PLATELET PANDEMONIUM - newly diagnosed with ITP

I've been trying to write this post for two weeks, but I never know what to say so I've just been coming here and reading other people's stories. So far, it has done a good job of alleviating my fears so THANK YOU, THANK YOU, THANK YOU to everybody who has shared before me.

I'm 28 years old, female and I live in MN (please don't mention yesterday's Vikings game to me... ever) and I was diagnosed with ITP on Dec. 19th.

An unbelievably long story cut dramatically short, after spending an entire morning at work staring at my worsening "rash" wondering why Benadryl wasn't working, I went to my doctor and eventually learned my platelet count was 3!
I didn't believe her. I'm a regular blood and platelet donor with the American Red Cross. My platelet count is NORMALLY between 375-400, so I knew right away that something was seriously wrong.
I was hospitalized within the hour and immediately began an IVIg treatment (long before I even knew what IVIg was).
By morning, my platelet count was 1 which earned me another IVIg treatment that evening and then a platelet transfusion.

I was released from the hospital on the afternoon of Dec. 23rd when my platelet count jumped up to 33.
I was sent home on 100mgs of prednisone, antibiotics (for my surprise! h. pylori infection), zofran, prilosec and xanax.

Within the first few days, my platelet count rose to 61 and then started backtracking slowly.
On Thursday afternoon (Jan. 3), I had fallen back down to 35 which earned me another IVIg treatment.
Now we're slooooowly decreasing the prednisone (which makes me jump for joy, I'm now down to 60mgs) and I have a doctor's appointment in the morning to discuss next steps.

Honestly, I thought that this would be over by now. I know it's only been 18 days, but I assumed this was a complete, total fluke and after being released from the hospital things would go right back to normal and I'd forget this whole little event ever happened within a few weeks.
Except, that's NOT what's happening and now I feel lost and completely out of control with this whole ordeal.

So here I am, telling my story!

I have a few quick questions for the group, if you don't mind...

1.) For anybody who also had an h. pylori infection, did your course antibiotics effectively treat it? Or is that something you continue to deal with on top of platelet pandemonium?

2.) How long did it take you to relax back into a normal life routine? At first I didn't really take this seriously (not sure why), so I hadn't changed a thing, but within the past 48 hours I've suddenly become terrified with EVERYTHING. Mainly, catching a flu or catching a cold right now.

3.) How long did it take for your doctors to find a course of treatment that was effective in stabilizing your platelet count?

4.) If you've ever had a bleeding "incident" with a low platelet count, how did you handle it? Did you immediately panic? Did you manage to get it under control without having to go to the ER?

5.) If things are "under control" with your ITP now, how often do you do CBCs? Or, after a certain point, did you just stop routine checks?

I hope this messages finds everybody in high spirits with even higher platelet counts!

Thank you, in advance, for answering my questions.
-Kay

Hi Kay. I'm glad you decided to post.

First of all, the chain of events that each patient goes through depends on the reaction of the doctor. This also determines the patients responses to low counts and treatments. For example, some people have doctors that panic at low counts and they hospitalize the patient. Other doctors will just write a script and send them home. Neither of those responses are wrong, but it can set the tone for the patient and can affect their mental attitude.

Ideally, you should look at symptoms, not counts. Some people can be under 5k and only have some bruising and petechiae. Others can have nasty blood blisters, bloody noses, and blood in urine. The actions for each of those situations should be different, but some doctors get hung up on the number.

ITP can be chronic. That does not mean life-long. There are remissions that can last for years or a lifetime. Getting to that point can be challenging and some people never get there. If not, that's okay. As long as a person can maintain a safe count, 20k to 30k, they should be fine.

Very few people ever have serious bleeding episodes. The most common is a nose bleed, and most of the time it can be stopped at home if the person stays calm and patient. Women can bleed heavily during their periods; sometimes that is a problem, sometimes not. There are ways to control that.

Very few people have had platelet responses to treating H. Pylori. Maybe a handful of people have responded to the antibiotics. However, it has not been difficult to eradicate the H. Pylori.

Feeling out of control is normal. I will tell you how to get the control back. Read as much as you can and learn about the treatments. Be an advocate for yourself and make suggestions about treatments. Try to be a partner with your doctor. Most of the time, ITP can be managed. In time, life will seem normal again, but it can take time to get there.

Read this, it will help:

www.pdsa.org/forum/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Thank you for the response!

Reading that link did help calm me down a little bit. And it came at the perfect time, too.

Just got home from my doctor's appt. Having determined that the prednisone doesn't seem to be doing anything, we're going to keep tapering down to 0. Then she gave me a choice; rituxan or splenectomy.

I had prepared to discuss n-plate today, and I even asked her about it, and she said that is an option but that she's more a fan of tried and tested treatments FIRST and then we can discuss these newer drugs. Not really excited about the idea of surgery, I told her I'd prefer to try rituxan first.

Then my CBC came back and my platelet count is a 12. So I started crying (because I'm a big baby). It was 35 on Thursday. We did an IVIg treatment that afternoon and decided not to do a second one on Friday just to see if the one would hold my count. Guess not!

So I'm headed back to the hospital for another IVIg treatment in a few hours. And we'll do a second one tomorrow. And then on Wednesday, we're suppose to start the rituxan.
Except NOW I'm just frustrated and want to remove my spleen. 3 hours ago, I was completely attached to my spleen and the idea of removing it was the last thing I wanted to do. 3 hours later and I'm all "don't let the door hit ya on the way out!"

That was a lot to pack into one appointment. And I'm not excited for another 4 hours of IV world. I feel overwhelmed by this sudden flood of information.

But at least I'm outpatient! I like sleeping in my own bed... it's quite nice.

Kay - again, try not to get too hung up on the numbers. I know it can dictate treatment levels, but if your symptoms are minimal, you're okay.

You were given two very normal choices, both of which may or may not work. Doctors tend to quote good success rates for splenectomy, but those odds fall a lot as time passes. Many people relapse even after an initial good response. There are also a few long-term risks that can go along with splenectomy, and those are relatively new findings.

This is a recent video of one of the top ITP specialists in the world. You might find it informative.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Kay, I would suggest a second opinion before surgery....and maybe even before rituxan. Do you live in the Twin Cities? If so, I highly recommend the Masonic Cancer Clinic at the UofM. You will see a hematologist who teaches at the Medical School.

Has your doctor mentioned dexamethasone or Anti-D? Those are other options. No option is without side effects; I personally maintained for several years with occasional Anti-D treatments.

I'm pretty close to the U. Fifteen minutes w/o traffic.
And if I'm driving with purpose, I am only 50 minutes away from the Mayo Clinic (where my cousin is actually working on her masters in... well, something I don't understand at all).

My doc and I spoke pretty exclusively about rituxan vs. splenectomy this morning. When I brought up the long list of other treatments I've seen mentioned across the internet and on here, she said that she wasn't opposed to trying them but considered them to be a "last line of defense."

She said that for the majority of her ITP patients, a splenectomy fixed things with a quickness, that she only had two patients who didn't have success with the splenectomy, and that of those two, only one was continuing to hunt around with different medications.
It sounded like she was pushing me towards the splenectomy, and then she said that she wasn't opposed to the rituxan as a next line of treatment. That it was basically my choice.

I'm not opposed to a second opinion, but I'm so booked with appointments for the rest of the month that I don't even know when I'd fit a consult in!
Nor do I know how to go about getting one either. Do I just blind call a different doctor or clinic??

I wonder HOW LONG the splenectomy worked for. If the patients came out of remission, did they go back to the doctor that sent them to surgery? Would she have any info about how long it worked?
Erica

Here's a list of the doctors at Masonic:

www.umphysicians.org/cancercare/cancer-clinics/masonic-cancer-clinic/index.htm

My doc is Yvonne Datta, and I'm happy with the care I get from her. If you click on her name, you'll see that one of her specialties is Blood Disorders (Hematology -- Benign)
and one of her clinical interests is platelet disorders.

Those are the types of things I'd suggest that you'd be looking for in a second opinion doctor. I am guessing your first opinion was just a "whoever was available", but if that's not the case, maybe you are comfortable with him/her.

Hopefully someone will direct you to the recently updated reommedations for treating ITP, which were published by specialists who spent a lot of time compiling the available data about what works and how often it works. It would be worth a read before you do anything permanent (e.g., removing the spleen is permanent, and it also rules out Anti-D as a treatment.)

If you go with Rituxan, be aware that there are a few newer studies that indicate that a much lower dose of rituxan is needed than what most docs prescribe. So you might try one infusion instead of 4.

Tamara,

Thank you for this information. I am very interested in seeing your doctor here in Minneapolis. I was just diagnosed on December 28th. Platelets at 2. In the hospital 4 days, 2 Ivga this weekend. Haven't been above 12. Supposed to get bone marrow biopsy Wednesday which I am thinking of cancelling. Can't see the point. I'm sure I need a 2nd opinion.

I was thinking about tracking down others who live in Minneapolis and putting together a support group of sorts. If you are interested, let me know. My phone number is *********

Patti

Kay,

I feel your frustration, fear and overwhelm. I was diagnosed on December 28th with platelets at 4. Spent 4 days in the hospital getting ivga and prednisone. Left the hospital at 12, they dropped to 4 by Friday after 100mg of Prednisone per day. Had 2 ivga treatments this week and only went back to 12. Supposed to get a bone marrow biopsy Wednesday which seems pointless. I've now decided on a 2nd opinion.

I was very depressed on the weekend but after reading the posts on this site, I have lightened up! The count is the count and life goes on. I am going to live my life as I had planned and take each new step in treatment as it comes.

I live in Minneapolis and I would love to get together with others who are dealing with this disease. If you would like to talk, please feel free to call me at **********.
All the best,
Patti

Patti - I edited your phone number and e-mail address. This is a public forum, the entire world has access to it. I wouldn't want any crazies calling you or tracking you down. Please be careful with personal info. There are other ways, such as PM's, to handle direct contact.

For some reason, I can't seem to get PMs to work. However, I am in the chat room if anybody is still around...

Just got home from the hospital. Back in the morning for more IVIg.
All IVIg treatments and no play makes Kay go something something..."
"Go crazy?"
"DON'T MIND IF I DO!"

I now feel reassured that there are other people dealing with this in the Twin Cities. I would definitely like to meet some of you guys... we can share bruises and horror stories, plustig. This is all new for me as well.

Now... how on earth do I respond to phantom PMs????

I don't know what PMs are?

How do I get on the name exchange? What is the PMs?

Private messages. Kind of like "inner website e-mail" but they don't seem to be working or turned on for this forum... weird.

You have to do a certain number of postings before you can do private messages I think.
Erica

Here is a publication from ASH (American Society of Hematology) that might be helpful in sorting through treatments.

bloodjournal.hematologylibrary.org/content/117/16/4190.full.html

You have to have 10 posts before you have access to PM's. That won't take long. Then you can click on a persons name and the PM option will be in the upper right corner.

I'm not in MN but as far as the whole support group thing you should check to see if there is already one in your area. There's not one in my area (Nashville, TN) so I am starting one....I have already received the facilitator kit from PDSA and am pumped about getting it going.

I didn't know there was a facilitator kit. How do I find out if there is a group and how do I get the kit? I don't think there is a group here.

I got an appointment with the U of M doctor on Friday, January 18th. How about you?

Today was a big day of me calling anybody with any sort of medical background in my phone and discussing my choices with them (all while doing another fun round of IVIg), reading every applicable post I could in the medication/treatment forums, and just discussing how I felt with close friends and family.

Eventually, I decided that I trust my doctor and that I don't want to delay anything. I'm action and results oriented and I hate standing still. So I decided to not go for a second opinion.

And then I decided that I am going to give the Rituxan a whirl.
So my first IV treatment of that begins tomorrow morning at 9am (read: probably 10:30 haha).

Doing the research to make a decision felt a lot like last minute cramming for a test in college, but I was always good at studying so it wasn't too bad. If anything, I over-researched and then spent all day second guessing myself.

After having another chat with my nurse earlier this evening, she reassured me that I wasn't "going against the grain" with what my doctor had been kind of pushing me towards and that made the second guessing cease. Or at the very least 99.9% of me is satisfied with the decision I made. I'm sure that .02% will taunt me all the way up until the beginning of the treatment in the morning.

Tonight, I am happy because my friend is taking me out to the Guthrie to see a show to keep me from agonizing all night long. Very excited to go some place that ISN'T a hospital or a doctor's office.

I wish you the best of luck with your appointment on the 18th (but I'm sure we'll be in contact long before then).

Until tomorrow... kisses & best wishes,
-Kay

Kay, I am very surprised that your doctor claims to have many ITP patients, especially since she tried IVG so quickly and is recommending splenectomy so soon. You've not been diagnosed even a month! At my HMO, in a large California teaching hospital, I know I am one of very few ITP patients, and my hema has been learning along with me. Four years after diagnosis, I did have a splenectomy, though my doctor and I came to that decision together. I hadn't yet discovered this web site, and I didn't know then how low my chances for long-term success would be. (My platelets fell a couple of months after the splenectomy.)

I don't know that people are recommending WinRho (Anti-D) much now, but it is one treatment that doesn't work AFTER splenectomy.

I'd recommend you learn all you can and don't make any decisions that have such long-term consequences too quickly.

Kay:

Decision making in all of this is hard. I know, been there. The one thing I have always done during times of indecision is tell myself this: If I don't know what to do, do nothing. There is always time to think things through. The decision to have Rituxan tomorrow did not have to be made in a day. You can also start Rituxan next week. That does not make you a person who is not action-oriented; it makes you a well educated, cautious person.

Now having said all of that, I am not trying to talk you out of starting Rituxan tomorrow or make you second guess that decision. I'm just saying that before the next decision comes along, you don't have to cram....there is time. None of this can be fixed in a day no matter how much you want that. Having Rituxan for ITP is quite common these days so no, you are not going against the grain. It's just that this is a more toxic treatment than IVIG or steroids, so you need to be sure that this is the next logical step for you. It doesn't seem unreasonable to me, but you put a lot of pressure on yourself. You'll have to be patient with this one since results can take 4 to 12 weeks after the first infusion.

It is important to trust your doctor, but it's also important to trust your instincts.

Kay, I hope you enjoyed the play. I went to the Guthrie last Saturday and had a great time. Keep researching, and since you are going the rituxan route, I suggest googling low dose rituximab and seeing what's out there relevant to IT P.

You can check to see if there is a support group in your area by going to www.pdsa.org/join-the-community/local-groups.html .

That page also provides information on requesting information on becoming a facilitator if there is not a group in your area.

Kay,

I'm sorry I haven't been communicating with you. My registration on the site disappeared and I haven't been able to get in for 4 days.

How are you doing? Have you started the Rituxan? How is it going?

Let me know when you are online and let's chat. I can't figure out how to make it work.

I am sitting tight waiting for my new Doctor Appointment on January 18th. I've signed up to learn Transcendental Meditation and found a Homeopath who has a patient she has taken from 4 to 300.

Hate this damn Prednisone!

Patti

Hi Kay,
I don't log in all the time but just thought I could answer some of your original questions

1. I had Hpylori, found it when I got ITP, the doctor I have test for this with all ITP patients, it took two rounds of the antibiotics to get rid of, didn't help the ITP but glad to have it treated anyway, so a positive

2. took me about 12 months to relax about all this and just go on with life

3. I have had major bleeding and had to go to the ER and stayed in hospital for a week getting it under control, my count was 2k at that time, it was scarey but a cool, calm team of doctors and nurses helped that.

4. I have a count done every 12 months or if I feel a bit concerned just go and get one done, my current levels are in the low 100k.

I hope all this helps you and that you are going ok, read all you can here and don't read too much into some of the internet sites that make this worse then what reality is, these people have lived it and can tell you more then most sites can, good luck with the treatment you decide on.

I'M BACK! Or rather, the message board is back. Had to re-register, but I think everything is good now.

So it's been about a week since I posted last and boy what a week is has been...

Wednesday morning I headed in to the infusion center for my first dose of Rituxan and got a little surprise. My platelet count was 94! I was all ready to prepare a balloon drop with confetti until my doctor told me not to get excited. We were still going to proceed with the Rituxan as planned.

The Rituxan went mostly okay. The biggest side effect was an increased heart rate. Briefly, my heart started to "flutter" but then we stopped the IV for a few minutes and the fluttering stopped. We continued on with no problems.
I felt pretty sleepy afterwards and went home and promptly took a nap. Woke up and felt fine.

Until around 1:30pm on Thursday. When I thought my head was going to explode. From 1:30 - 6:30 I was in rolling waves of agony. Finally I decided to go to the emergency room.
CT was clear. Everything seemed fine.
Except for my platelet count (now 44) and the fact that I thought my brain was going to explode.

So they pumped me full of dilaudid (which I STILL think was overkill) and sent me home with vicodin for the pain. Told me to follow up with my neurologist soon.

Friday, Saturday and Sunday were all very similar. Waves of pain that would come and subside and then ramp back up. I took a lot of Tylenol and Vicodin and tried to stay out of the flu-infected ER.

Which brings me to this morning. I had a fun visit with my neuro-ophthalmologist who let me know that the optic nerve in my left eye was showing signs of swelling. And given the extreme headaches it is LIKELY that the high doses of steroids have triggered a relapse of my 2nd favorite annoying orphan disease, idiopathic intracranial hypertension.
And what are we going to do about it? For now? Nothing.

Which brings me to this afternoon. I thought I was heading into the infusion center for another dose of IVIg. After my CBC (platelet count 22) my doctor decides to do WinRho instead. Hello left field!
I'd have been more inquisitive about this new line of defense if my head hadn't suddenly decided to attack me.
So then I got a shot of morphine right after my WinRho and then sent off to have an MRI of my head which showed....

absolutely nothing.

Now I'm at home. Morphine is wearing off. Starting to feel sleepy. Definitely feeling overwhelmed.

I hope everybody else is doing well! Love the website redesign! Happy I can use the forums again!

Hang in there Kay!

Jeffrey