New Diagnosis of ITP

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Hello all, My name is Karen and I was recently diagnosed with ITP about 2 weeks ago, when I discovered that my platlets had dropped to 1,000 and I have never been so scared and emotional over the past two weeks. It all started with a Petechiae rash and just being tired, then within a week bruising started to develop and it was then that I knew something was very wrong. I went to my primary care who drew labs, the next day they called and told me to go directly to a hematologist. My labs the next day were <1,000, they started an IV dose of steriods and now I'm on a oral dose of 60mg daily. My levels jumped quick the first week, 9,000, then 20,000, now their only coming up like 4,000/wk, I'm at 32,000 now, and I'm so discouraged. I'm a 28 year old single mother of one who up until two weeks ago was healthy; working as a nurse, being mom, and still being a social butterfly and now I wonder where all this is going to take my life? I've turned to my church, but I still feel scared. I know previous to when all this started I had some complicating factors such as being sick and being on antibiotics, some minor surgery, as well as a few episodes of binge drinking, my doctor is aware, but he says its ITP, I just wonder if maybe this will pass. I see so many things on here, so which are helpful and some that are scaring me more, any thoughts? Thank you

For me, the hardest part of having to live with ITP were the side effects of the meds, especially Prednisone. Regardless, I was still able to do everything I always did....working, raising my kids, shopping, etc. I wouldn't say that I felt normal, but everything that I did was normal. Life does not have to stop because of ITP.

It can seem scary at first, but everyone gets used to it eventually and it just becomes a part of life. Many people attain remissions and there is always hope for that. In the meantime, you just have to remember to breathe and try not to let the side effects get to you. That's the hard part since it's a wicked drug.

Anything over 20k is a safe count, so if you can at least maintain that, you're okay. Many people do fine with lower counts, you just have to watch the symptoms.

Stick with us and keep reading. If you read something that is scary to you, ask about it. We can help you through it.

Im afraid platelets can yoyo up and down Karen. You will get used to it. In my personal experience the side effects of drugs are worse than having ITP. I'm also a nurse and found this booklet very helpful when first diagnosed
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Anne

Yea I just went to my doctors appointment yesterday, my count slightly dropped at 30,000. My doctor said the prednisone wasnt working good enough so he wants me to start Rituxan IV once a week to get the steriods down to a safe level. I'm starting that thursday, heard its a nasty drug, but i guess its the next step....This is all very scary, I know there is alot of people that have alot worse things going on out there so I try to remember that, I think its all just a shock more than anything. One week worrying about my next gym routine and making plans to the winery to the next week being told you have a blood disorder, its just a shocker is all. I also am single with not much family support, so my nerves are kinda shot to hell at this point lol and they say the prendisone makes u crazy, but I cant tell if its just me naturally haha. As a nurse I see it, just different being on the other side. Thanks for the support, much needed! And I am learning so much!!! Working on my faith as well!

Thank u anne!! I'll look it over!

Hi Karen,
I totally understand how you feel. I was diagnosed in February of 2012. Prednisone did not work for me so the next step was Rituxin. It worked great. I had no problems at all with the treatments. It's just boring because your there all day. Good luck on Thursday and please let us know how it goes.

Will do!! Thanks!

Had my first treatment thursday, going back this thursday for for lab work and treatment number 2. Hoping for high numbers!!! The medicine went in well, had a slight reaction, but nothing major. The medicine was so expensive though, my insurence covered 85% I was responsible for 15% which ended up being $951 just for the medicine, not even to infuse it, but hey if it works it doesnt matter to me they said they can do a payment plan. All in all, I'm praying to God this works, I was at 33,000 platelets thursday, so I will let you all know this week!! :woohoo:

Be patient. It might take some time to work. Glad the treatment went fairly smoothly.

I'm trying to be, I felt like all this just happened so quickly and out of no where, it was really hard for me to accept it all and I'm still taking it in one day at a time. My faith has been getting me through this, but I still wonder if this disorder is going to run my life, but I have faith it wont.

I think that most here can agree that ITP didn't run or ruin their lives. I think things become a bit more difficult for a while, but it won't ruin anything unless you let it. Just take one day at a time and try to keep things as normal as possible. It will help a lot in the long run. ITP pretty much blind-sided all of us; you will adjust.

Rituxan can take 4 to 12 weeks to work, so you might not see results for a while.

Karen..it does take a while to get your head around it but you will get there. Anne x

Karen you will do great - you learn to live your life.

I had only been diagnosed a short time and on 60mg of prednisone when we moved to Japan, from there we moved to Hong Kong.

Hope Rituxan does the trick - but as mentioned, be patient as it may take a while to work.

Good luck!

Thanks guys for the input, helps keep me realistic towards the results! Yea I just know I gotta take care of myself a bit better (by resting more), and that wild child side that I've loved for so long might not be as wild anymore lol, but that might not be the worst thing :silly: lol...looking forward to thursday though! Hope my body responds well!!

Karen be sure to let us know how things go Thursday!

Well had my second treatment of Rituxian, My platelets increased 19,000 after the 1st treatment, I'm at 52,000 now. I got in my feelings because I wanted a miracle, I'm learning not to do that to myself, its only gonna make me stressed and thats not going to help anything. I'm learning to accept that no matter how much I read or what we expect to happen that with ITP anything can happen and that everyones body responds differently so hope for the best, but be prepared for the opposite. I'm feeling a little tired today, I ran yesterday for the first time in a while and forgot to stretch, so my whole body is sore, but in the back of my mind I'm wondering is it from running or did my platelets drop? No other signs and I'm gonna keep an eye on everything just in case. Sorry guys having a bit of a depressing moment, I guess you could say I'm still getting the groove of this whole thing, I've actually been in high spirits for the most part, just still trying to wrap my head around things, gosh I miss my wine!!

52 is a pretty safe level! Here's too even more each week! Does he still have you on prednisone??

That's a good count! You know, the only sure thing about ITP is there is no sure thing about ITP

Yes to another week!! Yes still on 60mg of the prednisone, but honestly Ive been on it for like a month now I think I'm getting used to it, wonder how I'll start to feel once they taper it, I would think kinda crappy. I was down a little bit, but this week is better and I'm realizing not to put so much emphasis on something I can not control, and that quote is perfect for how I feel!!! Love it!!!

Prednisone for me was hell.I could not sleep, was hyperactive and it did no good . Coming off was terrible; I had dizziness sickness and diarrhoea. Make sure that you are tapered really slowly if you have to come off. For me Eltrombopag. ( Promacta ) has been the best option, no side effects, but my count still is not stable. If you can stay above 30 life can be quite normal.

I am down to 10mg with a slow taper and I still feel pretty awful, although at least I can sleep now. I was not able to get more then about 3 hours of sleep on 60mg and was completely depressed. Looking forward to a day without steriods!

Yeah last week seemed to be a bummer, had my 3rd rituxian treatment, count dropped by 29,000, so I'm back down to 23,000. I know that can happen though so I'm not letting it get to me to much. Last week was my birthday so I stumbled a little bit with the news, but I picked myself back up. I have a doctors appointment with my hematologist Wednesday to see whats next, if I'm gonna do the last dose of rituxian or not. I'm still on the 60mg of prednisone as well. I'm kinda getting concerned because I have a 7 day cruise towards the end of June, any inputs on that??

You still have plenty of time to get counts up for the cruise. Counts do not usually respond to Rituxan until 4 to 12 weeks after the first infusion. Sometimes it's a slow rise and sometimes it's fast. My counts were 3k the week of the third infusion and were 150k the week of the 4th. They mostly stayed up after that for 13 months.

Thank you Sandi!!! Needed to hear that! Yea it was an emotional ride last week, but I'm dealing with things better, I think it being my birthday just made it tougher, oh and the steriods lol, but I am trying not to be so scared!

Went up to 81,000 last week, I felt amazing! Went to a wedding and dressed to impress, best I felt in a long while, I even enjoyed a little bit of wine! It was Still feeling well, but I've had a sore throat the past two days, I'm hoping its just allergies and not my payback for the wine lol! They havent tapered my steriods, I have an appointment this thursday, so we will see then.

Good luck! I'm glad you had a good time.

Hi Karen,

I am mid-fifties, the token male in this group, apparently.... and just got released from the hospital this week after my THIRD (3rd) episode of ITP. Five years ago I had my first ITP episode, in 2010. I was like you, scared, admitted to hospital due to nonstop heavy nose and gum bleeding, with patechia and bruising also evident. After six weeks of drug treatments/dexamethasone etc I was released. Four years later (Nov 2014) I had a relapse, but minimal bleeding and patechia/bruising symptons. Went for TWO days of IV IG and was released; much less traumatic and seeming to be "cured".

Last week the same thing happened (for the third time) this time with MILD gum/nose bleeding but again the tell-all patechia and bruising which appear literally in hours. This time I immediately self-admitted as per my oncologist so 48 hours in the hospital for IV-IG and daily 100mg Prednisone seem to work for me.

It has been nerve-racking but even though I've had rock-bottom, extremely low platelet counts (around 1,000 each time) it's getting more manageable.

What's frustrating for me and my family is not knowing what causes ITP or how to prevent this. It seems with me to just flare up, hopefully for the last time.

Next week my oncologist is putting my on Rituxin which he feels may be a promising preventative type treatment.

The first ITP episode for me in 2010 (with six weeks hospitalization) was VERY traumatic; lots of swallowing blood since I didn't clot for weeks, my nose had to be cauterized.... I basically didn't respond initially to the normal ITP drugs--at that time the doctors posted my case in what they call the "Cancer Board" for doctors an online panel among oncologists/hematologists regarding suggested paths of treatment. In addition to the phalanx of medications--some quite new/radicAL I also took Dexamethasone, for me a very powerful steroid causing me and my family a fair amount of "roid rage" ie I was NOT my normal self!

It took WEEKS of "stepping down" after my release and my oncologist knows I do NOT like to be on it!

You mentioned you had other complications; (I don't drink) but I DID curiously take an antibiotic ONE WEEK before my 2014 (second) episode, so now I am flagged as potential reacting to Doxycyclin, prescribed then for an unrelated minor respiratory infection. Also in 2010 my primary physician had recently put me on Prevastatin (cholesterol medication) and I had an adverse effect to a similar Statin drug shortly before getting ITP for the first time; my doctors believe it MAY have had some sort of effect but, again, it is called IDIOPATHIC (unknown cause) T.P.

Do not under estimate the power of prayer.....we have become much stronger (myself, wife and son) and things are looking better, God has been very good to us especially as ITP can disappear and never have any recurrence, hope this is the case with you!

OK today is my 7th day of being on Prednisone (100mg daily) and only yesterday did I seem to notice the effects on my body....

I couldn't sleep last night; so going into the family room after tossing and turning and reading boring books in bed thought I'd "watch" some tv....that usually seems to help me sleep.

This TOTALLY irks my wife who says I need a good night's sleep WITHOUT a TV "blaring" and she promptly turns off the TV, causing me to wake up immediately! Must be a guy thing......


I do notice that I seem to have lots of energy, but it's really short bursts as I tend to do too much (I'm gardening, watching a lot of dogs, doing odd jobs around the yard, posting here, and checking online bargains, so multi-tasking has always been in my routine. Heck, I think I even first used the phrase "multi-tasking" thirty-odd years ago, I remember someone asking back then what the heck multi-tasking meant!


But with all steroids, there are usually negative side effects, no great surprises there. Last night the ever-so-sight "buzzing" I used to get only when taking Dexamethesone (stronger than Prednisone) came back. Like a tiny electric current I can actually feel, usually only when I'm trying to sleep...or sitting/resting very still and trying to relax.....it's like a very faint motor running somewhere in my head (or sometimes in my feet or hands) that I can't turn off or unplug.

For me the buzzing was a flashback to my first episode in 2010 when I really thought and acted as if I were a Super hero. I also notice that my eyesight improves slightly (I can easily see the stock market ticker parading by the bottom of the TV screen on financial news channels that I usually squint to read). Another side effect is ears popping, similar to when changing altitudes on a plane or in an elevator going way up or down.

Luckily those effects are rather minimal this time around, SO FAR....but I DO notice the heightened sense of confidence. I have this I'm-on-top-of-the-world, --near-euphoria--if you will, attitude.

And I love to talk normally anyway, so it's hard for me to remember steroids will, heighten that can-do attitude. SO imagine how freaked out I was this morning when, looking at my discharge papers from the hospital.....the dosage stated for daily Prednisone was ONE 20mg pill daily.

What.........screech.........I almost had a heart attack.

I'd been taking FIVE x 20mg Prednisones daily for a week....!!!!

Turns out to have been a typo (I checked just to be sure) and yes, 100mg IS my correct dosage, not the 20mg the hospital discharge papers showed. But wow, I cannot imagine my body's reaction to FIVE TIMES the prescribed dose of such a powerful drug. Shows you that it's always best to check, double check, and verify everything.

Enough ranting for today, I'll update you all tomorrow. Plants to take care of, dogs to play with, and I got a To-Do list a mile long.

---Jim

How are your counts responding to the prednisone? Is there any hope of reducing the dosage any time soon?
Rituxan typically takes 4 to 12 weeks to work.

Hi Rob,

Upon discharge after 48 hours of IV-IG my count was 12,000 a little unusual I'd thought as previously in 2014 when I had the same symptoms/similar counts and treatments after a 48 hour IV-IG drip (actually two back-to-back drips) they said that 30,000 platelet counts were standard for discharge.

I was so happy to get home though; the releasing hematologist (my reg. guy is away this week) said as long as they were heading up there was no need to wait for the 30,000 threshold so I flew out of there.

My wife was quite stressed and needed help running our small business which is seasonal and Memorial Day was busy enough without ITP......

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I had my first Rituxin treatment SCHEDULED for yesterday the 27th--but when I went in the office (Ga Cancer Center--across from Kennestone Hospital in Marietta, GA) was packed and seemed unaware......they did NOT have me scheduled; the first mix-up ever since I initially got ITP in 2010. I figure I've probably been to GCC fifty or sixty times at least over the years mostly for bloodwork, so that's not a bad record.

But what got me a bit worried was the $2,000 "for this treatment" that they wanted to put on my credit card before proceeding. I hesitated and phoned their financial dept. and they said a $700 payment would suffice. My deductible for the year (I have Humana, platinum-type plan) may kick in--especially after the costly IV-IG three days before--which hadn't been billed yet...."and it might not be 2,000 out of pocket every week, don't worry!"

So since they weren't expecting me--not sure if they even HAD the Rituxin available--I decided to reschedule when my regular hematologist returns Monday (June 1st 2015) as it was explained to me--and confirmed after I rediscovered this board two days ago--that Rituxin is a preventative/maintenance type plan rather than a short-term treatment for low counts.

As I mentioned, I was at 12,000 five days ago upon hospital discharge Sunday 5-23-15. My bleeding gums and nose (which were milder the past two episodes, Nov. 2015 and late May 2015) stopped, the patechia is almost gone, and the unsightly, extensive body-trunk and arms/leg bruising are slowly fading.

The Prednisone at 100mg daily I will assume my doctor will taper when he feels it's appropriate. I made the mistake of tapering a bit too fast in November when I let the prescription run out without checking with my doctor--I assumed then that the treatment tapering was over. I was on, if I recall correctly, either five or ten MG Prednisone then so he wasn't too worried, I was close to his planned stepping down ending anyway.

SO as is stands I have NOT had any bloodwork since Sunday's discharge, from what I've been reading here it's not a big deal but I thought it odd that a platelet count of 12,000 was sufficient for a substitute hematologist to release another's "regular" patient from the hospital.

I'll have a few questions regarding the Rituxin; I am to bring Demerol injections (already got 'em from the RX) in case I get "the shakes" as my hematologist thinks it's a possibility and he'd had good experience with Demerol treating that. Wondering if anyone here has experienced that.....It's just not like me to be happy putting strange (to me) drugs in my body without knowing why, when, for how long, what are the possible side-effects, etc etc. not to mention the costs.

As an aside I'd read the patent for Rituxin expires "mid-2015" so that may have a financial impact if generics become available. I just don't know how pharmaceutical/generics marketing enters the picture.

I'll post an update here after my first Rituxin treatment on Monday June 1st 2015. IF they don't forget to schedule me again



(BTW--thanks Rob, for the email and supportive words/tips!!!!)