed to production but which drug blocked destruction?

Thinking about your previous treatments and responses. On the first treatment, IVIG with Prednisolone raised counts and thus blocked destruction. On the second treatment, IVIG with Prednisone did essentially nothing. Have I got that right? Also mixed in there between IVIG treatments, Prednisolone didn't work alone and Prednisone didn't work alone. Oddly, it seems as though for you only the combination IVIG and Prednisolone works - and neither alone.

There have been previous threads that talked about how some folks respond to Prednisolone but not Prednisone. Also that folks that do respond to Prednisolone alone may well respond to Dex too. So I wonder if it required all three drugs simultaneously to cause your super high counts. That it took Nplate, IVIG, and Dex.

It's a big question in my mind how fast counts are going to fall from here. Will it continue at this rate or slow down? It it continues then timing the next Nplate shot might be tricky. For example. Must they only inject on a certain day of the week, or is it flexible? Can a reduced dose be given to realign treatments back to a certain day of the week (back to weekly protocol) if a dose must occur on a certain day?

Hal,
Pretty dang fast evidently....2K at clinic today. From 608K to 2K in a week.
I’m now an inpatient again. Woo-freaking-hoo! Another round of IVIG is ordered and Dex in the morning. Nplate as soon as they can get here.

If I didn’t have the nose bleed, the blood blisters, and the petechia I wouldn’t go so hard with all the drugs. But the blisters are rough this time, making it hard to eat.

Time will tell.

Oh pooh - or words to that effect.
Are they going to do things differently this time? Administer the Nplate as the IVIG and Dex wears off maybe?
Do you think the Dex automatic taper is contributing to the instability? Counts fall as soon as the Dex starts auto tapering? Would a constant level amount of Methylprednisolone help?

coach this is what i would do..... i'd fly down to wherever there is a ITP specialist first get an appointment. talk to the secretary and explain that you live in another state...... have a hemo here(TX) agree to do what that specialist in the other state says to do.
because it seems to me you are like a dog chasing his tail.

Discharged yesterday at 116K.

Monday 2K - got NPlate, one bag of IVIG and 120 prednisone daily.
Tuesday 3K - 120 prednisone
Wednesday 5K - 120 prednisone
Thursday 3K - 120 prednisone
Friday 2K - another IVIG and switched to 40mg dexamethasone
Saturday 31K -40mg dexamethasone
Sunday 116K - 40mg dexamethasone

In for labs and Nplate shot today.

As for finding a specialist, I have. But my insurance sucks. It only covers Memorial Hermann affiliated phycisians. I’ve found two specialists through MD Anderson Cancer Center and they have my file. Friend of a friend deal. Waiting to hear from them. Hopefully that will help.

Until the past few months, I've seriously never seen people like you and Cindy (and a few others) who have such wacky counts and so many treatments at once. People would just go down the treatment line mostly one treatment at a time and if they got lucky, they would stabilize on one of the TPO's eventually. I can't figure out what's going on. This is very unusual to say the least. It seems like the people who initially have 3 to 4 treatments in the very beginning have the most problems long term. I'm not sure what that would have to do with it, it's just what I noticed.

My thoughts too Sandi. This 'kitchen sink' approach makes no sense to me at all.

I'm with you Sandi & mrsb04 - for heavens sake the persons body had to be in total shock and so mixed up with all that is being thrown at it. I think that most people forget it is their body and they have a say in what will go in it.

Both of you have been around long enough to see what's been going on for quite a while. I'm here every day, several times a day and read every single post. I have since 1998. I can't remember every person like I used to, but I remember the stories. I pay attention to treatments. Most people have responded well to the TPO's when they got to them and haven't needed the kitchen sink. The non-responders seemed to happen all of a sudden and come out of nowhere in the past few months. I don't even know if I'd call them non-responders; they do respond but not in a normal way. High spikes and low drops repeatedly, and oddly it seems connected to the initial treatment concoctions.

What needs to be remembered also is that a big jump in count is not good at all. I know nothing about TPOs and hope to continue that way [meaning I hope never to have to decide yes or no to use them]

coach i wouldn't wait for them to contact you i'd call them.
even if your numbers were to go up who would know why with this kitchen sink approach.
what they are doing to you is malpractice in my opinion.