PLATELET PANDEMONIUM - newly diagnosed with ITP

Wow, what a crazy ride! If my platelets which are at 4 were at 95 I'd be jumping for joy and letting it ride.

I hope things even out for you soon. Sounds like you are on the drug roller coaster.

Wising you the best and for a speedy recovery.

Light and Love,
Patti

Holy bruising, Batman!

I look like a heroin addict today (or at least, how heroin addicts' arms look in movies). Every needle stick from the past week is prominently marked with a dot or a bruise. I look awesome.

Platelet count for the day was *drum roll please* 22!
Which is actually the same as yesterday. Which is AWESOME. Because they didn't fall any more.

I know, I know... don't get excited about the counts. The counts mean very little. Pay attention to the symptoms (I've been listening, Sandi)!

The symptoms aren't good. My head is still pounding. My nose bleeds if I blow too hard. My gums bleed if I brush too hard. My lady parts (sorry, boys) have seemingly broken through the magical spell of my birth control.
But none of it is constant or severe bleeding. So I'm back at home after my doc visit today.

Tomorrow is Rituxan day. 2nd dose.

Patti and Jeff... I feel like I'm at the doctor WAY more than you guys are these days. Do I have a super aggressive doctor? Should I be asking them to slow down with some of this stuff?

What was everybody else's first month like?

Kay:

No, the symptoms don't seem too bad. Could definitely be worse, and are common to people without ITP (although it may not be normal for you). Just watch for any spontaneous bleeding that doesn't stop. Most do okay above 20k.

Yes, you have had a lot of doctor appointments. Hopefully that will slow down soon. It's usually that way with the newly diagnosed. Everything seems to be "hurry up", but it gets less emergent as time goes on. After a few months, I was managing everything by phone calls and standing CBC's....no real appointments unless a treatment was needed.

I can top that - October through December I had doctor appointments and tests 3 - 4 times every single week. That finally ended! Hang in there, it gets better.

My treatment is slower because I choose not to do Rituxan and have just been getting blood draws 3X'x a week until I see my new doctor on Friday.

Kay,

My platelet issue surfaced late Ocotber and early November. 40k and fell to 20K. I had several weekly blood test then referred to Hematologist/Oncolgist. Had a couple of visits with him and he has me on steroids, prednisone. He thinks I have ITP and not Leukemia. He says that I am in just too good of shape and that the rest of my blood work is perfect with the exceptiom of the platelets which were low and enlarged. I go back to the oncologist on Monday. I can't wait! I have been on the meds for 2 months and have gained about 45 pounds! I am not in race (triathlon) shape at this weight but I am still training about 2-3 hours a day. I hope the weight comes off fast!

I believe that my bruising is better and it seems that when I get a shaving nick it stops bleeding quicker than it did. One day a couple of months back I had one go for several hours! We shall see. If anyone reading this has any thoughts I would love to hear them. Beginning to end! I had no idea what any of this was until just a very few weeks ago. I am learning fast but I know that greatest part of our knowledge comes from the information of others! I would appreciate any input or suggestions.

Kay my thoughts are with you! Keep up the good fight girl!

Jeffrey

Kay,

Are you comfortable having more rituxan after the reaction you had to it last week? If not, please realize that it is okay to put off the treatment for another day or week or maybe even not get another rituxan treatment....you have likely already gotten the full amount of a "low dose" of rituxan, which has shown to be as effective as the more commonly used dose (in limited studies, of course).

When you said your doctor had given you WinRho on Monday, I thought that he was probably ruling out more rituxan for you...I don't believe the reaction you described is normal. I am not a rituxan expert, so take that with a grain of salt.

I did have a low dose of rituxan back in early 2008. Although it didn't seem to be effective, I have not had any treatments since then. My last count was 54K a few weeks ago. (I was at 38K in October and around 90K in November).

What are you doing to stay in the 100s? Thank you

tamar wrote: When you said your doctor had given you WinRho on Monday, I thought that he was probably ruling out more rituxan for you...I don't believe the reaction you described is normal. I am not a rituxan expert, so take that with a grain of salt.

My hematologist seems pretty convinced that since the Migraine from Hades didn't set in until almost 24 hours AFTER the Rituxan, they aren't related.

My neuro-ophth, my neurologist and my primary care finally came to the mutual decision that yes... the high doses of prednisone has relapsed my pseudo-tumor cerebri (aka idiopathic intracranial hypertension).... maybe. Possibly. More than likely... but they're not 100%
The only way to diagnose for certain is to do a lumbar puncture, but nobody is giving a girl with a platelet count of 22 an LP.

So we're gonna treat the IIH with Diamox, the pain with Vicodin, and the ITP with WinRho and Rituxan.
For now. I guess.

To be frank, as of yesterday, my give a damn is totally busted.
There isn't a day this week where I'm not scheduled for time in the infusion center or with a doctor.
Neuro-ophthalmologist, neurologist, primary, hematologist, phlebotomists... it's never ending.
I show up, I let them poke me, I answer some questions, I let them talk at me, I go home. Rinse, repeat.

I'm in some sort of Debbie Downer spiral that I can't seem to pull out of right now.
I'm hoping this doesn't last long. Because yesterday I was ready to walk out of the hospital and just wanted to refuse all treatment completely.

That's probably NOT helpful.

Kay:

They are being a bit aggressive. My counts were 3k when I started Rituxan and all I did was show up once a week for a CBC and Rituxan infusion. If your counts are above 20k, it's not all that necessary for all of the other pokes and prods.

As I said before in a thread somewhere, I was going through the same thing at the end of last year. I had to see a Rheumatologist, a Hematologist, a Podiatrist, a Pulmonologist, a Gynecologist, my GP, an Opthamologist, and Dentist. Every appointment found more problems so I had tests constantly. I had bronchitis, pneumonia and had a stress fracture in my foot. I was diagnosed with sleep apnea and dyspnea, and have an enlarged thyroid. Earlier in the year I saw a Neurosurgeon for spinal stenosis and had surgery for that. I thought it would never end. But it did. You'll get there too! Things have just spiraled out of control for a while so you just have to try to take the reins and make some decisions.

I have a friend with ITP who also had the pseudo tumor. It would act up every time she took Prednisone, so she stopped using it.

If you haven't gone to see your therapist, I highly recommend it.

My husband has advanced prostate cancer -waiting for results bone marrow aspiration--even after blood transfusions and being on decadron for 4 days --platelets up to 22 but within 7 days and being on Predisone 60mg twice a day --plates dropped to 17--white count stays normal -h and h like a bouncing ball and average of 3 units of blood every 3 weeks--has had no chemo since Nov 2012--I would apreciate any input--since the platelets count not comming up would that indicate--the predisone is not helping his reson for low plates--thanks Joanne

Joanne:

This situation is a bit different than what we normally deal with. A person who has just had chemo may have reasons other than ITP for the low platelet count. Did they stop the chemo because of the low count or was he done in November anyway?

17 and 22 are pretty much the same count. Platelets fluctuate constantly and there is also a margin or error or 5k or so. Sometimes steroids do not work....has the doctor mentioned N-Plate or Promacta?

Hi, I've tried IVIG and Rituxan, with prednisone (which i hate). Both treatments failed to keep my platelet count up. The Rituxan only elevated the count for 3 weeks (IVIG for two weeks) before it started slipping again. I am now scheduled to have a splenectomy on the 29th of this month. My surgeons are Stanford docs and have treated a lot of patients with ITP. They have had very good outcomes with splenectomy's. At this point I don't really see any other option. It's such a roller coaster. The docs are doing an open splenectomy as opposed to a lap because the spleen is enlarged and they say it is the better way to go with ITP patients. They want to get in there and make sure the spleen, and any ancillary spleens come our clean. They also want to be able to easily control any bleeding. By doing an open splenectomy they say they they have never (knock on wood) had a problem. So..... that's what I'm doing. I have been pestered by almost every one of my friends and family to get a second opinion. To go to the Mayo Clinic in Arizona. I am in Northern California. I know they are worried and concerned. But thanks to this support group, a lot of research and the Mayo Clinics openness to share their approach (online) to treating ITP patients, I feel confident in the treatment as its been going here. I hope this helps - All the best to you

Loretta,

Thank you for sharing your story. I wish you the very best. Please keep me posted on your progress and such. I think I may be right behind you, so to speak. I go back to my Oncologist tomorrow to see what the Prednisone has done (or not done) for me. I think my counts will be better as I do not seem to be bruising as bad and I have not had any additional bleeding issues. So I am optimistic tonight!

Jeffrey71

Kay,

Were are you? How are you? You haven't posted in days and I am worried about you. Let us know how things are going.

Patti

Welp, Patti... I am writing this to y'all from ICU in the hospital.

I was hospitalized yesterday afternoon with blood clots in my lungs. And a platelet count of 15.

I laughed so hard I cried. And then I cried. And then I returned to laughing. Then I cried again.
I still cannot believe that this is happening to me.

I was started late last night on Heparin and IVIg. Which makes me giggle. The whole gosh darn thing makes me giggle.
I am now being told that the plan to wait to see if the Rituxan will work is out of the window. It sounds like we're rapidly heading towards a splenectomy.
Oh, and I have to have a bmb in the morning.
I have no idea when I'm getting out of here. They said it's possible I could be transferred out of the ICU and into a normal patient room tomorrow. But that I'll probably be inpatient through the weekend. Ugh. Fail, fail, fail.

If you guys thought I was "over it" in my last post, you have no idea how OVER IT I am now. LOL

Which just begs the question... how does the girl with a "critically low" platelet count develop PE and DVT???? Has this EVER happened to anybody else?

Kay,hang in there. Thanks for updating us. Here's an interesting video from an ITP specialist that might be helpful, you'll want to to make sure all these questions have been asked and answered before going ahead with a splenectomy or really any other treatment:

www.insidermedicine.com/archives/VIDEO_If_I_Had_Recent_Onset_Nosebleeds_and_Easy_Bruising_Dr_David_J_Kuter_MD_PhD_Massachusetts_General_Hospital_3457.aspx

Kay:

I have recently been posting about that very thing. It happens more often than you'd think. Some people with ITP are prone to blood clots, even with low counts. There is another disorder called APS, which can go along with ITP, and it causes blood clots. You might ask to be tested for that. I have had the antibodies and it is estimated that 33% of people with ITP do have them. Factor V Leiden is another disorder that can cause blood clots.

There are some things that raise the risk of blood clots. One is the TPO's, and the other is splenectomy. You'll want to be careful before venturing into those avenues.

Hang in there. It will be okay!

Here is a thread about another ITP patient who had clotting.

pdsa.org/forum-sp-534/6-general-itp-discussion/21453-6-mp-zero-itp-still-the-front-runner.html?limitstart=0

Kay,

If you would like me to visit you in the hospital, please let me know what hospital and what room. I can't figure out how to email you privately. I look for KayL and don't find anyone.

Patti

Still hanging in here...

I was going to post more yesterday but I spent most of the day in a drug haze so thick that I couldn't remember the password to unlock my laptop.
(Don't worry... it's only the same password I've had for 3.5 years. You'd think muscle memory would kick in... but nope.)

So I finally get a chance now to sit down and type, and the pain kicks back in so I'm about to be lost in another haze.

Patti, I'm at MH in S.L.P. Room 485. I think, like, my immediate family is going to be camped out in my room for most of the day tomorrow, but I'll let you know...

Thank you, Sandi for letting me know about APS and Factor V. I'm adding it to my list of questions to check off with my doctor in the AM.

I hope everybody else is doing well. I'm going to try to read other threads before I slip into oblivion.

Kay,

Keep the faith. When you can handle it, I highly recommend reading the book "Wish by Spirit". It give a great perspective on ITP and it's treatment. I found it very inspiring and encouraging.

I am getting a blood draw on Monday and I don't expect it to be very high. My doctor has agreed to work with me on a natural route. I am at 40mg of Predinsone, down from 100mg. I will be off it in 2 weeks. Can't wait. I have getting my Homeopathic Remedy by Wednesday and I will let you know who things progress.

Love and Light,
Patti

Kay!

Hang tough! Keep us posted. We have you in our prayers!

Jeffrey71

Good Morning

Kay, I hope this post finds you doing better! I didn't know we 'ITP people' could have blood clot problems as well. My gosh, what a scary time you've had. Where are you finding information about homeopathic remedies? I'm interested because of the roller coaster I'm on with this too. I was scheduled for a splenectomy (today) and it was canceled because my platelet count went up. Yesterday it was 50. I'm currently not on any treatment. I finished chemo - Rituxan - about 5-6 weeks ago. It didn't look like it was going to work, but maybe it is. Hard to say. Anyway, I am SO glad you are out of ICU and on the road to feeling better.

Loretta

Loretta:

Rituxan is actually a biologic treatment, like Enbrel, Humira or Remicade. It's not a chemo. I hope your counts stay above treatment level. Good luck!

Kay:

How are you doing?

Time flies when you're on high doses of pain meds.

The short, short version of the story goes as follows; last Wednesday we removed my spleen (and her friend Mr. Accessory Spleen).
Recovery has been interesting thus far with the complicated factors of the blood clots and the anticoagulants, but save for the extreme exhaustion it's been going well.

FINALLY a week after my surgery, two weeks post being hospitalized for the pulmonary embolism (and 7 weeks after being diagnosed with ITP) I am at home.

My platelet count this morning was 141. Just a tish down from 155 yesterday.

I look forward to catching up with the stories of others once I can push the fogginess out of my brain this evening. I hope all are well with few symptoms and high platelet counts!

Until later,
K

Kay, I gather you didn't have a laproscopic splenectomy? Hope your recovery (from everything) goes well.

Hi Kay!

I have been worried about you! I am so glad to hear that you are recovering! Rest up and keep up posted. talk to you soon!

Jeffrey

Kay,

Glad you are doing well and platelets are up. I am creating they stay that way!

Love and Light,
Patti

Karen - I did have a laproscopic splenectomy. I usually bounce back from things very quickly, but this has been the slowest, longest convalescence of all time. It's been 2 weeks and I'm still very sore and struggling. Very uncommon for me and very odd.

I'm usually pretty long winded and a bit of a storyteller (which is not something people usually enjoy when they just want the facts, ma'am) so I'm trying really hard to keep my posts to "just the facts." My babbling, stream of conscious, whiny thoughts can all be found at authenticallykay.com

Anyway...
It's been two weeks since my splenectomy and a week since I've been out of the hospital. And if we get really nitty gritty, 3 weeks since my last dose of Rituxan. There were numerous bags of IVIG and 3 pints of blood tranfusion while I was in hospital.

My platelet count shot up to 155. After all of the drugs and the missing spleen, I was expecting higher but I was still happy. We were showing progress and momentum.

Yesterday, we found out that my platelet count was 57. From 155 to 57 in a handful of days, sans spleen.

GRRRRRRR. Not a happy camper.

Today, I was back in the hospital having my PICC line re-inserted (my PICC is my new best friend. I spent the day crocheting little arm bands to help cover it) and then was off for another IVIg treatment.
I think I've "broken" my doctor. She seemed quite deflated when she saw my platelet count yesterday.

I'm not really sure what the game plan is next. Trying to remain positive. Just have to remember that platelet counts can bounce around. But... it's still really disheartening to hear AFTER you've had this supposed serious surgery that was suppose to "fix" your problem.

On top of the ITP, still doing the daily anticoagulant injections for the pulmonary emboli.
If you really want to freak yourself out, try injecting an anticoagulant under your skin every day when your platelet count is just above 57. Every injection site has a bruise the size of a quarter right now. And they grow every day. It's very scary to watch.

Anyway, that's all I got.
Check in again, soon!

Thank you SO MUCH for all of the kind words and prayers. I hope everybody is doing well with high platelet counts and normal CBCs!